Report on the Second World Summit of Brain Tumour Patient Advocates 2015 by The International Brain Tumour Alliance (IBTA)

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Report of the

Second World Summit of Brain Tumour Patient Advocates By Dr Stuart Farrimond International Brain Tumour Alliance (IBTA)

Sitges, near Barcelona, Spain 25 - 27 October 2015 1

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Acknowledgements The International Brain Tumour Alliance is grateful to the following companies for their support of the Second World Summit of Brain Tumour Patient Advocates.

In addition… We are very appreciative of the wise advice, help and support provided by the IBTA’s 14 Senior Advisors on this project: Jean Arzbaecher, Jenny Baker, Rosemary Cashman, Maureen Daniels, Stuart Farrimond, Jennifer Gouchie-Terris, Carol Knight, Carol Kruchko, Sharon Lamb, Mary Lovely, Mary Ellen Maher, Gordon Oliver, Sally Payne and Chris Tse. A big thank-you to our medical specialist participants who made time in their hectic work schedules to join us in Sitges and to generously impart their knowledge: Professor Garth Cruickshank, Dr Joan Seoane, Professor Roger Stupp and Professor Martin Taphoorn. Grateful thanks go to Ms Christine Quah, Manager, Global Accounts, HelmsBriscoe (www.helmsbriscoe.com) for her invaluable help in finding and securing our Summit venue. Many thanks also to the Melia Sitges Hotel, Sitges, Spain, for their patient and always-efficient help with our accommodation and conference arrangements. The Second World Summit of Brain Tumour Patient Advocates, a project of the International Brain Tumour Alliance (IBTA), is a wholly independent activity and has been conceived, planned and carried out by the IBTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org © International Brain Tumour Alliance 2015 - Report of the Second World Summit of Brain Tumour Patient Advocates All photographs © Katherin Wermke at Barcelona Photographer 2015, www.barcelonaphotographer.com IBTA Summit Report graphic design by Edwina Kelly of Edwina Kelly Design, edwina@edwinakellydesign.co.uk The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this report. The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information. The information contained in this report is for educational purposes only. The material in this report is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or other healthcare professional. Company sponsorship of the Second World Summit of Brain Tumour Patient Advocates does not necessarily imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies. The views expressed by participants at the Second World Summit of Brain Tumour Patient Advocates and included in this report are not necessarily those of the International Brain Tumour Alliance. It is not the intention in this report to print any matter that discriminates on the grounds of race, religion, sex, sexuality, belief or disability.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

About the International Brain Tumour Alliance (IBTA) The International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro-oncology.

INTERNATIONAL BRAIN TUMOUR ALLIANCE The IBTA brings together experience and expertise from all over the world with the aim of enhancing the well-being and quality of life of brain tumour patients and their families. We work with Alliance supporters, patient organisations, researchers, medical professionals, pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others involved in the neuro-oncology community to: encourage the establishment of brain tumour patient groups in countries where they donâ&#x20AC;&#x2122;t yet exist

promote collaboration on programmes and projects to benefit the brain tumour community

advance worldwide awareness of this disease by developing and promoting activities highlighting the challenges and needs of patients and carergivers

disseminate knowledge, information and best practice

help shape health and research policies at national and international levels

celebrate the courage and achievements of brain tumour survivors and caregivers

Real changes and improvements in health and support service design and delivery come through involving people directly affected by brain tumours.

Our aim is to bring together the international brain tumour community as a strong global voice urging governments, regulators and the research and medical communities to better understand the concerns and perspectives of people living with this devastating disease. We place patients, their families and caregivers at the heart of all we do, celebrating their courage and achievements, sharing knowledge and experiences and working together for progress. We encourage and support established brain tumour patient organisations; we do not aim to replace or supersede them.By working together we identify collaborative actions across the international community and work towards our vision of a world free from the fear of brain tumours.

The International Brain Tumour Alliance has contacts in the following 111 countries: Afghanistan n Albania n Algeria n Argentina n Australia Austria n Bangladesh n Belarus n Belgium n Bhutan Bolivia n Bosnia- Herzegovina n Brazil n Bulgaria Cameroon n Canada n Chile n China n Colombia n Congo Costa Rica Croatia n Cuba n Cyprus n Czech Republic Denmark Dominican Republic n Egypt n Eritrea Estonia n Ethiopia n Finland n France n Georgia Germany n Ghana Greece n Guatemala n Hong Kong Hungary n Iceland n India n Indonesia n Iran n Iraq Ireland n Israel n Italy n Jamaica n Japan Jordan n Kenya Kyrgyzstan n Latvia n Lebanon n Libya n Lichtenstein Lithuania n Luxembourg n Macedonia n Malaysia Malta Mauritania n Mauritius n Mexico n Mongolia Morocco n Myanmar n Namibia n Nepal n New Zealand Nigeria n Norway n Pakistan n Panama n Paraguay Peru n Philippines n Poland n Portugal n Qatar Romania n Russia n Saudi Arabia n Serbia Singapore Slovak Republic n Slovenia n South Africa n South Korea Spain n Sri Lanka n Sudan n Sweden n Switzerland Syria n Taiwan n Thailand n The Netherlands n Tunisia Turkey n Uganda n Ukraine n United Arab Emirates United Kingdom n United States Uruguay n Venezuela Vietnam n Yemen n Zambia n Zimbabwe

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Our vision, mission, purpose, values and principles

Our vision A world free from the fear of brain tumours.

Our mission To advocate for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and carers hope - wherever they live in the world.

Our purpose Through facilitating collaboration within the global brain tumour community, we provide a strong and collective voice for brain tumour patient organisations across the world.

Values and principles The IBTAâ&#x20AC;&#x2122;s work is underpinned by the values of solidarity n equity n honesty n integrity n openness n transparency n hope n

We are committed to strengthening the evidence base for patient-centred treatment and care, in particular through the telling of and promoting of peoplesâ&#x20AC;&#x2122; experiences and perspectives.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Report of the Second World Summit of Brain Tumour Patient Advocates Executive Summary Sitges, near Barcelona, Spain 25th, 26th and 27th October 2015 With more than 70 participants from 27 countries, the Second World Summit of

The Main Findings

Brain Tumour Patient Advocates took place

THE main findings from the Second World

Summit of Brain Tumour Patient Advocates

perspectives need to be better understood

were that:

and appreciated as they may influence

Brain tumours spell “challenge” in any

language. n

One of the biggest and most significant

Differences in cultural beliefs and

approaches to brain tumour patient support and care. n

The panel discussion session

hurdles facing brain tumour patients today

“Research and Development for Brain

is equitable access to the latest therapies.

Tumour Treatments – Thinking Outside

International support, encouragement

the Box” included a diverse group of

and involvement is urgently needed for

stakeholders: a caregiver to an adult

brain tumour organisations working in

patient, a representative of a pediatric

developing countries, such as Cameroon,

not-for-profit brain tumour organisation,

Zimbabwe, South Africa, The Philippines

a medical professional, a brain tumour

and India.

researcher and a representative of the

The care, support and treatment of

pharmaceutical industry. This session

pediatric brain tumour patients pose

was particularly highly-rated by Summit

their own specific challenges. As was

participants for its impact and relevance,

clear at the Summit, in many parts of

demonstrating the value and importance

the world facilities and services for this

of involving all stakeholders in decisions

age group are significantly sub-optimal.

and actions relating to the treatment and

Stories recounted in the pediatric session

care of brain tumour patients.

were particularly moving and all of these

presentations were rated very highly

advocates/leaders from non-profits and

for impact and relevance by Summit

charities around the world to have the

attendees on their feedback forms.

opportunity to meet regularly together

There needs to be a much greater focus

It is crucial for brain tumour patient

to discuss their challenges, solutions,

on quality of life (QOL) issues for brain

opportunities and accomplishments.

tumour patients, both in the clinical and

the research setting. Better tools need to

of Brain Tumour Patient Advocates was

be developed to measure QOL, perhaps

highly rated on feedback forms as being

making increased use of advances in

“very valuable”, “very relevant” and “very

digital technology and communications.

well organised”.

OVERALL, the Second World Summit

from 25th to 27th October 2015 in Sitges, near Barcelona, Spain. The conference was an unequivocal success and provided a unique opportunity for patient advocates to share information, exchange best practice and discuss and debate some of the pressing topics in the field of brain tumours today. Attendees renewed acquaintances from the First World Summit (in 2013) and forged friendships with newcomers who attended the Summit in Stiges for the first time. In addition to patient advocates (some of whom were patients or caregivers/ former caregivers), the Summit participants included a number of medical and research professionals, and representatives of the pharmaceutical industry. The presence of a diverse group of stakeholders at the Summit ensured that there was an educational, collaborative and transparent focus on some of the biggest issues facing the international brain tumour community today. To this end, the main topics discussed were: the latest and most promising brain tumour therapies, encompassing neurooncological, surgical and supportive care approachesquality of life issues and measures and how they are perceived in various regions of the world n

brain tumour case studies in the context

of country-specific settings (specifically Cameroon, France, Croatia, India and Turkey) n

healthcare systems and regional

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

challenges, including access to therapies, support and information

All of these sessions and discussion

Each attendee also had the opportunity

groups saw hearty debate, leading to a greater

to attend four practical workshops of their

The Brain Tumour Patients’ Charter

understanding among the Summit participants

choice over the two days of the Summit. These

of Rights (2010) and its relevance to

of the various perspectives in the international

provided informal and interactive opportunities

stakeholders today

brain tumour community. The stories, opinions

to share skills and knowledge, and develop

and discussions shared at the Summit

new competencies. Summaries of the

research and development for brain tumour

emphasised the crucial importance of everyone

workshops are included in this report.

treatments

– patients, caregivers, advocates, medical

‘thinking outside of the box’ regarding

pediatric brain tumours: sharing

In addition to the business of the packed

professionals, academia and industry – working

two-day programme, participants also had time

experiences from the United States, Japan,

together to improve areas of unmet need in the

for some valuable networking with one another

South Africa, Italy and Spain

neuro-oncology field.

during breaks and meals at the Summit hotel. n

Above: Participants at the IBTA 2015 Summit in Sitges, Spain, represented 27 countries: Australia n Belgium n Bulgaria n Cameroon n Canada n Croatia n Cyprus n Denmark n France n Germany n India n Ireland n Italy n Japan n Lithuania n Netherlands n New Zealand n Philippines n Singapore n South Africa n Spain n Sweden n Switzerland n Turkey n United Kingdom n United States n Zimbabwe

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Second World Summit of Brain Tumour Patient Advocates Melia Sitges Hotel near Barcelona, Spain 25th, 26th and 27th October 2015

Summit programme Time Topic/Activity

Hours/ Speakers and Facilitators Minutes

Format

SUNDAY, 25th OCTOBER 2015 14.00 - 19.00

Arrival and Summit registration, Melia Sitges 5 hours IBTA Team Hotel, Sitges, near Barcelona, Spain

19.00 - 21.00 Informal welcome buffet 2 hours All Noray Restaurant, Melia Sitges Hotel

MONDAY, 26th OCTOBER 2015

07.45 - 8.30 Summit registration, Melia Sitges Hotel 45 minutes IBTA Team (front lobby of hotel near reception desk) PLENARY SESSION 1 (MESTRAL 1+2+3) 08.30 - 08.45 Official start of the Summit, welcome message, 15 minutes Markus Wartenberg (Germany) housekeeping, Summit format and organisational issues 08.45 - 09.00 09.00 - 09.50 09.50 - 10.50

An overview of current brain tumour practice 60 minutes and new advances in brain tumour treatments

10.50 - 11.15

COFFEE/TEA BREAK

PLENARY SESSION 2 (MESTRAL 1+2+3)

Plenary

An introduction to the International Brain 15 minutes Kathy Oliver (UK) Tumour Allianceâ&#x20AC;&#x2122;s role, mission and activities Kick off to the 2015 International Brain Tumour Awareness Week. The goals of the Summit.

Plenary

Short introductions from each participant

All

Plenary

Professor Roger Stupp (Switzerland)

Plenary

50 minutes

25 minutes

11.15 - 12.00 Quality of life for brain tumour patients 45 minutes Professor Martin Taphoorn (The Netherlands) 12.00 - 12.45 Neurosurgical 45 minutes Professor Garth Cruickshank approaches to brain (United Kingdom) tumour treatment

Plenary

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Speakers and Facilitators Minutes

Format

MONDAY, 26th OCTOBER 2015 (CONTINUED) 12.45 - 13.45

LUNCH BREAK Noray Restaurant, Melia Sitges Hotel

60 minutes

PARALLEL WORKSHOPS - SESSION A 13.50 - 14.35 Parallel Workshop 1 - 45 minutes Facilitated by Susan Pitt (Australia) Peer/patient Support (MESTRAL 4) and Rosemary Wormington (United Kingdom) 13.50 - 14.35 Parallel Workshop 2 - Presentation and 45 minutes Facilitated by Kathy Oliver moderating skills for patient advocates (United Kingdom) (CATALUNYA) 13.50 - 14.35 Parallel Workshop 3 - Patient advocacy 45 minutes Facilitated by Carrie Treadwell involvement in clinical trials (LLEVANT 1) (United States) and Barrie Littlefield (Australia) 13.50 - 14.35 Parallel Workshop 4 - Fundraising for brain 45 minutes Facilitated by Wendy Fulcher tumour research (MESTRAL 1+2+3) (United Kingdom) and Sharon Lamb (United States) 13.50 - 14.35 Parallel Workshop 5 - Branding, marketing and 45 minutes legal aspects for your patient organisation to consider (MESTRAL 1+2+3) PARALLEL WORKSHOPS - SESSION B 14.40 - 15.25 Parallel Workshop 1 - Peer/patient Support 45 minutes (MESTRAL 4) 14.40 - 15.25 Parallel Workshop 2 - Presentation and moderating skills for patient advocates (CATALUNYA)

45 minutes

Workshop

Facilitated by Gordon Oliver (United Workshop Kingdom) and Markus Wartenberg (Germany)

Facilitated by Susan Pitt (Australia) and Rosemary Wormington (United Kingdom)

Workshop

Facilitated by Kathy Oliver (United Kingdom)

Workshop

14.40 - 15.25

Parallel Workshop 3 - Patient advocacy 45 involvement in clinical trials minutes (LLEVANT 1)

Facilitated by Carrie Treadwell Workshop (United States) and Barrie Littlefield (Australia)

14.40 - 15.25

Parallel Workshop 4 - Fundraising for 45 brain tumour research minutes (MESTRAL 1+2+3)

Facilitated by Wendy Fulcher (United Kingdom) and Sharon Lamb (United States)

Workshop

14.40 - 15.25 Parallel Workshop 5 - Branding, marketing and 45 Facilitated by Gordon Oliver Workshop legal aspects for your patient organisation minutes (United Kingdom) and to consider (MESTRAL 1+2+3) Markus Wartenberg (Germany) 8

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Speakers and Facilitators Format Minutes

MONDAY, 26th OCTOBER 2015 (CONTINUED)

PLENARY SESSION 3 (MESTRAL 1+2+3)

15.30 - 15.40 Case Study 1 - Brain tumours: the 10 minutes Irene Azong-wara (Cameroon) Cameroon experience 15.40 - 15.50 Case Study 2 - Oscar’s Angels: an 10 minutes Anita Granero (France) innovative approach to family support

Plenary

15.50 - 16.00 Case Study 3 - GLIA: the Croatian brain tumour 10 minutes Valerija Korent (Croatia) and Plenary patients organisation is established Dijana Calopek (Croatia) 16.00 - 16.10 Case Study 4 - Teenage and young 10 minutes Savita Goswami (India) Plenary adult brain tumour survivors in India 16.10 - 16.20 Case Study 5 - East meets west: the 10 minutes Nihat Karaoglu (Turkey) Plenary challenge of brain tumour treatment in Turkey and Merve Taskin (Turkey) 16.20 - 16.50 COFFEE/TEA BREAK 25 minutes DISCUSSION SESSION A (MESTRAL 1+2+3 then to breakaway rooms) 16.50 - 17.00 Introduction to the group discussions on: 10 minutes Markus Wartenberg (Germany) Healthcare systems and regional challenges including access to therapies, support and information – delivering the Brain Tumour Patients’ Charter of Rights” 17.00 - 18.00 Discussion Group 1 - 60 minutes Facilitated by Elizabeth Wilson United States and Canada (MESTRAL 4) (United `States) and Rosie Cashman (Canada)

Plenary

17.00 - 18.00

Discussion Group 2 - Western Europe 60 minutes (United Kingdom, Italy, Spain, France, The Netherlands, Belgium, Sweden, Denmark, Ireland, Germany, Cyprus) (LLEVANT 1)

Discussion Group

17.00 - 18.00 17.00 - 18.00

Discussion Group 3 - 60 minutes Facilitated by Justina Smalskiene Eastern Europe (Croatia, Bulgaria, Turkey, Lithuania) (MESTRAL 1+2+3)

Discussion Group

Discussion Group 4 - 60 minutes Zimbabwe, The Philippines, Cameroon, South Africa, India (CATALUNYA)

Discussion Group

Facilitated by Ella Pybus (United Kingdom) and Markus Wartenberg (Germany)

Facilitated by Christine Mungoshi (Zimbabwe) and Will Abbott (The Philippines)

Discussion Group

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Minutes

Speakers and Facilitators

Format

Facilitated by Chris Tse (New Zealand) and Melissa Lim (Singapore)

Discussion Group

MONDAY, 26th OCTOBER 2015 (CONTINUED) 17.00 - 18.00

Discussion Group 5 - 60 minutes Australia, New Zealand, Japan, Taiwan and Singapore Singapore (MESTRAL 1+2+3)

PLENARY SESSION 4 (MESTRAL 1+2+3) 18.00 â&#x20AC;&#x201C; 18.45 Report back from 45 minutes Facilitated by Markus Wartenberg discussion groups (Germany) with patient advocates, industry guests, medical professionals 19.45 - 20.00 Summit group photograph 15 minutes location to be advised 20.00 - 22.00 SUMMIT DINNER 2 hours Marquee Room (adjacent to the Noray Restaurant at the Melia Sitges Hotel)

Plenary

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Speakers and Facilitators Minutes

Format

TUESDAY, 27th OCTOBER 2015 08.30 - 08.45 PLENARY SESSION (MESTRAL 1+2+3 then to breakaway rooms) Welcome to Day 3 and introduction to 15 minutes Markus Wartenberg (Germany). Plenary Workshops on Quality of Life. 08.45 - 09.00 The use of quality of life measures in the 15 minutes Sonja Marjanovic (United Kingdom) Plenary treatment and care of brain tumour patients: current practice, challenges and opportunities

DISCUSSION SESSION B

09.15 - 10.15 Discussion Group 1 - 60 minutes Facilitated by Mary Ellen Maher Discussion Quality of life for brain tumour patients (United States) and Mary Lovely Group (CATALUNYA) (United States) 09.15 - 10.15 Discussion Group 2 - 60 minutes Facilitated by Sally Payne (Australia) Discussion Quality of life for brain tumour patients and Joanie Taylor (United States) Group (LLEVANT 1) 09.15 - 10.15 Discussion Group 3 - 60 minutes Facilitated by Julia Schwarzenberger Discussion Quality of life for brain tumour patients (Germany) and Kate Ferguson Group (MESTRAL 1+2+3) (Northern Ireland) 09.15 - 10.15 Discussion Group 4 - 60 minutes Facilitated by Arja Leppanen Discussion Quality of life for brain tumour patients (Sweden) and Lia Le Roy (Belgium) Group (MESTRAL 1+2+3) 09.15 - 10.15 Discussion Group 5 - 60 minutes Facilitated by Naomi Roche (Ireland) Discussion Quality of life for brain tumour patients and Karen Risgaard (Sweden) Group (MESTRAL 4) 10.15 - 10.45 COFFEE/TEA BREAK and recording of video 30 minutes messages for brain tumour patients in Cameroon PLENARY SESSION 5 (MESTRAL 1+2+3) 10.45 - 11.30 Report back from each quality of life discussion 45 minutes Facilitated by Tina Mitchell Skinner Plenary group (United Kingdom) and Markus Wartenberg (Germany) 11.30 - 12.30 Panel discussion session: research and development 60 minutes Facilitated by Markus Wartenberg Plenary for brain tumour treatments - thinking outside of (Germany) and Kathy Oliver (United the box. Kingdom) with panelists Dr Joan Seoane (Spain), Chris Tse (New Zealand), Robin Boettcher (United States) and Kate Worthington (United States)

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Speakers and Facilitators Minutes

Format

TUESDAY, 27th OCTOBER 2015 (CONTINUED) 12.30 - 13.30 LUNCH BREAK 60 minutes Marquee Room at the Melia Sitges Hotel

PLENARY SESSION 6 (MESTRAL 1+2+3)

13.30 - 13.40

Pediatric brain tumours - 10 minutes the American experience

Robin Boettcher (United States)

Plenary

13.40 - 13.50

Pediatric brain tumours - a Japanese perspective

10 minutes

Yuko Moue (Japan)

Plenary

13.50 - 14.00

Pediatric brain tumours - challenges in South Africa

10 minutes

Bonita Suckling (South Africa)

Plenary

14.00 - 14.10

Pediatric brain tumours - research and support in Italy

10 minutes

Francesca Scropetta (Italy)

Plenary

14.10 - 14.20

Pediatric brain tumours - a DIPG example in Spain

10 minutes

Gloria Garcia Castellvi (Spain)

Plenary

PARALLEL WORKSHOPS - SESSION C

14.30 - 15.10 14.30 - 15.10 14.30 - 15.10

Parallel Workshop 1 – 40 minutes Communicating your message: working with the media (MESTRAL 4)

Facilitated by Hugh Adams (United Kingdom) and Jennifer Gouchie (Canada)

Workshop

Parallel Workshop 2 – 40 minutes Political lobbying to improve brain tumour outcomes (MESTRAL 1+2+3)

Facilitated by Carrie Treadwell (United States)

Workshop

Parallel Workshop 3 – 40 minutes Managing volunteers (MESTRAL 1+2+3)

Facilitated by Jenny Baker (United Kingdom)

Workshop

14.30 - 15.10

Parallel Workshop 4 – 40 minutes Understanding online tools and social media (CATALUNYA)

Facilitated by Stu Farrimond (United Kingdom) and Chris Tse (New Zealand)

Workshop

14.30 - 15.10 Parallel Workshop 5 – 40 minutes Who cares for the carer? (LLEVANT 1)

Facilitated by Maureen Daniels (United Kingdom) and Helen Bulbeck (United Kingdom)

Workshop

15.10 - 15.30

COFFEE/TEA BREAK

20 minutes

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Time Topic/Activity

Hours/ Speakers and Facilitators Minutes

Format

TUESDAY, 27th OCTOBER 2015 (CONTINUED)

PARALLEL WORKSHOPS - SESSION D

15.30 -16.10

Parallel Workshop 1 – 40 minutes Communicating your message: working with the media (MESTRAL 4)

Facilitated by Hugh Adams (United Kingdom) and and Jennifer Gouchie (Canada)

Workshop

15.30 -16.10 15.30 -16.10

Parallel Workshop 2 – 40 minutes Political lobbying to improve brain tumour outcomes (MESTRAL 1+2+3)

Facilitated by Carrie Treadwell (United States)

Workshop

Parallel Workshop 3 – 40 minutes Managing volunteers (MESTRAL 1+2+3)

Facilitated by Jenny Baker (United Kingdom)

Workshop

15.30 -16.10 Parallel Workshop 4 – 40 minutes Who cares for the carer? (CATALUNYA)

Facilitated by Jelle de Vries Workshop (The Netherlands) and John de Bruin (The Netherlands)

15.30 -16.10 Parallel Workshop 6 – 40 minutes Facilitated by Savita Goswami (India) Psychological support for brain tumour patients and Rosie Cashman (United States) (LLEVANT 1) PLENARY SESSION 7 (MESTRAL 1+2+3)

Workshop

16.20 - 16.30 Graffiti Board review 10 minutes

Simone Silenzi (Italy) and Han Manders (The Netherlands)

Plenary

16.30 - 16.40 Wants Board review 10 minutes

Oscar Prieto (Spain) and Maggi Whyte (Northern Ireland)

Plenary

16.40 - 16.55 The Brain Tumour Patients’ Charter of Rights - 15 minutes All, facilitated by Markus Wartenberg where do we go from here? (Germany) 17.00 - 17.15 Evaluation forms/Farewell 15 minutes Markus Wartenberg (Germany) and Kathy Oliver (United Kingdom) 17.15 SUMMIT ENDS 17.30 - 18.00

Memorial Balloon Release. If you are remaining in Sitges overnight on the 27th October, please feel free to join us after the Summit when we will release two symbolic balloons in memory of those whose lives have been touched by a brain tumour and are no longer with us. Location to be advised.

Plenary

30 minutes

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Day 1 - Monday, 26th October 2015 Introductory Presentations Be the change Markus Wartenberg (Germany) officially opened the IBTA Summit, warmly welcoming the over 70 delegates from 27 countries. As the facilitator for the first World Summit of Brain Tumour Patient Advocates in 2013 in Lafayette, California, USA, Markus celebrated the growth of the IBTA community, greeting faces new and old. Markus is the Honorary Senior Manager of the charitable patient advocacy organisation Das Lebenshaus e.V. (The House of Life) and he spoke of the shared challenges faced by rare cancer communities around the world and the ever-present need to work together across geographic borders.

Markus Wartenberg, a leading European cancer patient advocate, was the professional facilitator at the IBTA Summit.

“Patient groups exist not only to support patients and their families but to be the change.” Markus set the scene for the Summit, passionately stressing that a patient group’s role could be summarised in the single word “change”. Patient groups exist not only to support patients and their families but to “be the change,” he said. The Summit’s aims were for delegates to learn from each other and share their experiences, while not trying to convince each other that there is a ‘right way’ to perform patient advocacy. Markus explained that the advocates present collectively represented over 600 years of experience and with so many cultures also represented, the conference was set to be a mutually empowering event that would help equip both small and large organisations in their missions. Solidarity, sustainability and engagement were overarching themes of the Summit, while curiosity and having fun were “strongly encouraged”!

Markus introduced two ‘graffiti boards’, positioned at either side of the main meeting room. One was a blank canvas for delegates to write ideas, post messages or state challenges and solutions which they wanted to share with fellow Summit participants. The other was a space for ‘wants’ and needs. By participants posting a “want” it was hoped that others at the Summit could help provide whatever was being sought, for example, awareness material, advice, etc.  A “wanted” board was available at the Summit for participants to leave a “classified advertisement” on a PostIt Note for others to see with requests for support materials and advice.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Welcome address Kathy Oliver, Co-Founder and Co-Director of the IBTA, then welcomed all delegates, explaining that the Summit dates were chosen to coincide with the beginning of the International Brain Tumour Awareness Week, an annual awareness-raising initiative coordinated by the IBTA. Being together at this milestone occasion reflected the solidarity of the IBTA vision, she said.

“...there are are no vast oceans or long distances that can keep us apart

IBTA Chair and Co-Director Kathy Oliver delivering the

Over 70 people from 27 countries attended the

Summit welcome address

IBTA Summit.

when we share the same goals.” Kathy explained the mission and activities of the IBTA, which include:  advocating for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and caregivers hope – wherever they live in the world.  facilitating collaboration within the global brain tumour community  providing a strong and collective voice for brain tumour patient organisations across the world She added that the Summit was a unique opportunity to share experiences, be refreshed, and enjoy being in a different environment. She also thanked the industry sponsors for supporting the Summit. Kathy hoped that the two days of the Summit would foster a greater sense of camaraderie among the delegates, a greater understanding of cultural and regional differences and similarities, and increased appreciation of the challenges faced by the different patient groups represented at the meeting.

“We are the United Nations of brain tumour patient advocates,” Kathy Oliver said.

Looking back at the growth of the IBTA since its inception on 7th May 2005 in Edinburgh, UK, Kathy reflected on the achievements, sacrifices, and courage shown by members of the brain tumour community that she had witnessed over the past decade. “In my ten years with the IBTA,” she said, “I have learned a lot about people, about life, and sometimes about death. But there have been many very, very positive and hopeful things that I have come across in this world of brain tumours. And the

determination and positivity which drives everyone in this field never ceases to amaze me.” She added that the global reach of the IBTA could be likened to “the United Nations of brain tumour patient advocates”. She summarised by saying: “This Summit, and all it stands for, is proof to me that there are no vast oceans or long distances that can keep us apart when we share the same goals.” 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Setting the Scene All of the Summit participants briefly introduced themselves and described the organisation they represent, sharing some of their successes and challenges in the brain tumour community. Below are some of the introductory remarks from Summit participants.

Maggie Whyte of

Kate Ferguson,

Brainwaves NI

Honorary Secretary of Brainwaves NI.

Sisters Kate Ferguson and Maggi Whyte, representatives of Brainwaves NI (Northern Ireland), spoke of the 230 families that have been supported in the organisation’s twenty years. They were delighted to share the news of Kate’s appointment as MBE in 2014 (an award given in Britain for a significant achievement or outstanding service to the community) for services to brain tumour patients and their families.

Arja Leppanen from

Christine Mungoshi

the Swedish brain

established the Zimbabwe

tumour group, Svenska

Brain Tumour Association,

Hjarntumorforeningen

based in Harare.

Arja Leppanen from Sweden shared with the Summit delegates that her brother was diagnosed with a brain tumour in the same period that she was diagnosed with breast cancer. She said that her experiences revealed to her the lack of resources available to brain tumour patients. Her brother received none of the care and support that she did, she said. She now works to support brain tumour patients, caregivers, and their children.

Christine Mungoshi, Director of the Zimbabwe Brain Tumour Association (ZBTA), said that she had learned the importance of “not focusing on what is not working”, but rather on what is working. She was thankful to the IBTA for offering her an international platform and voice, and said that the ZBTA had received support from 23 organisations via the IBTA and was eager to make things better for all brain tumour patients in Africa.

The Summit

Barrie Littlefield from

Susan Pitt, Chair,

representative from

Cure Brain Cancer

Brain Tumour Alliance

Cameroon was Irene

Foundation travelled

Australia (BTAA)

Azong-wara

from Australia to attend the Summit

Melissa Lim, founder of Brain Tumour Society (Singapore)

Melissa Lim from Singapore said that after the first IBTA World Summit in 2013 she was inspired to start the Brain Tumour Society (Singapore). Since the founding of the organisation in 2014, the Society has grown from 20 to 220 members, has received support from most hospitals in Singapore, and has started Singapore Brain Tumour Awareness Day annually in November.

Irene Azong-wara from Cameroon said that her father was very recently diagnosed with a brain tumour. She wrote dozens and dozens of emails to people asking for help. IBTA Chair Kathy Oliver replied and since that time Irene has become inspired to work toward improving care for brain tumour patients in her country.

Barrie Littlefield from Cure Brain Cancer Foundation, Australia, said that their organisation’s mission is to increase fiveyear survival from 20% to 50% by 2023. “Together we are a lot stronger than we are individually,” he said. Susan Pitt also travelled from Australia to participate in the IBTA Summit. Brain Tumour Alliance Australia is the national umbrella organisation which provides support to patients, families and friends.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Jennifer Gouchie-

Darren Terris attended

Julia Schwarzenberger from

Tina Mitchell-Skinner (left), Paul Skinner and

Terris of Brainchild

the Summit with his

Deutsche Hirntumorhilfe

Rosemary Wormington of Brain Tumour Support

Maritimes (Canada).

wife, Jennifer Gouchie-Terris

Jennifer Gouchie-Terris of Brainchild Maritimes (Canada), who was attending with her husband Darren Terris, said that she became involved in brain tumour patient advocacy when her son Brandon was diagnosed with a brain tumour as a child in 1998. The organisation she works for now supports 150 families, providing information, raising awareness and funding research. She said that she and Darren would be commemorating the three-year anniversary of her son’s death during the Summit at a special memorial balloon release event after the close of the conference. The memorial was later attended by a large number of other Summit participants who were also remembering lost loved ones and friends.

Sonja Marjanovic of

Sarah Parks of

RAND Europe

RAND Europe.

Sarah Parks (UK), an analyst at the notfor-profit policy research organization RAND Europe, was attending the Summit with colleague Sonja Marjanovic (UK) and spoke of her work on quality of life measures in research. She was particularly interested in getting patient advocacy perspectives, with a view to using this to inform her on-going research.

in the United Kingdom.

Julia Schwarzenberger, manager for public relations and health politics at Deutsche Hirntumorhilfe (German Brain Tumour Association), said that giving patients access to the best quality information was one of her key priorities.

Tina Mitchell Skinner is Founder and Chief Executive of Brain Tumour Support in the United Kingdom. She attended the IBTA Summit with husband Paul Skinner and the organisation’s head of support, Rosemary Wormington. They spoke of the need for patient-centred care and that “no person should face the diagnosis of a brain tumour alone”.

President and CEO of the Pediatric Brain Tumor Foundation Robin Boettcher

Robin Boettcher, (President and CEO of the Pediatric Brain Tumor Foundation in the United States), spoke of her personal drive to see fundraising in her organisation grow so that “no child loses their life to a brain tumour”.

Susan Abbott from

Will Abbott, a brain

the Philippine Brain

tumour patient and

Karen Risgaard from Denmark

Karen Risgaard, Secretary of HjernetumorForeningen (Danish Brain Tumor Association) said that she has been providing support for brain tumour patients and their relatives since her husband died of a glioblastoma in 2011. She explained that her Board is working hard in preparation for the fifth “Brain Tumour Day” in Denmark, to take place in April 2016. “I’ve got so many ideas from the last Summit [in 2013] and I’m excited that we are all here together again,” she said.

Tumour Alliance (PBTA) co-founder of the Philippine Brain Tumour Alliance (PBTA)

Elizabeth Wilson, American

Will and Susan Abbott, co-founders of the Philippines Brain Tumor Alliance (PBTA) spoke of their passion and enthusiasm to see positive change in their country, where brain tumour care and information is often very limited.

Brain Tumor Association (ABTA)

Elizabeth Wilson, President and CEO of the ABTA described her organisation’s work to Summit participants.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Keynote Presentation - Professor Roger Stupp (Switzerland) An Overview of Current Brain Tumour Practice and New Advances in Brain Tumour Treatments Key points: Brain tumours are ‘rare’ and there is often little or no data about them.  Tumour grading is not absolute and should be seen as a ‘continuum’.  Contrary to conventional wisdom, ‘high grade’ glioma patients fare best when treated early with a combination of therapies.  An important aspect for patients is to seek care from specialist centres; patient advocates can encourage and support this.  For some low grade glioma patients, less treatment is more.  Patient advocates can help the international brain tumour community by calling for tumour tissue and patient data to be shared for research purposes.  ‘Tumour Treating Fields’ technology is an entirely new treatment modality. 

ROGER Stupp, Professor and Chairman of the Department of Oncology and Cancer Centre, University of Zurich and University Hospital Zurich, is an award-winning and widely-esteemed doctor and researcher in neuro-oncology. His keynote speech offered an overview of present and potential brain tumour treatments, addressing topics ranging from chemotherapy and radiotherapy regimens, to molecular markers and ‘Tumour Treating Fields’ therapy. Prof Stupp explained that brain tumours represent a particular challenge in the search for new treatments. Brain tumours make up only 2% of all cancers and, given their rarity, there has been little interest historically in investing in research. Hence, there is often little or no data available upon which treatment decisions can be made, he said. The advent of temozolomide over a decade ago - the result of a combined international effort - was a watershed moment in brain tumour therapy. Prof Stupp’s presentation focused primarily

Professor Roger Stupp presented an overview of current brain tumour practice and treatments

on glioma research. He explained that gliomas are thought to arise from the structural tissue around neurons and are usually categorised into distinct grades (I, II, III, IV). However, it is more useful to consider tumours as existing on a spectrum of aggressiveness rather than assign them to exact categories, he said. Tumour grades are used to determine treatment decisions, although these guidelines ought not to be considered ‘law’, as they do not reflect the reality of tumours being on a continuum.

“High grade glioma patients should be treated early

only as a last resort. Brain tumour research had focused on patients “no one wanted to touch” and for whom all other options had failed. He presented data from research published in 2005 (in the New England Journal of Medicine) that showed that chemotherapy (temozolomide), when given in combination with radiotherapy, was effective in reducing tumour growth and extending life. A key lesson from that research and similar studies over the past decade, he said, was that high grade glioma (glioblastoma) patients should be treated early and with a combination of chemotherapy and radiotherapy. He stressed that there is a pressing need to change existing paradigms and to offer treatments early, thereby “giving the patient a better chance”. Prof Stupp said that a crucial role for patient advocates is to support patients in finding the best specialist centre to receive treatment. Recounting the story of a brain tumour patient referred to him for a ‘relapse’, he discovered that the patient’s new neurological symptoms were actually due to medication side effects. It is therefore important to seek care in a specialist centre where doctors are very experienced in brain tumour care, he said. Prof Stupp also discussed the variation between nations over how readily patients are referred to specialist brain tumour centres. Therefore it is imperative for advocates in all countries to help patients seek out professionals with expertise.

and with a combination

“A crucial role for patient

of chemotherapy and

advocates is to support

radiotherapy.”

patients in finding the best specialist centre to

Looking back over the history of glioma treatment, Prof Stupp stated that as recently as 1995 surgery and radiotherapy were the only available treatments. In the year 2000, temozolomide (Temodal®, Temodar®) chemotherapy was introduced, although initially

receive treatment.” Prof Stupp added that low grade gliomas present particular challenges when deciding

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

on treatment because there is a high variability in outcome. Approximately 50% of patients are progression-free for three to five years, and 50% are alive for seven years or more. He said that for some patients, less treatment is more. A trial published in the Lancet in 2005 showed that among low grade glioma patients, there was no great benefit from early radiation therapy. A significant proportion of those who received radiotherapy in the trial received no benefit whatsoever. Conversely, data for high grade glioma shows that the opposite is true. Despite considerable variability in outcome, more aggressive treatment of these patients is usually beneficial, he explained. When considering the development of new treatments, understanding the biology of tumours is key, Prof Stupp said. He added that it is getting increasingly difficult to share individual patient data and tissue samples for research purposes, due to rules and legislation designed to protect privacy. In this area patient advocates can aid research progress by challenging pathologists and legislators for data to be shared, as well as urging that large archives of tissue samples and data be established.

“We need facts, we need science.” Despite these hurdles, some research progress has been made through shared

tumour data, Prof Stupp said. Using nearly 1,000 matched tumour and patient blood samples from the Duke University Biobank in North Carolina (USA), the IDH mutations were discovered in 2009 and these mutations have significant implications for glioma progression and tumour behaviour. This and other data-based research has led to the emergence of tumour classifications based on molecular markers, which promise to better inform future treatment and offer new avenues for chemotherapy development. Specifically, MGMT methylation status in a glioblastoma is the strongest predictive (how to treat) marker and indicates whether chemotherapy with alkylating agents (i.e. temozolomide) will be effective. Using research data, Prof Stupp explained that for unmethylated glioblastoma tumours there are presently no good alternatives to temozolomide and in this unmethlyated patient group chemotherapy has only marginal effect. He stressed the pressing need for further research and, in particular, for clinical trials of new and potentially better chemotherapy agents for patients with unmethylated glioblastoma tumours. Patient advocates can be influential in how research progresses, Prof Stupp stated. “There is a need to come together to get the work done,” he said. “It will make a difference – we need facts, we need science.” Therapies targeting tumours with IDH mutations, for example, are presently under investigation, and Prof Stupp hopes these therapies will be effective. He went on to offer a brief overview of the many genetic

Below: A rapt audience listens to Prof Roger Stupp at the IBTA Summit

IBTA Chair Kathy Oliver presents Prof Roger Stupp with a memento of his participation at the Summit.

variations that are now known to exist in astrocytoma and oligodendroglioma tumours, although many of these currently have no determined clinical significance yet. Looking to the future, Prof Stupp discussed the role that ‘Tumour Treating Fields’ therapy (TTFields) may have in brain tumour treatment. He presented the latest clinical trial data and explained the rationale behind the therapy: rapidly alternating electrical fields disturb cancer cells’ ability to divide, which ultimately causes the rapidly dividing cancerous cells to undergo ‘programmed cell death’ (apoptosis). The data for the NovoTTF-100A portable device (now named ‘Optune’) showed benefit to glioblastoma patients when combined with temozolomide, with minimal toxicity and side effects. Skin irritation where electrodes are applied to the scalp was one of the most common side effects. Prof Stupp concluded his presentation by taking questions from the floor. Several delegates questioned the robustness of the TTFields data, asking whether the data showed a true benefit. Prof Stupp affirmed that the data was robust and could not be explained by the placebo effect. Lia Le Roy (Werkgroep Hersentumoren in Belgium) asked how patients can weigh up the benefits versus the risks of a clinical trial. Prof Stupp discussed the balancing act faced by physicians too, namely that if people are given masses of information, perhaps it might be difficult to weigh it all up and come to a reasonable decision.  19

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Keynote Presentation Professor Martin Taphoorn (The Netherlands) Quality of Life in Brain Tumour Patients to work as a teacher or manage her family responsibilities. Receiving care in a nursing home, she experienced “reasonable quality of life” but died of pneumonia one year later.

Key points: Malignant brain tumours are unique among cancers and are ‘two diseases’: a progressive neurological disease and a malignancy currently without cure.  Treatments can improve quality of life and patients will adapt to their new situation (termed “response shift”).  There is often a ‘trade-off’ between quality and quantity of life, although the effects of individual treatments are very varied.  There is a need for clinical research to measure health-related quality of life, not just survival.  The role and challenges of caregivers also need to be considered. 

MARTIN Taphoorn, MD, PhD, is a neurologist and professor in neuro-oncology at Leiden University Medical Center and at the Medical Center Haaglanden, The Hague in The Netherlands. He is a leading authority on quality of life issues in brain tumour patients. His presentation focused on how quality of life may be measured in clinical brain tumour research, and the role patient advocates can play. Brain tumours have unique quality of life issues not seen in other conditions, Prof Taphoorn said. Likening brain tumours to two separate diseases, he said that a malignant brain tumour is both an ‘incurable cancer’ and a ‘progressive neurological disease’. He used two case studies to highlight quality of life issues that can occur with brain tumours.

“Brain tumours have unique quality of life issues not seen in other conditions.”

“We need to do more than work out how to prolong brain tumour patients’ lives.” Professor Martin Taphoorn gave a fascinating presentation on quality of life for brain tumour patients.

The first case study was of a 49-yearold man, who experienced seizures and progressive dysphasia (difficulty speaking) in 2010. Diagnosed with a glioblastoma tumour, he received surgical resection, and radiation therapy together with temozolomide chemotherapy (the ‘Stupp regimen’). Five years later, he was clinically stable, without seizures, requiring no regular medication and was able to work part-time while pursuing his hobbies. The second case study was a woman aged 46 with a low grade oligodendroglioma in the right temporal region but who was otherwise well. Diagnosed in 2001 following seizures, she initially received radiation therapy and then returned to work. In 2004, she suffered further seizures and a loss of functioning in her right arm. The tumour had regrown and had developed into an anaplastic oligodendroglioma. She underwent surgery and received PCV chemotherapy. “It was a success story… she did well for a couple of years,” Prof Taphoorn said, but then she slowly deteriorated. In 2008, she had cognitive deficits (as a result of both the disease and the treatment) and had become wheelchair-bound. She was unable

Prof Taphoorn explained that from these two case studies there are several lessons to be learned. The second case study showed that a relatively benign tumour can become aggressive, resulting in complications and deficits due to both the tumour and the treatment. He said that it is often assumed that health-related quality of life always deteriorates over time but this is not necessarily true. Treatment can lead to improvements in quality of life, he said, and the increasing survivorship among brain tumour patients is further challenging longheld assumptions about outcome. He explained that as quality of life changes, patients will adapt to their situation (“response shift”). Prof Taphoorn emphasised that patients often say that they have a good quality of life and it is important to always ask patients about their quality of life rather than make assumptions. Prof Taphoorn highlighted that health-related quality of life (HRQoL ) is inherently subjective when it is measured. We need to be aware that cognitive impairments may affect a person’s assessment of their quality of life, he said. Prof Taphoorn went on to discuss the many factors that influence a brain tumour patient’s quality of life, considering the effects of both the tumour and the treatments. He stressed that there is a need for research

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

to include ‘clinical outcome assessments’ (i.e. HRQoL measurements) rather than only focusing on ‘traditional outcome measures’ such as overall survival, progression free survival, and MRI results. From a clinician’s perspective, this presents many challenges. “Before I can ask a patient how they are doing, they are asking me ‘how is the scan?’” Prof Taphoorn said. HRQoL assessment includes psychological, physical, social and symptom factors. They are not easy to aggregate into one overall score (unlike survival figures), but these factors still have value in clinical practice, he said. HRQoL assessment facilitates both decision-making and communication between doctor and patient. Prof Taphoorn explained that a variety of validated tools and questionnaires exist for measuring quality of life, such as the EORTC (European Organisation for Research and Treatment of Cancer) questionnaire QLQ-C30; the Functional Assessment of Cancer Therapy (FACT-G); and the MD Anderson Symptom Inventory (MDASI).

“We should not forget the impact on the caregiver.” Referring to published data, Prof Taphoom stated that there is often a ‘trade off’ between quantity and quality of life,

Data on quality of life for brain tumour patients is currently limited, said Professor Martin Taphoorn at the IBTA Summit.

whereby treatments often negatively affect quality of life, especially those given at higher doses, while prolonging life. Data shows that living with a brain tumour lowers HRQoL but the effect “is not as large as one might assume,” Prof Taphoom said, thanks to individuals’ ability to compensate. “We should not forget the impact on the caregiver,” said Prof Taphoorn, before showing data that indicated that the mental health of caregivers for high grade glioma patients is significantly worse than for those who care for low grade glioma patients, or who are not caregivers. Health-related quality of life invariably declines in the end-of-life period, Prof Taphoom explained, a finding that is

Below: Prof Martin Taphoorn spoke at the Summit about the many factors which can influence a patient’s quality of life.

consistent across several European countries. Most patients say they would prefer to die in their own home. In the Netherlands, dying at home is the norm, while in Austria death most often takes place in hospital and in Scotland it is in a hospice. Yet despite these differences in place of death, Prof Taphoorn showed that perceived quality of care in these countries is broadly similar. Prof Taphoorn concluded that data on quality of life in brain tumour patients is currently limited but should serve as a starting point in our mission to try to achieve measurable quality of life improvements in these people. He said that doctors might presume that questionnaires are a burden to patients – when in reality they often are not. Because of various other issues, compliance and survey completion rates remain low, and data for individual patients is often missing. Prof Taphoom emphasised that there is a pressing need to find out what the net clinical benefit of any intervention or treatment is – and this includes measuring both survival and quality of life. 

Health Related Quality of Life (HRQoL) refers to the

measured physical, functional, social and emotional well-being of an individual. Quality of Life (QoL) is a patient’s overall assessment of their well-being.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Keynote presentation Prof Garth Cruickshank (United Kingdom) Neurosurgical Approaches to Brain Tumour Treatment Key points: Symptom improvement is one of the “most useful outcomes” of brain tumour surgery.  Brain tumours can grow in size and invade/spread into tissues. Surgery focuses on treating a tumour’s local growth.  Brain tumours damage connection pathways within the brain; increased scientific understanding of these pathways will help minimise surgical risks.  Individualising therapy is a major challenge: low grade gliomas invariably grow but genetic profiling now shows that some ‘low grade’ tumours are highly aggressive.  High grade glioma patients fare better with aggressive treatment.  Elderly patients should receive active treatment, providing their functioning is preserved.  To improve brain tumour treatments, tumour tissue samples are needed.  Obtaining consent for surgery involves exploring a person’s lifestyle, priorities and concerns - not merely explaining risks. 

GARTH Cruickshank, Professor and Consultant Neurosurgeon at the University of Birmingham and Queen Elizabeth Hospital in the UK, has for many years been at the forefront of clinical research in surgical brain tumour care. He is a university lecturer and teacher, and serves in an advisory role in the UK National Health Service, where he works to improve outcomes for brain tumour patents. In his keynote presentation at the Summit he provided an overview of current and future surgical approaches, the rationale behind them, and the potential impact each intervention may have on the patient. Prof Cruickshank gave a brief description

of the different locations within the brain where tumours commonly occur, highlighting the varied symptoms that they can produce as a result, and the complex clinical challenges that they pose to surgeons. He explained that as our knowledge of communication channels within the brain has increased, we can better understand that it is both a tumour’s location and the connections it affects that cause symptoms. Further advancements in our understanding of these connections will also help surgeons know how to operate more safely, he said. Glioma surgery forms the bulk of a neurosurgeon’s work, Prof Cruickshank explained, with metastatic brain tumours becoming increasingly important. He said that few people realise that brain tumours grow in size locally and invade/spread into other brain tissue. Surgery focuses on a tumour’s local growth rather than its capacity to invade or spread.

“Probably the most useful thing we [neurosurgeons] do is to debulk and remove a tumour… it makes a real difference to how patients are managed.” Prof Cruickshank pointed out that there are five neurosurgical aims in brain tumour treatment: 1. to biopsy 2. to reduce symptoms 3. to reduce tumour size 4. to prolong survival, and 5. to introduce treatments/medications directly into the brain.

Neurosurgeon Professor Garth Cruickshank introduces his presentation

Expanding on these individual aims, he explained that tumour biopsies are most commonly performed as part of imagedirected ‘keyhole’ surgery, whereby a surgeon passes instruments through a small (2-3cm) craniotomy hole into the brain. Sometimes this technique can even be performed as a day-case, Prof Cruickshank said. Tumour tissue samples are then analysed genetically and molecularly. He stressed the importance of surgeons taking multiple biopsies from each tumour. Research is increasingly showing that tumours are heterogeneous and made of several genetically-different cells. Prof Cruickshank then said that the genetic and molecular (biomarker) information gained from biopsy tissue can help diagnose, inform prognosis, and guide future treatment decisions. The second aim - symptom improvement - is one of “the most useful” outcomes of brain tumour surgery, Prof Cruickshank said, and it can be dramatic even if a tumour is not completely removed. He discussed a 32-year-old male patient with a brain tumour who was experiencing severe headaches and becoming increasingly aggressive toward his family. Even incomplete removal of the tumour led to such an improvement that the patient was “back to normal” after the operation.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Biopsy data later revealed that the tumour was an anaplastic oligodendroglioma with biomarkers that indicated a “relatively good” prognosis and so additional treatments, including further surgery, could be considered. When thinking about reducing a tumour’s size and extending patients’ survival (aims 3 and 4), Prof Cruickshank said of low grade gliomas: “I consider them ‘pre-malignant’ and not stable. Greater than 20% of low grade gliomas are transforming {into a more aggressive tumour] at diagnosis, he said. It is therefore a great challenge to know what the outcome will be. “You need to think carefully about what you do at diagnosis,” he said. The most common problems associated with low grade gliomas include seizures, cognitive problems and fatigue (often due to antiepileptic medication). He explained that even infrequent or mild seizures can have an adverse effect on quality of life by “constantly reminding” the individual that they are living with a brain tumour. Prof Cruickshank said that the two key questions that need to be considered when attempting to remove a tumour are: “Can the tumour be removed safely?” and “Can we retain quality of life?” Trying to answer aim 4’s question (Will this surgery extend life?) is extremely difficult, he said, because there are no randomised controlled clinical trials that have compared the benefit of surgery versus biopsy alone. Emerging technologies will continue to make surgery safer and more precise, Prof Cruickshank explained. Where a tumour is close to areas of the brain involved in language then surgery can be performed with the patient awake. This allows for direct cortical stimulation (DCS) mapping of these brain regions and study data shows that such intraoperative ‘mapping’ can halve the rate of neurological deficits. Other technology, which includes functional MRI (fMRI) mapping techniques, will also allow for better identification of the most important brain regions (such as those involved in movement) and will therefore further help improve the safety of surgery in the future. Prof Cruickshank is currently trialling ‘Intraoperative MRI’, an approach whereby repeated MRI scans are performed during surgery, allowing surgeons

to precisely assess their progress while they resect a tumour. Yet despite these advances Prof Cruickshank said that it is still uncertain how much, if any, normal brain tissue should be removed from around a tumour. In principle, removing a margin of healthy tissue from around a tumour should reduce risk of tumour regrowth - but there is no evidence to support or refute this. Prof Cruickshank said that genetic ‘profiling’ of tumour tissue is starting to reveal that some tumours classified as ‘low grade’ glioma are highly aggressive. Again, this new information raises further questions as to how a ‘low grade’ glioma patient should best be treated - this genetic information is only available after surgery/biopsy. Cosmetic appearance following surgery is also an important factor that can markedly affect quality of life, but clinicians often neglect to consider it. “You need to think carefully about what you do at diagnosis,” Prof Cruickshank repeated.

“Patient advocates can play an important role by asking for all available treatment options at an early stage.”

Professor Cruickshank takes neurosurgical questions from the audience

at an early stage, he said. Elderly patients with high grade gliomas should also receive treatment, providing their daily functioning can be preserved. Prof Cruickshank said that modern image-directed surgical techniques are helping surgeons successfully remove tumours, and intraoperative use of 5-ALA, a fluorescent brain tumour ‘marker’, improves resection. Paradoxically however, debulking a tumour actually appears to stimulate the remaining tumour tissue to increase its rate of growth, a factor that presumably explains why tumours are more sensitive to radiotherapy after surgery, he said.

“We have to ask patients what their life is about, what

Referring to study data from over 10,000 patients, Prof Cruickshank showed that high grade glioma patients have a better outcome with more aggressive treatment. Patient advocates can play an important role by encouraging patients to ask for all available treatment options

is important to them and what their particular concerns are.” Fielding questions from the floor, Prof Cruickshank was asked how a patient’s attitude toward risk should be taken into account in risky procedures. “Consent is key,” he said, “We [surgeons] have to ask patients what their life is about, what is important to them, and what their particular concerns are – rather than just explaining risks and asking for a signature.” The sphere of consent has changed and appreciating the potential gains and risks are particularly relevant in the elderly, he said. “It is important that we, as surgeons, grow up a little bit!” 23

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshops Setting the Scene FOUR workshop sessions, each 40-45 minutes long, took place over the two days of the Summit. Covering a wide range of practical issues that commonly affect patient advocacy organisations, the workshops were pre-selected by the participants to allow them to attend those with topics most relevant to their organisation’s work.

Parallel Workshop 1: Peer/Patient Support Facilitated by Susan Pitt (Australia) and Rosemary Wormington (United Kingdom) “NO one should face the brain tumour journey alone” was the key message considered in this session. In a ‘speed dating’ type process, paired participants shared their thoughts about peer/patient support. Then, as a group, this information was discussed and collated on a flip chart, the results of which can be seen in the ‘Mind Map’ (on page 25). These discussions revealed a great diversity of experiences among participants and a wide variety of support being offered by brain tumour patient organisations. Participants discussed support in all stages of a patient’s journey – from diagnosis, throughout treatment and into end-of-life care. Several participants spoke of the various factors that can impact an organisation’s ability to offer support, such as differences in culture, beliefs and resources in addition to other issues like the patients’/caregivers’ attitudes, and their ability to access support resources.

Rosemary Wormington (left) and Susan Pitt (right) ran the workshop on peer/patient support

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Top left: Mary Lovely, USA (left) and Sarah Parks, United Kingdom (right) Left: The workshop on peer and patient support was a popular one among Summit delegates.

This Mind Map was prepared by Susan Pitt, Secretary of Brain Tumour Alliance Australia (BTAA) and Rosemary Wormington, Head of Support for Brain Tumour Support (UK). It is hoped that it will be a useful tool for organisations to use when describing to others what peer/patient support looks like to the brain tumour community.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 2: Presentation and Moderating Skills for Patient Advocates Facilitated by Kathy Oliver (United Kingdom) IN a workshop facilitated by Kathy Oliver, Chair and Co-Director of the IBTA, participants were shown how to prepare for and succeed at presenting and moderating/ chairing roles at scientific meetings. Kathy, a veteran patient advocacy speaker who has delivered nearly 60 presentations during her time with the IBTA, explained to participants that patient advocates are increasingly being called upon to speak at high-level meetings and neuro-oncology and cancer conferences. The purpose of the workshop was to review the dos and don’ts, the highs and lows, and the terrors and triumphs when asked to give a presentation on a particular aspect of the brain tumour patient journey. Kathy said that the main purpose of an The IBTA Summit workshop on presentation and moderating skills for patient advocates advocacy presentation was usually to give the patient and/or caregiver perspective even for patient advocates who aren’t to conquer nerves; the art of visualisation; on one or more critical issues facing the experienced in public speaking,” Kathy said. suggestions on how to deal with tough neuro-oncology world today. These topics The key to a great presentation is in the audience questions; how to design a good might include: preparation, she added. computer-based presentation and how to The workshop looked at some ‘tricks conquer stage fright.  How can we involve patients at an earlier of the trade’; body language hints; how The workshop also explored the role stage of clinical trial design?  How do patients and their caregivers perceive quality of life?  What are the most suitable endpoints for clinical trials?  How do patients and caregivers assess the value of a treatment and how can this affect the regulators’ assessment of it?  How can we ensure equity in access to medicines?  What is the patient perspective on clinical trial recruitment, rights and ethical issues?  What do patients really think about data sharing?  What role can patients and caregivers play in improving cancer registries? “Patient advocacy presentations need to be professional, knowledgeable, accurate, Some of the participants in the Summit workshop on presentation and moderating skills for patient engaging and informative. But giving advocates. Left to right: Rosemary Cashman (Canada), Arja Leppanen (Sweden), Ivan Karagyazov (Bulgaria), Kate Ferguson (Northern Ireland), Elizabeth Wilson (United States) presentations needn’t be a nightmare,

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

of the patient advocate when invited to moderate or chair sessions at scientific meetings. Kathy quoted toastmaster Rory Vaden, who explained the difference between a speaker and a moderator: “When you are the speaker, the spotlight is on you. When you are the moderator, you become the spotlight operator. It’s your job to make the panellists look good and you should fade away into the background.” At the end of the workshop, Kathy reminded participants that, as patient advocates, they are experts in their own disease area. So patient advocates should have confidence about their subject when speaking publicly and be very proud of what they are doing and who they represent. 

Kathy Oliver, IBTA Chair, ran the workshop on presentation and moderating skills for patient advocates.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 3: Patient Advocacy Involvement in Clinical Trials Facilitated by Carrie Treadwell (United States) and Barrie Littlefield (Australia) BARRIE Littlefield, Head of Engagement at Cure Brain Cancer Foundation in Australia, and Carrie Treadwell, Chief Research Officer for the National Brain Tumor Society in the USA, opened the session with the premise that “patients should be front and centre of clinical trial design, development and outcomes”. There are many reasons why patients should be closely involved in the running of clinical trials, they said, and these include: early access to potential new treatments and alternative therapy options; reduced risks and costs to pharmaceutical companies; a better overall experience for trial participants and reduced drop-out rates. The differences between advocacy and activism were discussed and the facilitators stressed the need to focus on outcomes. Bringing about greater patient involvement in clinical trials can occur by forming coalitions between researchers, clinicians and patient advocates, they said. It is crucial that research funders, pharmaceutical companies, government and regulators recognise the importance of patient advocacy and involvement in the design and implementation of clinical trials. Barrie and Carrie argued that the high costs (approximately USD $2 billion), long duration (10-20 years) and high attrition rate make traditional approaches to clinical trials unsustainable in the future. The AGILE (Adaptive Global Innovative Learning Environment) Trial was used as an example of an alternative approach that has greater patient involvement. Rather than search for one ‘blockbuster’ drug through rigid protocols and via analysis of results years after the trial begins, the AGILE Trial, an adaptive learning system, tests multiple drugs simultaneously and analyses patient responses continuously. Ineffective treatments are abandoned early. The AGILE Trial takes an adaptive approach

Barrie Littlefield of Cure Brain Cancer Foundation

Carrie Treadwell of the National Brain Tumor

in Australia

Society in the United States

to testing potential new treatments. The GBM AGILE Trial also takes into account today’s need for drugs that are “personalised” (targeted at specific patient subgroups) and “precision medicine” (delivering the right treatment to the right patient, at the right dose and at the right time). The session concluded with participants discussing in small groups how they can

help patients become more involved in the design and implementation of brain tumour clinical trials in their region. Practical tips and advice were shared and delegates offered each other support in helping to bring about meaningful change the world over. 

Jennifer Gouchie-Terris and Darren Terris (both from Canada) focus on the clinical trials workshop run by Carrie Treadwell and Barrie Littlefield.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

A full house for the clinical trial workshop at the IBTA Summit.

Parallel Workshop 4: Fundraising for Brain Tumour Research Facilitated by Wendy Fulcher (United Kingdom) and Sharon Lamb (United States) THE ‘Fundraising for Brain Tumour Research’ workshop focused on several key themes, including: 1. deciding what to fundraise for 2. how to fundraise effectively 3. how to approach the potentially overwhelming task of being a fundraiser Among the many issues discussed, participants talked about the specific cultural and legal differences that exist between countries. In Spain, for example, only 20% of the population regularly gives to charity while some countries allow tax relief on charitable donations. In terms of deciding what to raise money for, doctors and scientists could be approached to help identify specific projects or research worthy of fundraising. Participants shared their experiences of different fund-raising strategies, including merchandising, running and walking events, competitions and sponsored activities, with emphasis on avoiding ‘donor fatigue’ (those who have given previously to charity and no longer do so). There was consensus that donor fatigue is particularly relevant when repeatedly

Wendy Fulcher, workshop co-facilitator taking notes for the following plenary feedback session.

seeking donations from personal contacts. Participants unanimously felt that organisations need to be transparent about how their funds are used. Discussions also raised the issue that the relative rarity of brain

tumours presents fundraising challenges. Achieving good publicity is difficult so coordination with other charities – large and small – was suggested as a way to ensure fundraising efforts were not wasted. ß 29

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Sharon Lamb, an IBTA Senior Advisor and retired neuroscience nurse from the United States, co-facilitated the workshop on fundraising.

A discussion on alternate types of fundraising for brain tumour patient organisations provided participants with some great ideas.

Participants in the fundraising workshop discuss the best approaches to take when approaching potential supporters.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 5: Branding, Marketing and Legal Aspects for your Patient Organisation to Consider Facilitated by Gordon Oliver (United Kingdom) and Markus Wartenberg (Germany) [DUE to time constraints, an extra session was arranged the following morning to cover marketing and branding aspects of patient organisations separately.] LEGAL ASPECTS Drawing on his experience as a company and commercial lawyer in the UK and from dealing with organisations in different countries, IBTA Co-Director Gordon Oliver, gave an explanation of important legal issues that commonly impact patient advocacy organisations. Small charities often give little thought to the legal structure of their organisation, Gordon said. At an early stage, organisations are typically informal and are unincorporated – a ‘non-legal entity’. Liability insurance is also often overlooked due to the casual way in which these organisations are sometimes run but the management ultimately face full responsibility and financial liability. An incorporated organisation, or charity, offers more protection to members, Gordon said. A fixed set of rules/constitution must be drawn up for an incorporated organisation and certain responsibilities, such as maintaining accounts, are also required. Whether an organisation should seek charitable status, rather than be a not-forprofit company, was considered. Rules and regulations vary greatly between countries and so it is important, Gordon said, to seek expert advice from those experienced in running such organisations in any one country. Other key points discussed in the workshop included the need for organisations to follow data protection laws in their country with regard to supporters’/ members’ personal details. Patient advocacy organisations have a responsibility not to

give specific medical advice, to maintain independence from profit-seeking enterprises and to draw up terms and conditions for any employees or volunteers. Some discussion time was given to the issue of internet law relating to comments left on organisations’ websites. An online disclaimer provides some legal protection against factually incorrect, misleading or potentially libellous content, Gordon said, although all website material and online comments are subject to defamation law and so should be carefully constructed and moderated. BRANDING AND MARKETING Markus Wartenberg opened a discussion on branding by showing a variety of symbols from throughout history and the specific meanings associated with them (such as the Christian cross and the Roman eagle). Perception of these symbols is dependent on the audience, he said. A Christian cross would be perceived positively by believers

Markus Wartenberg is a specialist in branding and marketing and shared his know-how during a workshop on this topic.

but not by those oppressed during The Crusades; the Roman eagle represents power but would have been seen negatively by opponents to the Romans. Markus explained that such symbols are like today’s logos, and represent a set of values while telling a story. A logo, however, is only one part of an organisation’s brand, he explained.

IBTA Co-Director Gordon Oliver ran a workshop on legal aspects for patient organisations.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Using Porsche and Volkswagen logos as examples, Markus introduced the concept of ‘brand personality’. A brand can be seen as having an identity similar to that of a person: it can be trusted or mistrusted, for example. Developing and maintaining a trustworthy brand can be expensive and time-consuming but has great value. “Fifty per cent of Coca Cola’s economic value is its brand,” said Markus. The value of any brand relates to its “perception associations”, he explained. These include value, trust, quality, passion, strength, loyalty, and various emotions. Colours can also have powerful psychological associations, especially in cancer (e.g. pink symbolising breast cancer). Markus emphasised that non-profits and patient advocacy organisations need to think carefully about branding. Members of an organisation need to be aware that the public image of their organisation can be very different to its actual identity and values. Successful branding will help communicate its values and give an organisation credibility, authenticity, consistency and differentiation from other organisations, he explained. All volunteers and staff should know their brand’s values so that they can be consistent in their approach and dealings with the public. Markus said: “A brand is about the organisation’s behaviour, organisation, values, trust, quality of information, credibility… it’s not just a logo.” Markus concluded by saying that nonprofit organisations need to consider their values, philosophy and behaviour when considering branding. External support, such as agencies and graphic designers, should be sought for their expertise, and they can often help at affordable non-profit rates. 

Co-facilitators – Markus Wartenberg (Germany) and Gordon Oliver (United Kingdom) kick-off the workshop on branding, marketing and legal aspects for patient organisations.

Ella Pybus, founder and director of Meningioma UK, makes a point during the Summit workshop on ‘Branding, Marketing and Legal Aspects for your Patient Organisation to Consider’. Ella is herself a meningioma patient.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Plenary Session: Case Studies Setting the Scene Representatives from five different countries gave ten-minute overviews of their patient advocacy experiences and work. Each presentation told of the challenges, successes and future hopes faced in these diverse cultural and political settings.

Case Study 1 - Brain Tumours: the Cameroon Experience IRENE Azong-wara gave a moving account of her own personal journey with her father’s diagnosis and the desperate need for better brain tumour care in Cameroon. In her country, cancer is the second leading cause of death but it remains a taboo subject. For most people cancer means “you’re dead”, she said. Witchcraft and alternative medicine are often sought in the first instance and, as a result, many brain tumour patients present to medical services only when symptoms are very advanced. She said that it took her two months before gaining the courage to tell others about her father’s brain tumour. Irene described the very limited healthcare provision in Cameroon. She explained that only one radiotherapy machine exists in the entire country for all types of cancer – representing a deficiency of at least 500 machines – and there is no booking system.

Irene Azong-wara told Summit participants the moving story of her father’s brain tumour diagnosis in Cameroon.

She played a video showing dozens of patients waiting at a medical centre in the hope of receiving radiotherapy treatment. The radiotherapy equipment also frequently breaks down and people often need to start

queueing from five o’clock in the morning for the chance to access radiation therapy, she said. In Cameroon, “information is key,” Irene said. Her experiences with her father had shown her that there was a desperate shortage of information about brain tumours, written or otherwise. Her presentation’s conclusions were that there is a pressing need for:  the brain tumour and cancer stereotype to be challenged  publicly available information  patient and caregiver teaching in wound care  discharge planning  medicines  good diet  greater cooperation between all stakeholders in brain tumour care  encouragement for those affected by brain tumours through hopeful, spoken testimonials. During the IBTA Summit, a video camera was set up for participants to record their personal messages of encouragement and hope for brain tumour patients and caregivers in Cameroon. This video was sent to Irene after the Summit for her to show to brain tumour patients, their families and their caregivers in her country. 

In Cameroon, cancer remains very much a taboo subject, Irene Azong-wara said.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Case Study 2 - Oscar’s Angels: an Innovative Approach to Family Support in France ANITA Granero is Founder and President of Oscar’s Angels, a charity based in France whose main objective is to provide care and support to the families of children and teenagers with brain and spinal cord tumours, severe neurological problems or in palliative care.. She spoke about her organisation’s inspirational and unique ‘Parent Advocate Program’ in pediatric neuro-oncology. Anita introduced the concept of “the multidisciplinary volunteer”, who is someone “trained to work in a hospital environment and perfectly integrated in the medical teams.” She explained that the multidisciplinary volunteer is a family’s representative from the moment they arrive at a hospital until the moment they leave – through all stages of treatment and into end-of-life care. Each volunteer is trained to understand all relevant medical and surgical disciplines and act as a liaison with healthcare professionals where and when needed. The programme has been running since 2001 in the Children’s Hospital of Toulouse, France, and Anita described how

impacts of the project, some doctors in Toulouse now freely give their time to help train volunteers. Anita summarised by saying that multidisciplinary patient advocates are good for families, patients and medical teams. They break down barriers between the medical establishment and families, while offering informed, personal support. Anita said the program is “a win-win!” 

Anita Granero describes some of the very encouraging and positive moments from her work in Toulouse, France.

the volunteers have now become accepted members of MDT (multi-disciplinary team) meetings. The programme has zero cost to the hospital, Anita said, and the only hurdle is whether the hospital is willing to join the programme.. Patient advocate volunteer training is now validated and consists of nine modules, which takes many months to complete. Having witnessed the positive

Anita Granero of Oscar’s Angels in France, describes how her Parent Advocate Program in pediatric neurooncology works.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Case Study 3 - GLIA: the Croatian Brain Tumour Patients’ Organisation is Established VALERIJA Korent and Dijana Calopek are President and Secretary respectively of Glia, the Croatian Brain Tumour Association, which they helped establish in 2014. They opened their presentation describing the current situation in Croatia. Each year 600 new brain tumours are diagnosed, 420 of which are malignant and it is hard for brain tumour patients to get appropriate treatment. Healthcare facilities for brain tumour care are sporadic, they said. Valerija and Dijana explained their rationale for establishing Glia, Croatia’s first brain tumour patient organisation. There was a lack of patient information, a lack of psychological support and care surrounding treatment side effects, many obstacles in the healthcare system, and on-going problems faced by many brain tumour patients trying to reintegrate into society. Valerija’s late husband died of a brain tumour, and her experiences inspired her to help establish the organisation. Glia’s founding assembly was held in Zagreb in the summer of 2014. Glia’s main goal is to ensure educational and psychosocial support for brain tumour patients and their families and to raise public awareness of brain tumours. Valerija and Dijana explained that the association logo, which is a network of coloured and grey dots in the shape of a brain, symbolised a holistic and analytic approach to care with grey dots representing tumour cells. Glia’s activities currently include monthly

Healthcare facilities for brain tumour patients in Croatia are “sporadic” Dijana Calopek (left) and Valerija Korent said.

meetings, educational lectures, psychoeducation groups for patients and families, and the publication of an information brochure (‘Living with a Brain Tumour’) and a patient manual (‘What to do After a Brain Tumour Diagnosis’) in the Croatian language. These written materials are the first such brain tumour patient information documents to have received official approval in Croatia. In June 2015, Glia organised Croatia’s first ‘Grey Ribbon Day’, an annual brain tumour awareness day, during which leaflets and bunches of lavender were given away from

stalls in several Croatian cities. Croatia is one of the largest producers of lavender. Valerija and Dijana showed an inspiring video of brain tumour patient “Antonio’s” journey. In 2005 he survived a serious car accident but was left with considerable neurological difficulties. He overcame these difficulties to finish school and gain qualifications. In 2011 however, he was diagnosed with a malignant brain tumour. Antonio has undergone 33 treatments and over 70 chemotherapy sessions. He, like Valerija and Dijana, remains positive and upbeat about life and the future. 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Case Study 4 - Teenage and Young Adult Brain Tumour Survivors in India DR SAVITA Goswami, clinical psychologist at Tata Memorial Hospital in Mumbai, India, shared with Summit participants her experiences of working with teenagers and young adults with brain tumours. She noted that the burden of cancer on healthcare systems is increasing globally – particularly in developing countries. The number of new cases of cancer in the developing world is set to increase to 14.0 million by 2020, up from 5.4 million in the year 2000. With 20 years’ experience working in the specialised area of psycho-oncology and palliative care psychiatry, Savita said that brain tumour patients aged 13-30 have varying needs and priorities and are affected by “very different” types of brain tumours. Young people of these ages face particular issues including growth retardation, reduced fertility and hormonal imbalances, in addition to problems relating to employment, driving, marriage and social functioning. Brain tumours have a major impact on psychosocial areas in this age group, representing a significant challenge in providing adequate care. Nevertheless, Savita said that “these patients have a right to emotional and psychological treatment”. Savita discussed India’s great diversity, describing it as a country with many

Teenage and young adult brain tumor survivors in India who are involved in support groups have improved confidence and capacities, increased self-esteem and are more empowered, Dr Savita Goswami said.

languages, religions and cultural practices. Despite rapid economic growth in recent years, only a small proportion of the population can afford medical care – let alone have access to facilities and support to deal with the social and ethical issues arising from brain tumours, Savita said. Of primary importance in the teenage and young adult patient group is the need to optimise treatment by balancing therapies

Dr Savita Goswami of the Brain Tumour Foundation of India discusses some of the challenges patients and caregivers face in her country.

targeting the brain tumour with the long-term toxicities associated with them. Brain Tumour Foundation of India is a boon for these patients and their families; it helps them get medication, treatment, accommodation, rehabilitation, education, recreational activities and access to monthly support groups, etc. Since 1992, support has been provided at Tata Memorial Hospital for this patient group through the After Completion of Therapy (ACT) clinic. Offering annual follow-up with physical, psychosocial and rehabilitative care, the clinic helps teenagers and young adults manage the late effects of brain tumours and their treatments. They also provide educational/ vocational rehabilitation and medical/ psychopharmacological care, as required. Teenage and young adult-focused group discussions tackle some of the many psychological and practical issues through communication, information-giving and support. Savita explained that young people often have many questions and desire control of their situation and they need the opportunity to argue. Family members and parents are also involved in support as they often have concerns of their own, such as consequences for their loved ones regarding education, future employment and financial prospects, tumour recurrence, marriage and fertility. Concluding with a message of hope, Savita described the remarkable results they have seen. Teenage and young adult brain tumor survivors who are involved in support groups have improved confidence and capacities, increased self-esteem and are more empowered, she said. But more than that, these survivors are now actively helping others. Since 2007, a voluntary support group called UGAM (meaning “to rise”) has been run by childhood cancer survivors from the ACT Clinic. Teenagers and young adult survivors are involved in activities and awareness programs, representing the group on various platforms. Together, they continue to work to create hope for all those young people who have been affected by brain tumours. 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Case Study 5 - East meets West: the Challenge of Brain Tumour Treatment in Turkey NIHAT Karaoglu, Founder of the Turkish Brain Tumour Patients’ and Caregivers’ Association introduced Turkey as a country that rests on the imaginary line that divides the globe into ‘East’ and ‘West’. At the intersection of three continents (Europe, Asia and Africa), Turkey is a country of 78 million, mostly practicing and non-practicing Muslim people, and is “on one side modern and European, on the other side, “traditionalist and oriental,” Nihat said. Turkey’s unique “East meets West” culture presents unique challenges in brain tumour care, Nihat explained. Drawing upon findings from research conducted in 93 countries and involving 120,000 people, he gave insights into how Turkish people typically relate to and engage with each other and the medical community. He also specifically discussed how these challenges can be overcome through brain tumour patient advocacy. Nihat said that in Turkey there is a large “power distance” between doctor and patient. The doctor is seen as a “supreme being”, meaning that patients cannot confidently express themselves or seek a

Nihat Karaoglu, founder of the Turkish brain tumour patients’ association described the many challenges in his country for brain tumour patients.

second opinion. Patient representatives can play an important role by informing patients of their choices and rights. Nihat explained that brain tumour representatives in his association attend conferences and talk to doctors, which builds their credibility among professionals and helps to position them as “partners” to clinicians. Turkey has a very close-knit society, Nihat said. This means that a social “safety net”

for patients is usually available. However, decision-making is not shared, often giving the patient little individual choice. Using a hospice is seen as a disgrace. The remedy for this, Nihat explained, is through support that empowers patients while involving the family. Nihat explained that Turkey has a society which avoids uncertainty. It has rigid laws, there is little interest in activism, and people refrain from attending formal meetings or protests. When faced with this challenge, brain tumour organisations can help to bring about change through informal groups and meetings and – crucially – with social media. Due to cultural norms, a patient organisation with a clear hierarchy and chain of command is more likely to be successful than a consensusbased approach. Nihat said that awareness of our own country’s culture can allow us to be more effective in our mission. He concluded by saying: “What we have in common is our strength, where we differ is our richness.” 

Turkey, a country of 78 million, is on one side modern and European, on the other side, traditionalist and

Merve Taskin of the Turkish brain tumour patients’

oriental, said Nihat Karaoglu.

association is a co-founder of the group.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Breakaway Discussion Groups: Healthcare Systems and Regional Challenges Including Access to Therapies, Support and Information Delivering the “Brain Tumour Patients’ Charter of Rights” Setting the Scene SUMMIT participants were grouped with others from their geographical region to discuss the issues and challenges they and their organisations face with regard to access to therapies, support and information. These forums allowed representatives to compare and contrast their experiences with the hope of being able to develop practical solutions. Groups also discussed The Brain Tumour Patients’ Charter of Rights (see pages 70-71), an aspirational document authored by the IBTA in 2010. The Charter was intended as a reference point for patients to use in trying to create an optimal brain tumour journey in the context of their diagnosis. Individual groups at the Summit then shared summaries from their discussions with the rest of the attendees in a plenary session. The many conclusions from the discussion groups highlighted the diversity of challenges faced in different countries and cultures while emphasising the common purpose of all Summit participants.

North America Patient advocacy organisations from North America (USA and Canada) said that challenges facing them included regional disparities in quality of care. Those who do not live near a specialist cancer centre may not receive the best care, for example. Such disparities extend to palliative care, the group said. Elizabeth Wilson, President and Chief Executive Officer of the American Brain Tumor Association (ABTA), spoke of poll results that indicated that patients feel a great pressure at the time of diagnosis to make decisions about treatments and clinical trial options. Representatives from Canada furthermore highlighted that there is a lack of clinical trials in their country. Proposed solutions to the challenges facing the USA and Canada included the development of online resources and patient-family financial assistance funds to alleviate financial stress for families affected by a brain tumour diagnosis. The consensus from the North America discussion group was that the Brain Tumour Patients’ Charter of Rights was a good idea but there were questions regarding when

the best time would be to present it to patients. The group considered the Charter to be quite long and proposed that some of the points be consolidated. They also highlighted that point 5 (“My option to access care will be based on need, and not

my ability to pay for it.”) may raise particular challenges in the USA and Canada given that options for care can be based on medical insurance coverage.

Representatives of North American (US and Canadian) brain tumour patient organisations discuss their heathcare systems’ challenges.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Robin Boettcher, left (Pediatric Brain Tumor Foundation, USA) and Rosemary Cashman, right

Rosemary Cashman, left, relays to the Summit plenary the main discussion topics in her workshop on

(British Columbia Cancer Association, Canada).

healthcare systems and regional challenges.

Western Europe The Western Europe group (United Kingdom, Italy, Spain, France, The Netherlands, Belgium, Sweden, Denmark, Ireland, Germany, Cyprus) focused some of their discussion on the disparities of care between children and adults. The group consensus was that children generally receive better care than adults. Martin Taphoorn, Professor of NeuroOncology at the VU University Medical Center, Amsterdam and Leiden University, The Netherlands, shared that there is greater collaboration in pediatric brain tumour care than in adult care in The Netherlands. In France, the watershed between child and adult care is 15 years old, according to Anita Granero of Oscar’s Angels. A particular challenge facing brain tumour patients in mainland Europe is gaining access to ‘Centres of Excellence’, the group said. The most appropriate brain tumour treatment facilities may be in a neighbouring country and, even after gaining a second opinion, a patient may still be forced to receive care in their own country even though this might not be optimal. The group raised the question of whether patient advocates should be more proactive in helping their constituents seek the best care with brain tumour specialists regardless of the country in which the best care is located. A long-term solution offered is the creation of a certified and recognised network of ‘Centres of Excellence’ across Europe (“European Reference Networks”, the plans for which are currently

Gordon Oliver, centre left (UK) brings up a point during the discussion session on Western European healthcare systems, regional disparities and The Brain Tumour Patients’ Charter of Rights.

in process via the European Commission) that patients would have access to, helping them to decide where to receive the best treatment. The group said that missed and late brain tumour diagnoses have been an issue in the UK. Brain tumours often have vague and non-specific symptoms. Brain tumour advocacy groups could collaborate to conduct international surveys and research, monitoring speed and quality of diagnosis in different countries, thus encouraging consistency in speed of diagnosis. It was proposed that the IBTA could operate an information exchange between countries

with the goal of improving brain tumour diagnosis across Europe.

The Western European discussion group on healthcare systems and regional disparities was the largest one at the Summit.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Eastern Europe Common themes that emerged from the Eastern Europe group discussion (Croatia, Bulgaria, Turkey, Lithuania) were:  the need to keep hope alive at all times for those affected by brain tumours, and  the need for information to be made available in local languages  variability in quality of care between countries Issues facing small nations were also described. Some small countries have little or no access to certain treatments. Temozolomide, for example, is not covered by medical insurance in several Eastern European countries. The group also said that there is often no framework for clinical trials and patients are required to travel to other countries to participate in a trial. The group suggested that brain tumour patient advocacy organisations should collaborate with other rare cancer organisations to pool resources. Intercountry collaboration between brain tumour organisations could also help patients get access to treatments. Petitioning governments to allow access to treatments, such as temozolomide, would also be another positive step that patient advocacy organisations could take.

Above: Justina Smalskiene, left (Lithuania), Dijana Calopek, centre (Croatia) and Valerija Korent, right (Croatia) ponder a point at the Eastern European discussion group on health care systems and inequalities. Left: Ivan Karagyazov, a university lecturer, is based in Bulgaria and works with the Global Disability Movement.

Africa, India and The Philippines A great many disparities were identified in this discussion group (Zimbabwe, The Philippines, Cameroon, South Africa, India). Focusing on The Brain Tumour Patients’ Charter of Rights, the group concluded that the aspirational document was more achievable in South Africa and India than in The Philippines, Cameroon or Zimbabwe. Of the five nations represented, Cameroon and Zimbabwe have effectively no access to treatment, and representatives from those countries (Irene Azong-wara and Christine Mungoshi respectively) raised the question of whether these statements could really be considered ‘rights’. There is also no access to clinical trials in these countries, they added. The group said that The Philippines had some access to treatments, but less than in India and South Africa.

Christine Mungoshi of the Zimbabwe Brain Tumour Association (left) and Savita Goswami (right) of the Brain Tumour Foundation of India compare notes in the Africa and Asia discussion group for the regional disparities session at the Summit.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Moreover, statistics on brain tumours are not collected or are incomplete in Zimbabwe, Cameroon and The Philippines, meaning that point 14 of the Charter (“I have the right to ask that my brain tumour is properly registered in my country’s cancer registration records, whether it is benign or malignant.”) would be unachievable in the short-to-medium term. Other specific issues facing these regions include widespread beliefs in alternative and traditional folk therapies. Hope for patients should be based on reality rather than false promises, the group said and they discussed the challenge of supporting patients who pursue alternative and traditional folk treatments. Ultimately, the Africa/Asia discussion group concluded that The Brain Tumour Patients’ Charter of Rights should be aspired to – but will only be achieved in small steps.

Participants in the Africa and Asia discussion group on regional disparities included, from left to right, Irene Azong-wara (Cameroon), Bonita Suckling (South Africa), Susan Abbott (The Philippines) and Will Abbott (The Philippines)

Australasia and Eastern Asia The Australasia/Eastern Asia discussion group also focused on The Brain Tumour Patients’ Charter of Rights, identifying how they felt it could be further improved. Like other groups, the Australasia/Eastern Asia discussion group felt that the document should be shortened, but on the proviso that it wasn’t “watered down”. They suggested that a separate document should be prepared for children with brain tumours which would take into account the different issues facing younger people. The group also discussed whether the document would benefit from a different title: the notion of ‘rights’ could be seen as too legalistic, potentially suggesting that there would be negative consequences if not met. Melissa Lim from Singapore also explained that the current political situation in her country meant that ‘Charter of Rights’ had negative connotations. They proposed that a new ‘master document’ could be written that could be extracted from and

Chris Tse (New Zealand, far left) and Melissa Lim (Singapore, second from the left), led the discussion group comprised of representatives from Australasia and Eastern Asia.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

modified to draw up ‘Charters’ appropriate for each culture and country. The Brain Tumour Patients’ Charter of Rights appears to be most relevant at initial diagnosis, the group said. A document for ongoing and end-of-life care should be considered. The group also felt that the “right to be treated according to my risk profile” ought to be included in any future Charter, thus taking into account patients with a poor prognosis who are prepared to try riskier treatments.

The Australasia and Eastern Asia group discussed The Brain Tumour Patients’ Charter of Rights and how that might be relevant to their part of the world. IBTA Advisor Sally Payne (Australia), seated to the right of Chris Tse (standing), attended the discussion group on regional disparities. Also in this group were: Yuko Moue (Japan), Barrie Littlefield (Australia), Susan Pitt (Australia) and Melissa Lim (Singapore).

The Brain Tumour Patients’ Charter of Rights There are a number of documents dealing with patients’ rights, some of which touch on the rights listed in the IBTA’s Charter. But the IBTA Charter has been drafted from the point of view of the brain tumour patient with particular consideration for the difficulties which sometimes arise in the brain tumour journey. The IBTA has sought to ensure that the Charter will have worldwide relevance but we are mindful that many countries lack basic health facilities and the specialists and facilities relevant to the treatment of brain tumours. The Charter therefore represents an aspirational ideal which we should work towards. While asserting our rights we acknowledge that no rights can exist in human society without responsibilities. See pages 70 and 71 of this report for further details of The Brain Tumour Patients’ Charter of Rights.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Day 2 - Tuesday, 27th October 2015 An Introduction to the Quality of Life Workshops Setting the Scene Quality of life for brain tumour patients was a key theme of the Summit. Markus Wartenberg introduced the day’s workshops by posing the question to all participants: “What is important to your quality of life?” He invited each Summit participant to give a personal answer. The responses were many and varied and included:  being able to enjoy music  going for walks and enjoying pastimes  being able to excercise free will and control one’s own time.  being able to communicate with others and to spend time with family.  being able to use the bathroom when needed. Markus summarised from this that quality of life is very subjective and has many different aspects.

Markus Wartenberg, the Summit’s professional facilitator introduces the quality of life session.

being able to enjoy music

being able to exercise free will and control one’s own time

going for walks and enjoying pastimes

being able to communicate with others and to spend time with friends and family

being able to use the bathroom when needed.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Keynote presentation Dr Sonja Marjanovic (United Kingdom) The Use of Quality of Life Measures in the Treatment and Care of Brain Tumour Patients: Current Practice, Challenges and Opportunities Key points: Measuring quality of life is deliberately subjective and usually focuses on the patient’s experiences.  Quality of life is rarely assessed in routine brain tumour care although interest in measuring it is growing.  We know very little about how quality of life issues affect the treatment and care of patients with brain tumours, because of a lack of evidence  Many quality of life assessments tools exist, and we need to better understand which types of tools would be most effective in different care contexts, for example for different stages of cancer and different health systems.  Use of quality of life tools in brain tumour patients holds much promise and patient advocates can be drivers of change. 

Dr SONJA Marjanovic is a Research Leader at the not-for-profit policy research organisation RAND Europe, whose mission is to help improve policy and decision-making through research and analysis. She introduced an on-going exploratory project that is examining the use of quality of life assessment measures in the treatment and care of patients with cancer, with a particular focus on brain tumour patients. It is hoped that the results from the project will be used to create an evidence base that will inform future care and policy for brain tumour patients. She explained that quality of life (QoL) refers to a person’s general wellbeing and is multifaceted, including physical, social, and psychological elements. QoL assessment tools generally take the form

Dr Sonja Marjanovic from RAND Europe presented at the Summit on “The use of quality of life measures in the treatment and care of brain tumour patients: current practice, challenges and opportunities”

of questionnaires looking at a patient’s perspective on one or more aspects of their quality of life, she said. They are deliberately subjective, and may have particular importance for patients whose survival prospects are limited. Dr Marjanovic highlighted that in such cases, patients may be willing to accept different trade-offs between the potential adverse effects of

treatments and their quality of life. Dr Marjanovic explained that the current research project aims to find out whether or not QoL measurement tools are being used in patient care and, if so, when, how and why. Importantly, the study aims to find out whether there is evidence that using QoL assessments results in any meaningful differences for patient treatment, care and well-being. At the time of this Summit, the researchers were reviewing the published literature on the use and impact of QoL assessment tools in the care and treatment of cancer patients. They were also conducting interviews with experts from a range of countries. The study focused on Western Europe and Canada but is intended to also identify issues which future studies could expand on and investigate across a broader range of country contexts, Dr Marjanovic explained. Discussing initial, emerging insights from the ongoing literature review search, Marjanovic said that “the landscape seems to be patchy and fragmented”. RAND

Summit participants were asked to complete a survey for RAND Europe on quality of life measures.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Europe’s initial data gathering and analysis identified a relatively small number of studies on the use of QoL tools in care settings, and the studies seemed to be of variable quality and produced inconclusive findings. She stressed that there is a need for more high quality research, that will identify when and with whom improvements to QoL can be made through interventions. She suggested that better evidence would be needed for making clinical decisions and empowering patients to engage with QoL tools and information from them.

“We need more high quality studies into Quality of Life and how tools for measuring it can impact on cancer patients and their care”

Dr Marjanovic said that the QoL tools that currently exist and which could be used in cancer care vary in complexity, and that a scoping analysis suggests their use seems to be inconsistent across countries. She noted that QoL assessments seem to be rarely performed in routine brain tumour care, despite their increasing use in clinical trials. RAND’s study is looking into the evidence behind these initial assumptions. The RAND Europe research project is interested in better understanding the potential of these tools to provide more robust evidence and inform treatment decisions. The project is looking at the different types of factors which can influence whether the tools are used or not in care settings, and how they could impact on patient-physician communication and on treatment and care decisions. For example, the project is exploring how issues such as awareness of the tools, training needs for their effective use, time-demands on health professionals and patients, the availability of guidelines, and the role of patients in healthcare decision-making, influence the use and impact of QoL tools. Encouragingly, interest in measuring quality

of life is growing and QoL assessments in neuro-oncology have great potential to inform care, Dr Marjanovic said, but there are challenges to overcome before this is done routinely in clinical care. RAND Europe was exploring the key issues which would be important for policy, healthcare professionals, industry and patient advocacy to address. Dr Marjanovic noted that patient advocates could have an important role in the future of these tools and in providing a patient perspective on the most effective ways to use them, but more evidence is needed on how this could be facilitated. All Summit participants were invited to complete an anonymous consultation survey of their experiences and opinions of quality of life assessments and these results will be fed into the final report findings, which is due to be published in 2016. There followed a lively exchange of comments and questions from Summit participants. The RAND Europe study is expected to be completed soon and the findings are expected to be made available in early to mid-2016.

Savita Goswami (Brain Tumour Foundation of India). Savita asked whether scoring quality of life in an assessment has real value, given that results from a one-to-one consultation may yield very different answers to a written questionnaire.

Above far left: IBTA Chair Kathy Oliver listens to the quality of life presentation by Dr Sonja Marjanovic Above centre left: Dr Sarah Parks, from RAND Europe Left: Dr Marjanovic said that the QoL assessments in neuro-oncology have great potential to guide research and overall care, but a lot more work needs to be done.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Dr Marjanovic acknowledged the ongoing debate over the value of QoL tools and the need for a degree of customisation to different contexts – including cultural. However she also pointed out that the factor that is being measured may be more universal (e.g. such as emotional states, ability to carry out daily activities) but the way of arriving at the measure and the types of questions asked to arrive at a measure may be more context-specific. She acknowledged that some degree of standardisation in tools would though be important to facilitate conclusions about effects from specific treatments on different types of patients and cancer profiles. In response to further questions, Dr Marjanovic suggested that there may be a need for QoL assessments to consider caregivers and for questionnaires that specifically consider ‘quality of death’ in the end-stages of life. This is not the explicit focus of the RAND Europe project, but an associated issue of potential importance for policy.

Above: Gordon Oliver, Co-Director of the IBTA

Above: Dr Mary Lovely (an IBTA Senior Advisor and

Gordon Oliver (UK) queried whether the act of completing a questionnaire may negatively impact quality of life; Dr Marjanovic acknowledged this point, and said that the timing of a questionnaire, for example, could be important and needs to be considered as part of the assessment process.

specialist neuro-oncology nurse from the USA),

Mary Lovely (USA) shared her experiences of working with QoL tools throughout her over20-year career as a neuro-oncology clinical and research nurse, stating that many physicians with whom she has worked have seen little value in QoL assessments.

But she spoke positively of using QoL tools, such as the distress scale, saying that she has observed meaningful and consistent results when it is applied to large numbers of patients. 

Quality of life (QoL) refers to a person’s general wellbeing and is multifaceted

QoL assessments have great potential to inform care

makes a point. To Mary’s right is Mary Ellen Maher (also an IBTA Senior Advisor and specialist neurooncology nurse from the USA). To Mary’s left is Dr Claus Thielert, Director, Clinical Science & Medical Affairs, MagForce AG (Germany)

Current QoL tools used in cancer care vary in complexity

Interest in measuring quality of life is growing

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Discussion groups on Quality of Life for Brain Tumour Patients Setting the Scene Following Dr Marjanovic’s presentation, five discussion groups of randomly assigned Summit participants were each given one hour to talk about quality of life issues that affect brain tumour patients and caregivers, with the opportunity to propose answers to challenges faced. Groups were asked to consider how health related quality of life can be defined, measured and improved. Specific attention was also given to cultural differences and how these differences may impact such issues. Conclusions and key points from each group’s discussion on quality of life were reported back to the entire Summit in a plenary review. Some of the important findings are summarised below.

Q1: When thinking about the brain tumour population, what is a comprehensive, working definition of health related quality of life (HRQoL)? Would the same definition apply to patients and caregivers or are there differences? Are there important cultural differences that would influence the definition? All groups felt that there were key cultural differences between countries (and even within a single country) that can have a powerful effect on quality of life. For example, some cultures have a strong tradition of respect for the family unit; and some enshrine the tradition of eldercare. In these cultures, care of the patient may be more accepted and natural, and

Mary Lovely, PhD, RN, CNRN, and Mary Ellen Maher, RN, APN, CNRN, facilitating one of the group discussions on quality of life.

entail less sense of restriction on the part of the patient and the family members. However, some cultures such as those in Cameroon see illness, especially cancer, as shameful and a “loss of face.” In this instance, support from sources outside the family unit is not sought even when it is needed. However in Zimbabwe it was noted that the desire for “protection” from the diagnosis, and difficult conversations, may also include keeping information from the patient and families.

be perceived differently among countries and cultures, presenting challenges when trying to standardise health related quality of life measures internationally. The words ‘quality of life’ and ‘well-being’ are inherently imprecise and would need clear definitions so as to standardise any measuring tool. One group suggested that ‘happiness’ could be used as an indicator for measuring and defining quality of life, while another group

“Some cultures… see illness, especially cancer, as shameful and a ‘loss of face.”

The Summit delegate from Cameroon, Irene Azong-wara.

All discussion groups reported back that an understanding of terms and definitions will

Left: Members of one quality of life discussion group. Left to right: Stu Farrimond (IBTA’s Digital Technology Advisor - UK), Sarah Parks (RAND Europe), Professor Martin Taphoorn (The Netherlands), Francesca Berrini (Associazione Italiana Tumori Cerebrali ONLUS, AITC, Italy),

Christine Mungoshi from the Zimbabwe Brain

Ivan Karagyazov (Global Disability Movement, Bulgaria)

Tumour Association (ZBTA).

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

At the Summit all participants were involved in quality of life discussions and brought their various perspectives, cultural and otherwise, to the table. Pictured here are, left to right, Dr Kate Worthington (Celldex Senior Medical Director), Melissa Lim (a brain tumour patient and founder of Brain Tumour Society Singapore), Susan Pitt (Secretary, Brain Tumour Alliance Australia).

Julia Schwarzenberger from Deutsche Hirntomorhilfe (Germany) and Kate Ferguson from Northern Ireland (Brainwaves NI) lead one of the quality of life discussion groups.

said that an assessment of quality of life should be based on an individual’s personal values, rather than using strict categorisations. Moreover, representatives from India and Japan explained that in their cultures face-to-face communication gives markedly more meaningful and consistent assessment of quality of life than written scales. “You listen with your ears, eyes and heart,” Yuko Moue (Japan) said.

One of the quality of life discussion groups at the Summit considers how culture might influence quality of life.

Q2: How do you approach a situation where a patient’s view of quality of life differs from that of their loved ones (e.g. the patient is trying to live/work at prediagnosis level while the family may be encouraging a slower, more tempered pace, or vice-versa). Teenagers and young adults, however, will have more complex priorities and may be prevented from experiencing critical social interactions and meeting important developmental milestones (graduation, learning to drive, etc) because of a brain tumour. And due to their youth, they may lack adaptive psychosocial skills and support networks, making them more vulnerable to depression and suicide, one group said. This in turn may exacerbate the distress of their family members. Groups also identified that a caregiver’s needs and perspectives will also be different to that of a patient. Some participants said that the caregivers often require more support than the patient. One group shared the findings of an online survey showing that brain tumour patients

had better coping mechanisms than their loved ones.

It was identified that a caregiver’s needs and perspectives will also be different to that of a patient. There were a variety of suggestions for resolving conflicts between patients and their loved ones when their views of quality of life differ. Breaking down the issues and encouraging good and open communication was seen as key, with some Summit participants speaking of the need for patients and their families to acknowledge their fears and transition to a ‘new normal’. Additional external help may also be needed. One group said that in the end-of-life phase, the patient’s QoL needs to be prioritised over that of their family.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Q3: How can the definition and characteristics of HRQoL direct future research into brain tumours and the development of better and more effective treatments? It was a unanimous finding from all of the discussion groups that HRQoL can, and should, be used to develop better and more effective treatments. Quality of life measures are being used increasingly in clinical

research, several groups said, although it is usually seen as an ‘additional extra’ rather than a primary outcome. Some participants argued that HRQoL should be used as a primary endpoint in treatment research. “We do not give life, we give days to the life,” one participant said. One group said that certain medical drugs have been withdrawn because they have increased length of life but worsened quality of life, demonstrating the importance

of HRQoL measures. Side effects of treatments need to be considered in any HRQoL measure. One group described how social media and biographical interviews can offer insights into how daily life is affected over time in ways that paper-based questionnaires cannot.

Maureen Daniels (IBTA Senior Advisor and

Bonita Suckling (founder of Rainbows and Smiles

Coordinator of the Gerry and Nancy Pencer Brain

in South Africa) commented: “The bottom-line

Tumor Centre in Toronto, Canada) said: “There is

is that quality of life is linked to resources –

also some responsibility on the part of patients to

having money.”

Q4: Beyond the practical tasks of providing medical care, facilitating appropriate referrals to care services and other relevant medical specialties, can health care professionals truly have an impact on improving a patient and/or family’s HRQoL? Reports from individual discussion groups revealed a breadth of suggestions as to how health professionals and patient advocates can improve the HRQoL of patients and their families. Some participants felt that many doctors seem uninterested in discussing their patients’ psychological and social wellbeing. Conversely, more than one clinician at the Summit expressed their frustration that most patients whom they see in clinic are not interested in discussing their quality of life – they only want to know the test results. Allowing for additional clinic sessions to discuss wider quality of life issues was offered as one potential solution to this problem, notwithstanding the logistical and staffing challenges. One participant said that doctors’ abilities to communicate is vital but varies greatly, thus reinforcing the importance of involving different people with different skills in patient care.

“Listening is key” It was widely reported from the group discussions that listening is key: many patients may have a strong desire to stay at home for end of life care for example, which could be crucial in improving patient and

maximise quality of life.”

family QoL. Some patients may also want to leave a legacy and, hence, facilitating this will positively impact QoL. “Rehabilitation” was expressed as an important concept – empowering patients and their families to manage their circumstances as well as possible. Giving patients control over their treatment options was also seen as important for maximising a patient’s QoL. In open discussion, Maureen Daniels (Canada) said: “There is also some responsibility on the part of patients to maximise quality of life.” One participant also argued that by increasing a patient’s value of life, their quality of life will improve – and this is something with which advocates can help. On-going support was seen as very important, which could include financial support, travel assistance and help with day-to-day tasks. Patient organisations can assist with many of these aspects. Bonita Suckling (South Africa) said: “The bottom-line is that quality of life is linked

to resources – having money. This is very sad and we need to work as an alliance to pressure for resources and money to be put where it is needed.” 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Plenary Panel Session: Research and Development for Brain Tumour Treatments - Thinking Outside the Box Panellists: Chris Tse (brain tumour caregiver, New Zealand), Dr Joan Seoane (Director, Translational Research Program, Vall d’Hebron Institute of Oncology, Barcelona, Spain), Robin Boettcher (President and CEO, Pediatric Brain Tumor Foundation, USA), Prof Martin Taphoorn (Neurologist, Medical Center Haaglanden and Professor in Neuro-Oncology at Leiden University, The Netherlands) and Dr Kate Worthington (Senior Medical Director, Celldex Therapeutics, United States)

issues and want to see aspects like this prioritised for research. Put simply, patients want to live longer and better, Chris said.

Setting the Scene A multi-disciplinary panel discussion was chaired by IBTA Co-Director Kathy Oliver (United Kingdom). Kathy introduced the session by saying: “A silver bullet for brain tumour treatment unfortunately does not exist. There needs to be increased cooperation between all stakeholders in order to work towards the same goal of an ultimate cure. We need to break down silos and be much more collaborative.” With the aim of exploring how cooperation between different disciplines and stakeholder groups may be furthered, the five panellists were: a caregiver, a researcher, a clinician, an industry representative and the CEO of a patient advocacy organisation. At the beginning of the session, each panellist had five minutes to give his or her perspective on brain tumour research and development, with a view to proposing some ‘thinking outside the box’ solutions.

The Caregiver’s View: Chris Tse (New Zealand) News of scientific breakthroughs and research progress is a “double-edged sword”, Chris said. Describing the work he does in curating research items for the IBTA’s monthly e-News, he said that each article about a brain tumour treatment discovery gives hope – only for that hope to be dampened by the knowledge that the new therapy could take a decade or more before being made publicly available. Patients do not have the luxury of time, he said, and they need to

“Brain tumour patients are often forced to pay for treatments, potentially affecting the financial stability of the family.”

Chris Tse, a caregiver to his wife in New Zealand, addresses the plenary with his opening statement.

have access to treatments earlier. Hence a more streamlined process is called for.

“…for patients, innovation represents hope.” Chris said that patients have a part to play in this, as only 5% of patients in Australia participate in a clinical trial – a low figure that is reflected in other countries. Patients also need to have their say over the direction of future research. He mentioned as an example the UK-based James Lind Alliance Neuro-Oncology Priority Setting Partnership’s recently published ‘Top Ten Research Uncertainties’ for brain tumours in which the IBTA is very involved (see www.neuro-oncology.org.uk/jla). This is one example of patients, caregivers and patient advocates contributing to future research topics. This project showed that patients care deeply about quality of life, faster, more accurate diagnosis and lifestyle

He also spoke of the “stark reality” of the financial costs incurred through brain tumour treatments and that these also need to be considered when moving forward. Brain tumour patients are often forced to pay for treatments, potentially affecting the financial stability of the family. Chris highlighted some of the ways that access to treatments can be speeded up. Innovative trial designs are already being incorporated into some research, he said. More trials are needed, but new kinds of research protocols and additional resources need to be provided to allow this to happen. New, innovative approaches and “disruptive technologies” should be developed he said, “because for patients, innovation represents hope ”.

A disruptive technology is one that displaces

an established technology and shakes up the industry or is a ground-breaking product that creates a completely new industry

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

The Researcher’s View:

“Each patient has a

Dr Joan Seoane (Spain) Dr Seoane is a researcher who focuses on brain tumours and whose main objective is to understand the molecular mechanisms involved in the origins and progression of cancer. Dr Seoane said that working in multidisciplinary teams alongside patients can be crucial for effective research. “We need to find ways to do science as close to the patients as possible if we are to beat and understand the enemy,” he said. Dr Seoane explained that innovative thinking is needed if we are to find new therapies for brain tumours. Research should specifically investigate the molecular basis of brain tumours, he said. The three areas that he identified as focus areas for future research are: prevention, early detection, and characterisation of brain tumours. Finding out how to prevent brain

The non-profit organisation view: Robin Boettcher (United States)

different tumour, and sensitivity to treatments will be different.”

Dr Joan Seoane (Director, Translational Research Program, Vall d’Hebron Institute of Oncology,/VHIO in Barcelona, Spain), addresses the plenary.

tumours is an important and under-researched area, he observed. It is right that we ask the question, “Why do we have this problem?” He said that developing ways to detect brain tumours sooner - and hence avoid late diagnosis - is a focus area for future research.

research, Robin Boettcher chose to answer the question: “How can we work more collaboratively toward research?” Robin said that non-profit organisations can drive collaboration by facilitating discussion through hosting scientific meetings, funding research and presenting findings. Moreover, non-profit organisations can choose to fund research that requires different stakeholder groups to collaborate. Non-profit organisations can also work to promote the sharing of research data.

Non-profit organisations should collaborate with Robin Boettcher (President and CEO, Pediatric Brain

one another.

Tumor Foundation USA) provides her perspective on brain tumour research as it applies to children. To her right is Dr Joan Seoane of Vall d’Hebron Institute of Oncology in Barcelona, Spain).

As president and CEO of the Pediatric Brain Tumor Foundation (PBTF), the world’s largest non-profit funder of childhood brain tumour

Robin spoke of the PBTF’s efforts at fostering collaboration through its funding of the Pacific Pediatric Neuro-Oncology Consortium (PNOC) at the University of California, USA. The PNOC is a clinical trials consortium with teams from multiple

Dr Seoane explained that characterisation of brain tumours on a molecular level will be key to developing new treatments: “Each patient has a different tumour, and sensitivity to treatments will be different. There is heterogeneity within a tumour – some cells may be resistant [to a particular treatment] and we need to understand this.” We need new treatments,” he said, “but we need to stratify patients to know which patients will benefit [from specific treatments].” “This research needs to be done based on knowledge that comes from working in multidisciplinary teams,” Dr Seoane concluded.

disciplines (such as oncology, neurosurgery, and radiation therapy) at 15 hospitals in the USA. The Consortium is geared toward developing personalised therapies for children with brain tumours. Non-profit organisations should collaborate with one another, Robin said. There are hundreds of organisations and charities serving children with brain tumours. Through pooling funds and resources, small organisations can have a greater impact and fund more research. Childhood brain tumours is a ‘niche’ area, but Robin gave examples of successful niche charities that are well-organised, wellrecognised, and that deliver local support. The ALS (Amyotrophic Lateral Sclerosis) Association raises about US $60 million a year and serves a population of similar size to that of children with brain tumours, while the Cystic Fibrosis Association raises over US$300 million each year and its outputs have a great impact on the life of those with cystic fibrosis. Robin concluded by saying, “Collaboration is the name of the game because the kids can’t wait.”

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

The clinician’s view: Prof Martin Taphoorn (The Netherlands)

information, they want to know about new treatments, treatment side effects, and how their quality of life will be affected, he said. Prof Taphoorn stated further that he needs to know an individual’s baseline quality of life and their expectations so that treatment can be tailored to them.

“In addition to measuring survival and clinical response, all new trials need QoL outcome measures, such as Professor Martin Taphoorn, neurologist from The Netherlands.

Prof Taphoorn focused on the importance of future research that incorporates quality of life measures. He explained that he sees many patients seeking advice on how their tumours should be treated. Patients need

An industry individual’s view: Dr Kate Worthington (United States)

physical, social and cognitive functioning.” As a clinician, clinical trial information needs to be made available to him,

As a representative of a pharmaceutical company that is currently developing an immunotherapy treatment for brain tumours, Dr Worthington said that she felt “humbled” to be able to contribute to the Summit. She offered her perspective on the processes involved in new drug development.

“There is no way of knowing what will and won’t work [in advance]: humans are very different to other animals and Dr Kate Worthington (Senior Medical Director, Celldex Therapeutics) offered her perspective on drug development and summarised some of the challenges that the pharmaceutical industry faces in bringing new therapies to market.

Taphoorn said. “I need to know data on clinical trials; what is available; and what the known side effects are.” It is vital that all clinicians have easy access to this type of clinical trial data and, importantly, how a new treatment may affect quality of life. Quality of life measures are essential in research, he said, and there are huge differences in how well these assessments are incorporated into clinical research. “Quality of life tools are a starting point in research,” Taphoorn stressed. In addition to measuring survival and clinical response, all new trials need QoL outcome measures, such as physical, social and cognitive functioning, he added. “We need new treatments, but we need to be sure to find out how it affects patients – we need quality of life testing,” concluded Prof Taphoorn.

we’ve cured rat cancer many times.”

Research starts in the laboratory setting, looking at cells in a Petri dish, she said. “Cells do not have organs,” Dr Worthington explained, and so the drug candidate then needs to be tested on living organisms to find out whether it will be toxic in an animal. If this test is successful then the potential therapy can progress to testing on humans. Dr Worthington stated: “There is no way of knowing what will and what won’t work [in advance]: humans are very different to other animals and we’ve cured rat cancer many times.” Human trials involve doctors, nurses, clinical coordinators, data collection, regulatory authorities, international cooperation, and multiple languages - a huge expense in time, money and energy. Animal-based test results rarely transfer fully to humans, she explained, and so if clinical trials fail at this stage then the process needs to be started again. If initial human safety trials are passed and show a drug to be non-toxic then the

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

pharmaceutical company needs to decide on which tumour type to test the drug. Dr Worthington said that companies will traditionally focus on the much more common cancers such as breast, colon, lung and prostate because the large numbers of patients with these diseases makes the process faster, more efficient and therefore cheaper when compared to rarer cancers (and fewer patients), such as brain tumours.

One trial typically costs between US $5-50 million, she said, and an estimated 10,000 new compounds need to be tested for one to be found effective and then ultimately approved for use. In total it takes approximately 20 years and costs US $1.4 billion for one new medicine to progress from discovery to final approval by regulatory agencies, Dr Worthington pointed out.

[Note: Dr Worthington let the Summit know that the opinions expressed by her at the conference were her own and not necessarily those of Celldex where she is Senior Medical Director.]

Panel Questions and Answers Setting the Scene After each panellist had spoken, questions and discussion points were invited from Summit participants.

How can brain tumour patients get new treatments first? Rosemary Cashman (Canada) asked: “How do we change the [research] questions, so that brain tumour patients are the first to get treatments?” Dr Joan Seoane said: “Brain tumours were the first tumour type to be fully examined genetically; other tumours have since followed.” He added: “We are beginning to understand the heterogeneity of tumours, but we need to get the message out that tissue is so valuable.” Dr Seoane explained that access to brain tumour tissue is a great start for speeding up brain tumour research. This could be achieved through tissue banks being made available to researchers and pharmaceutical companies. Chris Tse added that legislation and policies often hamper the easy sharing of data: “A lot comes down to money. New technologies have made great advances in genomic analysis possible – but politics causes great wastage and duplication of effort,” Chris said. Prof Martin Taphoorn commented: “One of the issues is that [a brain tumour] is a very rare disease. But by collaboration across Europe, [research] can be speeded up. There are many legislative hurdles, but the way to go further is to encourage more collaboration internationally.”

Summit facilitator Markus Wartenberg said: “We need to do the right thing rather than try to do it right. We need to take risks and involve experienced patient advocates early in the [clinical trials and research] process. Industry should conduct pilot projects, involving advocates early.” Kathy Oliver added that: “Patients are less risk-averse than people think and so we should re-evaluate how we do research in light of this.

Can we find out how to prevent brain tumours? Anita Granero (France) asked for clarification on Dr Joan Seoane’s statement that brain tumour prevention should be a focus area for future research. She mentioned that as far as we know at the moment, there is no way to prevent a brain tumour.

“Information must always be conveyed to patients in a sensible and sensitive manner.”

Dr Seoane said that looking at the causes of a condition “is a way we all have to think. In other tumour types we accept that

prevention is important. Why can’t we study this in brain tumours and find out why these tumours are occurring?” he said, “Genetic data can help us to find out the cause of tumours and how they develop – and we need to invest in this much more.” Anita, who works with pediatric brain tumour patients and their families in France, responded: “You need to be careful how this information comes out because parents [of children with brain tumours] might blame themselves.” “We must indeed be very careful upon transmitting a message, but this should not prevent us from delivering it,” replied Dr Seoane. “Information must always be conveyed to patients in a sensible and sensitive manner.”

What is the role of the advocate in therapy development? Maureen Daniels (Canada) asked whether the ethical approval process could be streamlined, and whether this could be facilitated through endorsement from the brain tumour community – particularly over the levels of risk patients are prepared to tolerate. Kathy Oliver added that the IBTA campaigns for patient advocates to be involved in all stages of research, development and drug approval processes. Kathy stressed that it is important that all patient advocates know that they can be active in various ways at high levels, such as on ethical panels, health technology assessment committees, and in 53

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

In One Word… All of the panellists in this Summit session were asked to summarise - from their perspective and in one word - what they feel is important for advancing research and development in brain tumour treatments.

“Innovation” Kathy Oliver (IBTA Chair) said that patient advocates

Cathy Trzaskawka (Head, Global Policy and

should be involved in all stages of research,

Advocacy, Oncology, Bristol-Myers Squibb)

development and drug approval processes.

explained that companies should recognise that patient advocates are very experienced regarding issues facing their disease communities.

the regulatory processes at the European Medicines Agency (EMA) and the US Food and Drug Administration (FDA).

“We need to be a loud voice together....” A period of open discussion centred on the value that patient advocates can have in helping move brain tumour research forward. Dr Kate Worthington highlighted a key challenge facing brain tumour research that makes it unlike research into other diseases such as cystic fibrosis. “Cystic fibrosis is one disease that will respond to similar treatments,” she said, “but brain tumours are actually all individual – each type of brain tumour is different which makes for a huge research challenge.” There was consensus from all panellists that patient advocates definitely need to add their voice to the research conversation.

Cathy Trzaskawka, Head of Global Policy and Advocacy, Oncology, at Bristol-Myers Squibb, said: “I wholeheartedly agree with the need to involve advocates, and we have started to do this. [Pharmaceutical] companies need to understand that advocates are experienced people, not simply ‘random patients’. This needs ‘company-side’ education.”

“Knowledge” DR JOAN SEOANE:

“Collaboration” ROBIN BOETTCHER:

“Efficacy” Markus Wartenberg (Summit facilitator and European patient advocate for kidney cancer, GIST and sarcoma) called for a serious dialogue among all stakeholders in the cancer journey.

Markus Wartenberg said that there needs to be “a discussion alongside experts about what outcomes are relevant to our patients and in what direction we would like research to go.” Robin Boettcher concluded by saying: “We need to be a loud voice together as we are too fragmented as individual advocates.”

CHRIS TSE:

PROF MARTIN TAPHOORN:

“Individual” DR KATE WORTHINGTON:

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Plenary Presentations: Pediatric Brain Tumours Setting the Scene In this Summit session, five childhood brain tumour organisation representatives from different countries gave ten-minute presentations, in which they shared their successes, struggles and hopes for the future.

Pediatric Brain Tumours: the American Experience Robin Boettcher, President and CEO of the Pediatric Brain Tumor Foundation (PBTF), presented an overview of the childhood brain tumour statistics in the USA where brain tumours are the most common cause of cancer death in children. Twenty-eight thousand children and young adults aged 19 and under are presently living with a brain tumour diagnosis, she said.

“Childhood brain tumour research in the US attracts just 4% of total research funding.” Robin Boettcher (Pediatric Brain Tumor Foundation)

Despite this, Robin explained that childhood brain tumour research is underfunded in the USA, attracting just 4% of total research funding (US $170 million per year) – a very low figure when compared to other rare diseases. The PBTF is the largest non-profit funder of childhood brain tumour research at approximately USD $2 million pledged to research each year. Dozens of other non-profit organisations, including family foundations, are raising money trying to ‘close the gap’ between childhood brain tumour research funding and other conditions, Robin said. Robin added that her organisation’s mission could be summarised as “Care versus Cure”. The principle activities are: family support, research funding and advocacy/awareness-raising. Robin gave examples of the varied ways the PBTF offers support to families affected by childhood

brain tumours. These include providing information, education and referral to other services, facilitating online and offline support groups, and giving emergency financial aid and college scholarships to survivors. Other pediatric brain tumor non-profits in the US provide camps for children and families and support groups tailored to teenagers and young adults. The PBTF has invested US $26 million in research since 1991, Robin said. They focus on three major areas of research, because advances are needed in each, she explained. These are: 1. basic science projects that seek to understand the biology of childhood brain tumours 2. translational research that aims to “translate” findings in fundamental research into health-based outcomes

3. clinical trials and tests of drugs Since the year 2000, 229 new clinical trials have been launched for pediatric patients, she noted. Robin explained that her organisation’s funding decisions are guided by a Research Advisory Network, a panel of experts from medical centres, research institutions, brain tumour non-profit organisation(s) and the pharmaceutical industry. Funding applications are assessed by scientific review teams and external reviewers to ensure the most appropriate projects are supported. Non-profits in the US fundraise through a variety of activities, including sponsored walks/runs, bike rides, golf tournaments, galas, fashion shows and more. Other sources of funding come from annual appeals, major gifts, workplace giving, corporate sponsorship and memorials/tributes.  55

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Pediatric Brain Tumours: a Japanese Experience Yuko Moue is President of the Pediatric Brain Tumor Network of Japan (PBTN). In 1998, Yuko’s one-year-old daughter started to vomit and was initially diagnosed with a common cold. Three months later, she was diagnosed with a medulloblastoma and Yuko said that at that time there was no specialist centre for treating children with brain tumours in Japan. Her daughter was treated surgically at a major university hospital, but even there the doctors had only treated one pediatric brain tumour patient before. For Yuko, this showed how desperate the need was for better paediatric brain tumour care in Japan. Today the PBTN organises and runs many activities to support those affected by childhood brain tumours. These include an online support community, lectures, camps, and providing printed materials. Yuko said that in Japan, there are a variety of other groups that are concerned with specific brain tumour types, including the Brain Stem Glioma Network, Clover (for germ cell tumour patients and families), Cranio Park for craniopharyngioma patients and families, and a self-support group for ependymoma tumours. The PBTN exchanges information with these different brain tumour groups and coordinates efforts to petition the Japanese government to fund improvements in care and to invest in research. Yuko said that collaboration and information sharing with other non-profit organisations has also revealed a ‘therapeutic divide’: in Japan different hospitals will offer different treatments for identical pediatric brain tumour diagnoses. With an ageing population, much of the government’s focus is on treating the elderly, Yuko said. But their petitioning efforts started to pay off in 2012 when the Japanese government established 15 ‘hub’ medical institutions that are specialised in treating childhood cancer. In April 2015, the Japan Agency for Medical Research and Development (AMED) was established, which will give high research funding priority to childhood cancers. Also in 2015, a nationwide research group for pediatric brain tumours was formed, and in 2016

Yuko Moue (Pediatric Brain Tumor Network of Japan)

the National Program of Cancer Registries will start.

“Once you leave hospital after treatment, you will hardly find any social or psychological support is available…”

Japanese culture presents specific challenges in the care of brain tumour patients, Yuko explained. “Japanese people tend to think that children should be taken care of by their parents rather than the entire society,” she said. “Once you leave hospital after treatment, you will hardly find any social or psychological support is available for patients and their families.” Palliative and end-of-life care is also severely lacking in Japan, she said. By way of comparison, Yuko stated that the UK has 52 child hospices whereas Japan, which has

twice the population, has just one. Moreover, there are 20,000 children in Japan with a terminal disease without a clear treatment or care plan, she said. Yuko stressed that children’s hospices are desperately needed but an exciting project is now on the horizon. Working alongside Hisato Tagawa, of the Japan Brain Tumour Alliance (who assisted in preparing Yuko’s presentation but who could not attend the Summit), plans are being made to open a new children’s hospice. One hundred and five million Yen (approximately US $850,000/ GBP £500,000) was bequeathed by a former nurse in Fujisawa near Yokohama, who shared Yuko’s and Hisato’s dream of opening a new children’s hospice. A total of 204 million Yen has now been raised and it is planned that this new facility will open its doors in 2020. 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Pediatric Brain Tumours: Challenges in South Africa Bonita Suckling, Founder of the Rainbows and Smiles Foundation in South Africa, presented a short video, originally aired in September 2015, that showcased the organisation’s activities and history. Produced by the ‘Gateway Gives Back’ initiative, as part of the Nelson Mandela Day celebrations 2015, Rainbows and Smiles was recognised as one of four ‘worthwhile causes’ to be awarded a ZAR 10,000 (US $700/GBP £460) donation. Rainbows and Smiles was established by Bonita Suckling in memory of her son, Jed, who died of an anaplastic astrocytoma. “It is a very personal organisation,” Bonita said. The “extremely passionate” team of volunteers in the organisation have all been personally affected [in one way or another] by childhood brain tumours, and they work towards providing support to families and patients, raising funds, organising events and increasing awareness,” she said.

“…there was nobody coming round to the hospital supporting the mums, supporting the children, offering advice, or just giving a shoulder to lean on.”

Bonita told the Summit that there is a lack of public awareness and support for childhood cancer in South Africa. In the video, Rainbows and Smiles volunteer Debbie Riggien said: “When my daughter was diagnosed with cancer there was nobody coming round to the hospital supporting the mums, supporting the children, offering advice, or just giving a shoulder to lean on.”

Bonita Suckling (Rainbows and Smiles, South Africa)

Debbie now spends time one-to-one with children and their families in hospitals; but owing to the immunosuppression of many patients she is the only volunteer to make the visits. “My job is just to spoil the children!” Debbie said. Eleven languages are spoken in South Africa, and it is a very culturally diverse country, Bonita explained. Many people see ritual healers rather than medical doctors, and as a result over 50% of childhood brain tumours have a late diagnosis. Rainbows and Smiles organises projects and events to create awareness of childhood brain tumours and to educate the public on the early warning signs of brain tumours. Bonita listed the many challenges facing them. Poverty is rife in South Africa, especially in rural regions; treatments are expensive, and because 18% of the adult population are HIV positive, cancer is seen as a lesser priority in the medical fraternity. Furthermore, she said that there is a lack of oncologists in the country, waiting lists for radiation therapy are long, and it can take up to six weeks before an intensive care unit bed becomes available. The Rainbows and Smiles Foundation engages in many fundraising activities. A large proportion of these funds are used

to pay for families’ medical and household expenses, and in addition to help cover funeral costs, provide food parcels and offer travel assistance. Through their efforts Rainbows and Smiles has made hospital and play area upgrades possible; delivered toys to children; and offered grief support to families. The money from the Gateway initiative was used to provide an ‘introduction bag’ for children in hospital, which contains a ‘blanky’ (cuddly comforter), toiletries, a toy, supplements and food. Bonita closed her inspirational presentation with a quote from her son Jed: “Mum, let’s make today the funnest day ever!” 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Pediatric Brain Tumours: Research and Support in Italy Francesca Scropetta established Il Fondo di Gio (‘Gio’s Fund’) 13 years ago following her six-year-old son’s brain tumour diagnosis. Francesca is a lawyer in Italy and she described to delegates how she became very involved in ‘mediation’ during her son’s treatment, seeking to find a balance between his quality of life and the side effects of the therapy. With the wish that no child should succumb to a brain tumour as her son did, she established the fund in his memory. Using one of her son’s drawings of a rainbow as the organisation’s logo, Il Fondo di Gio is dedicated to promoting and funding childhood brain tumour research. Francesca explained that 100% of the funds they raise go to research. She and her husband pay for all administrative costs. Francesca said that basic research labs exist in public universities and public hospitals, and are primarily funded by the Italian government. She explained that funding cuts have hit public research labs, limiting the amount of research they can conduct. She also expressed concerns over the Italian government’s history of money mismanagement.

“We should nourish scientific research for as long as we have brain tumours.”

Il Fondo di Gio works independently and only accepts donations from private citizens - primarily those who have been personally affected by brain tumours. “We finance research projects, and arrange scholarships to support the work of researchers,” Francesca said. Together with their scientific committee, Francesca said that she sees the Foundation as the ‘mediator’ in the movement of funds from donors to researchers.

Francesca Scropetta (Il Fondo di Gio, Italy)

“The pain [of brain tumours] that cannot be expressed or defined by one word must be counteracted by love – that we have learned from our sons and our daughters,” Francesca said. “We should nourish scientific research for as long as we have brain tumours.”

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Pediatric Brain Tumours: a DIPG Example in Spain Gloria Garcia Castellvi worked in the bank insurance sector until 2006 when her youngest daughter Alicia was diagnosed with a diffuse intrinsic pontine glioma (DIPG). Gloria said that after Alicia died in 2007, she and her husband established Fondo Alicia Pueyo (Alicia Pueyo’s Fund) in her daughter’s memory to help develop treatments that might cure the disease. DIPG is very rare, currently incurable and impossible to resect, Gloria explained. Over 90% of patients do not survive beyond two years. The economic fund she established is not an independent institution but is integrated within a research facility at Hospital Sant Joan de Déu in Barcelona, the same hospital where her daughter was treated. Being set up within an institution that already exists is the quickest and most costefficient way to promote and fund research, she said. In addition to directly funding research projects, Gloria said that Fondo Alicia Pueyo also exists to provide support to families and to facilitate collaboration with other foundations across the world. In 2009, they organised the First DIPG International Workshop, held in Barcelona, Spain, an international meeting for researchers and clinicians to share ideas. From that meeting key action points were identified:  to collect and share DIPG tissue samples for research purposes  to promote biopsy of tumours in DIPG patients  to develop animal-based models of DIPG tumours. Gloria said that historically DIPG tumour tissue samples were not taken from patients because biopsies were seen as an unnecessary risk. This attitude has now changed with the advent of better, safer surgical approaches. Since that first international workshop meeting, taking biopsies has now become standard practice, she added. She also spoke of the many other advances that have been made in recent years, thanks in part to the availability of tumour samples and the work of her

Gloria Garcia Castellvi (Fondo Alicia Pueyo, Spain)

organisation. DIPG tumours have now been genetically analysed, potential drug targets have been identified, and animal models of DIPG tumours have been developed, thus allowing for future potential DIPG treatments to be tested.

“Changing minds can sometimes be the most difficult thing to achieve,

Spanish hospitals, Gloria explained, need to collaborate in research efforts, and Spanish DIPG treatment protocols need to be updated so that biopsies are performed routinely everywhere in the country. Most importantly of all, a curative treatment still needs to be found. Summarising what she has learned so far, Gloria concluded by stating that international collaboration is key to making progress for rare diseases. Changing minds can sometimes be the most difficult thing to achieve, she said, “but a very few motivated people can make a big difference”. 

but a very few motivated people can make a big difference.”

Gloria said that future research will focus on improving blood-brain-barrier penetration, which will allow drugs to access the brain, and on developing new treatments, including those that use nanoparticle technology. Much still needs to be accomplished however. Other

Gloria Garcia Castellvi delivered a presentation on the work of her organisation which specialises in supporting research into pediatric diffuse intrinsic pontine gliomas (DIPG)

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshops Setting the Scene THIS was the second set of parallel workshops offered at the Summit and participants were encourage to sign up in advance for two of these in this second-day session. Topics included Communicating your Message: Working with the Media; Political Lobbying to Improve Brain Tumour Outcomes; Managing Volunteers; Understanding Online Tools and Social Media; Who Cares for the Caregiver? and Psychological Support for Brain Tumour Patients.

Parallel Workshop 1: Communicating your Message: Working with the Media Facilitated by Hugh Adams (United Kingdom) and Jennifer Gouchie-Terris (Canada) Jennifer Gouchie-Terris, an experienced print journalist, and Hugh Adams, Campaign Manager for Brain Tumour Research with a long career in broadcast media, shared their insights and advice for brain tumour patient advocates who wish to communicate via the general media. The main approach for any journalism story are the ‘Five Ws’, which Jennifer explained were: who, what, where, when and why. When sharing your news with a media outlet, such as via a press release, these five elements should be included. Jennifer and Hugh said: “The message of the story should be clear and concise, and you should stay on task when talking to a journalist.” A key challenge for all brain tumour organisations is that they are competing for media exposure with other cancers. International Brain Tumour Awareness Week is in October, but it competes with Breast Cancer Awareness Month, for example. Jennifer explained that as a rare disease, “startling statistics” can help a news story get attention (e.g. brain tumours are the leading cause of cancer death in the under 30s). Stressing the difference between brain tumours and other cancer types can also help, she said. Take advantage of news ‘hooks’, such as fundraisers or awareness events, Jennifer suggested. She gave an example of a news story that gathered widespread publicity: an

Hugh Adams (Brain Tumour Research, UK) co-

Jennifer Gouchie-Terris, IBTA Senior Advisor and

facilitated the Summit workshop on working with

Vice-Chairperson, Brainchild Maritimes, Canada, co-

the media.

facilitated the media workshop with Hugh Adams.

entire town in Ontario, Canada rallied together to collectively celebrate Christmas two months early so that a child with a terminal brain tumour could enjoy his last Christmas. The event attracted international media attention and showed how a powerful, timely story can achieve much exposure. Hugh described ‘position papers’ as being important for a brain tumour organisation. These are one page documents stating an organisation’s viewpoint on a particular topical question, such as a general election, or issues surrounding drug reimbursement. These should be prepared in advance of an important event or announcement so that

your group has specific answers ready when needed.

“Use the media as one of your advocacy tools.”

Hugh discussed the importance of gaining free, rather than paid, coverage. He advised composing a ‘narrative’ to your event, and to researching a particular journalist’s published work

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

before contacting him or her. It is also worthwhile being available on the phone, by email or by text outside of normal office hours when pitching a news story, Hugh said, so that you can support the journalist and provide the information they need quickly and at any time. “Treat journalists with respect,” he said, “they are likely to be sympathetic.” “The media are a tool to be used,” Hugh said. For example, if appearing on television, always wear your organisation’s branded clothing which

further enforces your message, he stressed, and try to avoid divisive topics (such as the link between mobile phone use and brain tumours which is still inconclusive). Case studies and personal stories are the key strength of brain tumour organisations and photos or imagery can be very powerful, he added. He also suggested keeping a database of individual supporters who would be prepared to appear in the media, so that they can be quickly called upon if a

news story requires it. He described his organisation’s “reactive” approach. They have online news alerts for brain-tumour-related topics and when a relevant news story arises they send a short email to news contacts with information relating to the story, offering their organisation as being available for further comment at short notice. It can be a highly effective strategy for achieving good media exposure “but you need to move quickly,” he said.

Parallel Workshop 2: Political Lobbying to Improve Brain Tumour Outcomes Facilitated by Carrie Treadwell (United States) The session saw lively discussion between participants as they explored innovative partnerships with government and shared examples of successful patient advocacy. With the understanding that partnerships and models vary widely from country to country, a number of uniting themes were discovered that transcended geographic borders.

“…empowering patients to connect directly with government provides a critical dialogue to ensure engagement and action.”

First, government bodies are powerful allies in the fight to increase research funding, brain tumor awareness, and easing access to better treatments and palliative care. Second, empowering patients to connect directly with government

Carrie Treadwell (Chief Research Officer, the

Carrie Treadwell said that advocates can bring

National Brain Tumor Society in the United States)

the voice of the brain tumour patient to the

facilitated the workshop on political lobbying for

policymaking table.

brain tumour patient advocates.

provides a critical dialogue to ensure engagement and action. The “patient voice” is powerful, demands attention, and it is heard by government officials. Third, the patient voice needs to be creative and bold to find solutions within the confining structures that many of our governments operate, but it can be done. The discussion also highlighted similar challenges faced by our patient communities regardless of the country in which they reside. Predominant issues

include access to treatments and the cost of care, though how the challenges presented depended greatly on each country’s healthcare system. There was also agreement that palliative care warranted a greater advocacy focus in terms of timing, payment, and eligibility requirements for brain tumour patients. It was noted that some countries have been more comfortable embracing this discussion, which could be attributed 61

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

to how their culture defines palliative care and perceives end of life issues. There was general consensus that brain tumour advocates could provide critical perspective and insight to drive this discussion. One last area of opportunity for advocacy focused on research funding and the role of government in funding and supporting discovery research and clinical trials.

Examples of innovative funding models in the US highlighting the power and creativity of patient advocates include the Creating Hope Act and Gabriella Miller Kids First Research Act. Both efforts were designed and are lead by patient advocates, in close partnership with US government officials, and identify new streams of funding for brain tumour research. While these efforts may not be easily reproducible in

other countries, it is the novel approach and tenacity of the advocates that should be replicated and embraced. The discussion ended with the group exploring issues surrounding clinical trials. The need to improve access to trials was a running theme, but with the caveat that it should be in tandem with increased patient support and education on how to navigate the clinical trial system.

Parallel Workshop 3: Managing Volunteers Facilitated by Jenny Baker (United Kingdom) Jenny Baker, Senior IBTA Advisor, was Chief Executive of Brain Tumour UK (now merged with The Brain Tumour Charity) from 2006 to 2013 and has extensive experience of working in a leadership and advisory role for a variety of non-profit organisations and on government boards. Using her experiences with Brain Tumour UK as a case study, she explained how the organisation grew under her leadership from a small charity to one that, by 2012, had a gross annual income of £2.5 million (US $3.8 million). “Building volunteering was the critical success factor,” Jenny said. By 2013, the charity had 100 volunteers in over 30 roles, over 700 fundraising volunteers, and a dedicated volunteer coordinator.

In using volunteers as a key resource in an organisation, “meaning well” is not enough.

Jenny Baker (IBTA Senior Advisor) ran the workshop on managing volunteers.

Jenny discussed the international context for and definitions of volunteering, including volunteering infrastructure agencies (such as the International Association of Volunteer Effort and the European Volunteer Centre) that could help and advise at a global and national level. It is estimated that 16% of the world’s population act as volunteers in some capacity, she said, and there are 93 million volunteers in the European Union alone. However, when using volunteers as a key resource in an organisation, “meaning well” is not enough, Jenny said. Rather, the key to success involves

putting in place a framework for managing volunteers. Summit workshop participants were mostly from patient advocacy organisations which had no paid staff and were solely volunteer-run. Discussions revealed the wide variety of volunteering roles in participants’ organisations, including patient advocates and lobbyists; website and Facebook page designers and editors; helpline advisers and patient/caregiver counsellors; local support group organisers; and medical professionals acting in an advisory capacity. Participants discussed the challenges of working with volunteers, for example the challenge of finding trustees who are willing to commit time and resources; complying with recent legislation (e.g. European rules on safeguarding children and vulnerable adults); policy writing and training. As organisations grow, the challenges can change, and these were also considered, such as the need to find appropriate business premises for offices.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 4: Understanding Online Tools and Social Media Facilitated by Stu Farrimond (United Kingdom) and Chris Tse (New Zealand) Stu Farrimond and Chris Tse, IBTA Senior Advisors, discussed the uses of social media for non-profit organisations. Taking an informal poll of the attendees, Stu and Chris found that most representatives used social media in some capacity for their organisation – primarily Facebook, Twitter and LinkedIn. Stu gave statistics showing that the attendees’ social media use was representative of non-profits globally (98% of non-profits use Facebook, 70% Twitter, and 55% LinkedIn).

Brain tumour organisations need to “use social media in order to be taken seriously in the 21st Century.”

The potential benefits of social media were discussed by the workshop attendees and these included:  social media has a wide potential reach (91% of online adults use some form of social media)  it is free  it can help generate an online community  it builds a brand’s reputation  it can generate revenue through donations  it is a fast way to deliver news Challenges to its use were also discussed. These were common for many of the Summit participants and, again, reflected those of non-profits globally:

Chris Tse (Senior IBTA Advisor) co-facilitated the

Stu Farrimond, the IBTA’s Senior Advisor in charge

Summit workshop on Understanding Online Tools

of digital technology co-facilitated a workshop on

and Social Media.

this topic with Chris Tse.

insufficient time to devote to social media activities  responsibility for managing social media falling on one person  not knowing what to post  not understanding how social media really works  staff members being resistant to adopting new technology. Stu and Chris said that only 8% of non-profits have a social media strategy that is integrated into their activities. They stressed that brain tumour organisations need to use social media “in order to be taken seriously in the 21st Century” and explained that a social media strategy was essential for achieving this. Social media is primarily a tool for communication, they said, and is effective when used to have conversations, rather than communicate news only. Social media channels have different strengths and weaknesses and the group discussed the pros and cons of each. The attendees wrote down their organisation’s overall objectives, then listed which of these objectives social

media may be able to help with. These included:  increasing reach  generating donations  developing stronger relationships with stakeholders  increasing credibility Stu explained the need to set targets based on each objective and showed the online tools that can be used to set, measure and monitor each target on the different social media channels. The ‘voice’ of an organisation was discussed and examples shown of organisations that use warm and inviting, educational, informal, and inspirational language. Having a social media policy and assigning team members specific roles ensures consistency and helps share the workload, Stu and Chris said. The session closed with tips and advice for preparing an editorial calendar that would provide ideas on how to consistently produce interesting social media content and engage ‘followers’.



Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 5 (A): Who Cares for the Caregiver? Facilitated by Maureen Daniels (Canada) and Helen Bulbeck (United Kingdom) Two workshops addressed the issue of ‘who cares for the caregiver?’ The first interactive workshop was run by Maureen Daniels, IBTA Senior Advisor, and Helen Bulbeck, Founder and Director of brainstrust, and focused on the needs of someone who is caring for a brain tumour patient. Participants were given a selection of documents to look at - “The brainstrust Pin Board” and “Walking a mile in our shoes: Tips from a brain tumour patient”, “The Genius of Swarms” and ‘Facts about carers’. These served as a stimulus for the rest of the workshop, with participants in small groups writing a 30-word statement about what it means to be a caregiver of someone with a brain tumour. A ‘real time pin board’ activity saw participants writing on sticky notes about the ways they currently help caregivers feel less isolated, more informed, more

Maureen Daniels, left, (IBTA Senior Advisor and Coordinator of the Gerry and Nancy Pencer Brain Tumor Centre in Toronto, Canada) and Helen Bulbeck (founder of brainstrust in the UK) co-facilitated one of two workshops on caregiving.

Ideas on how to help a caregiver feel: Less isolated:

Resourced:

Informed: Nurtured:

Know who is in your  Support groups  Internet  Build your team medical and support teams  Training  Clinicians  Make time for hobbies  Patient groups  Networking  Peer support  Relaxation  Social media  Professional counselling  Hospital  Spirituality  Talk to someone with  Caregiver information from  Talk to someone with a  Mindfulness a similar diagnosis recognised bodies similar diagnosis  Listening/problem  Social worker  Support group  “Caring Bridge’ – solving  Know how to delegate caregiver sessions internet communication  Allow people to help  Enjoy your hobbies  Advisors  Social media  Complementary therapies  Go to support groups  Information on how to  Caregiver days handle emergencies before  Have a regular date they happen  Time out  Food, wine and hotchocolate  Exercise  Acknowledge burnout/stress  Give yourself permission to take care of you• 

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

resourced and more nurtured. See bottom of page 64. A dynamic debate ensued and the participants concluded that there are two different types of caregiver: those without formal training (such as family and friends), and healthcare professionals/ other professionals (such as doctors, nurses and social workers). The “caregiver needs” of these two groups differ, the workshop participants felt.

The needs of the caregiver are just as important as the needs of the patient. The consensus from the workshop was that many resources are available for a caregiver (as shown by the pin board activity) but it can often be a challenge for a caregiver to accept help. Caregivers may be reluctant to put any emphasis on their

Joanie Taylor, right, a Summit participant from the US, contributes to a practical exercise in the Summit workshop focussing on “Who Cares for the Caregiver?”

own needs. When caregivers do accept help, their patient may be equally reluctant to accept any help from outside the family, the group felt. Suggestions arising from the discussions for empowering caregivers to accept help included creating a “Brain Tumour Caregivers’ Bill of Rights”, to complement the IBTA-produced

existing “Brain Tumour Patients’ Bill of Rights”. It was unanimously felt by participants that more time is needed to discuss these issues further, with a view to creating a cross-cultural tool to help caregivers. Crucially, the group also concluded that the needs of the caregiver are just as important as the needs of the patient.

Han Manders from Dutch Braintumour Contactgroup hersenletsel.nl (The Netherlands) puts his finishing touches to the pin board activity.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 5 (B): Who Cares for the Caregiver? Facilitated by Jelle Jan de Vries (Netherlands) and John de Bruin (Netherlands) The second ‘Who Cares for the Caregiver?’ workshop was facilitated by Jelle Jan de Vries and John de Bruin, both representatives of the Dutch Braintumour Contactgroup hersenletsel.nl.

“There is no work more important, more challenging or more meaningful than caring for a loved one who is ill.” John de Bruin, caregiving workshop co-facilitator, is with the Dutch patient organisation Werkgroep Hersentumoren Cerebraal.

The workshop explored what defines a caregiver, what care is, the tasks involved, and the challenges that caregivers face. “There is no work more important, more challenging or more meaningful than caring for a loved one who is ill,” said Jelle and John. Family caregivers are not professionals, they said, and caregiving can take place in different situations - at home, in hospital, and in an institute, for example. Care is also multifaceted and involves “the provision of what is necessary for the health, welfare, maintenance, and protection of someone”. The group considered the many possible tasks of a caregiver some of which might be:  emotional support  communicating with healthcare professionals  assisting with therapy  helping with administration and organisation  cooking  cleaning  transporting The workshop took some time to focus

on the challenges faced by caregivers and how these may be overcome. These findings are summarised below: Some challenges that caregivers face are:  juggling the responsibilities of work, personal needs, and providing care  dealing with a loved one who has behaviour or cognitive changes or loss of physical abilities  a deepening of the relationship with the loved one may also be accompanied by difficult emotions such as: anxiety, guilt, resentment, anger, sadness, worry and a sense of being overwhelmed. Jelle and John explained that such stresses for the caregiver may lead to physical symptoms for him or her, such as headaches, colds, and ‘burnout’. Hence it is important for caregivers to have strategies for coping with the substantial demands placed on them. Suggestions for dealing with caregivers’ challenges are:  take care of yourself, because only then can you take care of your loved one

seek professional/financial support get help from family and friends and identify the most important tasks and delegate these. Many will appreciate having the opportunity to be helpful (one example could be mowing the grass once a week)  use a care home or a professional home carer to get some respite from caring.  Share your experiences with others – “sharing is caring”.  

Jelle de Vries (Werkgroep Hersentumoren Cerebraal) co-facilitated one of the workshops on Who Cares for the Caregiver at the IBTA Summit.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Parallel Workshop 6: Psychological Support for Brain Tumour Patients Facilitated by Savita Goswami (India) and Rosie Cashman (Canada) Dr Savita Goswami (Clinical Psychologist at Tata Memorial Hospital in India) and Rosemary Cashman (Nurse Practitioner at the BC Cancer Agency in Vancouver, Canada) presented a case study of ‘Ari’, a 42-yearold man diagnosed with a glioblastoma, as a means to explore how psychological support can best be offered to brain tumour patients. ‘Ari’ is married and the father of three children under the age of ten. He was, until diagnosis, working as an engineer.

At initial diagnosis, the group felt that patients and their families should be supported in their hope for effective treatments.

The group discussed the three key stages of Ari’s journey: at initial diagnosis, when the tumour was found to have recurred three months after initial treatment, and in the transition to supportive and endof-life care when the tumour progressed after repeated treatments. At initial diagnosis, the group felt that patients and their families should be supported in their hope for effective treatments and helped to engage in the recommended therapies. There was consensus within the group that end-of-life discussions are usually deferred at this early stage and that all patients need help in overcoming the initial shock of the diagnosis and the disruption

Dr Savita Goswami is a clinical psychologist at

Rosemary Cashman co-facilitated the workshop

Tata Memorial Hospital in Mumbai, India and also

on caregivers. Rosie is an IBTA Advisor and a

works with the Brain Tumour Foundation of India.

Nurse Practitioner at the BC Cancer Agency in Vancouver, Canada.

to life it causes. Support groups, one-onone counselling, or support via networks of friends and families were suggested as most suitable at this stage. The group felt that at recurrence, the “nightmare becomes reality” as families and patients endure a second shock and face up, with a new understanding, to the grim reality of the disease. Group discussions revealed that psychological support throughout a patient’s journey varies widely between countries. in Milan, Italy, for example, a psychologist or social worker will meet with patients and families as soon as they learn the disease has progressed, whereas in the UK it can take months to receive such specialist support. In some countries only pediatric patients’ families or hospital in-patients receive psychological support. Japan is notable for having very little psychological support because families are expected to provide the majority of the care for the patient. Access to end-of-life care was found to be variable between countries. In the UK, so-called ‘palliative services’ only become

available when active cancer treatment finishes. In Italy, end-of-life discussions take place earlier and with the help of social workers, psychologists and nurses. All of the workshop representatives said they wanted better access to psychological support for patients and their families. Information about available resources should be easier to access.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Participants were asked:

What did you think was the most valuable aspect of the IBTA Summit? They said:

forming friendships around the globe, and networking

the ability to be together as a brain tumour community to share, support, enlighten, mentor and care for one another

gained new contacts and made new friends

sharing experiences itâ&#x20AC;&#x2122;s about resourcing, collaboration and people solving problems, not only money

coming together as one voice, which can make a difference

being among like-minded groups and individuals who face the same challenges and successes

meeting people, the interaction, sharing stories, learning about the disparities in care

being exposed to so many fabulous organisations and people - really enjoyed the pediatric presentations

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

the discussions on quality of life were excellent

having representatives of pharmaceutical companies present so we could share ideas

good to have a chance to meet real brain tumour patients and to hear their experiences

seeing what really motivated people can achieve sharing by the keynote speakers (clinical experts) was very valuable understanding worldwide approaches to treatment and care; hearing the varied perspectives but the common themes as well

exposure to people with shared interests from 27 countries makes one very grateful for the care we have in the US

learned more about clinical trials

Well done! Quality Summit!

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

THE BRAIN TUMOUR PATIENTS’ CHARTER OF RIGHTS

INTERNATIONAL BRAIN TUMOUR ALLIANCE

This version of the Brain Tumour Patients’ Charter of Rights was developed a number of years ago by the IBTA. We revisited this version of the Charter at the IBTA World Summit of Brain Tumour Patient Advocates held in Sitges, Spain in October 2015 to see if - following collaborative and consensus discussion among the Summit participants - the Charter needs revising in any way. It was decided at the Summit that the Charter did need updating, so an IBTA task force is being set up to drive this forward during 2016. Introduction: There are a number of documents dealing with patients’ rights, some of which touch on the rights listed here. But this Charter has been drafted from the point of view of the brain tumour patient with particular consideration for the difficulties which sometimes arise in the brain tumour journey. The IBTA has sought to ensure that the Charter will have worldwide relevance but we are mindful that many countries lack basic health facilities and the specialists and facilities relevant to the treatment of brain tumours. The Charter therefore represents an aspirational ideal which we should work towards. While asserting our rights we acknowledge that no rights can exist in human society without responsibilities.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

(1) My diagnosis and prognosis should be conveyed to me with accuracy and in a compassionate manner, and preferably by an experienced clinician or specialist. I have the right to ask questions and receive appropriate answers at any point. I have the right to an interpreter if one is available. (2) I have the right to maintain hope and to be supported in that hope by my medical team (3) I have the right to receive a correct diagnosis and treatment in a timely manner. I have the right to be included in the decision making process for my care. (4) I have the right to access the accepted standard of care in my country, no matter my age or ethnicity. (5) My option to access care will be based on need, and not my ability to pay for it. (6) I have the right to be told by my doctor about all available relevant treatments if he/she is aware of them in my country of residence, whether they are reimbursed by my country’s national health system or by my private medical insurance, or not. (7) I have the right to receive treatment and medication to relieve nausea, seizures, and brain swelling in particular, and other symptoms. (8) I have the right to be accompanied to my appointments by a family member or caregiver of my choice who may help me recall all that is discussed. I have the right to take notes and/or record the proceedings. (9) Either my or my legal guardian’s informed consent is required prior to any treatment procedure. I will be informed if clinically-relevant delays in my treatment are expected and will be informed of alternative service providers who may be able to provide services at an earlier time. (10) I have the right to multidisciplinary care, which may include - apart from my medical team’s help - support from other specialists and information about relevant support groups. (11) I have the right to be provided with the name and contact details of a staff member at my treating facility who may be able to answer urgent questions at times other than scheduled consultations. (12) I have the right to be given copies of all my medical records, including radiology reports, pathology reports, both histopathology and genetic analysis, and digital copies of all my scans if that process is available. If I have donated tissue or any other bio- specimen for research or clinical trial purposes I have the right to receive available, easy-tounderstand information about the genetic characteristics of my tumour should I wish to have that information. (13) I have the right to express my opinion on the level of care that I receive at an institution without fear of retribution, and will be given information on the means of expressing this opinion to management level staff. (14) I have the right to ask that my brain tumour is properly registered in my country’s cancer registration records, whether it is benign or malignant. (15) I have the right to be told about relevant clinical trials available in my current treatment facility and offered a place if I meet the inclusion criteria, or be directed to the contact details for a trial taking place elsewhere to which I might be suited. (16) I have the right to further opinions, including the right to be informed by a specialist if he/she believes they do not have the skills necessary to perform an operation, or administer a therapy, and to be given the name of another specialist or treatment facility from whom and from where such skills will be available. (17) I have the right not to be discriminated against in my community or my workplace because I have a brain tumour. However, I acknowledge that my brain tumour might render me unable to perform employment or tasks of which I was previously capable. © International Brain Tumour Alliance 71

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Summit Participants

Will Abbott (Philippines)

Susan Abbott (Philippines)

Co-founder, Philippines Brain Tumor Alliance (PBTA)

............................................................

William Abbott was diagnosed with a malignant Grade II gemistocytic astrocytoma brain tumor in October of 2006 following seven years of severe headaches and a focal seizure. On November 14, 2006 he underwent an awake craniotomy with Dr. Gerardo D. Legaspi who was able to excise sixty per cent of the tumor. Unfortunately, the tumor progressed to a glioblastoma four years later at which time William underwent a second awake craniotomy on September 2, 2010 followed by radiotherapy-IMRT and adjuvant Temodal therapy. In 2011, a new tumor was discovered in another location of the brain but it was inoperable so William participated in a clinical trial (Phase II) at Moores Cancer Center with Dr. Santosh Kesari and Marlon Saria in January 2012. Throughout this challenging journey, William and his wife Susan discovered there were a lot of things they needed to know as both a brain tumor patient and caregiver. The couple founded the Philippines Brain Tumor Alliance (PBTA) in 2007, just one year after Willâ&#x20AC;&#x2122;s first brain surgery as a way of helping others facing a similar diagnosis. The Abbotts provide brain tumor patients and their families with information on the various forms of assistance available, connect them with caring medical practitioners and assist them with access to drugs and laboratory tests. They also offer spiritual guidance and endeavour to empower others to be strong and resilient in their own personal journey. The couple provide counselling, facilitate group meetings and address various groups and organizations regarding lifestyle, health and nutrition choices for not only brain tumor patients but people in general. They also bring patients from other parts of the world to the Philippines for consultation and surgery. A PBTA Facebook page has been created with various posts and links relating to brain tumors.

I was the only witness to the first focal seizure suffered by my husband William C. Abbott prior to his initial diagnosis of a gemistocytic astrocytoma in October 2006. William underwent an awake craniotomy shortly thereafter and the same such procedure in 2011 after a glioblastoma was discovered. Neurosurgeon Dr. Gerardo Legaspi was able to excise sixty per cent of the tumor during the first craniotomy and almost ninety nine per cent of the GBM. I witnessed all of the seizures and aura episodes and became Williamâ&#x20AC;&#x2122;s primary caregiver. I organized all of his medical records, managed all medications, read medical journals and developed a more rigid holistic routine and change of lifestyle for Willie. I also supervised, prepared and cooked most of his meals; bought all his medicines, organized his life, searched for resources and worked twice as much to increase our income. We realized our journey was very, very difficult and challenging. We thank God for having very supportive family, friends and communities and for our faith. As a way of giving back, we founded PBTA to raise awareness about the disease, inform the general public about prevention and encourage other brain tumor patients to confront the challenge with strength and resilience. We wanted to inspire others on the same journey and give them hope in spite of the circumstances. I search for information and articles to post on our Facebook page and blog site and we take time to counsel patients and their families both online and at meetings. We share information with as many people as possible so that they too will be more confident to confront their predicament. I am a school director and educator particularly with the deaf and hard of hearing. I work hard to educate and assist the needs of persons with disabilities as well as encourage and educate brain tumor patients and their families.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Hugh Adams (United Kingdom) Campaign Manager, Brain Tumour Research ............................................................. Hugh joined Brain Tumour Research in 2010 to head up three of the charity’s fundraising campaigns and to drive forward the national PR strategy. Highly successful in raising the charity’s status and public perception, Hugh is now a familiar and authoritative spokesperson and sought after source for comment on national TV and in printed media. Hugh has built a flourishing career in national broadcast media, which included many years as a freelance television cameraman and photographer. With a well-established network of contacts within film and media, plus expertise in digital technology, Hugh has propelled the charity’s PR reach to new levels and introduced innovative strategies and direction aided by a dedicated team of PR professionals. His skills have also introduced a new element to communications by producing, directing and writing all of the charity’s promotional video output, thus gaining wider audience exposure and initiating additional fundraising within the corporate and retail sectors. Brain Tumour Research exists to raise the awareness of and grow the funding for scientific research into brain tumours and improve outcomes for brain tumour patients. The charity supports the UK’s largest dedicated group of laboratory-based brain tumour scientists working across a network of four Centres of Excellence, progressing world-class research into brain tumours and working tirelessly to glean new layers of understanding about this disease. As well as providing direct funding, Brain Tumour Research provides additional support through a dedicated fundraising team, extensive national and regional media coverage and detailed online activity. Its centres are based at Queen Mary University of London, Imperial College, Plymouth University and the University of Portsmouth. Brain Tumour Research is also an umbrella charity, proudly working in collaboration with Member Charities around the UK. Together with this network and supported by the achievements of our Fundraising Groups and activists across the UK, some £4 million was raised in 2014 to fund both brain tumour research and to provide support for patients and families.

Irene Azong-wara (Cameroon)

............................................................. Irene Azong-wara was born in Nkwen, Cameroon, in 1984. She graduated with a BSc. in Sociology and Anthropology with a minor in Management at the University of Buea Cameroon in 2004 and an MSc. Degree in Globalization & Economic Development at the University of Antwerpen (Institute of Development Policy and Management) in Belgium in 2008. Irene worked as field assistant at SALID Bamenda from November 2003 to January 2004 and from 2006 to 2007, she was marketing and communications officer at AVILYOS telecommunications in Douala. She went on to hold several additional positions between 2010 & 2014, working as Corporate Social Responsibility SOLWODI, Duisburg; and Assistant Project Manager, Camfomedics Germany, Essen.

Jenny Baker (United Kingdom) IBTA Senior Advisor and former Chief Executive of Brain Tumour UK ............................................................. JENNY retired in 2013 after six years as Chief Executive of the national charity, Brain Tumour UK which became the Brain Tumour Charity after merging with the former Samantha Dickson Brain Tumour Trust. Since retiring from paid employment, Jenny has supported the IBTA voluntarily as a senior advisor. She previously worked with the National Trust and in 2005, was awarded the Order of the British Empire in recognition of her services to volunteering and community action in the UK heritage and environmental sectors. Jenny is now a national committee member of Healthwatch England, the statutory champion for patients and service users accessing any aspect of health or social care services across England. Locally, Jenny is chair of Healthwatch Buckinghamshire. These along with former and ongoing non-executive director roles have brought valuable insights into the vital support and services provided by not-for-profit groups and charities and the difference they make in people’s lives and well-being. 73

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

and board development. Boettcher was a 2006 Women in Business Awards recipient in the Triangle, N.C., area. Before beginning her nonprofit career, Boettcher worked in the media and public relations, including positions at North Carolina State University, Peace College and Progress Energy and more than a decade as an Associated Press reporter. A native of Hamilton, Ohio, she holds a journalism degree from Eastern Kentucky University.

Francesca Berrini (Italy) Associazione Italiana Tumori Cerebrali ONLUS - AITC ............................................................ Francesca Romana Berrini of Italy is a psychologist/psychotherapist specializing in the oncology sector. She has been working with brain tumour patients, caregivers and healthcare providers at the Neurological Institute Carlo Besta in Milan since 2007. Since 2009, she has been resource coordinator for AITC (Italian Brain Tumor Association), one of Italy’s most important patient organizations. Its mission is to support, help, collect and develop information and interest on this rare pathology.

Robin Boettcher (United States) President and CEO – Pediatric Brain Tumor Foundation (PBTF) ............................................................ Robin Boettcher is charged with leading the world’s largest nonprofit funder of childhood brain tumor research and significantly increasing support for the 28,000 American children living with the disease. Boettcher has more than 30 years of experience in health nonprofit management and communications. Before joining the Pediatric Brain Tumor Foundation in September 2012, she served as vice president of chapter and community partnerships for the National Parkinson Foundation in Miami. Her accomplishments included establishing a new chapter services department and launching NPF’s first national signature fundraiser, a walk for Parkinson’s disease. Boettcher also previously served as a national field director and executive director for the Leukemia & Lymphoma Society and as president of the National Multiple Sclerosis Society’s Eastern North Carolina Chapter. She brings experience in all areas of nonprofit management, from finance and operations to fundraising and staff

Helen Bulbeck (United Kingdom) brainstrust ............................................................. Helen has become immersed in the ‘world’ of cancer. Her daughter was diagnosed with a brain tumour in 2004 and Helen was diagnosed with head and neck cancer in 2007. The prognosis for both is, following treatment, good. These events have changed the direction of Helen’s life; she is now director of a national brain cancer charity which she founded in 2006. Helen uses the experience of being a patient, relative, member of the public and a carer to support thousands of patients who have brain cancer. She works with a significant number of cancer-related institutions, professionals and charities, to ensure that she provides the most up to date, relevant and appropriate information. This 360 degree view means that she is well placed to understand the perspectives of patients, carers and healthcare professionals. Her roles in brainstrust and as a consumer representative with various bodies are as a disseminator of information and the provision of a network and community, so that she can provide advice on achieving effective consumer involvement and creating a voice. As founder/director of brainstrust, Helen’s key drivers are the patients, their carers and their healthcare professionals, with whom she interacts daily. Consumers provide insights and expertise to improve the relevance of the research to problems faced by patients and the wider public; there is nothing as important as ensuring that the public voice is heard. Her ethos of ‘none of us is as smart as all of us’ is a core value for her. Elemental to Helen’s work is high performance coaching. This sets brainstrust apart. When we are no longer to able to change a situation we are challenged to change ourselves. You are the person who is ultimately going to have the greatest impact on your life. The coaching relationship enables people to face these challenges, so that they learn how to develop resilience and utilise resources to their full potential.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Helen stays up to date with relevant research, ensuring her reading is not brain centric. She works closely with other cancer charities and organisations and is working with the National Cancer Registry on the development of a patient information data portal and with a range of centres on developing a network of brain tumour tissue banking. The skills she has developed whilst studying for her PhD means that she is tenacious in spirit, but with a listening ear.

Rosemary Cashman (Canada) IBTA Senior Advisor and BC Cancer Agency .............................................................

Dijana Calopek (Croatia) GLIA Association ............................................................. Dijana Calopek is secretay of Glia – Croation Brain Tumour Association. Over the past year since its formation, she has had the oppotunity to meet and work with some wonderful people. Membership continues to grow not only in tems of of patients and their families but medical staff and individuals wanting to volunteer their free time helping and using the knowledge they’ve gained in various professions. Members are encouraged to participate and share their experiences with the rest of the group during regular monthly meetings at which lecturers are brought in to provide additional information and support. With the help of members and their friends, the association organized its first Grey Ribbon Day in June of this year during which time booths were set up in four major Croatian city squares. Thanks to a large donation of lavender from the kind people of the Island of Hvar, thousands of bouquets of lavender and small grey ribbons were made and given away to passers-by. Small fliers containing basic information about brain tumors were also distributed as well as contact information for the association. The succesful campaign received a great deal of media coverage and brought together all those people who wanted to join and be a part of the journey. Although Dijana’s career as a journalist is in no way related to brain tumours, she’s proud to be a part of Glia.

Rosemary Cashman MA, MSc(A),NP (A) is a Nurse Practitioner at the BC Cancer Agency in Vancouver, British Columbia and works directly with brain tumour patients and their families. In addition to her responsibilities in the clinic, her activities include: the production of Headlines, a quarterly patient newsletter; facilitation of a patient and family caregiver support group; development and co-direction of a Patient Family Advisory Council; planning and implementation of a biannual Patient Information Day; initiation and implementation of research projects related to improved patient care and caregiver support; publication of articles and book chapters related to neuro-oncology. She is originally from the United States, but moved to Canada in 1986, where she lived first in Montreal and Toronto before settling in Vancouver in 2005. She is an Adjunct Professor at the University of British Columbia, Faculty of Nursing, and also serves on the Board of Directors of the Brain Tumour Foundation of Canada, a national advocacy organization dedicated to support, education, information and research. She has been an active partner of IBTA since its founding meeting in Edinburgh, UK, in 2005.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Gloria Castellvi (Spain)

Garth Cruickshank (United Kingdom)

Fondo Alicia Pueyo

Professor and Consultant Neurosurgeon Queen Elizabeth Hospital Birmingham and University of Birmingham UK.

............................................................ Gloria Garcia Castellvi was born in Barcelona, Spain in 1969. With a degree in economics, she worked in the bank insurance sector until 2006 when her youngest daughter Alicia was diagnosed with a diffuse intrinsic pontine glioma (DIPG). DIPG is a terrible childhood brain tumor, inoperable and deadly in almost all cases. There wasn’t much known about it at that time and little hope of survival for children affected. After Alicia passed away in 2007, Gloria and her husband decided to set up the Fondo Alicia Pueyo (Alicia Pueyo’s Fund). An economic fund in memory of their daughter, it was formed to promote research into this terrible brain tumor and support families affected. The fund is not an independent institution and it is integrated with Sant Joan de Deu Research Foundation, the research institute of Hospital Sant Joan de Deu in Barcelona where Alicia was treated. The Fondo Alicia Pueyo organized its first international DIPG meeting in Barcelona in February 2009 which kickedoff international collaboration and continues to increase DIPG knowledge and give hope for new treatments in the near future. Gloria did not return to work. She remained at Hospital Sant Joan de Deu as volunteer for a few years and is currently the Head of Fundraising at the institution. She is married and mother to Alicia, 18-year-old Ferran and three-year-old Patricia.

............................................................ Garth Cruickshank is Professor of Neurosurgery at the University of Birmingham, and Queen Elizabeth Hospital in the United Kingdom. After completing a PhD in Pharmacology, he obtained his MD at the Royal Free Hospital London and FRCS as a general surgeon in London. He continued his neurosurgical training at the renowned Institute of Neurological Sciences in Glasgow (FRCS SN). After four years as a Senior Lecturer he took up the Chair of Neurosurgery in Birmingham in 1997. Initial brain tumour research work was focused on demonstrating the hypoxic nature of malignant brain tumours from the first intraoperative polarographic measurements in patients undergoing surgical resection. In collaboration with Professor Moira Brown he undertook the first therapeutic human studies with oncolytic herpes virus (HSV1716) in glioblastoma in 1997. In Birmingham he championed the Improving Outcomes Guidance service specification for the delivery of brain and CNS cancer services throughout the UK which is now nationally peer reviewed annually and accelerated the delivery of neuro-oncology as a neurosurgical subspeciality. He has served on the Cancer Services Committee of the Royal College of Surgeons, the NCRI Brain Tumour clinical research group and the committee of the British Neuro-Oncology Society. He is currently Chairman of the UK DVLA neurology panel and a council official of the British Association of Oncology Surgeons and is an advisor to NICE (National Institute for Health and Care Excellence) and the CQC (Care Quality Commission). He has been an examiner for final FRCS in neurosurgery for the last ten years. Professor Cruickshank heads up a group of five consultant surgeons providing specialist neuro-oncology services to the West Midlands population of 6.7m including Cyberknife, awake craniotomy and enhanced resection with 5-ALA. He is actively Principal Investigator (PI) and Chief Investigator (CI) on a number of UK portfolio, commercial and locally instigated trials including DC-Vax, and novel local “depot therapy”.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Maureen Daniels (Canada)

Dominique David

IBTA Senior Advisor and Coordinator of The Gerry & Nancy Pencer Brain Tumor Centre

Lâ&#x20AC;&#x2122;Association pour la Recherche Sur les Tumeurs Cerebrales (ARTC Sud) .............................................................

(France)

............................................................. Maureen Daniels, a registered nurse, has been Coordinator of The Gerry & Nancy Pencer Brain Tumor Centre at Princess Margaret Cancer Centre, University Health Network, in Toronto, Canada for 15 years. Prior to that she spent a decade working in neurosurgical intensive care. She has been a facilitator of support groups for patients living with brain tumors and their families for over 20 years. Throughout her career, Maureen has been extensively involved in patient education and program planning.

Dominique David is the founder of the Association ARTC Sud which is dedicated to brain tumour research. She has been its president since 2005. This non-profit association interacts with brain tumor patients and their families and contributes to the funding of brain tumor research through caregivers, financing PhD students and providing equipment exclusively to state-owned laboratories. Moreover, ARTC Sud supports its members, informs them regularly and represents their interests in medical establishments. Dominique David has also been a member of the committee of users and professionals within the National Cancer Institute (INCa) since 2013, where she is particularly involved in research. Finally, she represents patients in different meetings. Dominique David, a graduate of Kedge Business School in Marseille, is also a graduate in the history of art.

John de Bruin (The Netherlands) Dutch Braintumour Contactgroup hersenletsel.nl ............................................................. John de Bruin resides in Lexmond, Holland. In January 2001, his wife Astrid was diagnosed with a brain tumour at the age of 35 following an epileptic seizure. Within two weeks, she underwent surgery and a large part of the tumour was removed. The tinnitus disappeared but she continued to suffer from headaches and personality changes. Her condition began to deteriorate at the beginning of 2002 and she passed away in May 2002, only 16 months after her diagnosis. They had three young children at the time ages four, six and seven. John and his wife had a lot of questions following surgery 77

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

so in the autumn of 2001 they attended a couple of meetings of the Dutch Workgroup Brain Tumours Cerebraal (Werkgroep Hersentumoren Cerebraal) for support. John joined the workgroup after his wife passed away and has since become co-organizer of five national meetings each year. Participants are able to ask questions during these meetings and guest speakers are brought in to discuss a variety of brain tumour-related subjects. There are also discussion groups where participants can talk about their personal experiences. A Facebook group has been set up to offer additional support and each year John organizes Public Day Brain Tumours (Publieksdag Hersentumoren) which is attended by about 250 participants and 15 guest speakers. His two youngest daughters still live at home and he has a new partner. John works as a manager in the logistics sector.

Naomi Dempsey (Ireland) Brain Tumour Ireland ............................................................ Naomi Dempsey co-founded Brain Tumour Ireland along with some other family members in November 2012. She is currently its secretary and a member of the Patient Advocacy and Support SubCommittee of Brain Tumour Ireland. Naomi lost her mother to a GBM (Grade 4 brain tumour) in January 2012 and since then has been actively working on trying to improve services for brain tumour patients and their carers in Ireland. Naomi also sits on the Irish Cancer Society’s National Brain Tumour Working Group and hopes to use this as a platform to try to increase the amount of funding currently allocated to brain tumour research and also to highlight the specific needs of brain tumour patients as opposed to other cancer patients. Naomi lives in County Kildare with her husband Alan and daughter Lucyanne. Naomi is by background a qualified optometrist and a qualified social worker. She has in the past worked as a medical social worker in a hospice and as a result has a particular interest in palliative care. She would like to see improved and earlier access to palliative care services for any brain tumour patient who requires it.

Jelle Jan de Vries (The Netherlands) Dutch Braintumour Contactgroup hersenletsel.nl ............................................................. In 1994 my partner Alie was diagnosed with a tumor close to the pituitary gland at the age of 27. She had surgery several times and underwent radiotherapy. The effects of the treatments were severe. She was temporarily partly paralyzed and in the last few years of her life, she remained in a semi-coma. Unfortunately, she passed away five years after the diagnosis. Immediately after the diagnosis we became members of the Dutch Brain Tumor Contactgroup hersenletsel.nl. Soon after joining I became a volunteer and for some years I was one of the two chairmen. At the present time I am a member of the executive board. The Brain Tumor Contactgroup hersenletsel.nl organizes five meetings a year, with about 35 people attending. During the full-day program, we offer a qualified speaker in the morning and in the afternoon we have several discussion groups. We operate a Brain Tumor Contact Group on Facebook with about 370 members, a group on Kanker.nl where there are about 500 brain tumor members and we are available for support by email or telephone. We also take part in the organization of the yearly ‘Public Day Brain Tumors’ (Publieksdag Hersentumoren), with about 15 different qualified speakers and 200-250 people in attendance. After Alie passed away I took some time off and circumnavigated the world with my sailboat. During this trip I met my current Australian partner and we live together with our two sons in The Netherlands. At the moment I am a project manager, managing IT projects in the building industry.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Stu Farrimond (United Kingdom)

Kate Ferguson (Northern Ireland)

IBTA Senior Advisor and Editor, Guru Magazine .............................................................

Brainwaves NI

Stuart is the IBTAâ&#x20AC;&#x2122;s Digital Technology Advisor. He helps coordinate e-News stories and is in charge of distribution for the IBTA monthly e-newsletter. He lives in Trowbridge, Wiltshire, United Kingdom. Stuart is a medical doctor but following the diagnosis of a brain tumour in 2008, he was forced to leave the profession. He retrained and worked as a teacher in further education for three years before embarking on a freelance career. He now writes, edits, and provides web design and technical support for a variety of organisations. His health and science writing has been featured widely in both the printed and online press and he has been a fundraiser and lobbyist for brain tumour charities. His brain tumour â&#x20AC;&#x201C; an astrocytoma â&#x20AC;&#x201C; was treated surgically and he has had clear scans for five years. And counting.

Kate Ferguson is Honorary Secretary of Brainwaves NI. Her brain tumour journey began in 1992 when her husband was diagnosed with a choroid plexus papilloma. At the time, there was no information and support available to them. Together, with other families who understood the need for a charity to support those undergoing the same journey, they have been providing information and support to brain tumour families ever since. As a volunteer, Kate has seen the charity grow from a small handful of members to now supporting 211 families. Kate is the first point of contact for newly diagnosed patients; helping with emotional and practical support. She organises meetings, information evenings, social outings and weekend breaks, attends conferences and speaks as a voice for patients. Her husband sadly lost his brain tumour battle in 2008 and her over-riding passion in life is to continue supporting brain tumour patients and their families. In 2014, she was awarded an MBE for services to brain tumour patients and their families in Northern Ireland.

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Wendy Fulcher (United Kingdom) Chairman of Brain Tumour Research (BTR) ............................................................. Wendy Fulcher is a founding Trustee and Chairman of Brain Tumour Research. Brain Tumour Research represents the united campaign voice of its 19 member charities. Established in 2009 to raise awareness and provide substantial funds for brain tumour research, its ultimate goal 79

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

is to improve patient outcomes and find a cure for brain cancer. Brain Tumour Research supports the UK’s largest dedicated group of laboratory-based brain tumour scientists and clinicians working across a network of four Centres of Excellence, progressing world-class research and working tirelessly to glean new layers of understanding about brain tumours. Its centres are based at Imperial College London, Plymouth University, Queen Mary University of London, and University of Portsmouth Wendy founded the Brain Tumour Research Campaign (one of the member charities) after her husband John died from a brain tumour in 2001, together with his neurosurgeon, Mr Kevin O’Neill. The BTRC’s purpose is to fund laboratory research at Imperial College’s Hammersmith campus, and clinical research at Charing Cross Hospital, the medical campus for Imperial College London and one of the Imperial College Healthcare NHS Trust hospitals. In the 11 years since the campaign began, over £2 million has been raised, a dedicated Molecular Neuro-oncology Laboratory established and several fellowships and equipment funded in both scientific and clinical fields. Wendy was a member of the Brain/CNS Clinical Studies Group for the NCRI (National Cancer Research Institute) for five years and currently serves as a third sector member of the CNS Site Specific Clinical Reference Group (SSCRG) for the National Cancer Intelligence Network (NCIN) as well as serving as a lay member on Imperial College NHS Trust’s Tissue Management Committee and the Patient User Group for Charing Cross Hospital’s Neuro-oncology Group. She also plays an active role through both BTRC and Brain Tumour Research in lobbying the British government and national cancer charities for greater and more equitable support for brain tumour research through the Brain Tumour All Party Parliamentary Group, as well as working to raise public awareness of the desperate need for more research funding in the brain tumour field.

Jennifer Gouchie-Terris (Canada) IBTA Senior Advisor and Vice-Chairperson, Brainchild Maritimes ............................................................ Jennifer Gouchie-Terris, a veteran journalist from Riverview, New Brunswick, Canada, was thrust into the brain tumour world in 1998 when her four-year-old son Brandon was diagnosed with a non-malignant JPA brain tumour.

She immediately became involved with the Maritimes Chapter of the Brain Tumour Research Assistance and Information Network (Brainchild) at the IWK Children’s Hospital where Brandon was undergoing treatment. The following year she was appointed chairperson of that volunteer organization which continues to provide support, education and information to more than 100 families of children with brain and CNS tumours throughout the Maritime Provinces. In early 2000, Jennifer was named the Brainchild representative to the Canadian Alliance of Brain Tumour Organizations (CABTO); an alliance of volunteer organizations dedicated to enhancing the quality of life of brain tumour patients and their families. She eventually became chairperson of that group as well as and as a result of her involvement with CABTO she played an instrumental role in the creation of a Private Members Motion calling for a uniform national standard in the reporting, collection and surveillance of all brain and CNS tumours in Canada – malignant and non-malignant. In fact, she and Brandon had a private meeting with Prime Minister Stephen Harper at his office on Parliament Hill prior to the first reading of Private Members Bill M-235 which was passed by an over-whelming majority in the House of Commons on Feb. 14, 2007. Despite losing her son to the disease in October 2012, Jennifer has continued in her role as a patient advocate and remains committed to improving data collection in Canada. Although CABTO no longer exists, she and other members of the organization have worked closely with representatives of the Public Health Agency of Canada, the Canadian Council of Cancer Registries, Brain Tumour Foundation of Canada, Neurological Health Charities of Canada and other key players in the brain tumour community to improve the tracking of all types of brain tumours in order to achieve a better understanding of the incidence and prevalence of brain tumours in Canada. Jennifer currently serves as vice-chairperson of Brainchild Maritimes and is a member of Brain Tumour Foundation of Canada’s Advocacy Committee. She is honored to have had the opportunity to assist in the planning of this year’s IBTA Summit alongside Kathy Oliver and fellow members of the IBTA advisory group. She is the proud mother of an older son, Colton, age 23.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Savita Goswami (India)

Anita Granero (France)

Clinical Psychologist, Tata Memorial Hospital, Maharashtra, India .............................................................

Founder and President, Oscar’s Angels .............................................................

Mrs. Savita S. Goswami is a Clinical Psychologist working in the specialised area of psycho-oncology and palliative care psychiatry in the psycho-oncology service at Tata Memorial Hospital, Mumbai, India, for the past 20 years. She has a keen interest in survivorship care and paediatric psycho-oncology, especially adolescents and young adults (AYAs) with cancer. She has been working closely with the hospital’s Neuro-Oncology Disease Management Group on neurocognitive assessment for patients with brain tumours receiving radiation therapy. She has an avid interest in conducting support groups for cancer patients and their caregivers and puts on a monthly group for brain tumour patients. She is an active member of the Survivors Clinic which has been in operation at the hospital for the past 25 years. She is also a mentor for childhood cancer survivors support group and has several publications to her credit, mainly in the area of neurocognitive functioning of brain tumour patients. She is involved in research work in psycho-oncology and has done research on caregivers’ distress in palliative care. She runs training programmes for nursing staff in oncology and conducts workshops for staff working in the hospital as part of the service of the Psycho-oncology Department. Her interest lies in expressive arts therapy, especially drama therapy. She herself is an accomplished national fellowship award winning theater actress and has been part of a social drama themed motion picture in Marathi (Champions) which won a national award.

Anita is Italian and has been living in France for 23 years. She is Founder and President of Oscar’s Angels, a charity based in France with relations in Italy and the United States. Active since 1998, Oscar’s Angels’ main objective is to provide care and support to the families of children with brain and spinal cord tumours and severe neurological conditions particularly during their hospitalisation. In 2001, the charity created the first French Parent Advocate Program in Pediatric Neuro-Oncology at the Children’s Hospital of Toulouse and with the help of healthcare staff, brought into existence a new kind of volunteer perfectly integrated into the medical teams and able to share with them all information necessary to care for the family in the best possible way. Its main purpose was to introduce hospital teams to a highly trained non-medical volunteer who could represent the families, bring a different perspective to their care and help the healthcare staff to better understand the emotional stress and needs the families have to face during these painful experiences. This exceptional and innovative new role is now being recognized as essential by many in the medical community in support not only to the families but to healthcare staff as well. In 2014, this unique program received the official national label “Users’ Rights” from the ARS (Agence Regional de Santé) for “The Volunteer’s Role in Pediatric Neuro-Oncology Care.” Oscar’s Angels is also recognised in the hospital community for its unique work as a family support charity in the “Paediatric End-of-Life Care.” The organisation hopes to share, as much as possible, this very positive experience of a partnership between a parents’ charity and a children’s hospital in order to stimulate other organisations around the world to start similar Advocate Programs and bring awareness to pediatric neuro-oncology. Anita holds a DU in Palliative Care and is a member of the PACT team of the Children’s Hospital of Toulouse, France. She is also in charge of Oscar’s Angels’ “NO SURRENDER Dream Team” that offers parents free tickets to live music events and aims to make music a routine part of pediatric care.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Ivan Karagyazov (Bulgaria) Global Disabilty Movement ............................................................. Ivan Karagyozov (Edu.D) is a consultant and university guest lecturer with specific scientific interest in people with disabilities. He has over 15 years experience in the creation and management of NGOs structures and local community organizations and is a prominent activist for the rights of people with disabilities. He is also the author of several studies and publications related to the subjects of children, youth and adults with mental, sensory and physical disabilities and has created and organized numerous media campaigns to change negative attitudes towards people with disabilities. In fact, his reports have been published and used by both the European Commission and the US State Department. He is a leading specialist in training on topics closely related to various disabilities, founder of an organization which protects the rights of people residing in institutions with mental illnesses, and partner and counselor on several international organizations involved with disability issues.

Nihat Karaoglu (Turkey) Turkish Brain Tumour Patients’ and Caregivers’ Association ............................................................. Nihat founded the Turkish Brain Tumour Patients and Caregivers’ Association in 2009 after his sister was diagnosed with a rare and inoperable form of a brain tumour called gliomatosis cerebri. The organization currently consists of more than 1,000 members across the country. Nihat holds a degree in Computer Science and Bioinformatics

from Vrije Universiteit Brussel in Belgium where he also conducted scientific research in the field of detecting genetic markers in DNA including cancers. He currently works as technology consultant in the development of medical diagnostic devices such as blood and DNA analysis. Nihat is also the editor of the Turkish language magazine beyintumoru.org. With a monthly readership of 30,000, the magazine educates and informs patients on developments in brain tumour treatments. Nihat has lived in several countries in Europe and speaks English, French, German, and Dutch fluently in addition to his native Turkish. He and his wife Merve currently live in Switzerland and dedicate most of their time to helping and improving the lives of brain tumour patients through advocacy, education, peer support and collaboration with patient organizations all around the world.

Carol Knight (United Kingdom) IBTA Senior Advisor ............................................................. Carol lives in the UK and provides administrative support for some of the IBTA’s projects. Carol served as one of the volunteer stage managers for the two UK concert tours given by American singer/songwriter/brain tumour survivor David M. Bailey organised by the IBTA in 2007 and 2008. She says: “I had the privilege of seeing the wonderful support and hope given by the IBTA to the brain tumour community, especially families at those concerts. That hope is spreading globally through the IBTA. “I was also delighted to help with the administration for the IBTA’s First World Summit of Brain Tumour Patient Advocates in 2013 and I shall continue to assist the organisation, knowing that in some small way I am helping to spread that hope and awareness.”

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Valerija Korent (Croatia)

Sharon Lamb (United States)

GLIA Association

IBTA Senior Advisor and Neuroscience Nurse (Ret’d) .............................................................

............................................................. Valerija Korent is a nurse, author of the Croatian-language brochure ‘’Living with a Brain Tumour – Introduction to the Disease’’ and President of the Glia Association. The idea of establishing an association for people with brain tumors originated from the brochure which Valerija dedicated to her late husband in the hopes of providing help and comfort to people in similar situations. The brochure is informative in content, describing the main types of brain tumors, symptoms, basic diagnostic methods and therapeutic modalities, prognosis and personal experience. The Glia Association was created in consultation with Ana Misir Krpan and Kresimir Loncar, oncology and radiotherapy specialists from the University Hospital Center Zagreb. Without them and the doctors and fellow nurses who were actively involved in the work of the organization, its establishment would not have been possible. Prior to the Glia, there was no organization to represent patients with tumors of the central nervous system. There was a definite need given the number of new cases (420 malignant and 200 benign) every year and lack of information on side effects of treatment, obstacles in the health sector, limited availability of drugs and diagnostic methods, lack of molecular diagnostics and resocialization, and a multidisciplinary approach where psychological help is not a standard part of treatment. The main goal of the association is to ensure educational and psychosocial support and sensitize the public. In June, the Republic of Croatia organized its first Gray Ribbon Day during which time bouquets of lavender and gray ribbon were handed out to citizens in four cities. In September the association became actively involved in the development of a new brochure called “What happens after the diagnosis of brain tumors? - Practical advice and psychological aspects.’’

Sharon trained as a psychiatric nurse at Kingston Psychiatric Hospital Nursing School in Kingston, Ontario, Canada. She then moved to Montreal, Quebec, worked at the Montreal General Hospital , and later moved to the Montreal Neurological Institute for a six month neuro-nursing post-graduate course. After graduation Sharon moved to New York City and helped two other nurses open a cardiac intensive suite for both adult medical patients and pediatric surgical patients. The following year, she moved with a nurse friend to San Francisco, where she remained and married. Sharon did private duty nursing for a year until she knew where she wanted to work full-time. Her long term neuroscience career started at UCSF Medical Center in the neuro-radiology department. After eight years of doing the nursing for all the neurological studies, Sharon transferred to neurosurgery working for two surgeons who did chronic pain management. She was the stereotaxic nurse for 20 years assisting them in the operating room as patients were awake during their surgeries. Dr. Mitchel Berger (NS) became the Chairman of Neurological Surgery, and asked her to be his nurse, functioning in a Clinical Nurse Specialist (CNS) role for his practice. Her OR work stopped then. A year or so later, Sharon transferred to the Department of Nursing as the CNS for neurosurgery, neurology and orthopedics. Finally, her last position at UCSF was the Nurse Manager for the Multiple Sclerosis Center. They had eleven neurologists, two front office people and an authorization staff for 70-80 new referrals monthly. Sharon resigned after four years and does occasional work for them in retirement. As the stereotaxic head nurse, Sharon became involved with the brain tumor community, as Dr. Philip Gutin was implanting radioactive seeds for recurrence of GBM patients. At that time, there were no support programs for them and their families, so she began a brain tumor support group in San Francisco and a few years later, one in Palo Alto at Stanford. Those continue to this day, thanks to wonderful nurses who help her with co-facilitation. Sharon was one of the original Board Members of Friends of Brain Tumor Research, a support agency of UCSF to help Dr. Charles Wilson raise research dollars for the Brain Tumor Research Center he had established. That became the National Brain Tumor Foundation, and eventually that organization merged with Brain Tumor Society of Boston to be renamed, National Brain Tumor Society. Sharon 83

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

resigned from the board five years ago. Currently, Sharon remains active in the brain tumor community through her two support groups and referrals from all over the country, or world for patients / families going through this disease.

Lia Le Roy (Belgium) President - Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw) ............................................................

Arja Leppanen (Sweden) Svenska Hjarntumorforeningen ............................................................ Arja Leppänen is Process Manager for equal cancer care at the Regional Cancer Centre Stockholm-Gotland, Sweden, and Administrator of the Swedish Brain Tumour Organisation. She lost her brother to a brain tumour in the same period as she was diagnosed with breast cancer. Arja has served on advisory boards for the European Medicines Agency and the Swedish Medicinal Products Agency among others. She is Secretary of the Swedish Network Against Cancer, President and Chair of the Cancer Careers Foundation in Sweden, and the past Executive Director of the Swedish Breast Cancer Association. She has previously been a Project Manager for the European Commission project ‘Promoting new measures for the protection of women workers with oncological conditions’ and the ‘Economical and social burden of cancer’. She has also participated in several international advocacy training sessions and been an invited guest speaker at international and national conferences.

Lia Le Roy is the president of the Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw). She and her husband Frank Boeye, who had a glioblastoma, founded this patient support and advocacy group in 2005 together with other brain tumour patients and a scientific council. Up until March 2012, she was the secretary of the organization and her husband was the president. After Frank passed away, Lia became president. Since 2005, she has been working as a volunteer for the organization. Up until 2012 Lia accompanied her husband when he had appointments with politicians and members of the government or their staff and when he went to workshops and symposia in Belgium, the Netherlands and Germany, at both the national and European level. Lia organizes contacts between patients (collective and individual) and information sessions about brain tumours (glioblastoma, meningioma, metastatic brain tumours) and related subjects (ergotherapy). She also works closely with other brain tumour patient organizations in Belgium. In 2009 Lia set up a five-day course entitled “How to Handle Patients With a Brain Lesion’’ for carers of rehabilitation and occupation centers in four different regions of Flanders. In 2013 she was invited by the Belgian Senate, Commission Social Affairs: Study Group “Opportunities and Challenges of Innovative Therapies”, to explain the brain tumour patient’s viewpoint in this matter. This year the focus of Study Group Brain Tumours is on neuropsychological tests and rehabilitation which is very important to the quality of life of the brain tumour patient. Since 2011 Lia has been a board member of the “Vlaams Patientenplatform”, an umbrella organization of patient groups (more than 100) which deals with patient rights and the patients’ voice concerning insurance, work, access to medicine and drugs, etc.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Melissa Lim (Singapore)

Barrie Littlefield (Australia)

Founder and President - Brain Tumour Society (Singapore)

Head of Engagement, Cure Brain Cancer Foundation .............................................................

............................................................. Melissa Lim founded the Brain Tumour Society (Singapore) or BTSS in 2014 and currently serves as its President. She started out as the facilitator and programme manager of the Brain Tumour Support Group, which was an informal support group for patients and caregivers prior to it being recognised as an official Society in 2014. Melissa lost her mother to brain cancer in May 1998 and became a brain tumour patient herself when she was diagnosed with an acoustic neuroma in Oct 2003. Her 16-hour brain operation in February 2004 resulted in some physical deficits, most of which she has overcome. Grateful for the friendship and support she had received throughout her journey with brain tumour, Melissa aspires to bring hope and encouragement to those who are also struggling with brain tumours. ‘Connecting to Befriend, Enable and Empower’ is therefore the mission statement she has set for BTSS. With the official launch of BTSS, Melissa looks forward gathering a strong and caring group brain patients, caregivers and supporters that will provide meaningful befriending, education and funding support for the needs of the brain tumour community. In recognition of her work in BTSS, she was selected as a winner of the Singapore Health Inspirational Patient Award, 2015. Professionally, Melissa specialises in leadership, talent development, organisational development and service excellence. As a consultant, trainer, facilitator, coach and assessor, Melissa has worked with at least 50 international clients across 20 industries. She is the Managing Consultant of VIVA Consulting & Coaching and serves as an Associate Consultant with several established global consulting companies. Melissa is a speaker for her professional area as well as her voluntary work in brain tumour support and care. Prior to her consulting career, Melissa spearheaded the Service Academy of a local bank and had headed Learning and Development functions within a media company for five years. She also has 10 years of teaching experience, having taught at NUS, NTU and local Polytechnics. Melissa is a graduate of NUS Business School and holds a Master’s degree in Education with Distinction (University of Sheffield).

First and foremost Barrie is a Dad. His daughter Eloise died from a glioblastoma brain tumour in 2011 at the age of 10. Barrie joined Cure Brain Cancer Foundation in mid-2013 to accelerate development of new treatments for brain cancer and help drive a leap in survival. Barrie started his career in the UK pharmaceutical industry in sales and brand management roles, working across numerous therapeutic areas including heart disease, rheumatology and epilepsy. Following his move to Australia he worked with the (then) largest communication consultancy in the world (Burson-Marsteller) to grow and develop their healthcare practice in Australia and Asia, working in Sydney, Melbourne, Taipei and Singapore. During this time, he consulted to most of the major pharma companies across numerous therapeutic areas as well as the defence, IT and energy sectors. He also consulted to the Australian government on HIV/AIDS. More recently Barrie has become deeply interested in change communication and the power of stories. He has undertaken numerous consulting engagements advising and facilitating teams and organisations to effect successful change as well envision, express and action future direction and business strategy. Barrie is comfortable working with C-level executives and boards and has been asked to speak at numerous conferences and engagements including a Sydney TedX event in 2012 where he presented a talk on ’The future of dying’. He was most recently a guest speaker at the 2014 International Symposium on Paediatric Neuro-Oncology in Singapore.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Mary Lovely (United States)

Mary Ellen Maher (United States)

IBTA Senior Advisor ............................................................

IBTA Senior Advisor and Advanced Practice Nurse in Neurosurgical Oncology, Northwestern Brain Tumor Institute .............................................................

Mary Lovely PhD, RN, CNRNs, is an IBTA Senior Advisor and lives in San Francisco, United States. Dr. Lovely earned her PhD at the University of California San Francisco (UCSF) School of Nursing focusing on symptom management, quality of life, and brain tumor patient care. During her Post Doctoral Fellowship she studied the effects of fatigue on brain tumor patients. Mary developed a program of research around long-term effects experienced by patients and families with brain tumors. She has numerous presentations and publications as Assistant Adjunct Professor in the UCSF School of Nursing. Mary has held positions with the American Brain Tumor Associationand the National Brain Tumor Society. In these roles, she communicated with patients and families about clinical issues, nationally and internationally, and developed and implemented comprehensive outreach programs for patients and healthcare professionals. Dr. Lovely co-facilitates an active brain tumor support group in San Francisco, and reviews prospective articles for many journals. She is on the Advisory Board of the Milton Marks Brain Tumor Camp. She presently consults for patients and families dealing with neurological issues following all types of cancer. She is First Author for Clinical Nursing Practice Guidelines for Adult Brain Tumor Patients through the American Association of Neuroscience Nurses.

Mary Ellen Maher, RN, APN, CNRN is an advanced practice nurse in neurosurgical oncology at the Northwestern Brain Tumor Institute in Chicago, Illinois. Mary Ellen has been working with neurosurgical patients for over 30 years. She completed her Bachelor of Science degree at Olivet Nazarene University, then her Master of Science with a clinical specialty in medical surgical nursing at Loyola University in Chicago. Currently, Mary Ellen is coordinating the pre and post-operative care of all the patients for Dr. James Chandler. This follows the continuum of care from initial presentation to yearly follow-up or end of life. She has been facilitating the Northwestern Brain Tumor Support Group for over 23 years. The group, which consists of patients and their caregivers, meets monthly and covers a variety of topics to informal “Let’s Talk” sessions. Mary Ellen has lectured locally and nationally on varied brain tumor topics. She has participated in various research studies ranging from quality of life to vaccine trials. In addition, she has been past president of her local chapter of American Association of Neuroscience Nursing (AANN) and group facilitator for the special focus group of neuro oncology nurses for AANN. Mary Ellen has worked at the IBTA booth at ASCO and The Society for Neuro Oncology conferences. Mary Ellen resides in Chicago. Her 19-year-old son, Jose, is currently serving in the United States Army. She is honored to participate in the international brain tumour community.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Han Manders (The Netherlands)

Dr Sonja Marjanovic (United Kingdom)

Dutch Braintumour Contactgroup hersenletsel.nl

RAND Europe

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Han Manders was born on 10th August, 1960 and is the proud father of two boys ages 27 and 22 years old. In 2003, he separated from the mother of his children due in part to behaviour and personality changes. In 2013, he married his current wife who has a son 27 years of age. In late 1995, Han was diagnosed with a neurinoma (acusticus neurinoom) and at the beginning of 1996 had surgery and radiotherapy. Soon afterwards he attended a meeting of Cerebraal, a contact group for people with a brain tumor where he immediately felt at home being amongst others who understood the disease. Within a short period of time he became involved with the organisation and is currently chairman of the contact group of brain tumor hersenletsel.nl. Han works as an ambulance driver in his region and beginning in September, reduced his workload from 100 per cent to sixty per cent in preparation of early retirement.

Dr Sonja Marjanovic is a Research Leader at the not for profit policy research organization RAND Europe. Sonja has over ten years of research and project leadership experience, with particular strengths in understanding the interface between health research and innovation policy and service delivery. Sonjaâ&#x20AC;&#x2122;s research portfolio has a strong focus on examining how collaborative models of research and innovation contribute to improved healthcare services and what role different stakeholders and institutions have in determining innovation outcomes. Recent clients include the NIHR, NHS, Department of Health, Alzheimerâ&#x20AC;&#x2122;s Society, Roche, GlaxoSmithKline, Pfizer, Wellcome Trust and international foundations. Some examples of recent projects include evaluations of national health technology programmes and health innovation strategies, reviews of public private partnerships in the stratified medicine space, an analysis of quality of life indicators and their use in cancer care (ongoing), an examination of business models for web-enabled crowdsourcing platforms, evaluations of collaborative models of health research and innovation (e.g. CLAHRCs, BRCs, international capacity-building efforts), evaluations of leadership programmes in the health sector, and two recently completed studies on dementia research and innovation policy and workforce planning. Methodologically, Sonja specialises in realist evaluation, and is highly experienced in workshop facilitation, interviews, surveys, case-studies, scenarios and bibliometric analysis. Her academic background combines training in health innovation policy, management studies and molecular genetics. She received her PhD from Judge Business School, Cambridge University.

Deborah Maradini

(Italy)

Associazione Italiana Tumori Cerebrali ONLUS - AITC ............................................................. Deborah Maradini of Milan, Italy is a psycho-oncologist working with brain tumor patients, caregivers and healthcare provides since 2006. She works at the Neurological Institute Carlo Besta in Milan where she focuses on preventing healthcare burn out and work-related stress. She collaborates with AITC (Italian Brain Tumor Association), one of Italyâ&#x20AC;&#x2122;s most important patient organizations. Its mission is to support, help, collect and develop information and interest on this rare pathology.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Tina Mitchell Skinner (United Kingdom)

Yuko Moue (Japan)

Founder and Chief Executive, Brain Tumour Support.

President, Pediatric Brain Tumor Network of Japan (PBTN)

............................................................

.............................................................

Tina Mitchell Skinner is the Founder and CEO of Bristol-based charity Brain Tumour Support, an organization dedicated to providing specialist, tailored services for anyone affected by any type of brain tumour. Tina graduated in 1987 with a BA in Modern Languages with Information Systems from the University of the West of England. Following two years with international company IATA at their Executive Offices in Geneva, Tina then took up a variety of marketing posts before moving into management training and development within the UK financial services industry. Having taken a break to raise her son in 1997, Tina’s husband Paul, sadly died of a Grade IV Glioblastoma in 2003. Tina set up the charity, originally named Hammer Out, in his memory. Now in its twelfth year, Brain Tumour Support has been instrumental in many developments within the brain tumour community, and Tina adopts a very patient-focused and resultsoriented approach towards leading the organization’s future direction. The charity raises money through corporate and individual giving to fund their pioneering work in holistic support, not only for patients but also their families, loved ones and carers. Employing a small team of staff and volunteers, and most recently establishing a working partnership with Macmillan, it has grown to become one of the leading providers in patient support through its wide network of patient and carer groups, specialist counsellors and support workers. Alongside these services Brain Tumour Support also plays a key role in providing specialist information and raising public awareness of the devastating impact of brain tumours. Watching Paul battle his illness with such humility, incredible faith, and courage, Tina’s personal experience of caring for and losing such a wonderful person has given her the determination to ensure that Brain Tumour Support will continue to make a positive difference to the lives of all the families who face a similar journey.

Yuko Moue’s daughter was diagnosed with a medulloblastoma and treated with surgery, partial radiation and allogeneic stem cell transplantation in 1998 when she was just a year-and-ahalf old. She is now 16 years old and continues to be treated for complications and such late side effects as endocrine disorder, fertility issues and tooth bud hypoplasia. Yuko subsequently became involved with the Pediatric Brain Tumor Network of Japan which is a family support group created to improve quality of life. She was Vice-President of PBTN since 2005 and is now the PBTN President. Pediatric brain tumors are a rare disease and because patients and their families are often unable to come together face-to-face to exchange information and discuss their challenges; PBTN formed an internet website community for patients’ families almost nine years ago. Many website communities such as craniopharyngioma, germ cell tumor, brainstem, ependymoma and regional groups were born from the PBTN website. Yuko has also helped the network of 29 pediatric cancer patients’ families groups since 2008 by tapping into their mailing lists. Acting on their behalf, as a member of the National Council for Promoting Anti-Cancer Measures initiated by the Ministry of Health, Labor and Welfare of Japan in 2011, Yuko has worked towards improvements to the medical care system for pediatric cancer. As a result, the Japanese government has begun to emphasize the action for the pediatric cancer medical system, especially for intractable

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types of cancer including pediatric brain tumors since 2012.

Christine Mungoshi (Zimbabwe)

Gordon Oliver (United Kingdom)

Director, Zimbabwe Brain Tumour Association (ZBTA)

Co-Director of the International Brain Tumour Alliance (IBTA)

.............................................................

Christine Mungoshi is the Director of the Zimbabwe Brain Tumour Association (ZBTA). She helped found the ZBTA after her daughter Paidamoyo was diagnosed with a brain tumour. Christine is a brain tumour patient advocate operating in a resource strained part of the world. In 2005 there were only four practising neurosurgeons in Zimbabwe for a population of 14 million people and not a single neurosurgeon had graduated since Zimbabwe attained its independence in 1980. But since that time, two neurosurgeons have completed their training and four are currently in their final year bringing the total of those in training to 19. Zimbabwe is also involved in training of neurosurgeons from other countries like Namibia hence confirming Zimbabwe’s pivotal role in the development of neurosurgery in Southern Africa. Christine understands the challenges that confront her; where the balance between the costs of treatment can be a determinant to choice to life enhancing treatments for patients. Despite this challenge, she believes in the guiding principle ‘Every human life matters’. She is a strong advocate of the vision to create a working model for neuro-oncology in Africa, to continue tapping into the already existing advances made and find the balance between efficiency and cost-effectiveness. She has vast experience in finance having worked for 13 years in the energy sector and held middle management positions. She holds a BA (Hons) Social Work Degree from De Montfort University in the United Kingdom, a Diploma in Social Sciences from Sofia (Bulgaria) and a Diploma in Supervisory Management. Christine is currently studying towards a MSC Degree in Palliative Care with De Montfort University with special interests in palliative care needs of people with neurosurgical conditions, especially in Africa. She looks forward to attending the second IBTA World Summit after attending the highly successful first IBTA World Summit of Brain Tumour Patient Advocates in California in 2013.

Gordon is married to Kathy Oliver, Co-Director of the IBTA. Their son, Colin, was diagnosed with a brain tumour in 2004 and tragically passed away in August 2011, age 32. The Olivers have a daughter, Miranda, who is a primary school teacher and is married to Keith Baxter-Russell. Gordon was a partner in the Central London law firm of Hamlins LLP from 1982 until 1st May this year and remains a consultant to the firm. He provides legal advice to the International Brain Tumour Alliance. Born and brought up in Wales, UK, Gordon was educated in England and graduated from King’s London. Throughout his career he has specialised in commercial and company law, and latterly in anti-corruption systems and procedures for internationally-based groups of companies, and regulatory compliance issues. Family life is very important to him but he can occasionally be found working on an old car. Best thinking time.

Kathy Oliver (United Kingdom) Co-Founder, Co-Director and Chair of the International Brain Tumour Alliance (IBTA) ............................................................. Kathy Oliver is a founding Co-Director of the International Brain Tumour Alliance (IBTA – established in 2005) and is its current Chair. Kathy’s son, Colin, was diagnosed with a brain tumour in 2004 at age 24 and passed away, at age 32, in August 2011. She cites her son’s “incredible courage, determination and fortitude” as the driving force and inspiration behind her involvement in the international brain tumour and cancer community. 89

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

The IBTA project-manages the annual “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours” (see www.theibta.org). Kathy is involved in advocating for equitable access to new brain tumour therapies; encouraging the establishment of brain tumour patient and caregiver support groups in countries where they don’t yet exist; and raising awareness of the challenges this devastating disease presents. Kathy is a frequent plenary and session speaker at international neuro-oncology and cancer conferences. She serves on the European Commission’s Expert Group on Cancer Control, as one of two patient advocate representatives of EURORDIS (Rare Diseases Europe). She is on the campaign organisation committee for Rare Cancers Europe (RCE) and is Vice-Chair of the European CanCer Organisation Patient Advisory Committee (ECCO PAC). Kathy is also on the European Society for Medical Oncology Patient Advocacy Working Group (ESMO PAWG). She participated in the British Neuro-Oncology Society’s (BNOS) National Guidelines Group for Rare Brain and CNS Tumours and on the Rare Disease UK Working Group on Patient Care and Information. She is currently the patient advocate member on the BNOS Council. She is also a core group member for the James Lind Alliance (JLA) Neuro-Oncology Priority Setting Partnership (N-O PSP). Kathy helped to establish Cancer52, a UK umbrella organisation for 80 rare cancer charities. She serves on a number of pharmaceutical company advisory boards as a patient advocate. Kathy is an ex-freelance journalist and edits the IBTA’s major annual magazine, Brain Tumour, of which approximately 14,000 copies are printed each year and distributed for free to recipients in 111 countries and at major international medical conferences. She has also written and co-authored a range of articles for various oncology magazines and journals. Kathy works on a number of European organising committees developing high-level courses in cancer patient advocacy and skill sets. Kathy is also Co-Chair of the Project Advisory Board for the European Patients’ Academy on Therapeutic Innovation (EUPATI). This patient-led initiative has developed educational material, training courses and a public Internet library to educate patient representatives and the lay public about processes involved in medicines development.

Dr Sarah Parks (United Kingdom) RAND Europe ............................................................. Dr Sarah Parks is an Analyst at RAND Europe in the Innovation Health and Science team. She is interested in the intersection between scientific research and healthcare. Recent projects at RAND Europe include a study on international examples of accelerating the use of drugs, devices and diagnostics to support the Accelerated Access Review of Innovative Medicines and Medical Technologies, a European study on the future of anticoagulation to treat atrial fibrillation, and a study mapping the UK’s Dementia Research Landscape and Workforce Capacity. She has a PhD in Computational Biology from the University of Cambridge, and a BA in Mathematics.

Sally Payne (Australia) IBTA Senior Advisor ............................................................. Sally Payne is an Associate Dean of Studies at a university pathway college in Sydney, Australia. Sally’s younger sister was diagnosed with an anaplastic astrocytoma in 2005 which prompted Sally to start researching the disease and support available. Sally came across Denis Strangman and Kathy Oliver online in the early stages of the IBTA and was impressed with the international perspective and approach to patient advocacy. Sally helped set-up and maintain the unique brain tumour database that is used to send the IBTA’s monthly newsletters and yearly magazines to recipients in many countries around the world. She also assists the IBTA with advising and strategic direction. Sally’s sister died in 2011 and the journey over those six years has given her an insight into the issues faced by a number of developed but small population countries with the lack of clinical trials and experienced neuro-oncology nurses and facilities in Australia.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Susan Pitt (Australia) Brain Tumour Alliance Australia (BTAA) ............................................................. Brain Tumour Alliance Australia (BTAA) is the only national patient and caregiver organisation in Australia. BTAA is a not-for-profit organisation established in 2008 by a group of brain tumour patients and current and former caregivers including former IBTA Chair Denis Strangman. BTAA is concerned with all brain tumours (neoplasms) of the central nervous system (CNS) including meninges, brain and spine. BTAA is run by a volunteer committee funded largely by donations from supporters. Susan is delighted to be representing BTAA at the 2015 IBTA Summit. She has 14 years of experience in health consumer advocacy and support and is currently Secretary of BTAA, co-convenor of the ACT brain tumour support network, and webmaster for www.btaa.org.au. Susan is a mother of four children and grandmother of two. Her involvement in brain tumour advocacy kicked-off when her then 19-year-old son Matt was diagnosed with a low grade glioma in 2001. Susan was diagnosed with breast cancer in 2004. Matt, Founding Chair of BTAA in 2008, represented BTAA at the first IBTA Summit in 2013. Susan has a Master’s Degree in Public Policy and currently combines her volunteer role as Secretary of BTAA with part-time work in the Australian Public Service in Canberra.

The firm is called Abanlex. In October 2008 he was diagnosed with a brain tumor, and it was necessary to have a rapid surgical intervention due to the type and rapidly growing brain tumor. After surgery began sessions of chemotherapy and radiotherapy for nine months. At the end of the treatment, which was very successful, Oscar decided to leave the legal profession to found the first and unique Spanish national association of patients with brain tumors, ASATE and use his time and expertise to help newlydiagnosed patients. In Spain, 3,500 new cases of primary brain tumours are diagnosed annually and 14,000 cases of brain metastasis are diagnosed. Some of the activities and services offered by the association are: psychological care for patients and their families; rehabilitation specializing in brain injury; physical therapy; legal assistance; speech therapy; reports on hospitals and medical specialists in brain tumors; and treatment and equipment information most appropriate for the treatment of brain tumors. ASTATE is a founding member of the Spanish group of patients with cancer (GEPAC) and currently has 60 members and associations of cancer patients of different pathologies. GEPAC is the most important and influential organization of cancer patients in Spain. Oscar has been secretary of the board in founding GEPAC and is current vice-president after the last General Assembly.

Ella Pybus (United Kingdom) Meningioma UK .............................................................

Oscar Prieto Martinez (Spain) President, ASATE (Association of Patients with Brain Tumors in Spain) ............................................................. Oscar has developed his career over eight years in various law firms. In February 2008 he founded his own firm with two attorneys.

Ella Pybus co-ordinates and directs Meningioma UK. All members of the Board of Trustees are former patients who govern the charity for the benefit of other meningioma patients and their families. Meningioma UK was founded in 1998 by Ella and fellow meningioma patient Dr. Caroline Rutgers to help others with information and support in the UK. At the time, resources for brain tumour patients focused mainly on brain cancer with resulted in little support for meningioma patients. The mission of Meningioma UK is to provide clear information, patient resources and a national Meningioma Awareness Information Day. The organization supports improved care for patients and their families, brain tumour research and effective treatment for meningioma. 91

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Karen Risgaard (Denmark)

Julia Schwarzenberger (Germany)

Secretary, HjernetumorForeningen (Danish Brain Tumor Association)

Deutsche Hirntumorhilfe ............................................................

............................................................ Karen’s husband was diagnosed with a GBM in March 2010 and passed away in July 2011. He participated in an International RTC trial with Avastin together with temozolomide following surgery and radiotherapy. After new symptoms developed he was forced to stop treatment and unfortunately discovered that Avastin had not been effective. Karen and her husband gave together a presentation at the first “Brain Tumor Day” held in Copenhagen in April 2011. They spoke about the problems and challenges you can meet in a marriage, when one person gets seriously ill and is going to die. At that time he could still talk, but developed aphasia (inability to speak) a few weeks later. After the “Brain Tumor Day” Karen participated in creating a network for brain tumor patients in Denmark which was established in April 2011. In April 2012, the Network was changed into a Brain Tumor Association. Karen works as secretary for the “HjernetumorForeningen” as the association is called in Danish. She is also contact person for patients with a brain tumor and their relatives in the northern part of Denmark and supervisor for groups of patients, relatives and people left behind. The various groups meet once a month. She has given several presentations at meetings and conferences regarding the challenges faced by patients and their relatives following a brain tumor diagnosis especially when there are cognitive deficits. Karen graduated as a physiotherapist in 1978 and has been working with patients with neurological diseases most of her professional career, first as a physiotherapist at hospitals and then as lecturer in physiotherapy for many years. In 2008, she became Principal for a center for rehabilitation for brain damaged people which unfortunately was disbanded in 2011. She is now retired.

Julia Schwarzenberger is a manager for public relations and health politics at Deutsche Hirntumorhilfe (German Brain Tumour Association) which is a non-profit organization dedicated to providing information and support to brain tumour patients. Julia organizes symposia and workshops for brain tumour patients, joins medical congresses all over the world, is the contact person for neuro-oncological physicians and scientists and coordinates patient communication as well as political activities. Julia graduated from the University of Leipzig with a Master of Arts Degree in Cultural Studies and Comparative Literature. A central focus of her studies was non-profit marketing which lead her to different institutions concerned with media and cultural exchange before coming to the German Brain Tumour Association in 2010.

Francesca Scropetta (Italy) Il Fondo di Gio ............................................................ Francesca Kozmann Scropetta’s son Gio was diagnosed with a brain tumour at the age of six. Following her son’s diagnosis, the lawyer and experienced mediator was forced to learn step-by-step how to strike a balance between treatments and quality of life for her son. With the help of her husband Lucio and her sister Sara’s family, she established Il Fondo di Gio – Gio’s Fund which for the past 12 years has provided support to children, adolescents and young adults with brain tumours. One hundred per cent of all money donated to Gio’s Fund goes directly to research and finding a cure. Although modest, Gio’s Fund effectively manages its financial resources and remains steadfast in its

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

fight against childhood brain tumours. All administration costs are paid by Francesca, her husband and her sister. Francesca enjoys accompanying her husband and their two daughters on the golf course. She finds comfort there as it was a place where Gio himself spent a lot of time as a child. There are times when Francesca gets discouraged but the memory of her son gives her strength as does the generosity of the many donors who support the fund.

Paul Skinner (United Kingdom) Brain Tumour Support .............................................................

Joan Seoane (Spain) Director, Translational Research Program, Vall d’Hebron Institute of Oncology (VHIO)

Paul Skinner is married to Tina Mitchell Skinner, Founder and Chief Executive Officer of Brain Tumour Support. He therefore has a keen interest in the work of the charity, the treatment of brain tumours and the support of people whom they affect. Paul has an engineering background and currently works for the UK based engineering company Renishaw plc where he heads up the Neurological Products Division. He assists with the work of Brain Tumour Support on a voluntary basis.

............................................................. In 1998, Joan Seoane obtained his PhD in Biochemistry and Molecular Biology from the University of Barcelona. Previously, in 1993, he had obtained his BSc degree in Chemistry, branch of Biochemistry and Molecular Biology. Joan joined the Memorial SloanKettering Cancer Center (MSKCC) in New York as a post-doctoral fellow in 1998. From 1998 to 2001, he worked as a Research Fellow at this institution and subsequently, from 2001 to 2003, as a Research Associate. He was appointed ICREA Research Professor in 2004 and established his own Group back in Barcelona at the Vall d’Hebron Institute of Oncology (VHIO). In 2007, he became a member of the EMBO Young Investigator program and the recipient of a European Research Council grant. In 2008, he became a Board member of the European Association of Cancer Research (EACR). Since 2011, Joan is the Director of the Translational Research program at VHIO within the Vall d’Hebron University Hospital. He is also the recipient of several awards such as the MSKCC Research Fellow Award, the Banco Sabadell Award for Biomedical Research, the Dr. Josef Steiner Award and the Drs. Diz-Pintado award. Dr. Seoane’s main objective is to understand the molecular mechanisms involved in the initiation and progression of cancer. Specifically, his research is focused on the study of brain tumors. The understanding of the molecular mechanisms that govern brain tumors is required in order to design rational, specific and successful therapeutic approaches.

Justina Smalskiené (Lithuania) Member of Kartu Lengviau, the organization “Easier together” for brain tumour patients ............................................................. Justina has been a diplomat in the Lithuanian Ministry of Foreign Affairs since 2008. She studied international relations, political science, law and management. Justina is married to Ugnius. In 2007 Ugnius was diagnosed with an anaplastic oligoastrocytoma brain tumour. After the successful surgery and radiation therapy Justina and Ugnius started looking for more information on the disease, its treatment and the way of living with a tumour. As there was not much information provided, they were happy to find a newly created organization, Kartu Lengviau (“Easier together”) for Lithuanian brain tumour patients and their families. Justina and her husband joined the organization in 2008 and started organizing support groups, seminars and mini – conferences for patients and their families, trying to unify a brain tumour community in Lithuania, including medical staff, for better information dissemination about the disease. Justina is also interested in psychology, philosophy, languages, history, and photography. 93

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Maria Solomou (Cyprus) The Cyprus Brain Tumour Association ............................................................ Maria Solomou studied Human Relations- Communication and Effective Speaking at the University of Dale Carnegie in the U.S.A. and Medical Laboratory Science at Athens University of Technology in Greece. She has been employed by the Ministry of Health in Cyprus in the diagnostic laboratories in one of Nicosia’s main hospitals since 1986. In 2008, she promoted the creation of the Cyprus Brain Tumour Association modeled after the IBTA. Having personal experiences as a patient herself, as president of the Cyprus Brain Tumour Association she has struggled for the recognition of the special needs of brain tumour patients in Cyprus as well as increased public awareness in early symptom recognition.

combination of chemotherapy and radiotherapy, multi-disciplinary cancer management, namely in the areas of lung cancer and brain tumors. He is involved in bringing new antiangiogenic and biological treatments to the clinic. Roger Stupp is or has been the principal investigator for large multimodality clinical trials in brain tumors and non-small cell lung cancer. His work has been extensively published in such journals as The New England Journal of Medicine, Lancet Oncology, Clinical Cancer Research, Molecular Oncology, Neuro-Oncology, the European Journal of Cancer, and the Journal of Clinical Oncology, among others. Dr. Stupp is associate and section editor for the European Journal of Cancer and is a member of the editorial board of several oncology journals. He also serves in scientific or educational committees of the European Society of Medical Oncology (ESMO) and the American Society of Clinical Oncology (ASCO), and acts as a council for several European and National funding agencies. Roger Stupp has received several awards the most recent of which are the Victor Levin Award by the Society of Neuro-Oncology in the USA and the Hamilton Fairley Award by the European Society of Medical Oncology in 2013.

Bonita Suckling (South Africa) Rainbows and Smiles

Roger Stupp (Switzerland) Professor and Chairman, Department of Oncolgy and Cancer Centre, University of Zurich and University Hospital Zurich ............................................................ Prof. Roger Stupp gained his MD at the University of Zurich. After training in oncology and hematology at the University of Chicago, he spent 17 years as a physician and researcher at the University of Lausanne, Switzerland. Since 2013 he has been the Director of the Department of Oncology and Cancer Center at the University Hospital in Zurich. He also serves as the President of the European Organisation for Research and Treatment of Cancer (EORTC), the prime cooperative group conducting clinical trials and translational research throughout a pan-European network of over 200 active universities and academic medical centers. Dr. Stupp’s research focuses on early drug development, the

............................................................ Bonita Suckling founded Rainbows and Smiles when her only son, Jed, was diagnosed with a high grade anaplastic astrocytoma brain tumour. The organization assists children in the Durban, Gauteng and Pretoria areas of South Africa. Although Bonita has a special interest in brain tumours, the foundation extends its support to all children with cancer. In South Africa it is estimated that less than 50% of childhood cancer cases are diagnosed early enough, or at all, for effective treatment. Rainbows and Smiles Foundation is a charitable organization dedicated to providing emotional, social and financial support to families and caregivers in need following a child’s cancer diagnosis. Assistance comes in many forms including medical bill coverage, toys, gifts and awareness items as well as grants directly to children, their families or caregivers. The organisation raises money through various events, corporate donations and fundraising activities. The poverty rate in South Africa is heart-breaking with many rural families sometimes skipping treatment due to a lack of funds for

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

transportation to and from the hospital. The organisation does not discriminate based on race, culture, religion, financial status or any other factor. The foundation believes in providing hope and laughter as the family finds strength beyond the illness and strives to support children battling childhood cancer by advocating awareness initiatives through ongoing education of the early warning signs of childhood cancer. It also promotes the Gold Ribbon (a symbol for Childhood Cancer) in order to raise the profile of childhood cancer throughout South Africa and helps connect children and their families with hospital facilities, social welfare and medical professionals. Rainbows and Smiles is made up of nine passionate team members and a few volunteers who drive the fight against childhood cancer in South Africa. Four of the mothers who work with the foundation have lost their children to this dreadful disease and passionately strive to keep their child’s memory alive. Our Child Support Manager is our shining light of hope as her youngest daughter is a survivor of synovial sarcoma.

Amsterdam, and since 2015 he has been Professor of Neuro-Oncology at Leiden University, where he combines clinical duties with teachting and clinical research in Neuro-Oncology (patient-reported outcome measures, cognition, epilepsy, end of life care). From 2009-2011 he was president of the Netherlands Society of Neurology. He is actively involved in both the EORTC Brain Tumor Group and EORTC Quality of Life Group. In both Groups he has been a member of the executive committee. Apart form being a board member of EANO he was also a member of the European CanCer Organisation (ECCO) board from 2014 to 2016.

Merve Taskin (Turkey) Turkish Brain Tumour Patients’ and Caregivers’ Association

Martin Taphoorn (The Netherlands) Neurologist, Professor in Neuro-Oncology at Leiden University Medical Center and Medical Center Haaglanden, The Hague ............................................................. Martin Taphoorn, born June 11, 1959 in The Hague, The Netherlands, completed his medical study at the University of Leiden in 1984. He subsequently specialized in clinical neurology and neurophysiology at the Free University in Amsterdam, where he also wrote his PhD thesis “Treatment of primary and metastatic brain tumours; beneficial and adverse effects” under supervision of Professor Jan Heimans. From 1995 to 2003 he worked as senior staff neurologist in the University Medical Center Utrecht, where he performed both preclinical and clinical research in neuro-Oncology with an emphasis on neurotoxicity, cognitive functioning and quality of life. During a sabbatical leave of three months he visited MD Anderson Cancer Center Houston Texas (Dr. Levin) and Memorial SloanKettering Cancer Center New York (Dr. DeAngelis). Since 2003 he has been working in Medical Center Haaglanden The Hague in the Department of Neurology, where he was head of the residency program from 2011 to 2015 and is leading the multidisciplinary neuro-oncology team. Since 2007 he was appointed as Professor of Neuro-Oncology at the VU University Medical Center

............................................................. Merve joined the Brain Tumour Patients and Caregivers’ Association of Turkey in 2012 as a volunteer after having her family circle struck by the disease. She currently acts as the Coordinator and Patient Community Manager of the organization which consists of more than 1,000 members. Merve holds a dual degree in Business Administration and Economics from McDaniel University. Prior to this she briefly studied medicine and currently works as a consultant in the field of medical education. Merve speaks English, German and Hungarian besides her native Turkish. She and husband Nihat, who is also actively involved in patient advocacy, live in Switzerland and dedicate most of their time to helping and improving lives of brain tumour patients through advocacy, education, peer support and collaboration with patient organizations all around the world.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Joanie Taylor (United States) Co-facilitator, Brain Tumor Support Group ............................................................ Joanie Taylor (Joan M. Taylor) was born and raised in San Francisco, California, USA. The oldest of four children, she successfully completed grammar school, high school and nursing school in San Francisco. After nursing school, she worked in the San Francisco Hospital where she first worked in an orthopedic unit and then a surgical unit. It was there that she met her future husband who was then a medical resident doctor. They were married two years later and over the years became the proud parents of four terrific children. Widowed for many years, Joanie was lucky to have a wonderful profession to fall back on and to be hired at a nearby hospital in a position that she truly loved. She worked on a neurosurgical unit on the night shift for 31 years. Her passion has always been bed-side nursing, patient and family education and advocacy, and being a team-member in this confusing health care arena. She retired in 2010 after suffering a shoulder fracture which required surgery and a long rehabilitation. She helped start a grief support ministry many years ago and while she doesn’t currently participate, it continues to thrive. She also volunteers for the Saint Vincent de Paul Society to help the poor in her community. As a result of her friendship with Sharon Lamb with whom she has worked for more than 20 years, she became a co-facilitator for the Brain Tumor Support Group which meets once a month at a nearby university hospital but they are also available to group members by telephone. The group provides a safe place for education, support, sharing, and discussion for patients and caregivers during their journey with brain tumors which has been a very rewarding experience.

Darren Terris (Canada)

............................................................ Darren Terris of Riverview, New Brunswick, Canada may be relatively new to the brain tumour world but he has witnessed its devastation first-hand after losing his 18-year-old stepson Brandon to the disease in October, 2012. He has been a constant source of support for his wife Jennifer Gouchie-Terris both during her son’s illness and following his death. Darren has attended numerous brain tumour-related conferences, meetings, fundraisers and social activities over the past four years including the last IBTA Summit in California in 2013 in an attempt to increase his knowledge of the disease and get a better understanding of the advocacy efforts taking place on behalf of brain tumour patients and their families throughout the world. Darren has worked for more than 20 years as a machine operator at Irving Tissue and has two beautiful daughters ages 17 and 21. He loves to travel and when time and weather permit, enjoys spending time on his motorcycle.

Carrie Treadwell (United States) Chief Research Officer, National Brain Tumor Society ............................................................ Carrie Treadwell serves as the Chief Research Officer at the National Brain Tumor Society and President of the Cure GBM, LLC and Pediatric Cancer Cure, LLC. In these roles, she interacts with leading researchers and institutions to guide the development and success of key research initiatives including management of Defeat GBM Research Collaborative and Project Impact’s Defeat Pediatric HGG Research Collaborative. Carrie joined NBTS in 1998. Under her leadership, the grant portfolio grew from $2 million to over $40 million and the research program expanded into the global market.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Carrie currently serves on the Boards of Students Supporting Brain Tumor Research and Gray Matters Foundation, as well as co-chairs the Global Adaptive GBM Trial Patient Advocacy Committee. She also serves as the patient advocate for the National Cancer Institute’s Brain Tumor SPORE Program and sits on the Jimmy Fund Visiting Committee. Prior to working at NBTS, Carrie was the Director of External Research at the Massachusetts Society for Prevention of Cruelty to Children. She earned a BA from the College of the Holy Cross and MA from Tufts University.

Diego Villalon (Spain) MÁS QUE IDEAS Foundation .............................................................

Chris Tse (New Zealand) IBTA Senior Advisor ............................................................. Chris is an IBTA senior advisor based in New Zealand. Chris began working with the IBTA soon after his wife Lynda was diagnosed with a glioblastoma multiforme in 2006. Currently he assists in the areas of administration, finance and marketing, including managing the IBTA’s social media activities. He is also involved with maintaining the IBTA website and providing editorial assistance with the monthly e-News and Brain Tumour magazine. However Chris’s main area of interest is in brain tumour research. He has represented the IBTA at the Society for Neuro-Oncology (SNO) annual meetings in 2013 and 2014, producing comprehensive reports for both conferences. He is also responsible for maintaining the events and conferences page on the IBTA website. In his home country of New Zealand, Chris moderates two Facebook support groups for brain tumour patients and has contributed articles and presentations on brain tumour research for the Cancer Society of New Zealand. Chris completed a Bachelor of Chemical Engineering from the University of Auckland and then studied business and marketing at Massey University. He currently runs his own business consultancy specialising in doing business in Asia. Chris and Lynda live in Wellington, New Zealand. They have two children, Cassandra and Nathan.

Diego Villalón is a social worker living in Spain. He has been involved in patient organizations since 2004 when he was diagnosed with lymphoma. His experience is focused on cancer patients’ and relatives’ support and training, awareness campaigns and patient advocacy. He is the president of MÁS QUE IDEAS Foundation, an independent and non-profit organization: www.fundacionmasqueideas.org. MÁS QUE IDEAS aims to improve the quality of life of today’s and tomorrow’s patients, contributing to a change in healthcare and promoting coordinated, transparent and efficient actions from health stakeholders. To achieve its goals, MÁS QUE IDEAS Foundation develops different activities in the following working areas: • Space for healthcare stakeholders to debate, work and reflect • Training programs for patients, patient associations and health care professionals • Patient support and social awareness • Social research in health Diego writes a blog called “Resources for im-patients” in which he provides information and guidance to patients about social resources, patient rights and reflections about health and social issues as well as about patient organizations: www. recursosparaimpacientes.blogspot.com. For the last ten years, he has been co-author of different guides and magazines for patients, promoted educational activities for health care students and professionals, managed different teams of volunteers, and provided training programs for patient advocates. In addition, he has been involved in some international initiatives, such as EUPATI (European Patients Academy on Therapeutic Innovation), the International Psoriasis Youth Round Table and different patient advisory boards for pharmaceutical companies.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Markus Wartenberg (Germany)

Maggi Whyte (Northern Ireland)

IBTA Summit Facilitator and Executive Director of Das Lebenshaus e.V. (The House of Life Association)

.............................................................

Brainwaves NI

............................................................ Markus is a Honorary Senior Manager of the charitable patient advocacy organization Das Lebenshaus e.V. (The House of Life). The German non-profit organization supports patients with such rare solid tumors as GIST, sarcomas and kidney cancer. He is responsible for conceiving and organizing all community activities in GIST/ sarcomas with a small team of patients, employees and freelancers. After his commercial education in the industry, he completed his studies as a specialist in journalism & communication. He worked in several different German communication and PR-agencies as a consultant and creative director for national and international brands. In 1993 he founded his own agency which had a focus on pharmaceutical, medical and health communication. After 10 years with his business, he left the agency in 2003 to start a more meaningful life in founding and managing the charitable patient association Das Lebenshaus e.V. (House of Life) and the non-profitcompany Das Wissenshaus GmbH (House of Knowledge). Markus maintains extensive collaborations with leading sarcoma experts (centers), industry and other important stakeholders to improve the situation of sarcoma and GIST patients in Germany and other European countries. This includes early involvement in clinical trials, timely and correct diagnosis, access to qualified treatment, monitoring, guidelines, centers of excellence, generating more/better evidence/data and HTA-processes.

I am a retired Principal Lecturer in art and design. As previous chair and currently vice-chair of Brainwaves NI, I have been involved with the charity for over 20 years. My awareness of brain tumours and involvement with the charity came about as a result of my brother-in-law being diagnosed with a brain tumour in 1992. My sister, Kate Ferguson MBE and her husband Billy were instrumental in founding the charity. From my early involvement, I witnessed the devastating and heart-breaking impact on families who receive a brain tumour diagnosis, and this has provided my motivation to assist everyone affected and ensure emotional, financial, practical and community support is available to anyone who needs it. I represent Brainwaves NI on the Northern Ireland Neurological Charities Alliance which is a united voice for better services for over 45,000 people in Northern Ireland affected by a neurological condition. In the charity, I volunteer my skills and experience to oversee the management of finance, fundraising tracking and resources. A recent focus within the charity has been the development of our Regional Support Groups Programme which we began as a pilot in November 2014 and have continued to roll-out on an ongoing basis throughout the rest of the regions. Not surprisingly, they have been welcomed and well-received. My current focus is investigating and reviewing ideas which can assist in the introduction and establishment of new ways of supporting our local patients and their families which are reflective of their current needs and requirements. In a time of restricted healthcare budgets we are acutely aware of the need to consider the buy-in of specialist services to help with rehabilitation and adjustment. I have ‘volunteered’ my daughter’s services to create and manage our website www.brainwaves-ni.org and provide our digital presence and support through our Facebook site, Twitter account, Pinterest ‘Sharing Resource’ and Instagram gallery. She also drives our collaboration and participation in awareness campaigns and provides updates on what is happening in the global brain tumour community.

Report of the Second World Summit of Brain Tumour Patient Advocates - 2015

Elizabeth Wilson (United States)

Rosemary Wormington (United Kingdom)

President and Chief Executive Officer, American Brain Tumor

Brain Tumour Support

Association (ABTA) ............................................................. Elizabeth M. Wilson is an accomplished professional in non-profit management and administration for large, complex, mission-driven organizations where her efforts have increased the awareness and impact of the organizations, their missions, strategic priorities and initiatives, and revenues. She joined the American Brain Tumor Association as its Executive Director in 2008 and was named President and CEO in 2011. Founded in 1973, the American Brain Tumor Association was the first and is now the only national organization funding brain tumor research and providing information and education for patients, caregivers and health care professionals on all tumor types and for all age groups. Prior to joining the ABTA, Elizabeth was Executive Director of Public Affairs for the National Safety Council; National Director of Public Affairs for the Alzheimer’s Association; Director of Public and Media Relations for Loyola University Chicago; Vice President of Media Services for Edelman, Inc.; and Director of Public and Member Communications for the American Hospital Association. Wilson holds a Master’s Degree in Nonprofit Administration (MNA) and graduate certificates in Business and Nonprofit Management and Administration.

............................................................ Rosemary Wormington has worked for Brain Tumour Support for the past five years. Prior to that, she worked for 20 years in the NHS as a manager and then as a training and development advisor. As head of support for Brain Tumour Support, she is responsible for the effective running of the charity’s support service. The support service team is comprised of six Brain Tumour Support Workers, each of whom cover 2/3 counties in the south west and midlands area of England. There is also a Support Service Coordinator and an experienced counsellor based at the charity’s head office in Thornbury. The charity works very closely with Macmillan Cancer Support and other organisations striving to improve the lives of those affected by a brain tumour diagnosis. Rosemary was brought into the ‘brain tumour community’ 18 years ago when her daughter Frances was diagnosed with a non-malignant brain tumour when she was just three months old. Frances recovered well after treatment but was unfortunately diagnosed with a malignant tumour in 2005 when she was just eight years old and sadly died two years later. Frances continues to inspire her. The lack of emotional support available to patients and families motivated Rosemary to set up a support group in Worcester in 2007, with the help of family and friends. Then the opportunity came to join Brain Tumour Support and she is now doing the job of her dreams - helping to make a difference to people affected by a brain tumour diagnosis. Rosemary lives in Worcestershire with her husband and son Alistair. Outside of work she is heavily involved with an award winning community village shop and is a local junior church leader.

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IBTA Second World Summit of Brain Tumour Patient Advocates Conference Dinner

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INTERNATIONAL BRAIN TUMOUR ALLIANCE

www.theibta.org International Brain Tumour Alliance (IBTA) PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom email: chair@theibta.org