Issue 05 Get SWITCHED ON

GET 02 Introduction 04 Nice to share 06 SWITCHED ONcology Contributors 08 Let’s change the conversation about cancer 10 Beyond caring: learning from the unsung advocates in cancer care 12 Cancer in The Information Age: are we illuminated or inundated?

14 Oncology in the news 16 #LXAcademy 2018

switchedoncology.com

#LXAcademy

#EndCancer

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INTRO

Despite its many forms and varied outcomes, cancer has stubbornly embedded itself as a singular entity in the public’s consciousness: the amorphous and universally feared ‘Big C’.

New treatments are revolutionising cancer care.

Immune-based drugs are controlling advanced cancers in a way that’s never before been possible. Immuno-oncology (IO) is fast becoming a lifeline to thousands of cancer patients, and has reformed our expectations and hopes for what’s possible in treating cancer.

Fantastic successes with IO have given tantalising glimpses into how the power of the immune system can be unleashed to recognise and kill such rogue cancer cells.

Yet IO is still a story of two extremes.

At one end of the spectrum comes the unprecedented successes – the ‘supersurvivors’ – those who defy long-embedded prognostic expectations, whose tumours melt away to nothing thanks to the near-miraculous effects of IO. Though for every patient who has a supersurvivor response there’s a handful of those who don’t respond at all. And there’s still no reliable way to predict this.

For those on the frontline of treating cancer, IO brings a whole new level of excitement and opportunity, but also unprecedented complexity and uncertainty. And for patients, the practicalities of their cancer treatment have changed. IO is shifting the fundamental realities of cancer treatment. Scans look different.

Treatment schedules are unlike those of other treatments. And side effects can range from the benign to the devastating.

IO heralds a new age for the Big C. Not just a new age, but an entirely new vision. New treatment standards require new communication standards. In short, in the era of IO, the Big C is the Big Communication.

Our latest white paper explores how we can help to unleash the true potential of IO through such Big Communication thinking.

Clarity afforded through Big Communication could help to improve outcomes for many more patients. On the flip side, there’s a real danger of letting patients down if we don’t do more to support the unprecedented clinical advances with fit-for-purpose communication strategies.

This means working with others to define a new lexicon for cancer care; helping healthcare professionals stay on top of the deluge of new data and insights; and lifting the veil on the IO field for patients.

IO has broken the mould. It’s changed the conversation. It moves us yet further away from the tumour-centric view of cancer treatment to one that co-opts a patient’s own immune cells to create living drugs that respond to rogue cancer cells anywhere in the body.

We must correspondingly break the mould of communication in cancer. Big Communication is a necessity, not an option.

WE ARE ON THE CUSP O F A R E VO L U T I O N I N O N C O L O GY, I N P R E V E N T I O N . I N DI AG N O S I S . I N T R E AT M E N T. M O L E C U L A R O N C O L O GY, I M M U N O T H E R A PY A N D B E YO N D ARE TRANSFORMING KNOWLEDGE AND EXPERTISE. SCIENCE IS SHIFTING. PERCEPTIONS ARE CHANGING. BUT THIS ISN'T THE FINAL FRONTIER. TO MAKE A DIFFERENCE TO TH E MILLIONS O F P E O P L E W H O FAC E CA N C E R , E V E RY S I N G L E DAY, WE NEED TO REPOSITION THE QUESTION, C H A L L E N G E T H E AC C E P T E D C E R TA I N T I E S, AND PERSONALISE THE SOLUTION. WE BRING TOGETHER THE EXPERTS. T H E PAT I E N T S . T H E S C I E N T I S T S .

T H E T E C H N O L O G I S T S . T H E C R E AT I V E S .

WE UNITE POWERFUL INSIGHTS

download our new white paper at www.switchedoncology.com

TO MAKE SCIENCE MEAN SOMETHING REAL. WE ARE STRONGER TOGETHER. WE ARE SWITCHED ON.

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Since launch, the SWITCHED ONcology team have been incredibly busy. They have been meeting with patients, caregivers and HCPs to hear their thoughts and experiences as they face the changing landscape of cancer care head on.

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Our focus groups have not only uncovered valuable insights that will help shape our oncology communications, we have also established a highly respected network of partners with whom we can collaborate with to drive improvements across the cancer care continuum (see page 08).

At each focus group we have witnessed open and honest conversations about the challenges facing patients, carers and HCPs today.

Together, we discussed actionable solutions that would offer further support through the increasingly complex cancer care pathway.

We partnered with ‘Stupid Cancer’, the young adult cancer community organisation, to conduct a survey with 225 of their members. The survey revealed challenges that face patients and their carers. We have also attended a number of congresses to hear about the latest scientific developments that will transform the future of cancer care.

Here are some of the highlights from the campaign for you to share with your family, friends and clients.

WIRED Health 2018

SWITCHED ONcology FACulty

Earlier this year, Ashley Davies, medical writer, attended WIRED Health 2018 to find out about the latest developments happening in cancer care. bit.ly/wiredAD2018

We bring together the experts. The patients.

The scientists. The technologists.

The creatives. Uniting powerful insights.

Making the science mean something real.

Beyond caring: the unsung advocates behind cancer care

Healthcare professionals Focus Group

The report from the SWITCHED ONcology Carergiver Experience Focus group.

An insightful discussion that uncovered key challenges facing healthcare leaders as they strive to provide the best possible care for patients.

bit.ly/switchedarticle02

Meet our executive and academic faculty bit.ly/facultyswitchedon

Highlights film (03mins 22secs) bit.ly/focusgroup05 Full discussion film (01hr 20mins) bit.ly/focusgroup06

The Big Communication Matching unprecedented clinical advances in immuno-oncology with transformative communication.

Download our latest white paper bit.ly/switchedoncology

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SP RIN #18 — ITI ON ED

Let's change the conversation about cancer The report from the SWITCHED ONcology Patient Experience Focus group. bit.ly/switchedarticle01

Matt Eagles, our Head of Patient Engagement, reports on his WIRED Health 2018 experience.

N TIO ICA UN MM ical CO d clin with BIG gy ente THE eced oncolo n pr atio — g un munounic chin Mat ces in im e comm n adva or mativ sf com ogy. tran

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Changing the Paradigm – WIRED Health

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Caregiver Focus Group

Stupid Cancer SurveY We asked 225 individuals about their experience with cancer. bit.ly/stupidcancer225

bit.ly/wiredME2018

A humbling discussion with carers who are passionately campaigning to improve the cancer care continuum for all.

Highlights film (02mins 42secs) bit.ly/focusgroup03 Full discussion film (01hr 09mins) bit.ly/focusgroup04

Patient Experience Focus Group An open and honest discussion between patients, healthcare professionals and advocacy groups discussing the challenges facing cancer patients today.

Highlights film (02mins 41secs) bit.ly/focusgroup01

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Full discussion film (01hr 16mins) bit.ly/focusgroup02

Cancer in The Information Age: are we illuminated or inundated?

The report from the SWITCHED ONcology Healthcare Professionals Focus group. bit.ly/switchedarticle03

#LYNXLife SWITCHED ONcology 05

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contributors Through the focus groups we have created a powerful and reputable network of leaders who are transforming the way cancer care is delivered.

Through their support, we have gained a deeper understanding of the challenges facing today’s cancer care pathway. Moving forward, we will continue to collaborate with our new friends to drive improved support for all through communication and collaboration.

LORRAINE DALLAS Director of Information and Communication, Roy Castle Lung Cancer Foundation Lorraine leads the Information and Support team which offers services to those with lung cancer: including information, support via groups, helpline and new media; grants.

Lorraine’s team also works to raise awareness of prevention; risk reduction and early detection of lung cancer at policy and community levels, engaging those affected by lung cancer in service improvement. Lorraine has been involved in representing patient interest working with the UKLCC, Scottish Cancer Coalition and policy teams. www.roycastle.org

DI CANNON Director, Corporate Partnerships, Melanoma UK Di is a powerful business driver and motivator with a flair for engaging and influencing people at all levels of an organisation. In 2013 Di’s niece, Claire, passed away from stage 4 melanoma – she was a young mum who had everything to live for. Di has since become a major force at Melanoma UK and is the Liverpool arm of the organisation. She has used her business skills to maintain Melonoma UK’s position as the number one patient group in the UK. www.melanomauk.org.uk

STUART BARBER Policy, Advocacy and Government Affairs Manager, BMS Stuart is a highly experienced external communications, campaigns, policy and public affairs healthcare specialist with extensive oncology experience. He has knowledge of the political, healthcare and policy environment across the UK (excluding Northern Ireland).

Stuart has a demonstrable record of successful patient-focused campaigns in driving policy change in treatment issues, supporting patient access to medicines and addressing access issues. www.bms.com

MARJE ISABELLE Founder and CEO, Fertile Matters

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Marje expected that it would be easy to fall pregnant and put off starting a family. After a long period of trying, and failing, to conceive she decided to find out why. Through investigations, Marje found out that she had endometrial and ovarian cancer, rare at the age of 35. She was offered a life-saving hysterectomy which

would possibly force her into menopause.

However, prior to the operation she fought for fertility preservation and successfully harvested embryos. Two and a half years later, after exploring and experiencing many different routes, her and her husband finally have a daughter through gestational surrogacy.

Marje advocates the importance of knowing and keeping track of fertility levels, empowering women and couples to make the right choices, with enough time to make them. www.fertilematters.co.uk

PURAV ASHER Cancer Patient “I had suffered varying degrees of acid reflux and heartburn for many years. In 2009, after months of suffering and multiple prescribed medications from the GP, my wife persuaded me to have a gastroscopy. This led to the discovery of a 7cm tumour at the gastro-oesophageal junction. Treatment, with a view to surgery, commenced immediately and lasted 9 months.

Following a laparotomy, I was informed the disease was more widespread locally than the imaging had shown and was deemed inoperable.

Palliative care was the only option on offer and best case survival deemed to be 12 months.

10 weeks later following a second opinion and under the care of a new multidisciplinary team and surgeon, I underwent radical surgery.

Post-operative treatment lasted 9 months and 8 years on I am here to tell the story.”

EMMA HOWELLS Wife of Cancer Patient and Havas Lynx Creative Director, Phil Howells “Phil had been asked to attend an appointment with his consultant to discuss the results following two colonoscopies and the removal of a polyp from his bowel. Hearing the diagnosis of bowel cancer was difficult, but right from the start both Phil and I were able to keep a realistic, yet positive, view of the situation.

The support and advice from Phil’s Consultant, the colorectal team and our Macmillan Nurse was extremely good. On 22nd December, one week after diagnosis, Phil had a colon resection via keyhole surgery and both the surgery and recovery went well. Waiting for results was an extremely anxious time, but 3 weeks later we heard the fantastic news that he was all clear.”

PARKER MOSS Former CTO of Virgin Care Parker joined the healthcare sector in 2012 when his 4-year-old daughter Vanessa was diagnosed with an aggressive paediatric cancer.

After 5 years of treatment, Vanessa died just

before her 9th birthday while undergoing a cutting edge immuno-oncology phase 1 trial.

During Parker’s time living in Great Ormond Street he was hired off the wards to lead their digital strategy and transformation. Since then, Parker became the Chief Technology Officer (CTO) at Virgin Care, a UK independent community healthcare provider for the NHS. Parker is passionate about the potential for disruptive technology to drive integration and smooth pathways across acute and community care, and health and social care.

as well as organising study days on immunerelated adverse-event management (at RMH).

In 2017 Nikki launched the Immuno-oncology Nurses Forum, providing education and networking opportunities to all nurses (ANP, CNS, AOS and Research) across tumour groups.

Following a BSc in anthropology, and master’s degrees in medical anthropology, and the sociology of death and dying, she has a particular interest in cultural understandings of wellness and illness, and the problems of liminality and survivorship for immuno-oncology patients.

JESS MILLS

PARAS ASHER

Daughter of Baroness Tessa Jowell, Co-Founder of Adaptive Collaborative Treatments (ACT)

Carer for husband, Purav Asher

After her mother’s diagnosis with Glioblastoma in May 2017, Jess has since been project managing her mother’s care. The musician daughter of Tessa Jowell is now campaigning to remove the low ceiling created by the current standard of care for cancer in the UK. Jess is now encouraging global collaboration between doctors to ensure the most innovative treatments are available to everyone in the UK, irrespective of income or access.

“Aged 33, I was working as a Geography teacher and had been married 11 months when my husband was diagnosed with stage 4 gastrooesophageal cancer. A year of chemotherapy, radiotherapy, an attempted and unsuccessful resection, second opinions, a successful resection, post-operative chemotherapy ensued changing our lives forever. Eight years on, life has changed and is very chaotic due to our wonderful boys aged 2 and 4.”

DR ANDY GAYA BSC, MD, MRCP, MBBS, FRCR

Author, Blogger & Speaker

Consultant Clinical Oncologist

“I was 14 when my dad died of pancreatic cancer and 25 when my mum was diagnosed with a terminal brain tumour. I moved 250 miles to become my mum’s primary carer for 18 months until she passed away. At that time, I was also looking after my two younger sisters, one of whom was still at school. When my parents were diagnosed with cancer, I noticed a huge lack of support for the families of those with the disease, particularly for young people.

So I decided to do something about it. I started a blog to share my story and have since written a book. I know there’s nothing anyone can say or do that will magically make things easier, but I hope that by reflecting on my experiences and writing about the lessons I have learnt, that I can make things slightly more bearable for other people going through something similar.”

Dr Gaya originally qualified at St George’s Hospital Medical School (University of London) where he was awarded a distinction and several academic prizes. He then trained in clinical oncology at Imperial College and St Bartholomew’s Hospital and subsequently undertook a Cancer Research UK MD Fellowship at University College London.

Dr Gaya’s main interests are in the area of functional cancer imaging, immunotherapy treatment, integration of multimodality treatment, and the effects of exercise and diet on the immune system and cancer outcomes.

Dr Gaya has been published widely in peerreviewed journals and is an NHS consultant at Guy’s and St Thomas’ NHS Foundation Trust treating gastrointestinal cancers.

NIKKI HUNTER Clinical Nurse Specialist, Immunotherapy, The Royal Marsden NHS Foundation Trust Nikki Hunter is a Registered Nurse working as an immuno-oncology Clinical Nurse Specialist at the Royal Marsden. Her role covers educating and advising all patients receiving immunotherapy, and all clinical teams. She runs pre-treatment patient education and wellbeing seminars,

HOLLY DEMPSEY, RD, BSC, MSC Dietetic Professional Lead, Berkshire Macmillan Cancer Rehabilitation Service Holly is a highly specialist dietitian who initially trained to specialise in renal failure and ICU at Freeman Hospital in Newcastle but after a relocation, and having a number of family and friends suffer with the effects of cancer, she decided to refocus on oncology with a keen interest in the effects of cancer and its treatments in the survival stages. Berkshire Macmillian Cancer Rehabilitation Service (BMCRS) is an innovative multidisciplinary team aiming to help those living with and beyond cancer self-manage the physical and psychosocial effects of cancer and its treatments whilst promoting healthy behaviour changes for the future.

DR SHAMIL CHANDARIA, PHD

ROCHELLE BUGG

www.rochellebugg.com

health view, she has won fellowships to be part of international clinical teams; Memorial Sloane Kettering Cancer Centre, New York, Centre du Cancer Oscar Lambert, France, and a lowresource centre in Recife, Brazil.

DR STEPHANIE KUKU MD

Strategic Advisor, Google DeepMind Shamil is a senior professional with a multidisciplinary background and 30 years’ experience in mathematical modelling of diverse systems. Shamil was previously a visiting academic at the Future of Humanities Institute at Oxford. He is a research fellow at the Institute of Philosophy at the School of Advanced Study (University of London), and a Strategic Advisor at Google DeepMind.

DR JACK KREINDLER, BSC, MBBS Doctor, Med Tech Entrepreneur, Speaker on the future of healthcare Dr Kreindler began exploring the application of machine learning to medical imaging in the US in 2014. His work is now leading the way in the early detection of lung cancer. Through his London-based Centre for Health and Human Performance (CHHP) and his organisation in the US, he is encouraging start-ups to build tests that can give early markers of changes before they manifest themselves as cancer.

Senior Surgical Fellow, The Royal Marsden NHS Foundation Trust Dr Kuku is a Senior Surgical Fellow in Oncology at the Royal Marsden. During training in obstetrics and gynaecology, with a subspecialist interest in oncology, she obtained a Doctorate in Clinical Research from UCL. She served as council member and trainee representative for the British Gynaecological Cancer Society until Jan 2018. With a Global

#LYNXLife SWITCHED ONcology 07

Let's change the c o n v e r s at i o n a b o u t

cancer Author: Ashley Davies, Medical Writer and Executive Faculty Member, SWITCHED ONcology

SWITCHED ONcology Patient Experience Focus group held on 22nd February. Report published in the March issue of PME.

Any of us born after 1960 has a one in two chance of developing cancer. It’s easy to be daunted by cancer’s huge potential to cause harm, especially because of the way we talk and think about it.

Culturally, even the word ‘cancer’ can represent a long treatment process with awful side effects at best, or a death sentence at worst. But, just as a disease evolves over time, so does the way we prevent, diagnose and treat it. With new treatment approaches, survival and quality of life for cancer is improving. The patient experience is changing, so is the way we talk about cancer and our expectations of it.

This changing conversation was explored at a recent focus group organised by Havas Lynx.

The event invited doctors, patients and industry advocates to put forward their thoughts on cancer. They discussed the problems with the past and present issues cancer patients face, as well as how that conversation can and should change in future.

“If cancer was just ‘cancer’, I wouldn’t be here.”

Purav Asher, Stomach Cancer Patient

cancer identity is changing

Cancer has typically been defined and diagnosed by the place it originates in the body e.g. lung cancer. Patients can experience different emotional reactions to diagnosis and treatment depending on where their cancer is based in their body – your type of cancer forms part of your medical identity.

The focus group discussed whether patients could be treated and supported in a more standardised pathway irrespective of cancer location, to better improve access to holistic care.

As Lorraine Dallas, Director of Information and Support at Roy Castle Lung Cancer Foundation, pointed out “there is no right way to cope”.

The group also discussed the role that genetic profiling could have in screening for and preventing cancer in high risk individuals.

We are currently in the era of precision medicine with genetic typing of cancers and key biomarkers determining which next generation treatment will be most effective. In the future we may move towards truly personalised cancer based on even more accurate holistic diagnostics for patients – my cancer is my own. However, are the health systems ready and set up for this?

Dr Ben Harman-Jones, a Medical Advisor at Havas Lynx, asserted that this is a “more nuanced and sophisticated approach” compared to the historical attitude.

Our cancer communication needs updating Dr Vernon Bainton, Chief Medical Officer at Havas Lynx, explained that our current approach to talking about cancer is no longer fit for purpose.

The group discussed the current reality of cancer conversations; that healthcare professionals (HCPs) often talk in a language that patients can’t always understand.

The group recognised that this is only going to get more complex as we see more treatments become available, encouraging the need for new conversations. The treatment journey will be very different to what patients may expect, and someone will need to address this.

Instead, HCP-patient conversations could become more personalised, in keeping with the way cancer identity is changing.

Developments in cancer treatment are also revolutionising the way we act and think about cancer. The group discussed the impact of recent developments in cancer therapies, such as immuno-oncology (IO). IO represents a sea-change in the way the medical and patient community talk about cancer – instead of ‘fighting a battle’ against the cancer cells, patients’ own immune systems are harnessed and encouraged to circumvent the cancer from within.

the future for cancer is promising Havas Lynx is looking to help both patients and HCPs change the way they talk about cancer.

A new approach to communication, reflective of the cultural and medical changes in oncology, means that we could have a real chance of democratising hope for future cancer patients.

To see the full discussion visit www.switchedoncology.com/reports

ATTENDEES Matt Eagles Head of Patient Engagement, Havas Lynx Group (Chair) Dr Vernon Bainton, MBChB, BMedSci Chief Medical Officer, Havas Lynx Group Stuart Barber Policy, Advocacy and Government Affairs Manager, BMS Lorraine Dallas Director of Information and Support, Roy Castle Lung Cancer Foundation Di Cannon Director, Corporate Partnerships, Melanoma UK Phil Howells Creative Director and Colon Cancer Patient Dr Ben Harman-Jones, MBChB Medical Advisor, Havas Lynx Group Katie Atkinson Account Director and Cancer Patient

“There’s a massive communication gap growing – the whole language needs to be updated.”

Purav Asher Stomach Cancer Patient

Dr Vernon Bainton, Chief Medical Officer, Havas Lynx Group

Marje Isabelle Founder and CEO, Fertile Matters

As Stuart Barber, Policy, Advocacy and Government Affairs Manager at BMS, explained, “we are dealing with far longer survival than ever before, which brings challenges with long-term management and side effects”. Treatments like IO mean that cancer may become more like a chronic disease – something that patients live with and manage.

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#LYNXLife SWITCHED ONcology 09

Beyon d caring: learning from t h e u n s u n g a d v o c at e s i n

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Author: Steffi Evans, Medical Writer and Executive Faculty Member, SWITCHED ONcology

SWITCHED ONcology Caregiver Experience Focus group held on 8th March. Report published in the April issue of PME.

Macmillan Cancer Support estimates that there are currently around 1.5 million carers currently caring for someone who has cancer in the UK. Broadly, carers in and outside of cancer contribute around £132 billion in unpaid care every year – only just shy of the £134 billion that is spent in UK public health spending.

However despite this, carers are an often underappreciated stakeholder in what pharma calls the “treatment journey”.

In an effort to better understand the role of cancer carers in the UK and what can be done to offer them greater support, Havas Lynx’s SWITCHED ONcology initiative invited carers to a focus group to discuss the current challenges that they face, and potential solutions.

“How do we create the advocates to be there for the people that can’t do that for themselves?

I genuinely think that it’s a life-saving role.”

Jess Mills, Co-Founder, ACT

Carer? Or advocate?

For many people, caring is something that arises organically – it’s what we do when a loved one needs us. So perhaps unsurprisingly being labelled as a ‘carer’ doesn’t strike a chord among people who care. Many individuals at our focus group described themselves first and foremost as fathers, wives, daughters and sisters, and viewed their role in giving care as being an advocate for their loved one.

What became clear during our discussions was that this advocacy is a skill that requires not only compassion, but tenacity and an ability to understand the complexity of a patient’s medical care. Advocates are passionate about helping their loved ones and doing everything they can to improve their outcomes – and studies have shown that they do just that, for example by improving medication adherence, side effect reporting and dietary health.

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Tragically however, not all patients have an advocate of their own.

Inequalities in care threaten to extinguish hope Inequalities are sadly common in cancer care. They can range from a loss of income if patients and their advocates give up work, to how language, education and financial barriers may prevent them from accessing important information and resources about treatment options.

Often, advocates lack the support to easily overcome these inequalities. Many describe how clinicians don’t automatically include them in important conversations about diagnosis or clinical trials, how they constantly have to challenge clinicians to offer more solutions or answers, and how these life-altering conversations can sometimes be delivered without enough compassion. Advocates are faced with all these challenges while also carrying out caring duties day and night as they dedicate themselves to looking after their loved ones.

Advocates obviously play a critical and diverse role in a patient’s cancer care, but with so many challenges to overcome, at such a difficult time, it’s easy to see how the situation can come to feel hopeless.

Furthermore, many of us recognise that there is a degree of inevitable suffering that comes with the pain of a cancer diagnosis and the associated toxicities of treatment. However we often overlook the unnecessary suffering that simultaneously takes place among advocates and families, both during their loved one’s illness, and beyond if they are bereaved. Clearly, an advocate’s challenges and needs are closely entwined with, but distinct to those of a patient, and they urgently need to be addressed.

ATTENDEES

What can we do for advocates?

Increasing patient access to advocates has the potential to fundamentally change the cancer experience for patients and their families.

But how can we achieve this? Several potential activities were identified.

The development of an outreach service that could travel to clinics across a country at regular intervals was discussed. This would offer crucial face-to-face advice and support to patients who don’t have an advocate of their own, building a trusting relationship through compassion.

Through a service such as this, the inequalities among patients and their carers could hopefully be reduced.

“I feel signposting and communications can play a really big role in the transition of carers to advocates.”

David Hunt, CEO, Havas Lynx Group

Increasing access to psychological therapies for advocates and families was also highlighted, to offer these individuals direct support. Finally, the fact that existing advocates are experts by their own experience should not be ignored.

Advocates should be heavily involved in the development of any service or communication – be it within the charity sector, healthcare trusts or pharma – to ensure their needs are answered.

Matt Eagles Head of Patient Engagement, Havas Lynx (Chair) To see the full discussion visit www.switchedoncology.com/reports Learn more about global caregivers www.invisible-army.com

Paras Asher Caregiver Rochelle Bugg Author, Writer, Speaker and Caregiver Elizabeth Egan Managing Director, Havas Lynx Group Emma Howells Caregiver David Hunt CEO, Havas Lynx Group Nikki Hunter Clinical Nurse Specialist, Immunotherapy, The Royal NHS Marsden Foundation Nicola Lentin Account Director and Caregiver Jess Mills Co-Founder, Adaptive Collaborative Treatments (ACT) and Caregiver Parker Moss Former CTO of Virgin Care and Caregiver

For many years pharma and clinicians have, rightly, focused on putting the patient at the heart of their activities. However it’s obvious that the patient experience doesn’t stop here. Advocates are a critical extension of the patient and their care, and have the power to influence outcomes.

Given their tenacity, strength, and knowledge honed through their determination, isn’t it time that we did more for advocates in cancer?

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C a n c e r i n T h e I n f o r m at i o n A g e : a r e w e i l l u m i n at e d O R

i n u n dat e d ?

Author: Ben Pounds, Medical Writer and Executive Faculty Member, SWITCHED ONcology

SWITCHED ONcology Healthcare Professionals Focus group held on 16th April. Report published in the May issue of PME.

The term ‘cancer’ is deceptively simple.

The American Association for Cancer Research defines it not as a singular concept, but a collection of more than 200 diseases.

Effective treatments for these diseases are currently being explored in more than 20,000 open and active studies registered on ClinicalTrials.gov, 2,000 of which are immunooncology-specific trials. These are all trials of new and existing treatments, either as monotherapies or combinations, across a variety of modalities, formulations and pharmacologies.

Fed by this information and data, the oncology sphere is swelling in complexity. We are now on the crest of a new wave in cancer care. One that is rapidly gaining momentum, and that carries with it inevitable change. But with change comes both challenges and opportunities.

Havas Lynx’s SWITCHED ONcology initiative invited healthcare leaders to share their perspectives on the challenges facing oncology, and discuss what this means for communication in the clinic and beyond.

A data epidemic

Cancer has spread far from the traditional oncologist’s microscope. Today it’s as much, if not more, about genomics, immune profiling and systems biology as it is about histopathology.

Experts from all corners of medicine are exploring cancer, producing data to drive understanding and advance. Their evidencegeneration is complemented by the rise of wearable tech – now patients and the public are contributing an entirely new insight stream.

But such a scenario has created a paradox: in our pursuit of understanding, we are unwittingly breeding complexity. The key now is to bring this complexity into focus, so that we can answer the questions that healthcare professionals (HCPs), patients and caregivers are asking.

“The internet is a leveller, it gives everyone equal access, but for some it’s information overload, and how do we filter that?”

Dr Andy Gaya, Consultant Clinical Oncologist

Personalised vs. personal medicine Data and information have already proved fruitful in the clinic, yielding the advent of personalised cancer medicine, an approach whereby a patient’s tumour is profiled, and the data then used to select treatment most suited to the aberrations detected. Such an approach can maximise response rate and minimise debilitating side effects. But for all the promise of personalised medicine, it can limit perspective, drawing clinical attention towards the nuances of tumour genetics and away from the bigger picture. It can make it easier to forget we’re treating people, not just tumours. As oncology moves away from an anatomical approach to tumour classification towards a more genomic model, cancers become more individualised.

Patients lose the solidarity of whole communities sharing stories about ‘my tumour’. They lose ‘The Wisdom of Crowds’.

“To a patient being grouped is important.

We as clinicians might want to make it individualised care, but for a patient that support network is really important.”

Holly Dempsey, Cancer Rehabilitation Dietitian

This raises a provocative question: is cancer becoming too complicated, too interconnected, for human understanding alone? Perhaps a controversial question, but an important one, because one unanimous theme of the discussion was that the HCPs need support. The answer may lie in the processing power of computation.

Specifically, the application of computational biology and machine learning to digest, structure and filter data into more accessible outputs. Supported by the right technology, doctors could digest data more efficiently, and communicate it more effectively with patients. They, and their caregivers, could benefit from the same technology to become more activated and more informed in conversations with HCPs. Enabling more constructive and shared dialogue in this way could have a substantial and positive impact on outcomes.

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ATTENDEES

Personalised vs. personal medicine It’s not that patients and healthcare professionals aren’t communicating effectively, it’s that they can’t in today’s inefficient model of healthcare.

Oncologists are inundated with more patients than ever, and are spending less time with each.

At times, some HCPs feel less like conveyors of care, and more like conveyor-belt operatives.

This is at a time when oncology is rife with innovation and transition, when communication is at its most critical. Change has never been more pressing.

It needs you to discuss cancer care with your friends, your loved ones, your neighbour on tomorrow’s commute, and they must do the same. From the ground up, we can communicate with policymakers and decision makers to ensure data, outcomes and interactions are all as meaningful as they can be. Only then can we deliver care as transformational as the future of oncology.

To see the full discussion visit www.switchedoncology.com/reports

Dr Jack Kreindler, BSc, MBBS Doctor and Med Tech Entrepreneur, Speaker and Academic Faculty Chair for SWITCHED ONcology (Chair) Dr Andy Gaya, BSc, MD, MRCP, MBBS, FRCR Consultant Clinical Oncologist Dr Shamil Chandaria, PhD Strategic Advisor, Google DeepMind Dr Stephanie Kuku MD Senior Surgical Fellow, The Royal Marsden NHS Foundation Trust Holly Dempsey RD Dietetic Professional Lead, Berkshire Macmillan Cancer Rehabilitation Service Dr Vernon Bainton, MBChB, BMedSci Chief Medical Officer, Havas Lynx Group Dr Ben Harman-Jones, MBChB Medical Advisor, Havas Lynx Group

Put simply, personalised cancer care alone is not enough; it must be personal. We should aim higher than giving patients what they need, and prioritise what they want. But to do this, communication is crucial. A shining example is MoovCare, a web-based application through which patients report their own symptoms of lung cancer to enable earlier detection of relapse, and provision of appropriate care sooner. The result? A 7-month survival benefit vs. standard follow-up care. That’s the power of communication, and innovation, in clinical practice.

#LYNXLife SWITCHED ONcology 13

o n co logy Draw Me Close

in

the

news 'This is not the end'

From the latest oncology news to some of TED’s most interesting podcasts, here’s a small collection of inspiring and insightful content that details some of the issues surrounding cancer care today.

You, Me and the Big C The coolest club you never want to be a part of. The women of the You, Me and the Big C podcast are your BFFs, your sisters, daughters and mothers. They are you, but with dodgier cells and they’re too busy living to worry about dying. A candid look at cancer, with Rachael Bland, Deborah James and Lauren Mahon.

Stefanie Joho was 22 when she was diagnosed with colon cancer. Read more about how Stefanie enrolled on to an immunotherapy treatment aimed at a genetic glitch rather than aiming at the disease itself, like chemotherpay does.

In May 2017, Tessa Jowell, former Labour culture secretary, was diagnosed with glioblastoma. Tessa received a standing ovation in the House of Lords for a moving speech about her brain cancer in which she urged peers to support an international initiative to share resources, research and new treatments. Watch a short clip and read more about Tessa’s speech. bit.ly/tessajowell

Could we have done more to save my dad from cancer?

Luke Allnut’s dad died three months after his diagnosis. But one question haunts him: should they have asked for a second opinion? In this article, Luke shares the difference between his dad’s and his own attitude to their cancer diagnosis. bit.ly/theguardian01

'Yes, I survived cancer.

But that doesn't define me.'

Debra Jarvis had worked as a hospital chaplain for nearly 30 years when she was diagnosed with cancer. And she learned quite a bit as a patient. In a witty, daring talk, she explains how the identity of ‘cancer survivor’ can feel static. She asks us all to claim our hardest experiences, while giving ourselves room to grow and evolve. bit.ly/debrajarvis 14

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bit.ly/washingtonpost01

bit.ly/youmebigc

Tessa Jowell calls for global cooperation to help cancer patients

A Memoir blurs the worlds of live performance, virtual reality and animation to create a vivid memoir about the relationship between a mother and her son in the wake of her terminal-cancer diagnosis. Weaving theatrical storytelling with cutting-edge technology, the project takes a deceptively simple and humanistic approach to the immersive medium: it allows the audience member to experience life as Jordan inside a live, animated world.

A pacifist's guide to cancer

Why haven't we cured cancer yet?

Professor Eleanor Stride introduces a way to address the challenge of effective treatments for major diseases such as cancer or stroke. Today, the vast majority of medicines we take are prescribed in the form of a pill or injection. This means that the drug is transported through the body via the blood stream. For many conditions, this is very effective. But for diseases that require very powerful drugs, it poses a significant problem. Only a very tiny proportion of the drug is actually delivered to the target site. The rest circulates and is eventually absorbed by healthy tissue, often leading to serious side effects.

A Pacifist’s Guide to the War on Cancer is a new musical collaboration. Participants and specialists talk about one of the most feared illnesses of our time, alongside background footage and a production that looks at life with a cancer diagnosis, confronting its fears and misconceptions. bit.ly/guide2cancer

Ex-MP Tessa Jowell first to donate data to medical database Baroness Tessa Jowell has become the first person to donate her medical information to a new global database. The ex-culture secretary, who has an aggressive brain tumour, said she hoped that the Universal Cancer Databank would help develop better treatments. She feels a “sense of responsibility” to pave the way for others, her daughter Jess Mills said. bit.ly/tessajowell01

bit.ly/eleanorstride

THE DREAM APP The DreamLab app, developed by the Vodafone Foundation finds new cancer treatments by harnessing the power of your smartphone while you sleep at night. Ultimately the app looks to find connections between the datasets that could identify more effective combinations of existing drugs to treat cancer. Your smartphone can run up to 60 calculations and solve around 24,000 problems in just a single night. bit.ly/cancerdreamapp

What happened when I open-sourced my brain cancer When artist Salvatore Iaconesi was diagnosed with brain cancer, he refused to be a passive patient – which, he points out, means “one who waits.” So he hacked his brain scans, posted them online, and invited a global community to pitch in on a “cure.” This sometimes meant medical advice, and it sometimes meant art, music and emotional support from more than half a million people. bit.ly/tedtalk01

#LYNXLife SWITCHED ONcology 15

May

June

TUESDAY

15

THURSDAY

10 17

A PLANNER IS NOT A SPANNER Lou Shipley & Isabel Rojas 54 A DAY IN THE LIFE OF A STUNT MAN Sean Adames Pop-up theatre

22

INSIDE THE MILLENNIAL MIND Hussain Manawer Pop-up theatre

29

YOU CAN’T SAY THAT! Claire Passmore & Casey Lloyd 54

TIME TO EXCEL (BEGINNER/INTERMEDIATE) Neil Martin 54

24 31

INSPIRING GREATER PROACTIVITY Simon Rhind-Tutt Pop-up theatre

TUESDAY

05

#LXACADEMY LAUNCH EVENT Victoria Warehouse, Stretford, Manchester 2.30pm till late

THE ART OF THE SELL (ADVANCED) Tom Richards & Phil Howells Pop-up theatre RIDING THE TSUNAMI OF NEW CANCER SCIENCE Dr Ben Harman-Jones & Ben Pounds 54

BRAND THAT! Neil Hepworth Pop-up theatre WRITE A BETTER CONTENT STRATEGY Martin Galton & Rob Fuller 54

SHOOT, SHOT, SH*T! (INTERMEDIATE) Helen Godley & Neil Hepworth 54

July TUESDAY

03 10 17 24 31

2PM – 5.30PM

H4B POP-UP PRESENTATION TRAINING Dave Birss Pop-up theatre

HOLLOWAY POP-UP PRESENTATION TRAINING Mark Sudwell Pop-up theatre

PRYCE POP-UP PRESENTATION TRAINING Jane Kidd Pop-up theatre

WEDNESDAY

11

18 25 01

AUGUST

08 AUGUST

1PM – 2.30PM DRAPER REVIEW & PERSONALISED FEEDBACK

HAVAS LIFE REVIEW & PERSONALISED FEEDBACK

H4B REVIEW & PERSONALISED FEEDBACK

HOLLOWAY REVIEW & PERSONALISED FEEDBACK

PRYCE REVIEW & PERSONALISED FEEDBACK

THURSDAY

05 12 19 26 02 AUGUST

2PM – 5.30PM STERLING POP-UP PRESENTATION TRAINING Dave Birss Pop-up theatre

LONDON POP-UP PRESENTATION TRAINING Jane Kidd Pop-up theatre

COOPER POP-UP PRESENTATION TRAINING Dave Birss Pop-up theatre

SHARED S’VICES & STUDIO 6 LIFE POP-UP PRESENTATION TRAINING Mark Sudwell Pop-up theatre

FINAL CALL POP-UP PRESENTATION TRAINING Jane Kidd Pop-up theatre

FRIDAY

TUESDAY

11 18 25

12 19

LANGUAGE AND IMAGERY OF CANCER Dr Ben Stutchbury & Adam Emmott Pop-up theatre

THE BIG COMMUNICATION Dave Hunt 54

FROM BRIEF TO BILLING, COMMUNICATION IS KEY Simon Kemp & Tarryn Farnworth 54

THE CREATIVE MÉNAGE À TROIS Richard Hague, Neha Banati & Rachael McLoughlin Pop-up theatre LANGUAGE AND IMAGERY OF CANCER Dr Ben Stutchbury & Adam Emmott 54

14 21 28

GREATIVITY (INTERMEDIATE) Paul Bennett & Sam Sargent Pop-up theatre DIGITAL STRATEGY Rachael McLoughlin 54

DIGITAL DETOX Leona Deakin, Feel Good Co. Pop-up theatre WHAT EVEN IS CANCER? Dr Ashley Davies 54

FINDING MY FEET Claire Lomas 54 SHOOT, SHOT, SH*T! JUST GOT REAL (ADVANCED) Helen Godley & Neil Hepworth Pop-up theatre

CANCER CARE SUPPORT IN THE DIGITAL AGE Chris Russell & Jonny Frodsham 54 THE PAST, PRESENT AND FUTURE OF CANCER David Whittingham & Dr Vernon Bainton Pop-up theatre

13

20 27 03 AUGUST

10

AUGUST

1PM – 2.30PM STERLING REVIEW & PERSONALISED FEEDBACK

LONDON REVIEW & PERSONALISED FEEDBACK

COOPER REVIEW & PERSONALISED FEEDBACK

SHARED S’VICES & STUDIO 6 LIFE REVIEW & PERSONALISED FEEDBACK

FINAL CALL REVIEW & PERSONALISED FEEDBACK

September 04

WHEN I.T. GOES WRONG Dave Gorner 54

07

August

DRAPER POP-UP PRESENTATION TRAINING Dave Birss Pop-up theatre

HAVAS LIFE POP-UP PRESENTATION TRAINING Mark Sudwell Pop-up theatre

WE DON’T DO BLAND (INTERMEDIATE) Michael Stott & Jen Woodward Pop-up theatre

THE FRAGILITIES AND HAZARDS OF DR GOOGLE Kristian Webb Pop-up theatre

26

MENTAL HEALTH AWARENESS Leona Deakin, Feel Good Co. Pop-up theatre

THURSDAY

October THURSDAY

USPs THAT BENEFIT THE USER Michael Cox Pop-up theatre IT’S NOT ALL ABOUT THE DOCTORS! Dr Steffi Evans & Dr Amy Delderfield 54

HOW TO CHANGE A DOCTOR’S MIND Dr Tapas Mukherjee & Alice Narey Pop-up theatre CREATIVE BRIEF & PROPOSITION WRITING Isabel Rojas & Rob Fuller 54

CANCER & COMPLEXITY: IS COMMUNICATION THE CURE? Dr Jack Kreindler Pop-up theatre BUILDING EFFECTIVE CLIENT RELATIONSHIPS Mark Sudwell 54

TIME TO EXCEL (ADVANCED) Neil Martin 54 DRIVING COMMERCIAL SUCCESS James Young & Esther Hill Pop-up theatre

06 13 20 27

TUESDAY

LIFE, A JOURNEY OF DISCOVERY Jo Milne Pop-up theatre MENTAL HEALTH AWARENESS Leona Deakin, Feel Good Co. 54

STRESS IS GOOD – RESILIENCE Leona Deakin, Feel Good Co. 54 THE PAST, PRESENT AND FUTURE OF CANCER David Whittingham & Dr Vernon Bainton Pop-up theatre

THE ART OF THE SELL (ADVANCED) Tom Richards & Phil Howells Pop-up theatre 2018 – THE YEAR OF DIGITAL Adam Emmott 54

DIGITAL DETOX Leona Deakin, Feel Good Co. Pop-up theatre BEHAVIOURAL SCIENCE & JEDI MIND TRICKS Harrry Sharman & Rob Fuller 54

02 09 16 23

THURSDAY PSYCHEDELICS Robin Carhart-Harris Pop-up theatre WE DON’T DO BLAND, WE DO BRILLIANT! (ADVANCED) Michael Stott & Jen Woodward 54

INSPIRATION TO SUCCEED Steve Edge Pop-up theatre TEMPLATING IN POWERPOINT Bob Platt 54

A JUDGE’S INSIGHT Tim Jones & Tom Richards Pop-up theatre GREATIVITY (ADVANCED) Paul Bennett & Sam Sargent 54

UNDERSTANDING WIP & AGRESSO Neil Martin 54 WALKING IN THE SHOES OF OUR CLIENTS Elizabeth Egan Pop-up theatre

04 11 18 25

USER TESTING Adam Bloomer & Ivan Merga 54 OWN THE SCIENCE, OWN THE STRATEGY, OWN THE BRAND Anna Stephens & Sarah Price Pop-up theatre

STRESS IS GOOD – RESILIENCE Leona Deakin, Feel Good Co. Pop-up theatre DATA, MEDIA & SEARCH Sarah Price 54

BREAKING THE LINE BETWEEN SUCCESS AND FAILURE Dr Tapas Mukherjee Pop-up theatre KNOW THY CANCER AUDIENCE Rob Fuller & Dr Vernon Bainton 54

#LXACADEMY AWARDS The Principal Hotel

Reserve your place for sessions from 11th May on LYNX INTRANET Fundamentals

Thought Leadership

Science

Strategy

Creative

Technology

Client Services

16

Issue 05

SWITCHED ONcology