MPNE2017 program

Melanoma Patient Network Europe 17th- 19th March 2017 Brussels, Belgium http://asgstrategies.com/focus-on-value-not-price/

VALUE versus AFFORDABILITY in Melanoma.

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www.melanomapatientnetworkEU.org

MPNE 2017 Location Thon Hotel Bristol Stephanie Avenue Louise 91-93 B-1050 Brussels Tel. +32 2 543 3311

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

Responsible Bettina Ryll Gilliosa Spurrier Violeta Astratinei

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Dear MPNE2017 participant, a very warm welcome to Brussels for MPNE2017, the 4th annual conference of the Melanoma Patient Network Europe!

This year’s topic is VALUE versus AFFORDABILITY in Melanoma and will shed light on the different aspects of value, what value means in the context of healthcare and how this affects which medicines are available to Melanoma patients with advanced disease.

The devil is in the detail It is easy enough to agree in principle that healthcare needs to deliver value- who doesn’t like value for money?

However, what that value concretely looks like very much depends on your position within the healthcare system- so who gets to decide?

And how do we ensure that the final result actually delivers value for Melanoma patients?

Value-based healthcare and affordability Financial constraints are a reality of all European Healthcare systems and patients often struggle to even access medicines deemed ‘valuable’.

Where is the issue? And as we don’t have a cure for all Melanoma patients yet, how can we ensure that there will be one in the future?

Join us to share your perspective on value and a challenging discussion on value, access and innovation!

Don’t forget to make full use of the opportunity to meet your European Melanoma colleagues in the workshops- any insight or experience you are looking for in particular? Let us know and we do our best to connect you!

Bettina, Gilly and Violeta MPNE

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MPNEhubs pre-conference by invitation only

Thursday, 16th March afternoon arrival MPNE hub advocates 19.00 Working Dinner Friday 17th March 8.30- 12.30 MPNE hub meeting- for advocates involved in MPNE projects Agenda shared separately

Program MPNE2017 Version 12th March

Friday, 17th March 14.00 - 15.30

MPNE QUICKSTART FOR NEWCOMERS Facilitators Gilly Spurrier, MPNE and MelanomeFrance, France Fredrik Östman, MPNE and Melanomföreningen, Sweden 1. Welcome and introduction to MPNE Gilly Spurrier, Fredrik Östman • meet your colleagues • introduction to our European Melanoma Network • MPNE principles • advocacy tools and communication 2 Introduction to Melanoma James Larkin, Royal Marsden, UK

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15.30- 16.00 Coffee 16.00- 17.30

Workshops Please note that workshops run in parallel!

W1 Quality of Life and how to measure it.

James Larkin, Royal Marsden, UK and Mark Larkin, Vitaccess, Switzerland W2 Side effects in Melanoma Correctly identifying and treating side effects are a constant topic on our forums- what can we do to better help patients?

Rebecca Chandler, UMC, Sweden Michel Walravens, Belgium: Community-based participatory medicine W3 Statistics for Melanoma advocates Want to understand what is behind those figures in the scientific publications you are reading?

Corneel Coen, EORTC, Belgium Kay Curtin, Melanoma Support Ireland, Ireland W4 Rare Melanomas (ocular, acral, mucosal) Christian Ottensmeier, University of Southampton, UK Iain Galloway, MPNErare 18.00- 19.00

Advocacy speed dating with Tom & Koen Tom van der Velde, Melanoompunt, BE and Koen van Elst, Stichting Melanoom, NL 19.00

World Cafe reception Anne Wispler and Hans Boetl, Selbsthilfe Gruppe Berlin, D and Martina Kiehl, Selbsthilfe Buxtehude, D 20.00 Welcome Dinner

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SATURDAY- 18TH MARCH

VALUE VERSUS AFFORDABILITY IN MELANOMA 8.45- 9.00 Welcome to the conference and introduction Bettina Ryll, MPNE 9.00- 10.30 Session 1- VALUE in Melanoma 1.1 Value in Stage 4 Melanoma. The patient perspective.

Kay Curtin, Melanoma Support Ireland, Ireland 1.2 Clinical value in Melanoma Christian Ottensmeier, University of Southampton, UK 1.3 What is a valuable treatment for a regulator?

Francesco Pignatti, Head of Oncology, Heamatology and Diagnostics, EMA, London 1.4 Assessing Value: Health Technology Assessment in Europe and the EUnetHTA core model Michelle Mujoomdar, Senior Scientific Officer, EUnetHTA JA3 Directorate, Netherlands 10.30- 11.00 Coffee 11.00- 12.30 Session 2- Value-based healthcare 2.1 A payer perspective on value Menno Aarnout, Director at AIM, International Association of Non-profit Healthcare Payers 2.2 Value in the eyes of the beholder: assessing the value of melanoma immuno-therapies using an evidence-based approach Vlad Mixich, London School of Economics, UK 2.3 So 3 months are not worth it, you say?

Lucy Davis, Melanomates, UK 2.4 Delivering value- the industry perspective Michael Lees, BMS 12.30- 14.00 Lunch 14.00- 15.30 Session 3 - Value, access and innovation

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3.1 Shortening time to access- demonstrating value of medicines early in development Eric Low, previously: Myeloma UK, UK 3.2 How do we get what patients need? Incentivising innovation Duane Schulthess, Vital Transformation, Belgium 3.3 Accessing innovation in central and Eastern Europe Vlad Voiculescu, MedAlert and former Romanian Minister of Health, Romania 3.4 Incentivising and accessing medical innovation- can we have it both? Belgium's 'Pact for the future' Pol Specenier, Antwerp University Hospital, invited 15.30- 16.00 Coffee 16.00- 18.00 Session 4 - The bigger picture. And tying it all together.

4.1 Accessing innovative drugs successfully- the CML experience Sarunas Narbutas, Lithuanian Cancer Patient Coalition, Lithuania 4.2 The Value of not needing healthcare in the first place.

Melanoma and prevention.

Gil Morgan, ESMO, Sweden 4.3 Surviving Melanoma Kacie King, Melanoompunt.be, Belgium 4.4 Panel Discussion- Value versus Affordability.

Chair: Bettina Ryll So what IS value in Melanoma? Whose values matter in the end? And how do we move forward, for the benefit of Melanoma patients and society?

18.30- 20.00

Reception and Poster competition Ideas worth sharing- the Melanoma Advocacy Project.

Kari Anne Fervang, Føflekkkreftforeningen, Norway, Sretana Njegovanovic, Upoom, Serbia and Luc Vautmans, Melanoompunt.be, Belgium 20.00 Conference Dinner

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SUNDAY- 19TH MARCH
 ADVOCACY DAY please check-out after breakfast 8.45- 9.00 Introduction to the day 9.00- 10.30 Session 5 5.1 Report from 2016, including access project, outlook for 2017 Bettina Ryll, Gilly Spurrier and Violeta Astratinei, MPNE 5.2 Report from our cooperation with ZIN- the QoL study Amr Madady, ZIN, Netherlands tbc 10.15- 10.45 Coffee 10.45- 11.15 Join us for a round of Melanoma Kahoot!

Test your Melanoma knowledge in a team!

Gilly Spurrier, MPNE 11.15- 12.15 Session 6- EUPATI for MPNE members Introduction to the MPNE platform for the EUPATI course Rob White, MPNE Discussion with Rob and our EUPATI- fellows: How do we adapt the curriculum for our needs in Melanoma?

What are country-specific needs and how can we address these?

12.15- 12.45 Closing Session Conference Summary and Conclusion 13.00 Lunch and departure

And before you leaveYour feed-back is valuable- it helps us organise events that bring European Melanoma advocacy forward. You will receive a link to an online survey- an MPNEmonkey- and we appreciate your timely answer.

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Reimbursement of travel expenses for economy/ second class travel up to a maximum of 350 Euro after the event against travel receipts and a completed reimbursement form only.

Please note that incorrect and incomplete forms cause a lot of extra work and delay re-imbursement.

Safe travel and looking forward to seeing you again soon!

Up-coming events (selection)

MPNCEE conference: Melanoma in CEE 23rd- 25th June 2017, Zagreb, Croatia ESMO 8th- 12th September 2017, Madrid, Spain MPNE RARE: Fair trials in Rare Melanoma 6th- 8th October 2017, Amsterdam, The Netherlands

MPNE our vision No more Melanoma deaths in Europe.

Access to effective prevention, early detection and treatment for everyone. our principles 1. Patients first.

2. Solutions, not problems.

3. Data, not opinions and 4. if you are not going to do it- no one will. our approach- Lean advocacy.

Our approach to advocacy is pragmatic- we test, we learn, we improve. As fast as possible as Melanoma does not wait.

Krusenberg 2017, the MPNE autumn workshop: Lean Advocacy 23th- 26th November 2017, Krusenberg HerrgĂĽrd, Sweden Information about program and applications will be shared in due time via the MPNE website and the usual channels.

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Faculty MPNE2016 Speakers Amr Makady, ZIN, Netherlands Bettina Ryll, MPNE, Sweden Christian Ottensmeier, University of Southampton, UK Corneel Coens, EORTC, Belgium Duane Schulthess, Vital Transformation, Belgium Eric Low, former Myeloma UK, UK Francesco Pignatti, European Medicines Agency, UK Gill Morgan, previously MD Anderson, Sweden Gilliosa Spurrier, MPNE and MÊlanome France, France Iain Galloway, MPNE Ocular, UK James Larkin, Royal Marsden Hospital, UK Kay Curtin, Melanoma Support Ireland, Ireland Kacie King, Melanoompunt, Belgium Lucy Davis, Melanomates, UK Mark Larkin, Vitaccess, Switzerland Michael Lees, BMS, France Michel Walravens, Belgium Michelle Mujoomdar, EUnetHTA, Netherlands Menno Aarnout, AIM, Netherlands Pol Specenier, Antwerp University Hospital, Belgium Rachel Kalf, ZIN, Netherlands Rebecca Chandler, Uppsala Monitoring Centre, Sweden Rob White, MPNE, UK Sarunas Narbutas, Lithuanian Cancer Patient Coalition, Lithuania Violeta Astratinei, MPNE, Melanom Romania and Stichting Melanoom Vlad Mixich, London School of Economics, former Vice President of the Romanian National Agency for Medicines, Romania Vlad Voiculescu, former Ministry of Health, Romania Advocacy Speed Dating Tom van der Velde, Melanoompunt.be, Belgium Koen van Elst, Stichting Melanoom, Netherlands World-Cafe Anne Wispler, Hautkrebs Netzwerk, Germany Hans Boetl, Hautkrebs Netzwerk, Germany Martina Kiehl, Hautkrebs Netzwerk, Germany Posters Kari Anne Fervang, Føflekkkreftforeningen, Norway, Sretana Njegovanovic, Upoom, Serbia and Luc Vautmans, Melanoompunt.be, Belgium

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MPNE 2017- 17th- 19th March 2017- Brussels

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Good to know Currency in Belgium EURO Cash machines can be found in the arrival area at the airport.

Dresscode Business casual Weather an umbrella might be a good idea Closest Airport Brussels International Airport Zaventem Location Thon Hotel Bristol Stephanie Avenue Louise 91-93, 1050 Bruxelles, Belgium Phone: +32 2 543 33 11 Transfers You are responsible for organizing your own transfer. Queues for taxis at Zaventem airport tend to be long and traffic in Brussels horrific. We therefore recommend the direct train to Brussels.

The train station is located in the airport, out of the arrival gate across to the right, take the lift or the escalator down to the bottom level. Train tickets can be purchased at the ticket vending machines, all international cards accepted, or at the ticket counter. Alternatively, get the SNCB app and purchase online before to skip the queues!

From Bruxelles Midi (Brussel Zuid) - either the number 2 or 6 metro from Gare Du Midi station towards Elisabeth (usually indicated on platform) and it is three stops to Louise. Walk 500m to the hotel.

Incidentals The conference budget covers conference participation, accommodation for 2 nights and meals during that time; please note that you will be responsible for all other extra costs.

Contact during the conference Bettina Ryll +46-722297272 Gilliosa Spurrier +33-676318349 Violeta Astratinei +31-646699527 Iain Galloway +44-7931790201

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We thank for their support

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Thank you to •

All the speakers and volunteers without whom this event would have been impossible.

•

Alexandra Sorgenicht and her team for their dedication to capture our concerns on film.

program version 12th March 2017

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