arrival MPNE hub advocates
MPNE hub meeting- for advocates involved in MPNE projects
Agenda shared closer to date.
Gilly Spurrier, MPNE and MelanomeFrance, France
Fredrik Östman, MPNE and Melanomföreningen, Sweden
Q.1 Welcome and introduction to MPNE
Q.2 Introduction to Melanoma
James Larkin, Royal Marsden, UK
Please don't forget to submit your workshop choices!
W1 Quality of Life and how to measure it.
facilitator: Bettina Ryll
W2 Side effects in Melanoma
facilitator: Gilly Spurrier
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
W3 Statistics for Melanoma advocates
facilitator: Kay Curtin
Want to understand what is behind those figures in the scientific publications you are reading?
Corneel Coen, EORTC, Belgium
W4 Rare Melanomas (ocular, acral, mucosal)
facilitator: Iain Galloway, MPNErare
Christian Ottensmeier, Southampton, UK
Advocacy speed dating with Tom & Koen
Tom van der Velde, Melanoompunt, BE and Koen van Elst, Stichting Melanoom, NL
World Cafe reception
Anne Wispler and Hans Boetl, Selbsthilfe Gruppe Berlin, D and Martina Kiehl, Selbsthilfe Buxtehude, D
Thon Hotel Bristol Stefanie, Room Embassy & Consulate
Welcome to the conference and introduction
Bettina Ryll, MPNE
Session 1- What is 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, 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
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
Session 3- Value, access and innovation
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
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, Cancer Prevention, MD Anderson
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?
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
Thon Hotel, restaurant
Introduction to the day
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 15'
Rachel Kalf, ZIN, Netherlands
Join us for a round of Melanoma Kahoot!
Test your Melanoma knowledge in a team!
Gilly Spurrier, MPNE
Session 6- EUPATI for MPNE members
Introduction to the MPNE platform for the EUPATI course
Rob White, MPNE, UK
Discussion with Rob and our EUPATI- fellows:
Conference Summary and Conclusion
Lunch and departure
We are looking forward to seeing you!
What can we do to directly help Melanoma patients who reach out to our network?
at our very special reception- you will be surprised what we as a network can do
like-minded people is an important part of what we do
find out in a very short time what your advocacy colleagues are up to- don't forget to sign up when you accept your place
Melanoma Patient Network Europe
get an introduction to the medical basics
in Melanoma- in particular, the different therapies that are available.
Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
17th- 19th March 2017
Thon Hotel Bristol stefanie, Avenue Louise 91-93, 1050 Brussels, Belgium
after your feed-back from last year-
an MPNE QuickStart session