the price for a life

Annual MPNE workshop for European Melanoma advocates

​22nd- 25th November 2018

arrival 22nd in the morning, we start with lunch


Krusenberg Herrgård, Uppsala, Sweden 

Friday, 25th November

Please bring your laptops or tablets for the group work 

Thursday, 22nd November
Day 1

Arrival and registration

12.30- 13.30 lunch

13.30- 15.00

Workshop- Patient involvement in HTA


We will be looking where in our network there is already effective patient involvement in HTA, how we can help each other and how national EUPATI platforms could help train patient advocates. In the case study part, we will discuss ongoing patient submissions to HTA bodies, so bring your material if you want input from your colleagues!

Introduction- why patient input into HTA processes?


The patient perspective

Bettina Ryll, MPNE


The HTA perspective

Chris McCabe, IHE

Case study

Please try to answer the following questions

- is there a defined process for patient submissions in your country?
- has there been clear communication what type of information and perspective the assessors consider particularly helpful?
- is there a template for the submission?
- is the template a suggestion or compulsory?
- how much freedom do you have to submit what you consider relevant?
- any inexplicable restrictions- e.g. 'patients cannot comment on clinical data'?
- any type of bias you perceive- in terms of who can submit or the format of the submission?
- is there a feed-back mechanism in place, so if you have submitted in the past, were you able to get constructive feed-back on your submission? 

Gilly Spurrier

Input = Output. How to ensure our submissions are of high-quality, relevant and to the point.


Educational opportunity: Overview over national EUPATI platforms

Roald Nystad, MPNE


Discussion- MPNE members' involvement in national EUPATI platforms


Discussion: Problems with patient submission


15.00- 15.30

15.30- 16.30


Creating a resource for MPNE Melanoma advocates

Further reading

​EUPATI guidance on patient involvement in HTA

EPF survey on patient involvement in HTA in Europe

16.30- 18.00

Lean Advocacy- one year on 

Re-visit the tools and formulate an MPNE Lean Advocacy Tool Kit

'Best of' from last year's Krusenberg workshop and the tools to take forward for your advocacy work.

Andrew Evans, Bettina Ryll

18.00- 19.15
Welcome and elevator pitch introductions
Your 2 min of fame- train to introduce yourself effectively!


20.00 Dinner 

Friday, 23rd November
Day 2- Introduction to HTA

from 7am Breakfast 

8.30- 10.00
Session: Introduction to HTA 

Chris McCabe, IHE


Welcome to the workshop and this session

Bettina Ryll, MPNE


HTA and Universal Healthcare

Vlad Dutescu, MPNE and Melanom Romania

Introduction to HTA

Chris McCabe

Understand the motivation and principles behind Health Technology Assessment 

Main concepts of HTA

10.00- 10.30 Coffee

10.30- 11.45
Session: HTA in Europe- EUnetHTA and the Nordic Collaboration

Niklas Hedberg, TLV and EUnetHTA

  • EUnetHTA
  • EUnetHTA core model
  • current EU proposition for joint clinical assessment


Further reading

Overview and comparison of HTAs in Europe from the European Commission

HTA in the Nordic Countries 

12.00- 13.00 Lunch

13.30- 15.00
Session: Uncertainty in decision-making

Johan Hansson, KI, Sweden

Niklas Hedberg, TLV and EUnetHTA

Chris McCabe, IHE, Canada

Understand why uncertainty is problematic and discuss strategies to effectively reduce it for the benefit of all stakeholders involved

Clinical perspective

Johan Hansson, Karolinska Institutet, Stockholm, Sweden tbc

HTA perspective

Niklas Hedberg, TLV

Payer Perspective

Chris McCabe

Patient perspective

Group work and discussion

15.00- 15.30 Coffee

15.30- 17.00

Real World Data in HTA assessment
Chris McCabe, Niklas Hedberg

Introduction to Real World Data
Why is Real World Data important?
How to incorporate RWD into HTA decision-making

further reading

A good introduction- Real-world-evidence-for-health-technology-assessment-of-pharmaceuticals-opportunities-and-challenges - full text of A. Makady's PhD thesis available on slack

GetReal - a project looking at the use of Real World Data in HTA

Listen to why Real World Data is important and what pragmatic clinical trials are

17.00- 18.30
Advocacy session: MPNE members only


Rob White and Fredrik Östman 

Data is highly relevant for decisions in healthcare but as such, rather a vague concept. In this session, we will simply have the time to listen to two of us who spend most of their working time on data- so time to pick their brains about the challenges, concerns and potential of data!

19:30 Reception

20:00 Dinner

Saturday, 24th November
Day 3- thoughts on innovation

from 8 Breakfast 

8.30- 9.00

Session: recent findings in adjuvant Melanoma therapies

A review of the latest adjuvant Melanoma studies

Johan Hansson tbc

9.00- 10.00
Session: Bench to bedside: from scientific finding to clinical application

We continuously read about 'highly promising' results in clinical journals but what does it REALLY take to turn a scientific finding into a clinical application? And what type of evidence does it take to prove that something is actually working?

Arjan van Manen and Jvalini Dwarkasing, SkylineDx

10.00- 10.30 Coffee

10.30- 11.45

Session: Electronic Health Records

​An introduction to Electronic Health Records- what they are, what is important to understand about them and how they help to improve care

Maria Hägglund, Uppsala University and Karolinska Institutet, Stockholm

further reading

12.00- 13.00 Lunch

14.00- 15.00

Session: Evidence for access

​Jeanni van Loon, PRMA consulting

15.00- 15.30 Coffee

15.30- 16.30

Advocacy Session 1- MPNE members only

Advocates driving research

Koen van Elst, Violeta Astratinei

16.30- 18.00

Advocacy Session 2- MPNE members only

Issues in advocacy

​Discuss with your colleagues the advocacy challenges you face!


19.00- 19.30 Glögg och Pepparkakor

Join us for a very Swedish tradition

19.30 Julbord Dinner 

Sunday, 25th November
Day 4- Advocacy Day MPNE members only

8.00- 9.00


please make sure you check out

9.00- 10.00


MPNE our network

How do we work and what is particular about our network?

Group exercise


Learning from our colleagues in HIV and CML: ECAB- European Community Advisory Boards

Bettina Ryll, Gilly Spurrier and Violeta Astratinei

10.00- 10.30 Coffee

10.30- 12.30

MPNE in action 

  • Melanoma in CEE- the situation in Ukraine

Violeta Astratinei and Valdimir Chekhmir

  • Update about recent developments within MPNE- Horizon2020 projects in rare Melanomas, new meetings, growing network
  • Annual session: unmet need in the network
  • MPNE in 2019- annual conference, meetings, other opportunities
  • Ask your colleagues: topics you want to discuss with other MPNEhubs

12.30- 12.45

Workshop Summary and Closure
Bettina Ryll, MPNE

13.00- 14.00

Lunch and Departure


Workshop participation, travel

and full-board accommodation 

will be free for participants.

Participation is upon application only.

Requires preparation



Work in progress- please come back to check for updates!

Last update 17th November 2018 BR

MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe