​​​​​​​​​​PROGRAM

Version 17th September 2018

Hotel Novotel Bucharest City Centre
Calea Victoriei 37B, Bucharest 010061, Romania

Phone:+40 21 308 8500

please bring your own tablet/ laptop

Friday, 21st September

Afternoon

14.00- 16.00 ​Coffee & Poster session IDEAS WORTH SHARING
Meet your colleagues and present your latest work with a poster!

Please note that we are looking for advocacy projects, so not just problems or ideas,

but ideas turned into projects. And obviously, a great opportunity to catch up with old friends and make new ones!

Conference Opening Session
16.00- 16.30
Conference opening and Welcome to Bucharest! 

Violeta Astratinei, Melanom Romania and MPNE 

MPNE- an introduction to the network and the MPNE approach to advocacy

Who we are and how we work.

Bettina Ryll, MPNE founder

Melanoma- the latest.

16.30 -18.00

• Know your stage! The new staging classification in Melanoma
  

Gilly Spurrier and Violeta Astratinei, MPNE

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• Know your drugs! Melanoma therapies explained
  

Bettina Ryll, MPNE

• ASCO update

​18.00-18.30

MPNE Kahoot! Test your Melanoma knowledge! 

18.30- 19.00

From Denial to Denali.
Fredrik Östman, Melanomföreningen and MPNE 

20.00 Welcome Dinner


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Saturday, 22nd September 

9.00- 10.30

Session 1 Stage 3 Melanoma- the latest updates

chairs Koen van Elst, Netherlands and Silvia Coman, Romania

Recently, therapies previously only used for Stage 4 Melanoma have moved into earlier stages as adjuvant or neo-adjuvant treatments.

This session will look at the existing data sets- what do we know about how these therapies work for Stage 3 patients? 

• Stage 3 in detail- understand the differences between substages within Stage 3 
  
• Studies in detail- we will go through the latest publications, with particular focus on a) the patient population treated 2) the endpoints of the study and 3) obviously the conclusions
  
• Discussion: criteria on how to choose which therapy, considerations for subsequent treatment choices, side effects and their management, access in CEE 
  
• problems with access to adjuvant therapy- e.g. the latest NICE decisions
  

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Further reading

Checkmate 238- full free text here

Combi AD- full free text here

Keynote 054- full free text here

Targeted therapy neo-adjuvant: unfortunately pay-walled here

10.30-11.00 Coffee break

11.00- 12.15
Session 2 Saving Melanoma lives in CEE- successful prevention, early detection and accessing effective and safe treatment

chair Biba Dodeva, Macedonia 

Reducing the long-term mortality of Melanoma will require a joint-up strategy of covering prevention, effective early detection and access to effective treatments. This sessions will look at different aspects of what a successful long-term strategy should incorporate.

• The need for a holistic approach to advocacy in Melanoma
• Health as a universal right, not as an optional benefit​
  
• Taking action to fill existing gaps in a healthcare system
  

Introduction to the session: Melanoma Advocacy in CEE

Biba Dodeva, BORKA, Macedonia

Improving early detection in Melanoma

​Suzana Konjevoda, Croatia tbc

EPF campaign: Access to Healthcare for all
Gabriela Tanasan, European Patient Forum

Taking action- building your own cancer hospital.

Oana Gheorghiu, Bursa de Fericire, Romania, tbc

Discussion

12.15- 13:30 Lunch

13:30- 15.00
Session 3  Fixing healthcare- data, collaboration and evidence-based policy 
chair Bettina Ryll, Sweden

Many of the problems Melanoma patients are facing are not specific to Melanoma but caused by larger problems within healthcare. In this session, we will look at what it takes to make better decisions in healthcare, what type of data can support this and how collaborations can share the workload. 

Evidence-based decision-making in health

Vlad Voiculescu, former Romanian healthcare minister

Insightful data- you can only solve problems you understand.

Sorin Petcu, IQVIA, Romania

The recent EU proposal for increased collaboration in Health Technology Assessments- challenges and opportunities for CEE.

Bertalan Németh, Syreon Research Institute and ISPOR, Hungary

​​Discussion

Further reading

Recent publication from The Lancet why high quality provision of health care matters: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31668-4/fulltext

15.00- 15.30 Coffee break

15.30- 16.30

Session 4- Access to effective Melanoma therapies

chair Violeta Astratinei, MPNE

Access to Melanoma therapies in CEE
What have we learned about access in Melanoma so far?
​​​Bettina Ryll, MPNE

Accessing Innovation in CEE

Bertalan Németh, Syreon Research Institute and ISPOR, Hungary

Primer on clinical trials- how to find them and the small print to watch out for

Clinical trials are one way of accessing new medicines. However, not everything what is new is promising and not every clinical trial design is fair for patients. 

Bettina Ryll, MPNE

16.30- 17.15

Session 5- Making your point

chair Bettina Ryll

Finding out what patients really need and want is crucial for us as patient advocates- how else are we going to ensure that we provide effective help for patients and convince decision-makers to change direction? Thanks to our networks, we are in contact with many patients and free internet-based tools allow to easily run surveys. Learn in this session how to ask the right questions to end up with meaningful insights though! 

A good survey

Jon Garrido, Barcelona

17.15 till dinner

Time for discussion

We will use this time to discuss in groups several topics that could make a difference for Melanoma patients:

1 Mapping access to innovative Melanoma medicines in Central and Eastern Europe.
We will use a method similar to Krusenberg 2016 to map which of the new Melanoma therapies are available where and under which conditions
Objective: provide advocates with a detailed understanding of access issues in the region and a comparison for their own country

2 Patient Navigation for Ocular Melanoma

Ocular Melanoma is a rare and distinct form of Melanoma. Detection, treatment and follow-up for Ocular Melanoma differs from Cutaneous (skin) Melanoma- this can become a particular challenge for patients in Central and Eastern Europe. This workshop will focus on how we can best help OM patients from the region to receive the best possible care.

3 Advocacy Strategy for Melanoma

Complaining is easy, finding solutions is hard. Join us for a mapping and brain-storming exercise about the Melanoma issues specific to Central and Eastern Europe, how problems relate to each other and how we could contribute to possible solutions.

18:30 Conference Dinner

​Walk in the Old Town of Bucharest


Sunday, 23rd September - Advocacy Sunday
please do not forget to check out from the hotel after breakfast

9.00 -10.00
Session 5 Knowledge is power- but effective education requires more than good intentions.

Knowledge protects patients and education is an important part of our work as advocates.

This session will look at why education matters and how advocates can educate themselves in order to become better educators. 

​Chairs- Gilly Spurrier, Violeta Astratinei​

Knowledge protects- a nurse's perspective.

Daniela Amey, Great Britain 

Spotting pseudoscience
Gilly Spurrier, Melanome France and MPNE

Educating yourself. 
Monica Althamer, MagiCamp Association, Romania​

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Discussion 

How do we ensure Melanoma patients receive correct information?

How do we best share training opportunities for Melanoma patients and patient advocates?

10.00- 10.45
Session 6 Update from the network PART I

Hear what your colleagues have been working on during the last year and be inspired!​

10.45- 11.15 Coffee break

11.15- 13.00

Session 6 Update from the network PART II
Hear what your colleagues have been working on during the last year and be inspired!​

13.00- 13.15

Summary and conference closure

13.15 Lunch and departure


Looking forward to seeing you all in Bucharest!

The MPNE team
​
​​

When survival depends on access 
to life-saving innovation

Program

MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Melanoma

in  Central and Eastern EuropE​

21st- 23rd September 2018

Bucharest, Romania

Scan and apply.  MPNCEE2018

SEE you in bucharest? 

Surviving Melanoma in CEE

21st- 23rd September 2018