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Krusenberg 2019​

EFFECTIVE ADVOCACY: IMPACT 

THROUGH EVIDENCE AND KNOW-HOW. 

ANNUAL MPNE WORKSHOP FOR EUROPEAN MELANOMA ADVOCATES

 

22nd- 24th November 2019

Krusenberg Herrgård, Uppsala, Sweden 

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​Context

European patient advocacy in Melanoma has evolved rapidly and advocacy concepts are becoming increasingly sophisticated.

Since novel therapies now offer real hope of survival for patients even with advanced disease- unthinkable as little as 10 years ago- concerns in Melanoma advocacy have shifted to saving patients' lives and rather technical and scientific areas like setting research agendas, drug development, regulatory and HTA processes, pharmaco- economics and challenges around sustainability, affordability and ecosystems supporting innovation.

In these settings, just having a personal opinion is insufficient- in the end, we need solutions that work for everyone, not just single individuals, and other stakeholders will rightfully request evidence for our claims. 

This workshop's topic is how to advocate with impact and the role evidence plays in it. Within the concept of evidence-based advocacy, this workshop will focus on how to find or generate scientific evidence as well as on how to communicate and strategically use it. 

Faculty

see program 

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For whom is this workshop?

This is a workshop for active experienced MPNEhubs and upon application only.

 

We are looking for European Melanoma advocates

1. who are active in Melanoma advocacy within their own country and/ or at European level and

2. who have demonstrated interest in the wider Melanoma/ advocacy community outside their own narrow field of work.

We are looking for advocates who want to make a difference and for that are willing to learn, work together and put in the effort before, during and after the workshop to produce concrete results for the benefit of Melanoma patients.

The number of participants is limited to 30 advocates to ensure effective exchange.

 

A sufficient working knowledge of English is essential to participate in the discussion. 

 

 

How does it work?

1. Attendance of this workshop is upon application only.

2. Selection: The organising committee will select participants based on their motivation with regards to access to innovative therapies in Melanoma, experience in collaboration and exchange and their level of English. As always, we are aiming for a balanced European mix!

3. Acceptance: Selected applicants will need to accept their place at the workshop and agree to  

4. Accommodation: registration, accommodation and workshop meals will be arranged by MPNE and are free for selected advocates during the workshop (Friday and Saturday night).

5. Travel: Advocates however need to arrange their own travel- please wait until you have heard from us before booking. We are able to provide a travel allowance up to 400 Euro for economy/ 2nd class travel after the event and against original receipts only. Please book as soon as possible to keep travel costs low.

6. Extras: Please note that extras at the hotel, additional nights as well bank fees are at your own expenses and will not be covered by MPNE.

Organisers

Gilliosa Spurrier, MPNE

Violeta Astratinei, MPNE

Bettina Ryll, MPNE

Fredrik Östman, MPNE​

 

The small print

Decisions about workshop participation will be based on suitability for the workshop as well as scope of the Melanoma patient network Europe and are final.

Program

EFFECTIVE ADVOCACY-

EVIDENCE, STRATEGY, IMPACT.

ANNUAL MPNE WORKSHOP FOR EUROPEAN MELANOMA ADVOCATES
 

'WITHOUT DATA YOU ARE JUST ANOTHER PERSON WITH AN OPINION'. 
W. EDWARDS DEMING.

 

​22nd- 24th November 2019

arrival 22nd mid-day

 

Location 

Krusenberg Herrgård, Uppsala, Sweden 

 

 

Please bring your laptops or tablets for the group work 

 

Friday, 22nd November
Day 1

 

 

14.30- 15.30 Coffee

 

15.30- 16.30

Elevator introductions and introduction to the weekend: Effective Advocacy
Bettina Ryll, MPNE


16.30- 17.30 Melanoma Histopathology and Molecular Pathology
An introduction to Melanoma histopathology, Molecular Pathology as well as ongoing efforts in the European Pathology community of relevance to patient advocates
Daniela Massi,Careggi University Hospital Florence, Italy, confirmed
 

17.30- 18.00 Update: Early Melanoma- predicting progression
Arjan van Manen and Dennie Tempel, SkylineDx

 

18.00- 19.15 The Melanoma research we need

Mapping research needs in Melanoma

Bettina Ryll

19.15- 19.30 WECAN

Gilly Spurrier

 

 

20:00 Dinner

 


Saturday, 24th November
 

from 8.00 Breakfast 


9.00- 10.00 FAIR data
Nigel Hughes, European Health Data and Evidence Network  

 

​10.00- 10.30 Coffee

 

10.30- 11.45 Advocacy at regulatory level
End points that matter to patients
Jorge Camerero, AEMPS, Spanish Medicines Agency, and CHMP alternate at EMA
The European Medicines Agency from a patient advocate’s experience
David Haerry, Patvocates

 

preparation

please review the role and the work of the European Medicines Agency, e.g. here
 

12.00- 13.00 Lunch


13.30- 15.00 Value Assessment Frameworks and Patient Preferences

Axel Mühlbacher, Hochschule Neubrandenburg, Germany, confirmed
 

15.00- 15.30 Coffee

15.30- 17.30 Session- Ethical considerations in Early Access Programs
Jan Liliemark, SBU, Swedish Council for Health Technology Assessment, Sweden, Mark Sheehan, The Ethox Centre, University of Oxford, confirmed

 

17.30- 18.30 Effective communication in advocacy: Tips and Tricks 
Petra Naster, Vital Transformation, confirmed

19.00- 19.30 Glögg och Pepparkakor

Join us for a very Swedish tradition

 

19.30 Julbord Dinner 


Sunday, 25th November
 

Advocacy Day MPNE members only

 

8.00- 9.00

Breakfast

please make sure you check out


9.00- 10.00

Effective Advocacy

30' Learning from the Red Cross Disaster Response

Andrew Evans, MPNE

Updates
15’Cross-border Access to clinical trials
Erik Näsman
15’ FAIR patient data
Rob White

 

10.00- 10.30 Coffee

 

10.30- 12.30 MPNE in 2020 

10.30- 11.30 The Melanoma project 

Otso Valta

 

  • Update about recent developments within MPNE- Horizon2020 projects in rare Melanomas, new meetings, growing network

  • Annual session: unmet need in the network

  • MPNE in 2020- annual conference, meetings, other opportunities


12.30- 12.45

Workshop Summary and Closure
Bettina Ryll, MPNE

13.00- 14.00

Lunch and Departure

This event was made possible thanks to the support of

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