MPNE 2016 conference report

MPNE 2016 ‘Power to the Patient.

With great power comes great responsiblity.’

18th- 20th March 2016, Leuven Conference Report During the last weekend, 96 European Melanoma patients and advocates from 18 countries and other stakeholders gathered for MPNE2016, the annual conference of the Melanoma Patient Network Europe.

This year’s topic was Patient Empowerment, its concrete meaning for Melanoma patients and our role of Melanoma advocates in the empowerment process.

Prior to the conference, network members had collected their thoughts on empowerment in Melanoma here. Knowledge was a basic and unifying theme, true to the sense that knowledge is power. For this reason, MPNE2016 heavily focused on knowledge, including direct education, instructional design and future educational needs.

MPNE2016 started Friday, 18th March with workshops targeting different interests groups: 1. Early Detection, 2. a play/ decide decision conference on Data and 3. Psycho- Social support in Melanoma.

Workshop results include the formation of a Early Detection Working group, aiming for a systematic mapping of ongoing efforts in our network and the development of a standard to measure

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impact of interventions, and the decision to investigate the psychosocial needs in Melanoma more systematically.

Workshop presentations, results and future work will be shared via MPNE on issuu. In the evening, advocacy speed dating allowed new advocates to quickly gain access to the knowledge of our network. In parallel, MPNE ocular, the MPNE sister network for ocular Melanoma patients met for the first time. And during the World Café reception, advocates brainstormed on topics currently relevant to our network.

Saturday, 19th March, opened with a powerful statement from Lucy Davis on what knowledge meant for her as a Stage 4 Melanoma patient. The next sessions focused on Melanoma, starting with lectures on the disease, the genetic background, the working of immune therapies and state-of-the-art treatment schemes. Iain Galloway gave a very poignant impression of the difficulties of having ocular Melanoma, a rare form of Melanoma.

Building on the morning sessions, the acquisition and sharing of knowledge were discussed, including instructional design with the need for blended learning, how to read scientific papers and information about the structure of early access/ compassionate usage programs. The day ended with presentations of newly founded or joined Melanoma networks or advocacy actions from Germany, Denmark, Belgium, Serbia and the UK. The advocacy day on Sunday, 20th March, provided an overview of MPNE’s network structure and presented MPNEE, Melanoma Patient Network Eastern Europe, that will specifically focus on the problems of Melanoma patients in Eastern Europe, followed by summaries of the Friday workshops and discussions on how to take forward workshop results, concluded by planning for activities in 2016. In particular noted were the need for preparatory/ introductory sessions for first-time attendants of MPNE conferences and for an educational curriculum for MPNE advocates.

During the conference, participants had the opportunity to participate in the first MPNE Grand Challenge. This joint project with the Anticancerfund Belgium tested knowledge about cancer and nutrition, a topic widely discussed on Melanoma advocacy forums.

The conference program is also available online.

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Melanoma Patient Network Europe We are a network of European Melanoma patients and advocates.

Our vision- No more deaths to Melanoma in Europe. Access to prevention, early detection and effective treatment in Melanoma for all Europeans.

Our mission is to provide a platform for collaboration, exchange and education for European Melanoma patients and advocates to systematically and pragmatically address the problems of our community.

MPNE principles 1. patients first 2. solutions, not problems 3. data, not opinions

Our website www.melanomapatientnetworkeu.org/home.html Next events www.facebook.com/Melanomapatientnetworkeurope/events

Organizer MPNEsupport for Melanoma Patient Network Europe Org. 802492-1069 Fjällbo Selknä 152, 75597 Uppsala, Sweden

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This event was made possible through the support of

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