MPNE autumn workshop- final report

MPNE autumn workshop for European Melanoma Advocates

Reading Scientific Papers

27th- 29th November 2015 Krusenberg Herrgård, Sweden

Last weekend, 25 European Melanoma advocates from 12 European countries met for the second MPNE autumn workshop in Krusenberg Herrgård, Sweden.

This year’s topic was ‘How to read a Scientific Paper’, as advocates had repeatedly identified this as a highly relevant skill.

The workshop started on Friday, 27th November, with a visit to UMC, the Uppsala Monitoring Center. UMC researchers gave an introduction into Pharmacovigilance and their work, followed by a discussion about the needs of the Melanoma Patient Network Europe and possibilities how to increase direct adverse event reporting by patients. This meeting was the first in what will hopefully become an ongoing dialogue and a project into what Melanoma patients can directly do in order to increase the safety of the new medications they are taking.

Saturday, 28th November, focused on the reading of the scientific article and we are very grateful to Prof. John Haanen/ NKI, Netherlands for taking the time to extensively prepare and hold a full-day workshop. The publication chosen by the organizers for 1 MPNEsupport Org. 802492-1069

Fjällbo Selknä 152, 75597 Uppsala, Sweden Bank MPNEsupport IBAN SE87 9500 0099 6042 0742 7669, BIC-kod (SWIFT) NDEASESS

relevance for the audience was Larkin et al. 2015. Sessions were structured according to a scientific journal club with background, introduction, design, results, followed by an extensive discussion.

Additional sessions focused on readability (Kristin Bryon) and access to scientific information (Violeta Astratinei).

The focus on Sunday, 29th November, was how to effectively share scientific information with a wider patient base. Roald Nystad gave an overview over the work and impressive reach that the Norwegian Melanoma Association achieved in about a year’s time, followed by a discussion where advocates brought in their country-specific experiences.

Sunday’s last session was a planning session for MPNE 2016, the annual conference of the Melanoma Patient Network Europe, planned for 18th- 20th March 2016 in Leuven, Belgium.

Topic in 2016 will be ‘Power to the Patient. With great power comes great responsibility.’ and focus on the different level of patient empowerment- as individual patient, as patient advocate and as member of society taking part in decision-making processes like research agenda setting, participation in regulatory and HTA processes and politics.

A great thank you for everyone who contributed to make this event such a success- our speakers, in particular John Haanen, our participants and our sponsors Amgen, BMS, MSD and Novartis without whom this workshop would not have been possible and the observers who spent their free weekend learning about Melanoma research!

Uppsala, 1st December 2016 Bettina Ryll

We thank for their support

2 MPNEsupport Org. 802492-1069

Fjällbo Selknä 152, 75597 Uppsala, Sweden Bank MPNEsupport IBAN SE87 9500 0099 6042 0742 7669, BIC-kod (SWIFT) NDEASESS