The position of neuromuscular patients in Shared-Decision-Making (SDM) – ENMC international workshop, Milan, Italy on 19th & 20th January 2018: A workshop supported by the ENMC with SMA Europe representation in Mencia de Lemus and Alexandre Méjat (AFM).
The workshop was organised by Professor Hanns Lochmüller (UK) and Professor Aad Tibben (Netherlands), with the ENMC. It was attended by 45 participants from 15 different countries: Belgium, Denmark, Finland, France, Germany, Greece, Hungary, Italy, The Netherlands, Poland, Spain, Sweden, Switzerland, UK and the USA. This group represented a wide range of experts: patients and parents, representatives from neuromuscular diseases organisations, clinicians, health care professionals, researchers, societal and policy researchers, psychologists, ethicists, representatives from regulatory authorities and pharmaceutical companies.
The aim is to further strengthen patient participation for a set of important fields that are, in many European countries, still predominantly in the hands of researchers and clinicians:
psycho-social support of families going through the processes of screening and diagnosis
transition from child, to adolescent to adult patient
research that has major impact on daily life (nutrition, pain, fatigue)
registries and biobanks
clinical trial design
regulatory and consenting processes
How will they do this?
They will create a white paper that positions the patient and patient organisations in neuromuscular disorders as co-creator and co-responsible partner. This document will then be used in discussions with local, regional, national and international stakeholders as well as with fellow patient organisations to achieve endorsement and support for change. In this effort, the role of participants as ambassadors of this change at both local and international level, through their networks, will be key.
They will seek to improve awareness, by disseminating and presenting in the neuromuscular community the outcomes of this workshop and the white paper. ENMC will publish the full workshop report in adequate scientific journals and have the lay report translated in several languages. Here, the role of patient organisations and clinical centres will be key to set the stage for change and transformation in the relation of patients with all stakeholders (researchers, regulatory agencies and industry).
The lay report of this workshop is available on the ENMC website.
The recommendations which followed the workshop: “The Position of Neuromuscular Patients in Shared Decision Making” can be read here.