Patient involvement in decision-making

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).

ENMC - group pic. 1 - smThe 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 aims

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:

 How will they do this?

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.