Paper short abstract:

Discussing collaborative research on chronic and rare diseases I want to bring a third game into play. Besides social scientists as one part and clinician and biomedical scientists as another the third part are people living with a chronic and rare disease and their families.

Paper long abstract:

My input goes back to my experiences as family caregiver for a close person with the rare progressive neuromuscular illness Amyotrophic lateral sclerosis (ALS) while living in the German speaking part of Switzerland. Recently I joined the Patient Advisory Council for ALS Patients Connected (APC) in the Netherlands. Primarily based upon my membership within this patient advisory council I see collaboration between both clinical and fundamental (lab, genetics and translational) researchers in ALS as well as biotechnology and pharmaceutical companies and ALS patient advocacy groups as pragmatic due to the need to find a cure. If I am asked to judge a research proposal from patient perspective I have to roughly understand the specific clinical, basic biomedical, biophysical and molecular neurobiological language in order to be able together with other members of the Patient Advisory Council to put forward questions relevant for people with ALS to researchers in ALS. From this point of view I would question the notion 'awkward'. People with ALS, family members, healthcare professionals and researchers, all of them have the same goal and are striving to find a cure. Nevertheless there are power differences and different emotional and existential involvements. Developing step by step research on informal care within the structure of ALS/MND (Motor Neuron Disease) multidisciplinary care my motivation is twofold: as a former caregiver for my lifelong partner and a medical anthropologist. In the actual phase of participating observation I realize that I am more engaged as an insider than as a researcher.