Advantages and limitations of online communities of patients for research on health products

2018-02-22T13:44:56+00:00 January 25th, 2017|Featured, Publications|

  • Published by Elsevier Masson

  • Authors: Ravoire S, Lang M, Perrin E, the participants of Giens XXXII Round Table No. 6, Audry A, Bilbault P, Chekroun M, Demerville L, Escudier T, Guéroult-Accolas L, Guillot C, Malbezin M, Maugendre P, Micallef J, Molimard M, Montastruc F, Pierron E, Reichardt L, Thiessard F

The way patients and their caregivers share information on various online platforms about health topics and their own experiential knowledge presents new potential environments for research, particularly as concerns health products. How patients freely express their experiences and feelings and the reality of what they share also opens the way for societal research into health products, a field that is still under-explored. The round table on this topic endeavoured to: explore these issues and develop a better understanding of the phenomenon and the different varieties of online communities and networks for patients; identify possible advantages, special features, and methodological, regulatory, and ethical limitations that researchers currently face; and finally, to put forward the first  recommendations in this growing field of research.