Therapie. 2017 Feb;72(1):135-143. doi: 10.1016/j.therap.2016.11.058. Epub 2017 Jan 03.

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

Therapie

Sophie Ravoire, Marie Lang, Elena Perrin,

PMID: 28139283 DOI: 10.1016/j.therap.2016.11.058

Abstract

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. The information provided individually and voluntarily by patients who are members of these online communities is a new resource for identifying and understanding precisely how health products are used, assessing their effectiveness, quantifying potential adverse effects in real-life situations, detecting subtle signs that are significant for experts in pharmacovigilance and addiction studies, and developing new assessment tools to help form new working hypotheses. 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. Well-established regulations govern research into health products, which uses resources and methodologies that have changed little over the years. However, the development of online communities of patients presents new possibilities in this field. The challenge we face today is defining their place among traditional research techniques. This place cannot be accepted by all stakeholders unless we first establish a firm understanding of the advantages, limitations, and constraints of these communities. 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.

Copyright © 2017 Société française de pharmacologie et de thérapeutique. Published by Elsevier Masson SAS. All rights reserved.

Keywords: Addiction vigilance; France; Online communities; Online data; Patients; Pharmacoepidemiology; Pharmacovigilance; Post-inscription; Research into health products; Social networks; Virtual communities

MeSH terms

• Consumer Health Information*
• Humans
• Internet*
• Social Media*
• Social Support

Publication Types

• Journal Article