Advantages and limitations of online communities of patients for research on health products
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.
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The use of patient platforms limits the researcher's ability to include individuals who do not have access to the online tool and thus may lead to a potential recruitment bias.
“The use of patient platforms, however, limits the researcher’s ability to include individuals who do not have access to the online tool and thus may lead to a potential recruitment bias [24].”
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- Authors
- Ravoire, S., Lang, M., Perrin, E., 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.
- Affiliations
- Medtronic (France) (FR)
- Boehringer Ingelheim (France) (FR)
- Assistance Publique – Hôpitaux de Paris (FR)
- Hospices Civils de Lyon (FR)
- Sanofi (France) (FR)
- Hôpital de la Timone (FR)
- Centre Hospitalier Universitaire de Toulouse (FR)
- Université de Bordeaux (FR)
- Corresponding author
- Ravoire, Sophie
- Venue
- Therapies
- Publisher
- Elsevier BV
- Published
- 2017-02
- Volume
- 72
- Issue
- 1
- Pages
- 135-143
- ISSN
- 0040-5957 (ISSN-L)
- OpenAlex
- W2570465947
- Cited by
- 31
- References
- 25
- Citations by year
- 2025: 2 · 2024: 3 · 2023: 3 · 2022: 3 · 2021: 8 · 2020: 5 · 2019: 4 · 2018: 2 · 2017: 1
- FWCI
- 5.30
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Therapies (publishedVersion)
- PubMed (publishedVersion)
- HAL AMU (submittedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Toxicology › Pharmacovigilance and Adverse Drug Reactions
- Social Sciences › Health › Social Media in Health Education
- Keywords
- health products, patient experience, pharmacovigilance, adverse effects, real-world evidence, research ethics, regulatory challenges, patient networks, research methodology, health product regulation
- MeSH terms
- Humans, Social Support, Internet, Consumer Health Information, Social Media
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