Health activism and the logic of connective action. A case study of rare disease patient organisations
Open accessAbstract
This exploratory work investigates the role of digital media in expanding health discourse practices in a way to transform traditional structures of agency in public health. By focusing on a sample of rare disease patient organisations as representative of contemporary health activism, this study investigates the role of digital communication in the development of (1) bottom-up sharing and co-production of health knowledge, (2) health public engagement dynamics and (3) health information pathways. Findings show that digital media affordances for patient organisations go beyond the provision of social support for patient communities; they ease one-way, two-way and crowdsourced processes of health knowledge sharing, exchange and co-production, provide personalised routes to health public engagement and bolster the emergence of varied pathways to health information where experiential knowledge and medical authority are equally valued. These forms of organisationally enabled connective action can help the surfacing of personal narratives that strengthen patient communities, the bottom-up production of health knowledge relevant to a wider public and the development of an informational and eventually cultural context that eases patients' political action.
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Social media allow patient organisations to 'crowdsource' experiential knowledge and to challenge existing medical authority whilst blurring the boundaries between the medical expert and the lay patient.
“Vicari and Cappai (2016) show how social media allow patient organisations to 'crowdsource' experiential knowledge and to challenge existing medical authority whilst blurring the boundaries between the medical expert and the lay patient (Adams and de Bont, 2007;Barrett et al., 2016;Griffiths et al., 2012).”
From The Cultivation of Digital Health Citizenship (2021) · cites this paper as Vicari and Cappai, 2016
The Discussion and conclusion (page unavailable) says social-media mechanisms enable crowdsourced patient narratives and informational pathways in which experiential and scientific knowledge are equally valued. The Analysis says those pathways often privilege crowdsourced exchange over traditional scientific sources. The paper discusses challenges to medical authority and blurred lay–professional boundaries in its Health activism background, but does not show that social-media use itself produces those outcomes. (LLM, conf=0.82)
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van, J. (2018) · Oxford University Press eBooks · doi:10.1093/oso/9780190889760.003.0001
Rezaeiaghdam, A. (2022) · Queensland University of Technology · doi:10.5204/thesis.eprints.231220
Prosocial Health Communication
Stehr, P. (2022) · The International Encyclopedia of Health Communication · doi:10.1002/9781119678816.iehc0931
"YOU CAN'T SEE IT BUT IT'S A MATTER OF LIFE AND DEATH". OF PLATFORMS, POWER, AND THE INVISIBLE
Vicari, S. (2023) · AoIR Selected Papers of Internet Research · doi:10.5210/spir.v2022i0.13102
Self-citationAndina Díaz, E., Arias Navarro, N., Benítez Andrades, J. A., Marqués Sánchez, P., Ovalle Perandones, M. A., & Pinto Carral, A. (2023) · doi:10.18002/arssalud
Breaking Taboos: Arab Breast Cancer Activism in Art and Popular Culture
Hamdar, A. (2024) · Journal of Medical Humanities · doi:10.1007/s10912-024-09886-6
The Issue Publics' De-Pathologization Strategies on Social Media
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van Dijck, J., Poell, T., & de Waal, M. (2018) · Oxford University Press eBooks · doi:10.1093/oso/9780190889760.002.0005
van Dijck, J., Poell, T., & de Waal, M. (2018) · Oxford University Press eBooks · doi:10.1093/oso/9780190889760.002.0007
van Dijck, J., Poell, T., & de Waal, M. (2018) · Oxford University Press eBooks · doi:10.1093/oso/9780190889760.002.0003
Blum, L. M., & Surkan, K. J. (2025) · Gender & Society · doi:10.1177/08912432251374235
Martínez-Martínez, M., García-Rodríguez, I., Bermejo‐Martínez, D., & Marqués‐Sánchez, P. (2025) · Applied Sciences · doi:10.3390/app151910359 · Cited by 2 · see citing works
The Coproduction of Medical Knowledge
Moodie, M. C. (2025) · Annual Review of Anthropology · doi:10.1146/annurev-anthro-071423-040224
The role of congruency in patient-doctor interactions: Insights from rare cancer consultations
Sanctorum, K. P., & Jacobs, A. (2025) · Patient Education and Counseling · doi:10.1016/j.pec.2025.109433
Walsh, J., Dwumfour, C., Cave, J. A. K., & Griffiths, F. (2022) · Figshare · doi:10.6084/m9.figshare.19766112
Exploring Patient Organization Involvement in Stem Cell Research: Insights from the Lifeworld
Lopes, E., Ankeny, R. A., Santos, D., Hu, M., Whitton, T., Ivanov, M., Leach, J., Nicol, D., & Wells, C. A. (2026) · Journal of Bioethical Inquiry · doi:10.1007/s11673-025-10516-6
Buesa, C. B. (2026) · Teknokultura Revista de Cultura Digital y Movimientos Sociales · doi:10.5209/tekn.104461
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- Authors
- Vicari, S., & Cappai, F.
- Affiliations
- University of Leicester (GB)
- Corresponding author
- Vicari, Stefania
- ORCID
- Vicari, Stefania
- Venue
- Information, Communication & Society
- Publisher
- Informa UK Limited
- Published
- 2016-03-21
- Volume
- 19
- Issue
- 11
- Pages
- 1653-1671
- ISSN
- 1369-118X (ISSN-L)
- 1468-4462
- PMC
- PMC4959124
- OpenAlex
- W2306940248
- Cited by
- 86
- References
- 55
- Citations by year
- 2026: 3 · 2025: 11 · 2024: 7 · 2023: 5 · 2022: 11 · 2021: 15 · 2020: 4 · 2019: 8 · 2018: 16 · 2017: 6
- FWCI
- 18.63
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Information Communication & Society (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Figshare (submittedVersion, cc-by)
- Leicester Research Archive (University of Leicester) (submittedVersion, public-domain)
- Funders
- Wellcome Trust (101785/Z/13/Z)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Communication › Social Media and Politics
- Social Sciences › Health › Social Media in Health Education
- Keywords
- health activism, connective action, digital media, patient communities, crowdsourcing, experiential knowledge, health discourse
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