Session 10. New roles of online health communities: between lay expertise and fulfilling institutional gaps

Social media have been described as rapidly evolving, pervasive, and increasingly influencing people’s health behaviours (Chen Y. et al., 2021; Rueger et al., 2021) by making healthcare information access easier to lay people (e.g. Alanazi et al., 2022; Lea et al., 2019). In this context, online health communities (OHCs) seem to play a relevant role. OHCs are mainly peer-to-peer and Internet-based platforms that gather patients with similar interests and purposes (van der Eijk et al., 2013) or with similar health/disease conditions (Willis, 2016). Among their strengths, we may highlight two main issues: the connection of people that would not be able to meet otherwise (van der Eijk et al., 2013), also because of geographical distances (e.g., Rueger et al., 2021); and the delivery of both informational and emotional support, as overlapping experiences (Rubenstein, 2015). All this has been helping to promote a “novel form of health expertise” (Foster, 2016, p. 26) to the extent of an alternative authority to medical knowledge (Rubenstein, 2012). Lately, new issues have contributed to shaping OHCs mission: the fast development of healthcare devices (e.g. those for diabetes), which uncovered the inability of public institutions (e.g. doctors) to respond to patients’ needs and questions properly. In addition, during the recent pandemic, OHCs have gained importance as COVID care communities and as an alternative to traditional face-to-face doctor-patient encounters, which were limited, postponed or avoided.

This seems to have progressively altered the balance between emotional and informational support delivered by such platforms towards a stronger informational and behavioural component. Several questions then arise about the role of healthcare systems, patients’ self-help groups, and the interaction between them and OHCs also in terms of societal equity.
To unpack the new roles undertaken by OHCs along their process of development, we welcome theoretical and empirical papers which address the following issues and other related topics:

     i) new OHCs emerging during the pandemic and their role;

     ii) development of OHCs and new contributions to people’s expertise;

     iii) relationship between OHCs and healthcare systems and possible systemic gaps fulfilled by OHCs;

     iv) relationship between lay experts and medical experts, and the role of medical epistemic authority within         OHCs;

     v) OHCs and equity-inequality.

Alberto Ardissone is a holder of PhD in Labour Studies (University of Milan), currently a research fellow at the Department of Law - University of Macerata since 02/03/2020, where he teaches “sociology and social policies” and “sociology of welfare”. His research interests include sociology of health, doctor-patient relationship, medical professionalism, digital health and online health communities. So far, he has more than 60 publications, including monographs, articles in peer-reviewed journals and contributions to several collections.

Iwona Leonowicz-Bukała holds a PhD in Social sciences (University of Warsaw). Since 2008 she has been an assistant professor in media studies at the Faculty of Media and Social Communication, University of Information Technology and Management in Rzeszow (Poland), teaching writing, media and communication. Her recent research topics are social media in the context of empowerment of migrants and underprivileged groups, online health communities and gender in academia. She is an author and co-author of several dozen publications and a member of the international research team “COVID Gendered Academic Productivity”.

Monika Struck-Peregończyk holds PhD in Political sciences (University of Warsaw). She is currently an assistant professor at the Faculty of Media and Social Communication, University of Information Technology and Management in Rzeszow (Poland). Her research interests are centered around social policy, disability studies and online health communities. She is an author and co-author of nearly 30 publications.

Alessia Bertolazzi, Ph.D., is Associate professor of Sociology at the University of Macerata, where she is a lecturer in Sociology, Social research methods and Digital Ethnography. Her main research interests include sociology of health and illness, health communication, e-health technology adoption. She is an author of monographs, co-editor of a collected book, and wrote over 50 scientific articles and book chapters. Currently, she is the Task leader in the European Union Horizon 2020 Research and Innovation Programme “REINITIALISE” – Preserving fundamental rights in the use of digital technologies for e-health services. Since 2021, she has been Vice-President of the Italian Society of Sociology of Health.