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Call for papers: Digital Spaces and DIY Health: Infrastructures, Activism, and Networks

We seek abstracts for a workshop at Queen Mary University of London on September 12 2025 exploring digital health communities, informal care pathways, and treatment activism.

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Digital spaces provide meeting places for people who are experiencing symptoms, managing illnesses, and/or seeking medication through informal routes. Literature in this area has often concentrated on digital communities that emerge around contested illnesses because people experiencing a contested illness are likely to have been turned away by a doctor and resort to seeking information and support online. However, digital health communities also emerge around a wide variety of groups whose medical needs are stigmatised, whether that’s because of their sexuality, gender identity, or controversy around the treatment/medication they seek. These types of communities self-organise in digital spaces where they share experiences, provide support, develop forms of expertise, advise each other on preferred medical providers, strategise for greater visibility, and facilitate each other’s access to pharmaceuticals that they cannot or do not want to obtain through formal channels.

We seek papers that address these types of digital health communities, across the spectrum of medical needs that they address and political/geographical contexts where they reach. We especially seek papers that contribute to methodological conversations around researching digital health platforms which are fast evolving and raise thorny questions about the ethics of research in online spaces.

Potential topics may include but are not limited to:

  • Online forums and social media as spaces for informal health support
  • Informal pharmaceutical networks and online buyers' clubs for HIV prevention (e.g., PrEP, PEP, DoxyPEP)
  • Self-managed reproductive health (fertility, contraception, abortion)
  • Trans health care online spaces, especially those for DIY trans care
  • Digital platforms supporting communities with contested or chronic illnesses (e.g., long COVID, endometriosis, chronic Lyme)
  • Biohacking interventions (e.g. DIY insulin)
  • Activism and political mobilisation by digital health communities
  • Methodological interventions for studying digital DIY health
  • Theoretical contributions around self-managed health or informal care networks

We seek contributions from scholars across disciplines (and at any career stage), but this call might be most relevant to people in geography, sociology, anthropology, public health, STS, and gender studies. We also welcome papers from practitioners/ activists/ non-academics. We aim to submit a journal special issue from the papers following the workshop.

If you’d like to participate, please submit your abstract (max 300 words) and a short biography to s.calkin@qmul.ac.uk and a.martinezlacabe@qmul.ac.uk by Friday June 13, 2025.

 

 

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