Survival networks: lay expertise and digital knowledge production in the early years of HIV/AIDS
Year: 2025
Type: article
Abstract: The Open Forum of AIDS Info BBS was a pioneering digital platform that emerged during the early HIV/AIDS crisis to address critical gaps in reliable information amidst widespread institutional failures and pervasive stigma. The Open Forum fostered lay expertise and reshaped the boundaries between conventional and community-based knowledge production. Through qualitative analysis of 2,796 archived posts, we explore how people with HIV/AIDS, caregivers, healthcare providers, and activists collaboratively synthesised biomedical knowledge and personal experiences to inform treatment and survival strategies. The Forum facilitated participatory knowledge-making, blending anecdotal evidence with emerging scientific insights to challenge dominant modes of expertise and authority. Users negotiated credibility through rigorous debate, mutual validation, and dynamic interactions, creating a novel model of information exchange and expertise. Our findings reveal how digital platforms empowered marginalised communities to navigate uncertainty, critique institutional biases, and advocate for inclusive, actionable health practices. AIDS Info BBS prefigured now pervasive digital health information seeking and contemporary online health forums, demonstrating the enduring importance of user-driven, collaborative approaches. This study underscores the transformative and enduring impact of such spaces on the production, validation, and dissemination of health and medical knowledges amidst crisis.
Source: Internet Histories
Authors: Claire McDonald Indermaur, Marika Cifor
Institution: University of Washington
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: hybrid
OpenAlex ID: W4414344167