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Accepted Paper:
Paper short abstract:
Networks provide opportunities to belong, volunteer and speak in public. This qualitative study demonstrates how drug user networks use technology as collective informational capabilities to advocate for harm reduction care for the individual marginalised person who uses drugs.
Paper long abstract:
Background: National HIV programs deal with consequences of the illicit drug crisis by providing harm reduction services and social support to persons who use drugs (PWUD). Reaching individuals within their drug use environment is challenging; programs often rely on collectives to generate information to deliver health services and inform reporting and policy. These collectives also encounter information concerning unaddressed issues, such as deaths due to overdoses in the community, harm reduction clinics as spaces of stigma, discrimination and violence towards PWUDs; also for women who use drugs. In this paper, I use the concept of informational capabilities, built on Sen’s Capabilities Approach, to explore how a network of persons who use drugs apply information and technology as collective capabilities to advocate for and facilitate improved harm reduction care for the individual user.
Methods: This qualitative study is set in a Northern and Northeastern state of India. 17 interviews and 4 focus group discussions were conducted with PWUDs, and harm reduction staff, managers and experts. Data were collated and analysed using NVivo. Essential ethical considerations made are detailed in the paper.
Results: Three cases demonstrate how the drug user network, an established entity in the state, facilitates harm reduction care for the individual PWUD. The first case demonstrates how real-time responses in smartphones create an information relay through network chains, resulting in the timely administration of the antidote nalaxone and a life saved within the PWUD’s natural environment in the community. The second case demonstrates how PWUDs use WhatsApp messaging channels to share concerns of daily care practice - clinics closed during working hours, stock ruptures or incidents of discrimination. This informational feedback loop with officials at higher levels on a transparent platform, overcomes gatekeeping barriers, replaces oral conversations, and provides evidence for accountability, protocol and policy change for the good of the individual PWUD. The third case demonstrates how women who use drugs gain from online platforms and informational components of hashtags, infographics and community blogs, to become part of an international information network creating movements, demanding health rights, and advocating for gender equity.
Conclusion: Technology can be used as a collective capability to advocate for enhanced care for the individual, through opportunities to belong, volunteer and speak in public. Where hierarchy and judgment prevent the marginalised’s voice to be heard, the collective makes this possible.
Collective, informational capabilities, marginalised, harm reduction, India are some of the keywords.
Solidarity and partnership as collective capabilities: three grassroot experiments from India