Co-Creating Digital Justice: Reflections from the PLHIV Leadership Summit in Bangkok

I was excited to be in Bangkok for the PLHIV Leadership Summit for the Asia-Pacific region. This summit served as a regional follow-up to the successful Global PLHIV Leadership Summit organized by The Global Network of People Living with HIV (GNP+) in Kenya in April 2025.

As part of the summit, I also had the opportunity to organize a session to discuss the digital health rights project alongside Tram Phang from Vietnam Network of People living with HIV (VNP+). I believe this session created a vibrant space for community leaders to reflect on how digital technologies are reshaping the health, autonomy, and rights of people living with HIV. Opening with the question, “When was the last time your digital life helped or harmed your health?”, the session grounded participants in lived experience and emphasized why digital justice must be shaped by PLHIV themselves. I was able to present the overview of the DHRP as a project and Trang provided a brief introduction to the Digital Health Rights Project (DHRP) findings from Vietnam and highlighted the importance of PLHIV-led research and community advisory teams in ensuring that digital transformations do not deepen inequality or undermine trust.

Following with the presentations, the participants of the summit were divided into different groups which consisted ofPLHIV members across different PLHIV networks across Asia pacific as well as members from the region office of UNAIDS.

In the thematic group discussions, participants shared rich and often personal reflections. On digital access and inclusion, communities described how older people, migrants, low-income households, minority groups, and indigenous people are frequently left behind. Barriers such as high internet costs, limited electricity, transportation issues, misinformation, and low digital literacy were widely reported. Participants stressed the need for diverse language options especially in digital platforms, stronger digital literacy programs, cybersecurity education, access to basic devices, and capacity-building for community leaders who support information flow at the grassroots level.

Discussions on privacy, consent, and data justice revealed deep concerns around the misuse of health information. Participants emphasized that consent must be informed, voluntary, and revocable, and that documents should avoid legal jargon. They stressed the need for visual consent models for people who cannot write, transparent data governance systems, community access to their own data, and strong penalties for data misuse. Many shared that breaches of confidentiality lead to fear, clinic avoidance, and loss of trust, especially in contexts where stigma, discrimination, and even violence are real risks.

Groups addressing surveillance and digital safety spoke about the increasing threats of online harassment, outing, blackmail, and censorship. These harms are intensified for women, transgender persons, key populations, and communities already facing criminalization. Participants called for safer digital environments, stronger reporting mechanisms, and community-led monitoring of emerging digital risks. Meanwhile, discussions on digital advocacy and empowerment highlighted how social media, blogs, and online campaigns help PLHIV counter misinformation, influence public opinion, and share real stories that humanize HIV. Digital literacy, storytelling skills, content creation, inclusive language, and partnerships with ethical organizations were identified as key to sustaining impactful online advocacy.

Finally, groups reflected on trust and accountability in digital health systems, noting that without transparency, community monitoring, and PLHIV-led oversight, digital tools can reinforce stigma rather than reduce it. Participants envisioned a future where regional movements collaborate on digital rights, activism is grounded in care and wellbeing, and PLHIV shape the digital landscape through shared demands and leadership. The session closed with a reminder that PLHIV are not respondents but co-authors who are capable of building, rebuilding, and strengthening collective power in a rapidly changing digital world.