Digital health and human rights of young adults in Ghana, Kenya and Vietnam: a qualitative participatory action research study.

INTRODUCTION: Digital health offers the potential to strengthen health systems in low- and middle-income countries. However, experts have warned about threats to human rights. METHODS: We used qualitative methods to investigate how young adults in Ghana, Kenya and Vietnam use their mobile phones to access online health information and peer support, and what they see as the effect on their human rights. We applied a transnational participatory action research approach. Global and national networks of people living with HIV, AIDS activists, young adults and human rights lawyers participated in study design, desk review, digital ethnography, focus group discussions, key informant interviews and qualitative analysis. RESULTS: We interviewed 174 young adults ages 18-30 in 24 focus groups in 7 cities in Ghana, Kenya and Vietnam, and held 36 key informant interviews with national and international stakeholders. Young adults reported predominantly using Google, social media and social chat groups for health information. They emphasised reliance on trusted peer networks, and the role of social media health champions. However, gender inequalities, class, education and geography create barriers to online access. Young adults also disclosed harms linked to seeking health information online. Some described anxiety about phone dependence and risk of surveillance. They called for a greater voice in digital governance. CONCLUSION: National health officials should invest in young adults' digital empowerment, and engage them in policy to address benefits and risks of digital health. Governments should cooperate to demand regulation of social media and web platforms to uphold the right to health.

Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement.

INTRODUCTION: Despite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal. DISCUSSION: In the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner. CONCLUSIONS: There is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

Leadership and Innovation-Listening to and Learning From Young People in Burundi.

This commentary describes young people's leadership from the perspective of a youth-led organization in the Link Up project in Burundi, Réseau National des Jeunes vivant avec le VIH. It describes processes that enable young people to guide, influence, deliver, and improve health service provision; the challenges faced by Réseau National des Jeunes vivant avec le VIH and how they are addressing these challenges.