Digital Health and Rights: Reflections for Action

Introduction :

While new technologies and artificial intelligence (AI) could transform weak health systems in low-resource settings, human rights experts have highlighted real threats to privacy, equality, and autonomy. These risks are greater for youth and for marginalised, criminalised groups, such as people living with HIV, migrants, women and girls, and key populations vulnerable to HIV and tuberculosis – who rarely have input into the policy decisions that shape what kinds of data are gathered about them, by whom, and how that data is used or managed.

The Digital Health and Rights Project is led by a consortium of anthropologists, human rights lawyers, and global networks of people living with HIV and civil society activists who are working together in a participatory action research approach that combines ethnographic research, reflection, analysis and policy engagement to:

  • Use ethnographic field research to develop case studies of mobile apps and social media used to address HIV, TB, COVID-19 and sexual and reproductive health in Kenya, Ghana, Viet Nam, Bangladesh and Colombia.
  • Assess what legal and policy frameworks are used to implement these tools, how they are governed, how human rights concerns are addressed, and how integrated youth and civil society are in decision-making for these tools;
  • Develop a set of global health policy recommendations grounded in human rights principles and legal and ethnographic research, and in the lived experience of affected communities; and
  • Empower transnational youth activist networks with the knowledge, networks and opportunities to raise the recommendations in health policy in national and global health governance.

The collaborative study is gathering data in 2021-22, working collaboratively through online platforms and transnational site visits, to build expertise and reflect on these learnings while mentoring and supporting junior researchers to form a community of practice. The study is supported by Fondation Botnar and Open Society University Network (OSUN), and while the 30+ strong consortium has never been able to meet in person thanks to Covid-19 restrictions in one or more countries in the consortium, we have formed a strong bond and are producing rich data. 

In February 2022, we shared early findings from Kenya in a webinar co-sponsored by UNDP, the Graduate Institute Global Health Centre, STOPAIDS, Y+ Global (the global network of young people living with HIV), KELIN, Fondation Botnar and OSUN. Ambassador Stephanie Seydoux, France’s ambassador for Global Health, as well as Dr. Tlaleng Mofokeng, the UN Special Rapporteur on the Right to Health, both participated in the webinar (details here: Further dissemination events are planned for 2022 while data-gathering proceeds in the other countries.

While we have been able to work together closely using digital platforms such as Zoom and Signal, the consortium has never met in person, nor have we had the opportunity to meet with our distinguished advisory group (which includes Dr. Tlaleng and senior officials from UNAIDS, UNDP, the Global Fund, the government of Ghana, scholars and youth activists). As data-gathering will be finished by the end of 2021, we would benefit hugely from the opportunity to meet in person at Brocher’s beautiful facility, to reflect on all the findings, engage in comparative analysis, and reflect on the recommendations for action across our consortium and partners. 

Above all, this would benefit the young researchers in the study from national networks of people living with HIV and national human rights NGOs in Kenya, Ghana and Vietnam, many of whom have never participated in transnational research before, but who have done extraordinary and ground-breaking research work; and who can learn from the more senior members of the team, as well as forming important connections with academic, UN and INGO partners.

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