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Global Health Centre

Digital health and rights: Participatory action research project

Project Overview

Project Director: Sara (Meg) Davis

Project Owner: The Global Health Centre, Graduate Institute, Geneva

Project Partners: Global Network of People Living with HIV (GNP+), Kenya Ethical & Legal Issues Network on HIV & AIDS (KELIN), STOPAIDS, Centre for Sustainable Healthcare Education at University of Oslo

Project Funder: Fondation Botnar

Project Status: ongoing until December 2022

Key Words: digital health, artificial intelligence, global health, human rights

Project Description

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 Advisory Group is a consortium of anthropologists, human rights lawyers, and global networks of 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 used to address HIV, TB, COVID-19 and sexual and reproductive health in Kenya, Ghana and Viet Nam;
  • 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.

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Advisory Committee

Faced with the global COVID-19 pandemic, states increasingly apply new digital technologies in health systems. While these tools may gather intrusive personal data in ways that can have lasting impacts on young people, youth rarely have input into the policy decisions that shape what kinds of data are gathered about them, and how that data is used. In order to investigate the threats and opportunities digital health present for vulnerable populations, the Digital Health and Rights Project appointed an Advisory Committee that will support research activities by providing external advice, analysis and reflection. Committee members will also contribute to the policy recommendations produced by the project team and promote collaboration and networking between partners, institutions, and activists.

Advisory Committee