The Digital Health and Rights Project (DHRP) - an international consortium hosted by the University of Warwick - has received £5.3 million to study the future of human rights using an innovative approach which puts communities at the centre of research participation.
The consortium includes human rights lawyers, health advocates, youth advocates and community-led networks in seven countries, plus social scientists including academics at the University of Warwick.
Funded by Fondation Botnar, the DHRP will build on a previous study by the consortium which investigated how the digital transformation in health is shaping human rights for young people in low and middle-income countries.
Using the findings from the previous study, the Digital Health and Rights Project will conduct research over the next three years in four countries (Colombia, Ghana, Kenya and Vietnam) to gain a deeper understanding of how diverse young adults, including communities living with and affected by HIV, experience both empowerment and discrimination online, and what kind of rights-based digital governance they want for the future.
The research uses a transnational participatory action research approach, in which young adults and community members participate in the study as researchers, advocates and decision-makers at all levels of the project. The project will offer digital literacy and empowerment training to the study participants, and create an online digital literacy hub with courses and training materials for public use. Through sharing evidence gathered in the study, the consortium will influence policies and decisions at national levels, and at UNAIDS, World Health Organisation, the Global Fund to Fight AIDS, TB and Malaria, the UN Human Rights Council, and other leading institutions.
Sara (Meg) Davis, Professor of Digital Health and Rights in the Centre of Interdisciplinary Methodologies at the University of Warwick said: “The COVID-19 pandemic led to a rapid growth of technological solutions for health services around the world: from AI-driven remote diagnosis of COVID-19; to remote medical consultation in place of in-person appointments; to the deployment of rapidly improvised mobile phone apps that screened for vaccines and monitored movements of those under quarantine.
While these brought some benefits, many countries also abandoned human rights protections as sweeping government and private sector surveillance expanded. As the world begins to reflect on what we learned during COVID-19, our project asks what kind of digital future we want, locally and globally.
“Government officials have struggled to keep up with, understand, and effectively govern these new tools, including the data they consume and produce, and the algorithms that drive them. There are huge inequities in the digital transformation as a result.
“Communities affected the most by these inequities are largely left out of decision-making and research for digital strategies at national and global levels,” added Georgina Caswell, Head of Programmes at Global Network of People Living with HIV (GNP+).
“Our work puts these communities at the centre of research and advocacy as together, we aim to influence a responsible digital governance in health, and promote human rights in the digital age more broadly.”
“Learning in collaboration with communities in different countries affected by HIV about how they are using digital tools to navigate their health will allow us to think creatively and critically about the future of human rights in the digital age,” added Prof Davis.
The Digital Health and Rights Project informed a report for the UN Special Rapporteur on the Right to Health, due to be discussed at a UN Human Rights Council Side Event on Digital Innovation, New Technologies and the Right to Health on Friday 23 June.
The Digital Health and Right Project consortium includes: the University of Warwick, the Global Network of People Living with HIV (GNP+) and their member networks in Ghana and Vietnam, Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), Privacy International, Restless Development, STOPAIDS, and Universidad de los Andes (Colombia).
This article was first published on 23 June by University of Warwick.