Towards digital justice: participatory action research in global digital health

Big Tech in high-income countries (HIC) mines health data in low-income and middle-income countries (LMIC), creating new forms of extractive data colonialism.2 The drive for more precise, granular health data risks exposing women and marginalised groups to discrimination and other harms.3 In the Global South, structural and systemic factors, such as racism, gender inequality, socioeconomic inequalities and lack of the underlying social determinants of health, affect access to smartphones, mobile data and internet, and thus health services and information. The Global Fund is unique in including three permanent seats and votes on its Board for diverse civil society delegations. [...]the study is a natural outgrowth of this public participation in high-level health governance. Given emerging concerns about the risks posed by increased digital surveillance for marginalised and criminalised communities, three Global Fund Board delegates and an anthropologist together identified a need for more empirical data on how the digital transformation is actually experienced by communities.7 Together, we established the Digital Health and Rights Project Consortium, including the Global Network of People Living with HIV (GNP+) and its member networks, the Vietnam Network of People Living with HIV, and the National Association of People Living with HIV in Ghana; the Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN) and STOPAIDS in the UK; as well as social scientists at the Graduate Institute Geneva and the University of Oslo. After obtaining ethical approval in each country and undergoing ethics and methods training, researchers conduct digital ethnography in online spaces (such as social media groups), hold focus group discussions with young adults between 50 and 75 years old in each country, and interview national experts.11 12 As many study participants are living with HIV or have other sensitivities, the researchers use strong privacy and data security protections.