Digital technologies (such as mobile apps, telemedicine, wearable devices, patient health information systems, and more), some enabled by artificial intelligence (AI), offer the potential to leapfrog over barriers to fulfilling Sustainable Development Goals (SDGs), including goals for health. Global health experts have proposed to consider “digital determinants” as drivers of health, as digital technologies both offer new ways for health agencies to reach people with health information and services, but also create new barriers for those without digital skills, wifi or devices.
If digital determinants are drivers of health, who is behind the wheel? Often, the private sector, given that devices, software and airtime are all under private control. Commercial determinants (private sector activities) and political determinants (laws, policies, governance, elections) are thus increasingly drivers of digital health inequalities. And the financial inequalities are indeed staggering: During the Covid-19 pandemic, digital health boomed with over $29 billion in investment in the US alone in 2021; this later dropped to $2.7 billion in the first quarter of 2024, no small sum. Forbes now estimates Meta owner Mark Zuckerberg’s net worth is over $185 billion: roughly ten times the replenishment target of the largest international health financing mechanism, the Global Fund to Fight AIDS, TB and Malaria. Given this power and influence, Storeng, Fukuda-Parr, Mahajan and Venkatapuram contended in 2021 that “control of new digital health technologies is concentrated in a few privileged hands. This power also shapes prevailing ideas about which technologies are considered most necessary, and for what purpose.” And this in turn shapes who accesses digital health and how.
There is nothing predetermined in these inequalities, however. Looking at the history of the global HIV response, I argue that civil society mobilization, if it scales up, could become a future political determinant of health in the digital age.
As most readers are aware, AIDS advocacy has been one of the most disruptive political determinants of health in recent history. Thanks to coordinated activism, the US government went from AIDS denialism in the 1980s to becoming the largest international funder of the global HIV response in the 2000s. Communities of people living with HIV and their allies have translated scientific, technical and legal knowledge into context-friendly language, and mobilized marginalized groups within and among countries. Related research has highlighted how diverse inequalities (geopolitical, epistemic, gender and socioeconomic, to name a few), can intersect with punitive laws to deepen rights violations for and exclusion of marginalized and criminalized groups. Drawing on this learning, HIV activists have called for a voice in decision-making from district-level health committees to global governance boards, for communities living with and affected by HIV. This call has been endorsed by UN agencies and other global governance mechanisms.
Over thirty years, networks and community-based organizations living with and affected by HIV have thus been able to leverage power, influencing large pharmaceutical companies and global regulation of their prices. This process has not seamlessly translated into other domains; Sekalala and Rawson note failures to apply the same strategies in the Covid-19 pandemic, and Benton argues that HIV exceptionalism drew resources away from competing health priorities in Africa. What are the promise, and limitations, of lessons learned from the HIV response when it comes to addressing the digital determinants of health?
As PI of the Digital Health and Rights Project (DHRP), I have worked with social scientists, civil society activists and networks of PLHIV to explore these questions, through a participatory action research project in Bangladesh, Colombia, Ghana, Kenya and Vietnam. In participatory action research, the study population have a say in co-designing studies, participating as researchers, and using the findings in interventions or policy advocacy. Through DHRP, we have engaged over 250 young adults ages 18-30, including people living with HIV, gay men and other men who have sex with men (MSM), transgender people, and migrants. Young people and civil society groups also participated in consultations to inform a report by the UN Special Rapporteur on Health to the UN Human Rights Council on digital innovation, technologies and the right to health. In a second phase underway now, we plan to engage 300-400 more.
Many young people in our study are enthusiastic about the digital transformation of health, which has enabled them to swiftly get direct answers to frank questions on HIV and sexual and reproductive health online. Some have created online communities on Facebook accounts, YouTube channels and WhatsApp or Zalo, that use youth-friendly images and informal local idioms to exchange health-related knowledge and support.
We also, of course, heard troubling stories about life-endangering health misinformation and online and offline abuse. No one we spoke to had gotten help or redress; as sex workers or LGBTQ+, some of our study participants would risk arrest themselves if they approached the police. As one young bar hostess in Kenya told us in despair, abuse is “just something you have to deal with on your own.”
But the global HIV response has shown that while abuses are common, individuals do not have to just deal with them on our own; we can collaborate to change political determinants. The project sees HIV as a site from which to understand stigma, discrimination and criminalization in the digital age; but also to learn from and build on transnational movements for solidarity and advocacy, linking up through the Digital Rights and Inclusion Forum in Ghana, the Amnesty Youth Summit in Costa Rica, and RightsCon in Taiwan, connecting with peers and build a larger movement.
The movement is exciting, but it is a drop in the bucket compared to the massive investment in movement-building needed to compel change. If digital technologies are a determinant of health, what determines digital access, inclusion and security in the future? Big tech companies won’t change until a global movement demands it.
About the author
Professor Sara (Meg) Davis is the principal investigator of the Digital Health and Rights Project at the University of Warwick. She has over twenty years’ experience in global health and human rights as a scholar and practitioner, and is the author of two books, most recently The Uncounted: Politics of data in global health (Cambridge 2020).
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