For many people, a mobile phone is the first thing we reach for to check medical symptoms, find a clinic, or look up medication side effects. But where does this intimate data go after we type it into the phone? Does it go to a foreign company, a government agency, or some third party? Do we really know what autonomy we give up when we “accept cookies”?
In fact, most of us are not too sure, even as we become increasingly dependent on phones – and in fact, even when we think we have opted out of data sharing, we may be mistaken. The Covid-19 pandemic has accelerated the digital transformation, generating billions from personal data, but has also left most people in the dark about how our data is used. We are transparent to tech companies, but they are not transparent to us. To counter these and other epistemic inequalities in the digital transformation, we need new models of knowledge production that crack open this closed system, educating and empowering the public to advocate for rights-based digital governance.
What Bhakuni and Abimbola critique as epistemic injustice in academic global health is mirrored in global digital health. The profits to be gained through surveillance capitalism have created a financial interest for tech companies in high-income countries to mine health data worldwide, leading to extractive forms of data colonialism. The result can be digital tools that widen existing forms of inequality, and expose women and marginalised groups to discrimination and more.
How can this power imbalance be shifted? In the HIV response, there is a good precedent: community-led networks of people living with and affected by HIV have studied arcane technical knowledge, and translated (or vernacularised) human rights law, medicine and pharmaceutical jargon into user-friendly language. Using this knowledge they mobilize marginalized groups, cracking open global governance systems to demand a voice in decision-making. This role is one that long-standing community-led networks that have deep roots and public trust can also play in the digital transformation.
The Digital Health and Rights Project was established in 2019 as one of the first participatory action research studies in global health. In this consortium, global networks of people living with HIV, human rights lawyers and AIDS advocates collaborate with anthropologists to design and implement a multi-country study in Bangladesh, Colombia, Ghana, Kenya and Vietnam. The project is creating a transnational cadre of junior researchers at universities, in civil society and community-led networks, through cross-learning and collaboration. The resulting policy recommendations will be used in youth mobilisation and shared via permanent seats civil society networks have in governance of Unitaid, the ACT-Accelerator, the Global Fund, and UNAIDS.
Experts have expressed concerns over the lack of digital trust during the Covid-19 pandemic, but lack of trust is a natural result of weak transparency and accountability. The digital transformation could weaken 20th-century human rights standards, but it doesn’t have to, it is also an opportunity to reassert their vitality and relevance, creating new forms of expertise and solidarity.