Life in the digital age is full of contradictions — one minute women’s rights activists on TikTok are flooding an abortion reporting website with fake reports; the next, seized biometric data is placing millions at risk in Afghanistan. While new tools and platforms allow us to chat from our living rooms with friends in other countries, we never know who is listening -- and our digital footprints are collected seemingly everywhere: from work offices to coffee shops and spaces in between. These contradictions are even greater in health; digital health interventions (like mobile apps, health management information systems, telemedicine, and more) have the power to increase access to and improve quality of health services in low and middle-income countries, but also pose significant human rights risks, especially for youth and marginalized groups. Much depends on what questions are asked, what data is gathered, who has access to it, and how they use it.
The Digital Health and Rights: Participatory Action Research Project just shared two new working papers that explore these contradictions. The papers will be discussed on September 30th on Clubhouse (“Digital Health and Human Rights” hosted by Tyler Crowly and the Tech News club, 11am CET) and a Twitter chat (led by KELIN and GNP+ with hashtag #DigitalHealthRights, 15:00 – 16:00 CET).
The Digital Health and Rights Advisory Group (DRAG) began as a consortium of social science researchers, human rights lawyers, civil society activists, and community leaders from the Global Network of People Living with HIV (GNP+), Kenya Ethical & Legal Issues Network on HIV & AIDS (KELIN), STOPAIDS, and the Centre for Sustainable Healthcare Education at University of Oslo, led by Dr. Sara (Meg) Davis (Global Health Centre, Graduate Institute, Geneva) to address these opportunities and risks.
The resulting project, from 2021-22, uses a unique participatory action research approach, including interviews with young adults in three focus countries (Ghana, Vietnam, and Kenya) to understand how they access health information and services, and what they see as risks and opportunities. They benefit from insights and advice from a Project Advisory Committee with international scholars, experts, and youth activists from GIZ, the Global Fund, I-DAIR, UNAIDS, UNDP, UNFPA, WHO, the private sector, national governments, and civil society; as well as the UN Special Rapporteur on the Right to Physical and Mental Health, Dr. Tlaleng Mofokeng.
Together, the researchers, activists, advisors, and participants will identify concrete actions to take to empower young adults and communities to demand digital health governance that truly meets their needs. The partners also aim to counter inequalities in knowledge production through collaborating in the research, reflecting on the evidence while engaging in action.
The Digital Health and Rights project just launched two working papers that use contextual information and analysis to inform planning and future field research for the project.
“Digital Health and Rights: Context in Three Countries — Ghana, Vietnam, Kenya”, researched and written by Nomtika Mjwana (GNP+), Tara Imalingat (KELIN), Irene Kpodo (NAP+ Ghana), and Trang Pham paints a picture of the vastly different cultural and political landscapes in each country, their legal and policy frameworks, and trends in health and digital transformation. The paper underscores key risks and concerns, from gender inequalities, data privacy issues, and a lack of digital literacy, to challenges in reaching young people living with HIV and criminalized key populations vulnerable to HIV (men who have sex with men, sex workers, transgender people, and people who use drugs). Most importantly, the paper highlights a major commonality: while digital governance in each country is weak, “all countries are undergoing rapid digital transformation, and offer real possibilities for constructive engagement in policy and implementation moving forward”.
More broadly, “Digital Health Rights: Initial Analysis” – by Sara (Meg) Davis, Nerima Were, and Tara Imalingat – develops an overall human rights analysis of inequalities in digital health, inspired by thinking from Dr. Tlaleng on intersectionality, gender inequality, and decolonizing global health. By examining how diverse and intersecting forms of inequality lead to direct and indirect discrimination that affect the right to health, chiefly for young women and marginalized groups, the paper draws attention to specific areas of work needed to promote and protect human rights, particularly within regional mechanisms, national jurisprudence, and UN guidance and ethical principles. It also raises the question of how the right to public participation in development cooperation may be reshaped in the digital age. Ultimately, the authors find that “to maximize the benefits and mitigate the risks of harm, sound digital health governance should be grounded in existing human rights norms, but also be continually informed by the robust and meaningful participation by affected communities in the decisions and designs that will shape their lives”.
Using this analysis, the research team at the Graduate Institute, University of Oslo, GNP+, KELIN, NAP+ and VNP+ have begun to collaborate on digital ethnography, conducting participant observation of discussions among young adults in online spaces to identify cross-cutting themes. This will inform focus group discussions and key informant interviews in Ghana, Kenya, and Vietnam.
These papers are the beginning of a new, exciting (academic) year ahead for the Digital Health and Rights Project. Two new project partners, BRAC University and Universidad de los Andes join the project with support from the Open Society University Network, and the focus countries will expand to include Bangladesh and Colombia. The consortium is also exploring exciting new partnerships with the UN.
Contradictions are at the heart of the digital transformation. Will digital health interventions be a force for good, empowering youth, improving healthcare systems and promoting good health and wellbeing? Or will they further exacerbate inequalities and harm marginalized groups? In the midst of this uncertainty, one thing is clear: uncovering and addressing the multiple layers of inequalities embedded in digital health technologies, data, and algorithms is crucial to ensuring that rights for women and marginalized groups are upheld. By accomplishing the objectives of the Digital Health and Rights project — which include developing global health policy recommendations grounded in human rights principles, legal and ethnographic research, and in the lived experience of affected communities, as well as empowering transnational youth activist networks with the knowledge to raise recommendations in health policy in national and global health governance — digital health technologies can benefit everyone.
Want to receive news and event invitations related to digital health and human rights? Subscribe to our mailing list
