July 27, 2023
On July 12, 2023, the O’Neill-Lancet Commission on Racism, Structural Discrimination and Global Health hosted a virtual conversation, “Artificial Intelligence, Technology and Health: Examining the Impacts of Inequity in Access, Racism and Structural Discrimination.” The Commission was joined by an engaging group of panelists, including Commission Co-Chair and United Nations Special Rapporteur on the Right to Health Dr. Tlaleng Mofokeng. Other panelists included:
- Paula Akugizibwe, Digital Health Consultant, FIND
- Dr. Priya Balasubramaniam, Director, Centre for Sustainable Health Innovation; Senior Public Health Scientist, Public Health Foundation of India
- Dr. Geoffrey Siwo, Research Assistant Professor, University of Michigan
In her opening remarks, Mofokeng framed the urgency of incorporating human rights into the use of digital technologies as they are increasingly used in health systems for the delivery of care — impacting equitable enjoyment of the right to health. Digital technologies have filled gaps in health care systems, eased bureaucracy, given people access to care who might not have had it otherwise, and facilitated more effective emergency responses through measures like surveillance. She cautioned against neglecting investments in addressing underlying determinants of health, or in serving populations in rural areas, migrant populations, asylum seekers, LGBTQ+ persons, and indigenous persons.
The Challenges in the Digital Health Space
Paula Akuzigibwe stated that, as digital technologies become increasingly prevalent in the health sector, they have the potential to replicate existing biases and compound inequalities — for example, through the digital divide, or when some populations have more access to digital technologies than others. She warned that if these underlying imbalances in access are not addressed before technologies are integrated into health systems, then health services that utilize technologies will not be accessible to all. She also noted the racial inequity that underlies the development and eventual use of some health technologies, citing computer-assisted diagnoses which tend to be more accurate for middle-aged white men compared with other racial and gender groups. Akuzigibwe additionally highlighted how challenges with access to infrastructure in low- and middle-income countries limit the effectiveness of digital technologies, and thus enjoyment of the benefits they can offer.
The Impact of the North-South Divide in Digital Health
Geoffrey Siwo noted that examples of inequity between the Global North and Global South abound in data gathering, data sharing, privacy and security protections, and the enjoyment of the advancements in science and technology. Ethnically diverse populations are largely underrepresented in public databases containing genetic data. Since genetic data is essential for inferring disease risks, the diagnostics, drugs, and digital health solutions being developed are tailored mainly for white populations. By focusing on specific population groups and excluding others, the world is unable to develop health solutions that are more diverse, and it is difficult to ascertain what data we are missing. Even where data is gathered from African populations, the research is controlled by researchers from the Global North who decide what questions to ask, which data to gather, and often do not publicly publish their findings and results. Consequently, African populations often do not enjoy the benefits of their involvement in data gathering processes or resultant research.
A recurring theme in the discussion was the impact of lack of community engagement and integration in the digital health solutions design process, and how it leads to inequities in access and outcomes.
The Impact of Lack of Community Engagement and Integration in the Design Process
Important questions to consider are, “Who is designing these technologies? And for whom?” The current global digital market is worth $233 billion, and, in India alone, there are 7,194 digital health startups. Priya Balasubramaniam argued that, health inequities will persist unless there is an intentional approach towards unpacking the identities of the creators and designers of these digital health products, the stakeholders who are involved in the process, and the consumers for whom these solutions are being designed. For as long as the communities who are the target end-users of these technologies are not consulted, and integrated into the design process, the digital divide will persist. She shared the example of an Indian company, Practo, that was recently sued for building an application that was inaccessible for people with disabilities. The complainant, a paid subscriber, argued that the app was not intuitive for use by a person with disabilities — an issue that could have been avoided if there was wider consultation.
Siwo added that access to mobile devices, internet, inter alia, is required for a large number of digital health tools, meaning that for communities where this infrastructure is lacking, they are automatically disqualified from accessing tools which may have been designed for their specific use. Engaging communities will allow creators to figure out, early on, whether their proposed solution will be accessible and functional for the community for which they are designed. Beyond engaging a diverse group of stakeholders, maintaining diversity in the teams involved is essential in developing these digital tools across expertise, gender, and race.
“Start from the Problem and Not from the Product.”
Akuzigibwe discussed the importance of shifting development of solutions to start from the problem, rather than the product. She shared the example of a group that is currently embodying this model and building inclusive technology in Guinea Conakry — Clinic+O. The organization is working in a context of limited physical structures, but has come up with a great community-centered and -led digital product by engaging community leaders, such as the Imams, and women’s group leaders in their processes from conceptualization, to design, to the final product.
Addressing the Digital Divide, Achieving Digital Justice
The first step in addressing the digital divide is to create an inclusive dialogue by engaging a diverse set of stakeholders and addressing digital conversations through citizen groups that have so far been excluded. At the global level, Balasubramaniam noted that many countries are now looking at digital health diplomacy as a way to interact with each other through interoperable architecture and platforms. Researchers must elevate design justice and equity to the top of the agenda in digital health.
Additionally, transparency is important. There must be recognition that the end-users of products are really the experts in the digital health space, because the success of a product depends on their individual choice to use it. Akugizibwe explained that information is often withheld from end-users under the guise of technicality and complexity; moving forward, creators must be able to explain in simple terms, to the communities that they seek to serve, how the technology they are presenting will work.
Privacy and Accountability Are Critical
Finally, Siwo shared that it is imperative to design structures and systems of accountability governance, which are established independent of individual commercial entities. He explained that with new digital technologies comes an increased responsibility for data protection and security, given that big corporations now have access to large swathes of data and information from their users which they, in turn, use for various purposes, including improving marketing and advertising.
Generally, the panelists agreed that, in order to fully understand the many ways that technology impacts health and human rights, it must be considered as a social, commercial, and political determinant of health.