16. Juli 2024

Digital health is increasingly promoting open health data. Although this open approach promises a number of benefits, it also leads to tensions with Indigenous data sovereignty movements led by Indigenous peoples around the world who are asserting control over the use of health data as a part of self-determination. Digital health has a role in improving access to services and delivering improved health outcomes for Indigenous communities.

There are ~476 million Indigenous people around the world, belonging to Indigenous communities spread across >90 countries with different languages, worldviews, relations to land, preferred terminology and most relevant: determinants of health¹. Many Indigenous groups share a commonality of inclusion under the United Nations Declaration of Rights of Indigenous people, but even within national contexts Indigenous peoples are far from a cultural or political monolith, with 574 different Indigenous Nations represented within the United States alone^2,3. Existing research overwhelmingly indicates that health outcomes are generally poorer in Indigenous communities⁴. These inequities are heightened in pandemics, as COVID-19 has once again demonstrated, with some Indigenous communities experiencing significantly higher infection and death rates and lower vaccination rates⁵. Digital health has a role in improving access to services and delivering improved health outcomes for Indigenous communities.

However, we argue that in order to be effective and ethical, it is essential that the field engages more with Indigenous peoples´ rights and interests. We discuss challenges and possible improvements for data acquisition, management, analysis, and integration as they pertain to the health of Indigenous communities around the world.

Read the full article here: https://rdcu.be/dNXsz

Cordes, A., Bak, M., Lyndon, M. et al. Competing interests: digital health and indigenous data sovereignty. npj Digit. Med. 7, 178 (2024).

https://doi.org/10.1038/s41746-024-01171-z