Abstract
The governance of health data is an essential component of territorial health care management and the design of public policy. Proper governance enables the strengthening of data management capacities throughout the data lifecycle. The examination of health data governance is of particular relevance in relation to Indigenous Peoples, where the concept of Indigenous data sovereignty has gained traction over the last 30 years. The paper presents a data management protocol developed and implemented for a research study by an Indigenous health insurance organization from Colombia, Anas Wayuu. We describe and analyze the rationale behind technical criteria for processing and transferring administrative data; and document elements of a data management process for the structuring of data for the purposes of studying health care use within the context of culturally adapted health services. While the protocol was developed and implemented in partnership with outside academic partners, we showcased how it was done consistent with Indigenous data governance and sovereignty principles. To some extent the development and implementation of the protocol was aligned with the Findable, Accessible, Interoperable, and Reusable (FAIR) principles. However, Anas Wayuu being an Indigenous health organization had to consider them in relation to the rights over their own data, as per the CARE Principles for Indigenous Data Governance. While aspects of the two sets of principles can be somewhat complementary, our paper suggests a key tension.