Abstract
The dissemination of biomedical research data beyond academia remains limited. In response, funding agencies now regularly require that the projects they fund make research data openly available for reuse. This emerging open data movement aims to democratize data access, often guided by the FAIR data technical standards, requiring that data should be findable, accessible, interoperable and reusable. Recently, participant communities have advocated the idea that improving data democracy does not address the inequities underlying the power dynamics of research enterprises. In contrast, the CARE principles of Indigenous data governance focus on collective benefit, authority to control, responsibility and ethics. We describe the data-sharing infrastructure and initiatives of the Eastern Caribbean Health Outcomes Research Network (ECHORN) for the ECHORN Cohort Study, which longitudinally examines risks and protective factors for noncommunicable diseases among community-dwelling adults in the United States and Caribbean locations. This work has been grounded in a community-engaged process, with the goal of developing robust, sustainable solutions for the dissemination of information. We highlight efforts towards operationalizing greater access to these longitudinal data resources, including the implementation of a regional survey to understand data needs and data-sharing capacities and the development of Explore ECHORN (https://exploreechorn.org), a free public data dashboard. Through these efforts, ECHORN has identified opportunities to expand initiatives that have the potential to encourage data-sharing to inform policy and strengthen the impact of research, particularly in the Caribbean. ECHORN also seeks to reconcile a community-engaged approach with the dissemination of data for secondary use.