O-59 Caribbean Data Sharing Initiatives: Examples from the ECHORN Cohort Study
Author(s):
K Wang, I Hambleton, M Campbell Britton, JL Martinez-Brockman, C Brandt, L Marenco, T McCall, S Date, OP Adams, R Maharaj, C Nazario, M Nunez, M Nunez-Smith
Year of Presentation:
2023
Objective: To describe the experience and lessons learned of the Eastern Caribbean Health Outcomes Research Network (ECHORN) in sharing data from the ECHORN Cohort Study (ECS). The network’s flagship study is the ECHORN cohort study (ECS), which examines risk and protective factors for cancer, diabetes, and heart disease in diverse populations over time.
Methods: ECHORN has established groups dedicated to developing robust, sustainable solutions for data integration and dissemination. This team works to identify data needs, test ideas, and implement activities that integrate the FAIR guiding principles for scientific data management (findable, accessible, interoperable, reusable) with the values of equity, inclusivity, and collectivity embodied in the CARE principles of data governance.
Results: ECHORN has established two data sharing mechanisms: Explore ECHORN, a free public web site with data displays, and the Data Access and Scientific Review committee, an expert panel that reviews research and policy proposals. ECHORN groups continue to work on pressing issues around data sharing, including developing training opportunities in data management to complete the network’s journey along the FAIR and CARE pathways.
Conclusion: Through this process ECHORN groups have identified the importance of transparent and equitable engagement of community and stakeholders in data sharing efforts, the continuous learning needed to ensure adherence to the FAIR and CARE principles, and the tremendous potential of data sharing to inform policy and strengthen the impact of research, particularly in the Caribbean.