FAIR and CARE Principles for a Multi-Country Electronic Medical Record Cohort
Vincent Cubaka of Partners In Health in the U.S. will build robust data governance structures to enable the utilization of electronic medical records from multiple countries for research purposes to improve health. So-called FAIR (Findable, Accessible, Interoperable, Reusable) data principles enhance the value of personal medical records for research, and CARE principles were developed to protect the owners of these data. However, the rigidity of these principles can create conflicts, which can make it difficult, for example, to open access to datasets across different countries. To address this, for their current project studying the impact of COVID-19 on chronic care patients across four low- and middle-income countries, they will develop data governance structures and set-up a multi-country community oversight committee to enable full access by researchers to appropriately de-identified individual-level data on a suitable platform.