Equally important, Haendel says, is the collaboration’s effort to link data across systems while preserving patient privacy. “If, for example, a patient went to a specialist at one hospital and a general-practice physician at another institute, we could connect those records to understand that person’s health outcomes.”
Both HDR UK and N3C encourage researchers to work within the repository’s digital workspace, where extra protections mean the data can be less anonymized to provide richer information for analysis, such as by including geographical information or dates. Given the need for speed with pandemic research, “we were able to have quite a permissive environment for people to use data”, Haendel says of the N3C effort.
Researcher Charisse Madlock-Brown uses patient-level information from the US National COVID Cohort Collaborative data set to study the social determinants of health.Researchers at foreign institutions are able to access fully de-identified patient data from N3C, whereas citizen scientists can access only ‘synthetic’ data.
Source: Healthcare Press (healthcarepress.net)
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