Policies to regulate data sharing of cohorts via data infrastructures: An interview study with funding agencies

To encourage data sharing, members of funding agencies were recruited to participate in semi-structured interviews, analyzed through inductive content analysis, to understand their perspectives on policy interventions. Mandates for cohort data sharing are not supported by agencies due to data protection regulations and the preconditions for issuing mandates. Monitoring mechanisms for cohort data sharing are currently absent, which complicates assessing compliance of researchers with funding agencies’ policies and evidence production. Funding agencies are not imposing conditions on data access committees and policy measures restricting the decision-making authority of researchers in terms of data sharing are not generally supported. Thus, concrete steps are proposed to enable evidence-based policy making.

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