PCORI's Data-Sharing Initiative: An Update | PCORI

"At PCORI, we try to ensure transparency in everything we do. It’s part of our commitment to the patients, caregivers, researchers, clinicians, and other healthcare stakeholders we serve. This transparency includes our efforts to support open science, making scientific research—including the data and results it generates—widely accessible to the public. Two examples are our process for peer-review and public release of the findings of those studies and funding public access to journal articles that present key results. Our latest initiative in this area is our developing policy for sharing the data generated by our funded studies.

We drafted this policy last year as a way to advance scientific knowledge beyond the immediate impact of our funded studies. In this post, we provide updates about the progress we’re making in finalizing and eventually implementing this policy.

As with all of our work, we knew stakeholder input would improve the draft policy. We sought public comments through our website last winter. We received 32 responses from stakeholders including patients, clinicians, and researchers, as well as representatives of health systems, patient advocacy organizations, and other professional organizations. Those comments can be found here."