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Submission Type

Comparative Case Study

Keywords

governance, COMET, WICER, SCANNER, SCOAP CERTAIN, Pediatric Enhanced Registry

Abstract

There are numerous and significant challenges associated with leveraging electronic clinical data for purposes beyond treating an individual patient and getting paid for that care. Optimizing this secondary use of clinical data is a key underpinning of many health reform goals and triggers numerous issues related to data stewardship and, more broadly, data governance. These challenges often involve legal, policy and procedural issues related to the access, use and disclosure of electronic health record (EHR) data for quality improvement and research.

This paper contributes to the ongoing discussion of health data governance by detailing the experiences of nine multi-site research initiatives across the country The rich set of experiences from these initiatives, as well as a number of resources used by project participants to work through various challenges, are documented and collected here for others wishing to learn from their collective efforts.

The paper does not attempt to catalogue the full spectrum of governance issues that could potentially surface in the course of multi-site research projects using electronic clinical data. Rather, the goal was to provide a snapshot in time of data-sharing challenges and navigation strategies, as well as validation that privacy-protective, legally compliant clinical data-sharing across sites is currently possible.

Finally, the paper also provides a foundation and framing for a broader community resource on governance – a “governance toolkit” – that will create a virtual space for the further discussion and sharing of promising practices.

Creative Commons License


This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

DOI

10.13063/2327-9214.1041

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