Data Governance and Stewardship

Designing Data Stewardship Entities and Advancing Data Access

This article evaluates the role of governance and stewardship in improving access to health care data. A struggle over health information access has existed for decades. Advocates of increased access cite the importance of high-quality data to improvements to health care costs, effectiveness and safety, while advocates of strict privacy laws focus on protecting the confidential nature of health care information.

The authors define data stewardship and governance, describe the underlying tension between access and privacy, and outline a potential approach that treats data generated by health care as a public good and therefore available for use in accordance with the principles of data stewardship.

Key Findings:

  • Data stewardship is a collection of data management methods that cover de-identification, aggregation, storage, acquisition, and use of health care data. Data governance refers to the policies and procedures that oversee data stewardship.
  • A 2007 Request for Information issued by the Agency for Health Care Research and Quality garnered a wide and varied public response on the concept of data stewardship. No consensus emerged in support or opposition to the concept of data stewardship.
  • While numerous policies, most notably the HIPAA Privacy Rule, govern aspects of data access, no policy has satisfactorily addressed how best to access information vital to understanding health care safety, quality and efficiency.
  • A possible solution is to treat health care data as a public good, so that it could be accessed by entities operated in accordance with principles of data stewardship.

Data stewardship presents a possible solution to the struggle between privacy and access concerns about health care information. Considering health care data a public good, to be managed by data stewardship entities, may enable better research that will inform health care reform.