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.
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.