Executive Summary
Data Governance and Stewardship:
Designing Stewardship Entities and Advancing Data Access
American society is now engaged in an epic struggle over health information, and in
particular, regarding its availability under proper security safeguards, for research into
matters of quality, efficiency, population health improvement, and the reduction of
disparities in health and health care. This expanded use of health information, an
inevitable step in an information age, is considered by experts to be essential to true
health system reform. Furthermore, models exist for the creation of data-sharing
arrangements that promote such uses in a safe and secure environment and with attention
to ethical standards.
Data stewardship is a concept with deep roots in the science and practice of data
collection and analysis. Reflecting the values of fair information practice, data
stewardship denotes an approach to the management of data, particularly data that can
identify individuals. The concept of a data steward is intended to convey a fiduciary (or
trust) level of responsibility toward the data. Data governance is the process by which
responsibilities of stewardship are conceptualized and carried out.
The legal environment poses a number of barriers to the use of personally
identifiable health information, and the evolution to a system in which information is
made available under appropriate stewardship and governance conditions will be slow.
Health information privacy concerns on the part of consumers and patients are often
considered to be the principal barrier, but equally important are the privacy interests of
providers. Equally important is the concept of data ownership and control for business
purposes, given the immense value placed on the sale of data.
Significant movement to a more open data sharing world operating under
concepts of privacy, security, stewardship, and accountable governance, will be possible
as security safeguards grow and as government steps in to begin to develop the links
between participation in government programs and the disgorgement of information
under controlled circumstances.