Data Governance and Stewardship: Designing Data Stewardship Entities and Advancing Data Access

U.S. health policy is engaged in a struggle over access to health information, in particular, the conditions under which information should be accessible for research when appropriate privacy protections and security safeguards are in place. The expanded use of health information-an inevitable step in an information age-is widely considered be essential to health system reform. Models exist for the creation of data-sharing arrangements that promote proper use of information 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, sharing, 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. As the concept of health information data stewardship advances in a technology-enabled environment, the question is whether legal barriers to data access and use will begin to give way. One possible answer may lie in defining the public interest in certain data uses, tying provider participation in federal health programs to the release of all-payer data to recognized data stewardship entities for aggregation and management, and enabling such entities to foster and enable the creation of knowledge through research.