Advancing the Framework: Use of Health Data-A Report of a Working Conference of the American Medical Informatics Association

The fields of health informatics and biomedical research increasingly depend on the availability of aggregated health data. Yet, despite over fifteen years of policy work on health data issues, the United States (U.S.) lacks coherent policy to guide users striving to navigate the ethical, political, technical, and economic challenges associated with health data use. In 2007, building on more than a decade of previous work, the American Medical Informatics Association (AMIA) convened a panel of experts to stimulate discussion about and action on a national framework for health data use. This initiative is being carried out in the context of rapidly accelerating advances in the fields of health informatics and biomedical research, many of which are dependent on the availability of aggregated health data. Use of these data poses complex challenges that must be addressed by public policy. This paper highlights the results of the meeting, presents data stewardship as a key building block in the national framework, and outlines stewardship principles for the management of health information. The authors also introduce a taxonomy developed to focus definitions and terminology in the evolving field of health data applications. Finally, they identify areas for further policy analysis and recommend that public and private sector organizations elevate consideration of a national framework on the uses of health data to a top priority.