Feasibility of Linking Research-Related Data Bases to Federal and Non-Federal Medical Administrative Data Bases. Report to Congress

摘要

The document reports to Congress on the feasibility of linking research-related data with similar data collected or maintained by non-Federal entities and by certain Federal agencies. These data describe patient clinical and functional status for research with respect to the outcomes, effectiveness, and appropriateness of health care services and procedures. After discussing the usefulness of secondary data (generally from administrative records), the problems of lack of coordination in the development of standards for medical data and access to data are addressed. The establishment and implementation of standards and the resolution of access issues will contribute to the availability of data for medical effectiveness research. To increase the availability of secondary data for medical effectiveness research, the report notes two approaches: (1) improving existing data sources, especially State data systems and (2) encouraging the development of the automated patient record and the standards that must precede it.