Health services research and data linkages: issues, methods, and directions for the future

Abstract

Background: Research on pressing health services and policy issues requires access to complete, accurate, and timely patient and organizational data.

Aim: This paper describes how administrative and health records (including electronic medical records) can be linked for comparative effectiveness and health services research.

Materials and methods: We categorize the major agents (i.e., who owns and controls data and who carries out the data linkage) into three areas: (1) individual investigators; (2) government sponsored linked data bases; and (3) public-private partnerships that facilitate linkage of data owned by private organizations. We describe challenges that may be encountered in the linkage process, and the benefits of combining secondary databases with primary qualitative and quantitative sources. We use cancer care research to illustrate our points.

Results: To fill the gaps in the existing data infrastructure, additional steps are required to foster collaboration among institutions, researchers, and public and private components of the health care sector. Without such effort, independent researchers, governmental agencies, and nonprofit organizations are likely to continue building upon a fragmented and costly system with limited access. Discussion. Without the development and support for emerging information technologies across multiple health care settings, the potential for data collected for clinical and transactional purposes to benefit the research community and, ultimately, the patient population may go unrealized.

Conclusion: The current environment is characterized by budget and technical challenges, but investments in data infrastructure are arguably cost-effective given the need to reform our health care system and to monitor the impact of health reform initiatives.

Figure 1

Example of How Data Are Linked to Create a Matched Tumor Registry, Medicaid, and Medicare Dataset with Provider- and Area-Level Files