Linking Data for Health Services Research: A Framework and Instructional Guide

Health registries greatly enhance health services research, especially when linked with other data sources such as administrative claims. Recently, concerns about patient privacy and data security have produced policies such as the Health Insurance Portability and Accountability Act (HIPAA) that reduce the availability of sensitive identifying information. In this context, the development of effective record linkage approaches for varying scenarios of data availability is critical. This report presents a conceptual framework and instructional information that scientifically describe the strengths and limitations of different approaches to record linkage of registries to other data sources. The report defines the requirements for high-quality record linkage of registries to other data sources and describes the strengths and limitations of different approaches. By explaining the spectrum of activities involved, it serves as an instructional guide for researchers designing new CER studies using patient registries linked with other secondary data sources. Through this report, we provide an overview of linkage from registries to administrative claims, including considerations for researchers, data managers, information technology managers, and other stakeholders who are likely to be involved in the process of data linkage. We also apply the data linkage framework to a real-world problem and discuss the results.