Research use of linked health data - A best practice protocol

Abstract

Objective: This article outlines a protocol for facilitating access to administrative data for the purpose of health services research, when these data are sourced from multiple organisations. This approach is designed to promote confidence in the community and among data custodians that there are benefits of linked health information being used and that individual privacy is being rigorously protected. Background: Linked health administration data can provide an unparalleled resource for the monitoring and evaluation of health care services. However, for a number of reasons, these data have not been readily available to researchers. In Australia, an additional barrier to research is the result of health data sets being collected by different levels of government - thus all are not available to any one authority. To improve this situation, a practical blue-print for the conduct of data linkage is proposed. This should provide an approach suitable for most projects that draw large volumes of information from multiple sources, especially when this includes organisations in different jurisdictions. Conclusions and implications: Health data, although widely and diligently collected, continue to be under-utilised for research and evaluation in most countries. This protocol aims to make these data more easily available to researchers by providing a controlled and secure mechanism that guarantees privacy protection.