Balancing Access to Health Data and Privacy

A Review of the Issues and Approaches for the Future

This article examines issues of privacy and utility in health services research. While the availability and complexity of data have increased in recent years, privacy concerns have limited researchers’ ability to fully utilize these sources of information.

The authors discuss the relevance of micro-data research to health care reform efforts, identify the utility and privacy risks of several types of data, and issue recommendations to improve access to data while protecting the privacy of individuals.

Key Findings:

  • While there has always been inherent conflict between facilitating access to health data and protecting the privacy of individuals, legislative efforts such as the Health Insurance Portability and Accountability Act (HIPAA) have made it more difficult for researchers to access data in a timely manner.
  • The types of data potentially available for research have expanded in recent years and include survey, administrative, clinical and socio-spatial information.
  • New data sources and privacy laws have encouraged the development of data enclaves which protect the privacy of individuals while allowing broader, faster research opportunities. These data enclaves protect privacy with a combination of statistical, operational, behavioral and legal interventions.

There will always be tension between privacy concerns and research access. In order to encourage the production of high-quality, timely health services research, the authors recommend that delays in access be reduced and the use of data enclaves encouraged. Finally, the authors recommend the development of a body of knowledge around the availability of technologies that promote data access while protecting privacy.

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