Advancing the Use of HIE Data for Research

Michael J. Saks, Adela Grando, Chase Millea, & Anita Murcko.

Health Information Exchanges (HIEs) are centralized repositories of patients’ health records. The records come from most or all of the providers and health-care organizations within a given region or locale. Used mainly for clinical care, patients’ records can generally be accessed by any of the patients’ health-care providers, care coordinators, or payors, enabling them to see comprehensive and up-to-date health information pertaining to the patient.

Patients’ records and HIEs are heavily regulated by federal and state law both to achieve effective flow of information and ensure the privacy and security of the data.

That same data could be a remarkable resource for medical researchers to use to improve health and health care. But the data sit unused by researchers. Why? One of the principal barriers to research use of those data has been the law. This article reviews what those policy problems are and discusses a range of solutions. In addition, innovations in information technology have been proposed that would ameliorate the same problems that the law confronts.

Legal reforms could remove the legal barriers as well as facilitate the technological advances needed to make HIE databases more available to medical researchers, while protecting the privacy and security of the data.

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