Giving Patients a Role in Data Exchange

A pilot program at the University of Texas at Austin seeks to find the right processes for enabling patients to track who requests and receives their protected health information.

The pilot, being done under the umbrella of the Office of the National Coordinator for Health Information Technology, is designed to add transparency to the process of exchanging patient data. Providers have repositories within their electronic health records systems that can include signed patient consent directives for the use of their information, and the directives can be reviewed to determine what information to send. But these are closed information systems and patients usually do not know who has requested their information, what was sent and what was seen.

The pilot program will use external patient consent repositories and other access control technologies from Jericho Systems, with simulated data to represent patient consents, requests for information and the sending of requested information. Under this scenario, a clinic would send a request for patient information to a hospital and the external repository would determine if the request is appropriate based on the patient’s consent, and the patient would be notified of the request and the information shared or not shared.

Health information technology students at UT-Austin will study existing data standards as part of a process to define a profile for exchange of data that includes patient notification that can be automated with an external repository replying appropriately to requestor, sender and patient.

The goal is for patients to be able to review who sees their information as easily as they review a credit card statement, says David Staggs, chief technology officer at Jericho Systems. Advocacy organizations or health information exchanges could host external patient consent repositories, he adds.

More information is available here and here.