First Real-World Trial of Impact of Patient-Controlled Access to Electronic Health Records

In the first real-world trial of the impact of patient-controlled access to electronic health records, almost half of the patients who participated withheld clinically sensitive information in their medical record from some or all of their health care providers.

Should patients control who can see specific information in their electronic medical records? How much control should they have? Can doctors and other clinicians provide safe, high-quality care when a patient’s preference may deny members of the medical team from seeing portions of the electronic medical record? What is the appropriate balance between individual privacy concerns and health care providers’ need for relevant data?

The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health (formerly Wishard Health Services) partnered to design and conduct the first real-world trial intended to help answer these and related questions. During the six-month trial, 105 patients in an Eskenazi Health primary care clinic were able to indicate preferences for which clinicians could access sensitive information, in their electronic medical records, such as information on sexually transmitted diseases, substance abuse or mental health, and designating what the clinicians could see.

Regenstrief informatics developers then created a system where those preferences guided what information doctors, nurses and other clinic staff could see. Patients were able to hide some or all of their data from some or all providers. Importantly, the healthcare providers were able to override patients’ preferences and view any hidden data, if they felt the patient’s healthcare required it, by hitting a “break the glass” button on their computer screens. When providers hit this button, the program recorded the time, the patient whose electronic chart was being viewed and the data displayed.

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