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First real-world trial of impact of patient-controlled access to electronic medical records

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

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 ? What is the appropriate balance between individual privacy concerns and 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 health care providers were able to override patients’ preferences and view any hidden data, if they felt the patient’s health care 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.

The results of the groundbreaking trial are presented, interpreted and analyzed in five peer-reviewed research papers describing how the patient-controlled system was developed, how the trail was conducted and how patients and their providers felt about patient control; a point-counterpoint discussion; and commentaries that comprise the January 2015 supplement to the Journal of General Internal Medicine.

“To the best of our knowledge, a trial like ours has never been attempted before, and we believe it presents an opportunity to shape national policy based on evidence,” said Regenstrief President and CEO William Tierney, M.D., principal investigator of the project. “We learned that patients have widely different opinions of what kinds of their health care data they would like visible to different members of their health care team and others, such as health services researchers, who might have access to information in their electronic medical record.