In what is described as the first real-world trial of the impact of patient-controlled access to electronic medical 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. The Regenstrief Institute developers created and implemented a system allowing patients to control who could see specific information in their EMRs, then implemented this patient preference system for six months in a busy urban primary care clinic.
In the real-world trial, 49 percent of the 105 patients who participated elected to withhold information contained in their medical record from some or all of their health care providers. Patients strongly desired such control, while their providers had mixed reactions. Some were fine with it as long as patients knew that hiding information could adversely affect their care, and they were willing to take that risk. Other health care providers strongly objected to not being able to see all of the information in their patients' records, not wanting to be responsible for bad or unsafe care.
The researchers found that doctors and other health care providers were highly concerned about adverse effects on both the quality of care and on the provider-patient relationship if patients were allowed to hide information in their electronic health record from their doctors and nurses.
The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health (formerly Wishard Health Services) partnered to design and conduct the trial. 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 EMRs, such as information on sexually transmitted diseases, substance abuse or mental health, and designating what the clinicians could see.
Regenstrief informatics developers 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.
“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, in a prepared statement. “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.”
The results of the 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.