Big Data Challenge: Patients Withhold Medical Info
In what is being touted as the first real-world trial of the impact of patient-controlled access to electronic health records, almost half of the patients who participated in the study withheld clinically sensitive information in their EHR from some or all of their healthcare providers.
During the six-month trial, a partnership between Regenstrief, the Indiana University School of Medicine, and safety net provider Eskenazi Health, 105 patients in an Eskenazi Health primary care clinic were able to indicate preferences for which clinicians could access sensitive information in their EHRs, 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. Forty-nine percent of the 105 patients who participated elected to withhold information contained in their medical record from some or all of their providers.
Patients strongly desired such control, while their providers had mixed reactions. Some providers 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 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.
Importantly, the 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.
"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 healthcare data they would like visible to different members of their healthcare 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 trial 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.
The work was supported in part by a $1.6 million grant from the Office of the National Coordinator for Health Information Technology to the Indiana Health Information Technology Corp. The study and related articles are available here.