49 percent of patients withhold clinically sensitive information

This is the key finding of a new study by researchers from Clemson University, the Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health published in the Journal of General Internal Medicine.

Kelly Caine, assistant professor in Clemson's School of Computing, and colleagues at Clemson led the human factors efforts on the project. She and her team interviewed patients about their privacy and sharing preferences and used this information to design the user interface that allowed patients to control how and to whom their medical data was shared.

During the six-month trial, 105 patients 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.

Patients were able to hide some or all of their data from some or all providers. However, 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 clicking a "break the glass" button on their computer screens. When providers clicked this button, the program recorded the time, the patient whose electronic chart was being viewed and the data displayed.

In the trial, 49 percent of the patients who participated elected to withhold information contained in their medical records from some or all of their health care providers. Patients strongly desired such control, while their providers had mixed reactions. More than half believed it was OK for patients to withhold some health information. On the other hand, a quarter of providers felt very uncomfortable about not being able to see all of the information in their patients' records, worrying that it could jeopardize care.

"It is critically important to consider patients' privacy preferences about their health information," Caine said. "If we fail to design systems that meet patients' needs and desires about the extent to which their health data are shared, patients will reject them or even refuse to seek care."

The results from this trial demonstrated that patients not only say they would like control over their medical records, but actually put that control into practice when it's available.

"It is important for patients to have confidence in how clinicians and others use their sensitive health information," said Lucia Savage, chief privacy officer of the Office of the National Coordinator for Health Information Technology. "Patient-centered decision making in electronic health information exchange can inspire trust in health IT and the papers in the journal, along with this study, give us new insights on these issues."

"Our patient-centered work can inform the design of a system that preserves patient privacy and autonomy, meets providers' needs and improves care," Caine said.

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 written by Caine; and commentaries that comprise the supplement to the Journal of General Internal Medicine.