Given access, some patients would hide EHR data, Regenstrief shows

Patients have 'widely different opinions of what kinds of their healthcare data they would like visible'
By Mike Miliard
11:11 AM

A recent study led by the Regenstrief Institute raises interesting questions about patient health data: who controls it, who sees it in the electronic health record and how it should be shared across the care continuum.

Billed as the "first real-world trial" exploring patient-controlled access to EHRs, the Regenstrief research, done in partnership with Indiana University School of Medicine and Eskenazi Health, showed that nearly half of those who participated withheld clinically sensitive information from some or all of their care providers.

"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," said Regenstrief President and CEO William Tierney, MD, principal investigator of the project, in a statement.

[See also: Trust issues over health privacy persist.]

During the six-month trial, 105 patients in an Eskenazi primary care clinic were given the opportunity to indicate preferences for which clinicians could access sensitive data in the EHR – information on sexually transmitted diseases, substance abuse or mental health, for instance – and choose what the clinicians could see.

Regenstrief informatics developers then created a system where those preferences guided what data doctors, nurses and other clinicians could see.

Patients were able to hide some or all of their data from some or all providers but, importantly, those providers could override their preferences and view any hidden data if they felt the patient's healthcare required it.

When providers hit this "break the glass" button, the program recorded the time, the patient whose electronic chart was being viewed and the data displayed.

[See also: Patients want more from their EHRs.]

Forty-nine percent of the 105 patients who participated elected to withhold information contained in their medical record from some or all of their healthcare providers.

While patients were in favor of such control, their providers had mixed reactions. Some just wanted to make sure patients were aware that hiding information could adversely affect their care; others "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, according to researchers.

"Fair Information Practice Principles – federal guidelines focusing on privacy issues – dictate that patients should control all access to information in their medical records; but hiding information from doctors could have dangerous repercussions," said Tierney in a statement.

"Yet without having control over who sees sensitive information in their electronic charts, patients may not be willing to tell such things to their doctors and nurses," he added. "So there is a tension between patients who should have control over their health information and doctors who may not serve them well, and may actually harm them, if important information is hidden."

This study, was supported in part by a $1.6 million grant from the Office of the National Coordinator for Health IT to the Indiana Health Information Technology Corp.

"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 Tierney.

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