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1 in 2 Patients Keep Secrets from Their Doctors, Study

Update Date: Dec 17, 2014 05:25 PM EST

One in two patients withhold clinically sensitive information from their health care providers, according to a new study.

Researchers from Clemson University, the Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health, interviewed patients about their privacy and sharing preferences to create a user interface that allowed patients to control how and to whom their medical data was shared.

Lead researcher Kelly Caine, assistant professor in Clemson's School of Computing, and colleagues at Clemson, analyzed the preferences of 105 patients during the six-month study. Caine explained that participants were able to indicate preferences of what and which doctors were allowed to access sensitive health records like information on sexually transmitted diseases, addictions or mental health status.

While participants were able to hide some or all data, clinicians were able to override those preferences and view any hidden data by clicking a "break the glass" button.

Researchers noted that the software would then automatically record the time and patient name the "break the glass" action occurred.

The findings revealed that 49 percent of all patients who participated in the study chose to withhold information from their health care providers.

While most patients showed a strong desire to withhold medical information, one in four health care providers reported feeling very uncomfortable about not having access to all the information in their patients' records.

"It is critically important to consider patients' privacy preferences about their health information," Caine said in a news release. "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."

"It is important for patients to have confidence in how clinicians and others use their sensitive health information," Lucia Savage, chief privacy officer of the Office of the National Coordinator for Health Information Technology, said in a university release. "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."

The findings are published in the Journal of General Internal Medicine.

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