Should researchers studying EHRs contact patients if they find a problem? Patients weigh in

Researchers are increasingly mining data found in EHRs for various studies, bringing to light an unexpected ethical dilemma: What if the research team finds an untreated health concern while reviewing an individual patient record?

"The use of EHRs for research has the potential to improve the diagnosis and treatment of disease," a team of researchers from Nashville, Tenn.-based Vanderbilt University and Durham, N.C.-based Duke University wrote in a recent study published in the Journal of the American Medical Informatics Association. "Researchers will almost certainly discover discrepancies in EHRs that call for resolution."

For the study, the team sought to explore patients' attitudes toward being contacted by a researcher who had access to their medical record. The study authors conducted 15 focus groups across urban and rural communities in the southeastern U.S., during which a moderator presented three vignettes related to whether a researcher might have a reason to contact a patient.

The vignettes focused on situations in which a researcher conducting a hypothetical study noticed an undiagnosed health condition, inappropriate medication regimen or potential future health risk.

While patients' attitudes varied, many agreed it was important for researchers to act if they discovered information related to a current serious health concern. The patients suggested researchers relay information through a patient's existing physician.

The study authors concluded researchers working with EHRs should discuss how to ethically approach patient contact prior to the launch of their study.

"[Researchers] should carefully consider the possibility of such contact when planning their studies, including the time and expertise needed to adjudicate potentially serious discrepancies," the study authors wrote.

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