Can I have my health data? Some doctors still think no.

by Tom Ulrich on April 4, 2013

(Courtesy Accenture and Harris Interactive)

One of the big selling points of electronic health records (EHRs) is patient empowerment. By letting patients have their data, the thinking goes, they’ll be more engaged in their own health and empowered to take actions that will make them healthier.

Which is good not just for the patient, but for society as a whole, since living healthier means you’ll need to make use of fewer health care resources. Plus, a small study by doctors at a Veterans Affairs hospital showed that patients like having access to their records. Seems like a win-win, right?

While some physicians agree, there are some holdouts. That’s the take-home message from a survey recently published by Accenture and Harris Interactive, in which they asked 3,700 physicians in eight countries their opinions about letting patients have access to their medical and health data.

“The results of the survey are certainly quite interesting, although not surprising,” says Fabienne Bourgeois, MD, MPH, a pediatrician at Boston Children’s and leader of the hospital’s MyChildren’s EHR project.

In the United States, about 82 percent of doctors in the survey felt patients should be able to update certain aspects of EHRs (e.g., demographics, family history, medications, allergies). But only 31 percent of doctors said patients should have full access to their health records; another 65 percent think patients’ access should be limited. Thankfully, only four percent of U.S. doctors felt that patients should have no electronic access to their health data at all.

“Providers have a number of concerns, including that patients may not understand the content of the clinical information, that they may misinterpret the information, that results may lead to unnecessary anxiety or that they may contact their providers more frequently with questions,” says Bourgeois, who has argued that EHRs can reduce fragmented care.  “Providers are also concerned that they will have to change how and what is documented in the medical record. But I think a number of projects, most notably the OpenNotes project, would challenge this mind-set.”

OpenNotes is an online project that lets doctors share their written clinical visit notes with their patients. The project recently published the results of a yearlong study that found note sharing had a positive impact on patient care.

“Since personal health records are still a relatively new technology, the current unease is understandable,” Bourgeois continues, “but as both patients and providers become more used to the technology, I would suspect that providers will become more comfortable with the idea of sharing all clinical information with the patients.

“After all,” she notes, “in order to truly allow patients to actively participate in their own health care, we need to provide them with the tools and data to do so.”

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