The value of sharing notes and records with patients

September 8, 2014 | Reply More

Credit: Katherine Streeter/ NPR

Dr. Leana Wen, an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University, recalled the first time a patient had asked her a question Dr. Wen had never been asked before: “May I take a look at what you’re writing?” Dr. Wen quickly found that when she started sharing her notes with her patients, they “made dozens of valuable corrections and changes, such as adding medication allergies and telling [her] when a previous medical problem [had] been resolved.” Dr. Wen lauded this method of interactive note taking– “the medical record becomes a collaborative tool for patients, not just a record of what we doctors do to patients,” she remarked.

In 2010, Tom Delbanco, an internist, and Jan Walker, a nurse and researcher, began a similar venture called OpenNotes that let patients read what their primary care providers had written about them. Delbanco and Walker believed that giving patients access to these notes would allow them to become more involved in their care. Though many doctors initially resisted the idea, by the end of OpenNotes’ first year, 80 percent of patients who read their records reported better understanding of their condition and said they were better able to control their health, two-thirds of patients reported that they had improved their medical adherence, ninety-nine percent of patients wanted OpenNotes to continue, and zero doctors withdrew from the pilot year.

The OpenNotes experiment has gained traction and spread to health systems throughout the U.S. with the Mayo Clinic, Geisinger Health System and Veterans Affairs among the adopters so far. However, as OpenNotes receives more attention, new controversies arise. Dr. Wen poses a few: Should patients receiving mental health services obtain full access to therapy records, or should there be limits to open records? What happens if patients want to share their records on social media? Will such “crowdsourcing” harm the doctor-patient relationship? What if patients want to develop their own record and videotape their medical encounter? Are doctors obligated to comply?”

Dr. Wen explained that while these kinks are being worked out, “patients and doctors don’t need to wait for the formal OpenNotes program to come to town. Patients can ask their doctors directly to look at their records. Doctors can try sharing them with patients, in real time, as I do now. It’s changed my practice, and fundamentally transformed my understanding of whom the medical record ultimately belongs to: the patient.”

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