Nothing About Me Without Me

An electronic medical record example
Image via Wikipedia

Donald Berwick, recent Administrator of the Centers for Medicare and Medicaid Services, and past President of the Institute for Healthcare Improvement, has some opinions on patient-centered care. One of his maxims for patient-centered care is: nothing about me without me—addressing transparency and patient participation in care. In one of his speeches, “Escape Fire: Lessons for the Future of Health Care” (Commonwealth Fund, 2002), he rails against the difficulties patients have in having access to their own medical information.

Isn’t it ironic that giving patients access to their own medical charts is considered a radical idea? So radical in fact that the Robert Wood Johnson Foundation—that pioneering, cutting edge organization—is funding research on the feasibility and effectiveness of giving patients access to their own medical records. A one-year pilot project called “OpenNotes” was conducted at three hospitals: Harborview Medical Center in Seattle, Beth Israel Deaconess Medical Center in Boston, and the Geisinger Health system in Pennsylvania. Results from the baseline survey data were reported in the Annals of Internal Medicine (12-20-11). Not surprisingly, patients were overwhelmingly (>90%) supportive of the idea of having access to their doctor’s medical notes, saying it would help them remember important health information. In contrast, the majority of the 173 doctors completing baseline surveys expressed reservations over the OpenNote idea. The doctor’s concerns included: 1) worrying/confusing patients with medical chart information, 2) doctors would be less candid in what they charted about patients, 3) it would take up more of their time in having to answer patient questions raised by access to their charts, 4) it could increase the number of lawsuits, and, 5) personal medical information could end up on Facebook.  The yearlong pilot has ended and OpenNote researchers are now analyzing data to see how patients and doctors who participated in the project felt about it. They are also evaluating how often patients accessed their medical charts, how often they shared them with family/other providers, and how often they corrected errors the doctors had made in the charts.

As Carol Ostrom points out in her recent article on the OpenNote project, doctors may need to change some of their charting habits in terms of labeling patients. (“Patients eager to see doctor’s notes; physicians, not so much” Seattle Times, 12-25-11). She includes calling patients SOBs and charting on their BS (bowel signs). I’m not sure I’ve ever read a medical chart where someone called a patient a SOB, but I last worked in a clinic that had ‘slovenly’ as a standard term in a menu for describing patients. My colleagues and I had a debate, with some saying slovenly was a perfectly acceptable term for patients—similar to unkempt or disheveled. I maintained it was much more insulting because it implied a slur on moral character as well as physical appearance. And then there’s the still used FLK (funny looking kid) in pediatrics, used for describing a baby or toddler ‘just doesn’t look quite right and might have a genetic or other disorder but who hasn’t been diagnosed yet.’ Supposedly some pediatricians have been known to use FLP (funny looking parent) in children’s charts—I suppose by way of saying the FLK is genetic in a FLF (funny looking family) sort of way. I don’t think these terms would go over well in OpenNote.

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