“The doctors who declined to participate were much more worried about the impact on their time,” says Jan Walker, a researcher, a registered nurse and the other principal investigator. “And they were less optimistic about the benefits to patients.”
The investigators have tracked feedback and other results, such as the identification of medical errors and how well patients took their medications. They declined to share specific numbers prior to publication of the study results but stressed that none of the participating doctors dropped out because of time demands or patient headaches. According to Delbanco, while some patients have trivial questions or corrections — for example, noting that they play baseball instead of softball — it appears that others had their questions answered or worries assuaged by checking their medical information online. And for some, sifting through their own medical record can be educational. Delbanco shares how one patient described the experience of seeing the words obese and diabetic as bracing, to say the least.
“My doctor does not confront me — he’s polite,” says Delbanco, reading the patient’s comment. “But seeing it in writing is a punch to the stomach — it makes me face reality.”
When doctors changed what they wrote, they tended toward shorter words and more educational language, Delbanco says. Personally, Delbanco no longer uses SOB — doctor lingo for “shortness of breath.” And rather than writing that a patient has heart failure, which could cause undue alarm, he might instead describe the heart as “not pumping as well as it might.”
Occasionally, though, the data dump can be confusing or misleading, acknowledges Sandman, a psychotherapist. When she initially signed on to check her blood-sugar readings, she noticed that a kidney-function result was highlighted as outside the normal range.
“I know that it [kidney function] is related to diabetes, and I thought, ‘Oh, I’m dying,’ ” Sandman recalls. It wasn’t until a subsequent doctor visit that Sandman learned that her kidney results were just fine for someone her age.