Let’s face it: We’ve all tried to imagine what the doctor’s been scribbling during our visits, what is to be found in that intimate record of frailties and phobias that we never see, even though it is all about us.
“The medical record is information that really belongs to the patient, but it’s treated like a classified document,” said Susan B. Frampton, president of Planetree, a nonprofit organization based in Derby, Conn., that promotes patient-centered approaches to health care. “It’s symbolic of the power differential in health care.”
Patients have a legal right to their records, though access can prove difficult. What would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them?
A research collaboration called OpenNotes has set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records last month in Annals of Internal Medicine. For patients, at least, this seems to be an idea whose time has come.
The goal, said Dr. Tom Delbanco, a principal investigator of the study, is to engage patients more fully in their own health.
“That’s the great challenge in medicine: getting patients to be more active in their own care,” said Dr. Delbanco, a professor of medicine at Harvard Medical School. “What we’re doing is opening the black box and letting you look inside.”
Ultimately, he and the study’s lead author, Jan Walker, a member of the research faculty at Beth Israel Deaconess Medical Center in Boston, envision a record that is jointly written: with physician and patient input information, with some negotiation about the details and an agreement on how to proceed.