My mother is deaf in one ear because of her doctor. We do not know exactly what happened, but her ENT physician perforated her ear. This is sad but doctors are human and humans make mistakes. What is even more sad is the reason that we do not know exactly what happened: her doctor refused to give her a copy of the medical notes. I think he felt that sharing the notes was dangerous to his career.
One generation later, an increasing percentage of doctors feel differently. It is not just that they understand that notes about patients belong to those patients, even if the notes can document clinical errors. Rather, some doctors even feel that sharing the notes is safer for everyone involved.
For example, Vanderbilt University Medical Center has an excellent patient portal. A physician there told the story of a patient that came in complaining of chest pain. The physician ordered a CT scan to check for aortic dissection and was relieved when the radiology report showed the patient did not have this diagnosis. A few days later, however, the patient contacted the physician asking about they “lump” in the radiology report. The radiologist had mentioned this incidental finding in the throat. Sure enough, the lump was from thyroid cancer, and this story has a happy ending after excising the cancer.
The physician told me this story because he feelts that sharing the notes is safer for everyone. This attitude forms the principles of participatory medicine, laid out in an excellent blog post by Giles Frydman:
Patients have equal access to all data. From E-Patients might have prevented Minnesota wrong kidney tragedy.
Real data to make the right decisions.
Patients are case-managers of their own illnesses.
Primary Care Physicians are gateways, not gatekeepers.
Patients are co-producers of their own health. From: The Autonomous Patient, Angela Coulter
Going through medical school and clinical practice it sometimes seemed to my friends and I that medicine never changes. This is not true. It does change and it does so dramatically, even if the changes seem slow at first. Today, not only has the standard of care improved to reduce the liklihood of my mother’s deafness, but the response of doctors has also changed. And for the better.