Last month, federal rules enacting the 21st Century Cures Act required health care providers to give patients greater access to their records in digital format. The requirement was not universally welcomed. Some healthcare professionals worry that a patient facing a difficult diagnosis will not receive the guidance and context that a doctor can provide.
Tom Delbanco, John F. Keane Professor of Medicine and family at Harvard Medical School and Beth Israel Deaconess Medical Center, is a pioneer of the “open notes” movement, having supported better access to medical records since the 1970s, when frank conversation with a patient resulted in a turnaround in care. In 2010, he partnered with Associate Professor of Medicine Jan Walker to launch OpenNotes, a nonprofit organization that supports research and education on the benefits of open medical records. We spoke with Delbanco about patient access to notes in a conversation edited for clarity and length.
GAZETTE: Coverage of the change has not been particularly favorable. I have seen anecdotes where patients are caught off guard by test results that have not been screened by their doctors.
DELBANCO: The irony is that this is nothing new. Portals for patients began to appear around 2000. One of the first was at Beth Israel Hospital. From the start, they offered patients the ability to send private emails to providers and quick, password-protected access to data, including much of their lab work. But most vendors offered portals that made a few exceptions. The results of CT scans, MRIs, cardiac monitoring, and pathology reports were often embargoed for some time. But overall, if you had blood drawn and you were anemic, you might find out long before your doctor.
The transparency movement is like a new drug: it’s designed to help the vast majority of people. You, the patient, must use your own judgment. You might not want to watch right away; you may want to wait for the doctor to call.
GAZETTE: The debate over medical records goes back decades. How did we get to where we are today?
DELBANCO: When I became a doctor, the medical record was basically my own, designed to describe and remember the patient, to share with my colleagues, for insurers to make sure I was billing correctly, and in some cases for adjusters in quality assurance to ensure that I was taking good care of my patients. But it was decidedly not designed to be shared with patients or their families. In 1973, a pediatrician and social scientist writing in the New England Journal of Medicine strongly suggested that we share medical records with our patients. Shortly after, I had what for me was a sentinel event. A patient who worked as a printer was referred to me for a consultation for out of control blood pressure. As I took his story, I learned that he didn’t get along with his wife, sex didn’t work out very well, he yelled at the kids, and argued at work. He was smoking. He told me he also drank a few beers a day. I said to him: “Mr. A, it seems to me that there are two or three things: First, because you are a printer, you can read things backwards, so you can read what I write . Isn’t that right? He said, “Yes, that’s right, doctor.” I said, “I’m having trouble deciding whether to write ‘alcohol abuse’. I don’t believe you only drink two beers a day, because everything you tell me, and your blood pressure, adds up to someone having trouble with alcohol. And he was silent for about 30 seconds. Then he said, “I guess you better write it down, doctor.”
It resulted in a real change in his care and in his life, and it made my head spin. I started sharing records with my patients. Then Jan and I went to the Robert Wood Johnson Foundation in 2008 and said, “We’d like to do an experiment where doctors share records with their patients. They bet on us, and now we’ve gone from 10,000 patients when we first experimented, in 2010, to a national mandate. We are truly part of an international movement. In England, open notes are about to be published nationally. Sweden already does this. Estonia was the first country to offer grades open to everyone. We are participating in a real transformation of the care fabric, like the general trend towards transparency in many companies.