Should You Read the Notes Your Doctor Writes About You?

When I was a medical student on a family medicine rotation in suburban Philadelphia, I shadowed a doctor who had a well-established practice in the area. He was the type of doctor that we associate with a bygone era in medicine, when a physician started their interaction with the patient by catching up on what was going on with kids, and nieces, and the like. This doctor genuinely loved talking to his patients and, as he readily admitted to me, hated the business side of medicine—the documentation, the billing, the overhead maintenance—that limited his face-to-face time. As such, he had developed a mitigation strategy that I hadn’t seen before. He brought a tape-recorder into each patient encounter. And, after catching up on family, work, and hobbies, he went on to health, diet, and blood sugar, he would end the encounter by dictating his note in the room with the patient listening. As he did so, he’d nod intermittently to reinforce certain points (“We stressed increased activity for weight control”) and occasionally would stop the recording to check his accuracy with the source (“That has been three weeks on the new blood pressure medication, right?”). At the end of the day, the doc would turn over his tape recorders (yes, multiple) for dictation by his staff. Last fall, I reflected on this doc and his approach to clinical communication, as our hospital system rolled out its Open Note functionality.

The concept of Open Notes (physician notes fully available and transparent to the patient) is relatively new to the mainstream and convention-twisting. The story goes that Open Notes co-founder Dr. Tom Delbanco, an internal medicine physician now at Harvard Medical School/Beth Israel Deaconess Medical Center (BIDMC), was inspired decades ago when he was talking with a patient who worked as a printer. As they were discussing the patient’s high blood pressure and work and marital difficulties, Delbanco was scribbling hand-written notes, but hesitated. From a 2016 interview:

“And I was writing notes, but I said to myself, this guy is a printer, he can probably read upside-down what I’m writing about him right now. So, I said to him, ‘Mr. A., you know, I’m stuck, because I think you can see what I’m writing, right?’ And he said ‘Yes.’ And I said, ‘So the problem is that your case is a classic one of early alcohol abuse, but I don’t want to write that down if it’s not true.’ And he paused, and then said, ‘Well, you’d better write it down.”[1]

This story was re-told to me not long ago over the phone by Open Notes scholar Charlotte Blease. In her second-hand version, this experience was an epiphany for the patient who was able to address and recover his health and his life. It was also “transformational” for Delbanco who parlayed the moment into a change movement.

Dr. Charlotte Blease is Irish with training in philosophy. She came to Harvard/BIDMC in 2017 as a Fulbright Scholar and was working in a division of the hospital that was trialing the Open Notes program. The concept resonated with what she understood about the ethical underpinnings of clinical communications. The recognition that patients could be “diagnostic collaborators” was liberating to their autonomy but also potentially at odds with the professional autonomy of the physician. So, the larger question seemed to be whether the decision to implement Open Notes would be an error of commission or omission. Was there more risk in doing it or not doing it?

Our hospital system has been live with Open Notes since last fall. Many of my colleagues in the Emergency Department were skeptical during the pre-deployment training session. “Try not to use words like ‘unreliable’ or phrases like ‘poorly compliant,’” we were told. “Don’t use abbreviations” and “avoid medical jargon,” we were advised. My colleagues and I initially balked at these instructions because they were counterintuitive to us and to our prior practice. Our physician notes had always been written for three audiences: other physicians who would interact with the patient and wanted to have an unfiltered account of previous encounters, the lawyers who could conceivably subpoena the note if there happened to be an outcome that ended in malpractice litigation and the billing coders who would figure out how much to charge for the encounter.

Dr. Blease and I knocked around these concerns during our recent conversation.

She shared her own experience with the National Health Service. A loved one of hers had received a dire diagnosis but was unable to recall many details from their conversation with the oncologist. In the absence of Open Notes and facile access to a follow-up appointment, it was an ordeal to obtain his records, but eventually, they did, and they were helpful.

“The truth is that many people are going to Google their illness regardless, and if they have the specifics from their doctor’s note, they will be better able to use technology to get more accurate information.”

Furthermore, Blease told me, she and others believe that “the patient is the most underutilized resource in medicine. They have the most at stake and are most able to pick up inaccuracies and provide context.”

And while some, like myself, worry about the balance of medicolegal documentation and risk in the Open Note era, there is a counter-observation that sharing notes can increase trust and perhaps mitigate litigiousness. In this respect, says Blease, “a sense of control and understanding can go a long way.” And to this point, there is no doubt that improved communication can strengthen the patient-provider alliance and existing survey-based evidence supports the argument that Open Notes can enhance such communication. [2-4]

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So, despite some initial skepticism, I am coming around to the notion of Open Notes as a step in the right direction. And just in time, as of April 5, federal regulation implementing the 21st Century Cures Act requires that physician notes, with a few exceptions, be available to patients. Still, though, there are clearly challenges—Open Notes may not be appropriate and potentially detrimental in certain situations (e.g, patients who “doctor shop” for prescription drugs) and must continue to serve multiple other functions (inform other physicians and provide medico-legal protection).

Thinking back to that old-school family physician on my medical student rotation, maybe he wasn’t so old-school after all. I suspect that if he had a quick and easy way to transcribe his dictations and share them with his patients, he would have done so. But, he would also surely have recognized that today’s physician note serves many masters and is an imperfect tool to capture the provider-patient experience and a poor substitute for a clear and permanent record of the most important moments of a clinical encounter. In this regard, Open Notes are just a start. Today, we do have the technology to capture the most critical and patient-centric pieces of a discussion (such as the critical details of a cancer diagnosis) and preserve these for the patient and family. This technology might be as simple as a voice memo on a smartphone, but it could soon be smarter and more automated than that. Next time we will explore this frontier, in the form of “Open Recordings,” with innovator and researcher Dr. Paul Barr.