Have you had this moment? Listening to your doctor, as in measured tones, they give you a measured assessment of your physical condition. The language is just technical enough to be hard to follow, and the recommendations just oblique enough to seem unconvincing. What if, you wonder, they told me what they really thought? Like, for example, that you were sedentary and overweight. Would that improve your health? Is there any way a doc would want to share such an opinion?
If you’ve wondered about this, then consider a recently published study granting patients open access to their physician’s notes. “In his notes, the doctor called me ‘mildly obese,’” wrote one study subject. This is the type of comment that many doctors would hesitate to make directly to a patient, for fear of offending him or her. But, when reviewed in a note, it had a quite different effect; “This prompted my immediate enrollment,” the patient continues, “in Weight Watchers and daily exercise.” And herein lies the promise of a convention-twisting study by Dr. Tom Delbanco and colleagues published in the October issue of Annals of Internal Medicine.
Across three centers (Beth Israel Deaconess Medical Center in Mass., Geisinger Health System in Pa., and Harborview Medical Center in Wash.), 105 primary care physicians (PCPs) invited some 13,000 of their patients to have open electronic access to their visit notes. Participants (patients and physicians) were surveyed on their experiences 12 to 19 months after starting the program. In the case of physicians, survey results were compared to a pre-intervention survey (also completed by some docs who did not participate in the program) that assessed expectations. Their results demonstrated a consistently favorable response across patients and providers…
*Eighty-seven percent of patients with visit notes available for viewing looked at least one entry.
*Of those patients who viewed notes, 77-87% (averages across the three sites) agreed that the open notes program helped them to feel “more in control of their care,” and 77-85% agreed that it helped them understand “health conditions better.”
*In contrast, only 2-8% felt that the intervention was “more confusing then helpful,” and only 1-8% reported being offended, confused, or worried by the notes.
*Among the participating doctors, many worries expressed on the pre-intervention survey did not come to fruition. For example, while 34-46% percent of participating physicians expected that the program would make it more time-consuming to write notes, only 0-21% felt this phenomenon actually occurred.
*At the end of the program, 99% of patients elected to continue, and no physicians opted out.
Now, before anyone gets too excited, there are some major caveats to discuss. Yes, there are always caveats! First, let’s start with the study design. The authors label it quasi-experimental, but really the study is merely a description of what happened when physicians and patients amenable to the idea of open notes were enrolled in such a program. When such participants were later surveyed on their opinion, we would naturally expect a bias towards favorable responses. It is telling that of those physicians surveyed before the program, those who participated had significantly more optimistic expectations of how it would work out than the non-participants.
Furthermore, while the survey response rate among physicians was high, among patients it was not (41%) – and in the realm of survey studies this would qualify as high risk for non-responder bias (i.e. what if only patients who had positive opinions about the program returned the survey whilst those that had negative opinions tore it up and set it on fire?)
Finally, (a small detail), among physicians responding, a near majority worked less than 15 hours of direct clinical care a week – which is not at all representative of PCPs nationwide and may have impacted their opinion as to what constituted an increased burden of documentation.
Thus, even a long-time advocate of patient autonomy, such as bioethicist Art Caplan at New York University, has major reservations about generalizing from this study.
“I am a bit surprised by the reaction to open notes in primary care.” Caplan wrote. “I want to see more evaluation in a bigger set of settings than Geisinger Health System in Danville, Pa. and Harborview Medical Center in Seattle. These are not typical primary care locations. I find it hard to believe that the average primary care doc in a small community is going to be as enthusiastic as these docs were about keeping open notes.”
Here Dr. Caplan hits on an important shade of grey; open notes will not be for everyone. For some physicians, especially some specialists, such a program will just not work; their written language will be too obtuse (try reading a note from an ophthalmologist) or their time too disrupted. Many docs might (rightfully) be concerned that open notes would mean open season for lawsuits. And the idea that patients can add to their own notes (supported by a majority of patients in the Delbanco study) will certainly cause some backlash. As Dr Caplan says “I am not sure what the case is for open notes—a health care provider should be free to record observations or speculative opinions without having to prepare for the patient to see them. I think this is taking autonomy a bit further then it needs to go and, while I like transparency, I don't think every jot, squabble, and written effusion has to be subject to patient examination in order to secure either patient trust or compliance.”
And this gets us to the other side of this coin; not every patient will want to know what his or her doctor really thinks. Much like with the inner opinions of friends and family members, some will be happy that certain thoughts are left both unsaid and unread.