Anyone who has been reading my blog posts for even a short time knows I am a big proponent of the OpenNotes movement. The main concept behind OpenNotes is that the clinician-patient dyad can be improved by sharing the clinician’s documentation with their patients. Of course, all parts of the medical record (including progress notes) have always been available for patients to see. There are, however, many hurdles – both operational and financial – that have prevented most of us from even trying to gain access to our charts. The OpenNotes movement is centered on making it easy and fast for us to gain access to our clinical documentation by pushing it securely online.
The U.S. federal government has put its tremendous powers of persuasion behind the idea that patients should have quick access to what has been written about them by passing The 21st Century Cures Act. This law and its associated regulations mandate that healthcare providers give patients access to all the health information in their electronic health records (EHRs) without delay or charge. Further, if this personal health information (PHI) can be shared electronically, then it must be distributed in that format. The end goal of the Cures Act and OpenNotes is that we will all have more health information available to us to increase transparency and ultimately improve our health.
Preliminary research shows that with more information, patients can make better decisions. A 2019 study reported that “patients find note reading very important for their health management and share their notes frequently with others.” A 2021 article focusing on pediatric inpatient care stated that “[p]arents agreed that the information in notes was useful and helped them remember their child’s care plan (100%), prepare for rounds (96%), and feel in control (91%).” Yet another 2019 study indicated that, of patients who looked at their documentation online, “[t]he majority (83%) thought OpenNotes helped them take better care of themselves, without increasing worry (94%) or contacting the physician after reading the note (91%).”
What could go wrong with more transparency between physician and patient? There is a valid concern that as U.S. health systems start releasing more information online in response to recent regulations, some patients may react negatively to either the way clinicians write their notes or the specific language used as part of their notes. Charlotte Blease, PhD, wrote about these issues last month in the BMJ’s Journal of Medical Ethics. She reports that “[s]tudies show that increased awareness about the side effects of medications, the framing of information, and the socio-emotional context of care can increase the risk of nocebo effects.” She argues that these risks don’t mean we should reverse course, but instead examine ways in which we can minimize problems and educate clinicians about how their words matter.
Most of us are familiar with the placebo effect. For example, when patients take a medicine that they are told will help them, they often report feeling better, even if the “medicine” was just a sugar pill. The nocebo effect is the opposite: it “happens when a person's negative expectations of treatment lead to negative side effects. An example of a nocebo response would be a person expecting that the medication will cause negative side effects and then having those unpleasant side effects even though the medication that they are taking is actually an inert substance.” For this discussion, replace “medication” with “access to progress notes.”
Dr. Blease posits that “…negative tone or reduced signals of support in clinical notes [could] potentially [disrupt or jeopardize] trust between patients and clinicians incurring greater patient fears, uneasiness or anxiety which may increase negative expectancies, and in turn engender nocebo effects.” It can be difficult to judge tone in writing, especially one’s own tone! While a physician might gloss over or downplay the risks of a procedure or course of action while discussing them with the patient in the office, the words in the progress note just sit there. After reading and re-reading them, it is completely understandable that the patient may focus on the risks and minimize the benefits. Further, since the patient often shares progress notes with their family or close friends, any context or tone that may have been conveyed in person can be lost entirely.
Do these nocebo risks suggest that we should not share progress notes with patients or “dumb down” notes so that they do not use technical or clinical terms that might be confusing? I would say the answer is absolutely not. However, this does seem to be an area ripe for ongoing research and even potentially for continuing medical education so that clinicians can take whatever we learn about how people are interpreting progress notes and do their best to minimize the possibilities of the nocebo effect.