We’re over a month into the Cures Act Final Rule and doctors are adjusting to the idea of sharing their notes with patients. Patients are adjusting to reading clinic notes. This case of misunderstanding of the term anorexia shows some of the challenges that arise from the new law.

For the uninformed, the Cures Act Final Rule on Interoperability & Information Blocking is a federal mandate created to prevent the blocking of electronic health information. The biggest impact for most of us is the fact that patients now have immediate access to their clinic notes and studies. You can read my deeper take here.

Facing new realities with the Cures Act Final Rule

Last week a gastroenterologist shared on Twitter a patient request to have a clinic note changed. The physician had used the term anorexia when describing loss of appetite in this particular patient. Citing the definition of anorexia nervosa and the fact that this diagnosis is typically made by a mental health professional, the patient insisted that the term be removed from her note. She interpreted the term as representing a diagnosis rather than the description of a symptom — these are different things. But it’s easy to see the confusion.

Here are a few thoughts on this Cures Act dilemma and how we might reframe our thinking around terminology and the idea of open notes.

Patients seeing their records isn’t new

One of the implications of the thread was that the Cures Rule represented a new move where patients could see their records. As it turns out, access to records in the U.S. is not new. Since the passage of the Health Insurance Portability & Accountability Act (HIPAA) of 1996 patients have had access to their records. They have also been able to and ask for changes. It used to take a lot of work for a patient to see their chart – submitting requests, waiting, or even retrieving a big pile of paper from a medical record department. Now it’s a matter of checking your patient portal.

So don’t think of the Cures Act Final Rule as something new, but rather a dramatic loss of friction around information access. Because of this more folks are seeing their clinic notes. So in some way we could say that with the Cures Act Final Rule, what’s old is new again.

Patients will misunderstand

One hard reality of open notes is that few patients will understand everything that physicians write. But patients actually understand more than we think. From OpenNotes FAQs:

In a recent large study, more than 95% of patients with diverse educational histories and socio-economic circumstances report understanding their notes well. Even if patients don’t understand everything, they indicate strongly that this type of transparency and partnership is valuable to them. It sends a strong message about inclusivity, builds trust, and turns patients into active safety partners. Moreover, open and honest communication can help decrease litigation, as demonstrated repeatedly in studies addressing medical error disclosure.

Either way, it is not our job to change that and make our notes in any way understandable. In fact, several studies have found that the majority of doctors report they do not change the way they write their notes.

Despite this idea that we aren’t obligated to change what we do, there are emotionally charged terms and descriptions that we might rethink in order to avoid this kind of confusion and follow-up. The old example of SOB (acronym for shortness of breath) is the exhaustively referenced example of this misunderstanding but there are so many more. Sure, it’s easy to type SOB, or anorexia, but it’s also really easy to understand how it could create problems.

As we experience these kinds of responses by patients, we might want to rethink some of the old terminology that we’re used to using.

I use anorexia all the time – It always leads to confusion

So to personally reflect on this, I use the term anorexia all the time to describe loss of appetite in children and babies. And, honestly, nearly every time it leads to confusion. Then I have to explain the difference between a symptom and a neuropsychiatric diagnosis. Every time I do this I think to myself that I probably should stop doing this because the effort to explain the difference isn’t worth the time or the stress on the patient’s thinking. So this case as described on Twitter rings true with me and has me thinking.

What’s important here is not to be affronted by having to slightly adjust what we do. But instead, look at this as an opportunity to think about the language we’ve all used for so many years.

Doctors don’t need to change their documentation. Or do we?

So the idea sold to us is that we just document like we alway have. Easy breezy. But this case lays bare the reality that we actually are fudging what we do. Sure we can push back. But there will be misunderstanding that creates more work than if we just changed the phrase to ‘recent loss of appetite.’ This change will happen in all of us, I suspect. From the OpenNotes FAQ: Clinicians who have more experience with sharing notes report that over time their writing does change, and overall, they feel it has improved.

So we will likely change what we do but in ways that are pretty minimal, honestly. It sounds like an inconvenience but it really won’t be in most cases.

Don’t expect a deluge

The Twitter doctor riffing on the Cures Act warned that we might expect a deluge of these kinds of requests. The literature doesn’t support this, FWIW. Evidence so far suggests that requests for changes to the medical record don’t increase following implementation of open notes. And in a December 10th, 2020 webinar that I attended, Dr. Sara Jackson from Harborview Medical Center reported that in her 10 year experience with open notes, only two of her patients had requested adjustments.

So when it comes to requests like this one, do doctors need to comply? This depends on the policies of the hospital or health system. So your mileage may vary. Personally, if faced with this situation I’d probably just make the adjustment. Of course there are just too many variables to make a hard prediction on how I would handle requests categorically.

Patients bear responsibility to know what they don’t know

Another option would have been for the patient to ask about the term rather than insist on revision. We as patients have to understand what we don’t understand and then seek clarification for that. Google (which is better for information than wisdom) will not always offer understanding.

So this law is changing how we see the medical record. There will be minor inconveniences to the way we do things. But the net benefit in the way we communicate will be a plus.

For more information on open notes swing by OpenNotes.org and check out the deep literature on patient-facing clinical notes.

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Image via Tiyani Ma. And a huge thanks to Liz Salmi from OpenNotes for her critical input on the first draft of this post.