Should OpenNotes become the standard of care?

Iinspired by the VA’s big bold step of going OpenNotes, I wrote a blog post titled OpenNotes in geriatics: 6 awkward concerns.

It was written in the spirit of just about everything I write: to share the nitty-gritty complexities of what I find myself navigating in geriatrics, to bring attention to medical issues that older adults and PCPs struggle with, and to try to bridge the rhetoric-reality gap.

Some seem to have appreciated the post, and the authors of the 2012 study of OpenNotes were kind enough to write a follow-up post, engaging with the issues I raised. However, it also seems that many perceived my post as casting doubt on the value of OpenNotes, or otherwise unsupportive of the effort to implement OpenNotes as widely as possible.

So I’ve decided to set the record straight re my position on OpenNotes:

My position on OpenNotes: we should all be doing it

I support the fundamental tenets of OpenNotes and hope that all patients will have access to their notes within the next few years.

To me the great overall value — both ethically and in terms of better health outcomes — of OpenNotes is a no-brainer.

Which is why I didn’t write about whether or not OpenNotes should become the standard of care. Of course it should be. It is, after all, the patient’s information and their health which is at stake, and it’s rather scandalous that for so long it’s been so difficult for patients to access their own medical information.

Furthermore, our historic lack of transparency has often been harmful to patients and families, who far too often are not informed of the diagnoses in their charts. I actually come across this often in practice, both since I see new patients, and because I’m a bit compulsive about reviewing all the problems with patients.

The most common “I didn’t know that” diagnoses that I’ve routinely encountered are dementia, anemia, chronic renal insufficiency, and depression. (Any other clinicians want to weigh in?)

Because of this lack of information, I’ve come across families who haven’t planned for continued cognitive decline (or helped their loved one avoid the psychoactives on the Beer’s list), patients who exacerbate their kidney disease by taking over-the-counter NSAIDs, questionably depressed individuals who never understood why they were given an SSRI and never made sure someone adjusted their dose, and anemic patients who tell me their anemia is new when further chart review reveals that they’ve had chronic anemia for years.

I once had a smart engaged older ex-journalist do a double-take when I mentioned his chronic renal insufficiency. He had a creatinine of 2, which I also found in his hospital records from two years prior. He didn’t recall anyone ever mentioning it to him. And there I was, not anticipating that I’d have to devote half the visit to education about chronic kidney disease (we did after all have several other complaints and issues on the agenda already).

In short, the current state of affairs, in which patients lack easy access to their clinical notes, is a huge problem, since it seriously cripples (sometimes fatally) patients’ abilities to participate in their care and otherwise ensure that their medical care is person-centered and a good fit for their values.

So I say open up the notes! (And the labs. We *really* need OpenLabs.)

Beyond deciding to go OpenNotes: Supporting clinicians and patients

Really, the discussion shouldn’t be about whether to open up access to clinical notes. The discussion should be about how to hammer out the details (without spending years dithering or rigorously planning for every eventuality), and how it’s going as we do it. We need constructive conversations about how to make this implementation as successful as possible for patients and for clinicians. My own priorities for opening up clinical notes are that we foster an effective collaboration between patients and clinicians, support patients in being informed about and engaged with their medical care, and ensure that working in an OpenNotes environment feels sustainable to clinicians and doesn’t result in them shirking the documentation of awkward topics.

I emphasize that last point, because I know that primary care in its current form feels unsustainable to many clinicians. (Hence the high burnout rates currently documented in front-line clinicians.) We are asking primary care clinicians to step up, and they should. And they will need support and attention in order to do so successfully.

For example, as is, I already spend too much time charting. Too much, as in way more time than I was given to do it in my previous salaried positions, which is part of why I chronically ran behind and found myself burnt out. Even now, I spend way more time charting than I get paid to do. (Yes, I currently charge by time, and no, I still don’t quite have the nerve to charge people for exactly all the time I spend on their chart.)

I do it because I’m detail-oriented, and because I need my notes to be useful to other clinicians. (I’ve never charted under the assumption that no one other than myself — or a Medicare auditor — was going to seriously take a look, but I can tell you that is not true of many PCPs in community practice.) I also often copy my assessment and plan into the patient recommendations section of my EMR — which means it’s viewable to the patient’s representative — and I’ve been providing patients with detailed written recommendations for the past few years.

For me, I’ve found that is IS extra work, to explain my thinking and suggestions in writing to a lay person. It’s good work, and important work, but it takes time, even when I’m not trying to figure out how to address a particularly delicate topic such as alcohol use.

Now, I care for people who are both medically complex and tend to have a lot of “life” complexities (family issues, home safety issues, dealing with overall decline issues, is this person cognitively capable of making medical decisions issues, coordination between multiple specialists and systems issues, etc).

These patients may not be the ones that most doctors write notes about, but that’s who needs the most medical care, and this population of aging complex patients is growing.

So as we implement OpenNotes, I hope we will collectively commit to regularly checking in with clinicians and with patients, to find out how it’s going for them, and to adjust things as needed to support everyone in doing the work that must be done.

I also hope that those institutions that implement OpenNotes will be willing to share the lessons they learn, as they help their clinicians adapt to a much-needed era of transparency and person-centered medical care.

Summing it up

I’m for wide-spread adoption of OpenNotes. Far too many patients are being currently harmed by inadequate access to and understanding of their medical issues.

I do think many clinicians will need support and assistance in order find the transition to transparency sustainable. I think this will be more of an issue in cases where the patients are medically complex, or when sensitive topics are at issue. We can and should ask clinicians to step up and embrace collaboration, transparency, and person-centered care. And we should plan to support them in this effort.

Leslie Kernisan is an internal medicine physician and geriatrician who blogs at GeriTech.

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