The curious side effects of medical transparency

The fundamental issue is one of audience. You always have an audience in any writing, and with healthcare notes this is especially true. The problem arises when you try to deny this, and in the process make everyone your audience, as what writing you need for one reader is very different from the writing you need for another reader.

In psychiatry this is especially problematic because you're essentially always trying to maintain rapport and a relationship with a client, and there are times when the most tactful and therapeutic thing to do is to withhold information at a moment, or even more often, present that information in a very specific way. The way you communicate with a patient is part of your job. You wouldn't behave toward a colleague in the same way you would a patient, but that's essentially what you're asked to do with open notes.

I can imagine the criticisms this might invite — that what I'm saying is an example of how patronizing psychiatry can be at times — but I think there's no way around this. I highly doubt you want your therapist talking to you like you like they would a close friend or colleague, for example, and no professional therapist would do that.

Open notes are this sort of weird wormhole through the provider-patient relationship boundaries that typically exist, and in my experience they just lead to this odd coded language in notes, or pushing discussions offline into verbal discussions between colleagues, or something.

I do think patient records should be available to them, but I agree with others that it might be better to have certain levels of firewall for different types of notes. Some a patient might get immediately; others they might have to make a request for, or something.

It's a difficult needle to thread, but I'm not sure radical record transparency always everywhere is quite optimal.

   > Furthermore, simplified metrics frequently distort incentives. If graduation rates are the metric by which funding is determined, then a school might do whatever it takes to bolster them. Although some of these efforts might add value to students’ learning, it’s also possible to game the system in ways that are counterproductive to actual education.

   whenever a metric becomes a target, it ceases to be a good measure

In the case of medical records, I believe doctors should have the option to write two notes: One accessible to the patients and the other for medical staff, without the option of sharing it. I fear the consequences of their work being so transparent could ultimately lead to bad communication and in the worst case leading to the wrong treatment.

[0]: https://en.wikipedia.org/wiki/Goodhart's_law

Think of your profession. Count the number of people that are not qualified for the job, or that are actively doing drugs while on the job. Now count how many of those get fired and pushed out of the profession, via judge, customer reviews, bad industry rep, or loss of license.

Now doctors. Do you think there are doctors not qualified for the job ? Or on drugs ? Because, there are exactly zero doctors pushed out of the practice of medicine.

That should answer a few questions about whether you can implement transparency.

I thought one point in particular was very well made: transparency in and of itself should not be a goal. We should have a specific outcome we're trying to achieve, and transparency should be an option, but not the only option considered. For the medical case, maybe the goal is improving portability of medical records (critical!) but we need to think about what mandating transparency does to all the things the doctor mentions (people using Dr Google, oversharing to family members, etc).

    > Historically, the medical profession has had little use for transparency. Grave diagnoses were routinely withheld, on the assumption that they would further patient suffering. The Black men who participated in the infamous syphilis study at Tuskegee, in 1932, were not told that the trial aimed to study untreated syphilis, nor were they made aware of—or offered—penicillin, which became widely available the following decade. Generations of patients with mental illness were often institutionalized with little or no information released to them or their families.
    
    > There are strong ethical reasons, therefore, to pursue transparency in the medical record. But, as Pozen points out, we should not be lulled into treating transparency as a first-order good, like compassion, respect, avoiding harm, or putting the patient first. In a recent survey of more than eight thousand patients conducted by OpenNotes, nearly all the respondents said that they preferred immediate access to their test results, even if their doctors hadn’t yet reviewed those results. This was true even for the vast majority of people who said that they’d experienced increased worry in the face of results that were abnormal. It’s an understandable preference—one that every patient has the right to hold. But simply throwing open the medical record and calling it a day allows us to rest on our laurels without doing the hard work of fixing what’s inside. Police departments often point to body cameras as evidence of accountability without actually addressing the problem of police violence. Lawmakers can laud themselves for their transparency via C-span without having to engage in the gritty compromise needed to move legislation forward. Transparency might better be viewed as one possible means to desirable ends—not an end in and of itself.

An example of this is Cystic Fibrosis research. For decades, CF was the only field with any concrete data on patient outcomes, mostly due to efforts by the Cystic Fibrosis Foundation. This data is fairly conclusive. Specialists aren't all alike. The difference between the best doctors and the below average/average ones is measured in decades.

    > It is distressing for doctors to have to acknowledge the bell curve. It belies the promise that we make to patients who become seriously ill: that they can count on the medical system to give them their very best chance at life. It also contradicts the belief nearly all of us have that we are doing our job as well as it can be done. But evidence of the bell curve is starting to trickle out, to doctors and patients alike, and we are only beginning to find out what happens when it does.

The medical field as a whole is poorly designed. For example, it has been known and acknowledged for decades (longer than my lifetime) that the medical residency system doesn't work. It was designed by a doctor who was high on several grams of cocaine at a time and required other people to keep up with his frenzied addiction (and death toll). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7828946/ https://magazine.columbia.edu/article/cocaine-addict-who-cha... We've known for several decades that the current residency system kills people, https://en.wikipedia.org/wiki/Medical_resident_work_hours#Ef... Asking overworked, tired, barely functional students to make life and death decisions on the fly after being awake for 16 hours has been a recipe for disaster for decades. But despite laws, nothing much has changed.

Much of the medical field is like this. We know that checklists reduce mortality and medical errors — https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069616/, but the field refuses to implement them broadly; viewing it as a waste of time, https://qualitysafety.bmj.com/content/21/3/191.short , https://www.researchgate.net/profile/Joseph-Keebler/publicat...

    > Zeeni et al. (2014) cited a number of reasons why clinicians may resist the use of checklists, including the perception or fear of the loss of independence associated with read-do checklists that renders them subservient to the checklist and does not leverage their skill and knowledge (Catchpole & Russ, 2015). Other concerns cited by medical professionals regarding checklists include that checklists are often thrust on them by administrative fait accompli, checklists do not consider the unique challenges of their individual circumstances, their use may complicate an already complex task (Catchpole & Russ, 2015), and their use may be seen as a sign of weakness or lack of competency (Gaba, 2013).

    > Death by medical error or accident is the nation’s leading cause of accidental death, exceeding all other causes of accidental death combined. Medical error and accidents kill approximately as many people each month in the U.S. as Covid-19 did before vaccines became available.

https://www.nytimes.com/2007/05/17/business/17quality.html

Transparency may be painful and it is definitely not a cure all, but it is self-evidently better than the current status quo. Every time there has been the slightest degree of transparency in the field, it has lifted the veil on just how terrible most doctors are. Even these small efforts in transparency have helped shift the field towards better outcomes for patients through social pressure and patients voting with their feet.