[HN Gopher] The curious side effects of medical transparency
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The curious side effects of medical transparency
Author : pseudolus
Score : 37 points
Date : 2023-04-29 19:08 UTC (3 hours ago)
(HTM) web link (www.newyorker.com)
(TXT) w3m dump (www.newyorker.com)
| areoform wrote:
| > 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.
|
| Yes, patients need to be educated, but we shouldn't mince words.
| The real reason for this protest by the _broader_ field (and not
| this particular author) is that most doctors are terrible at
| their jobs.
|
| 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.
|
| http://www.newyorker.com/magazine/2004/12/06/the-bell-curve
|
| 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/ 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, 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).
|
| Being a physician was a socially powerful role. That's not true
| anymore. The hierarchy has changed, but the field hasn't changed
| in response. Broadly speaking, a physician's discomfort is given
| more importance than a patient's life. It shouldn't be a surprise
| that medical error is a leading cause of _accidental_ death.
| > 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.statnews.com/2021/08/04/medical-errors-accidents...
|
| 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.
| wcerfgba wrote:
| Perhaps the opposite virtue of transparency is confidentiality:
| either or both can be good depending on the context, but
| sometimes they are mutually exclusive.
| sbr464 wrote:
| Is there a video archive of complete surgical procedures
| available?
| cprayingmantis wrote:
| Probably not very many. Fun anecdote: When the Google Glass
| first came out I wanted to use it to record procedures so that
| we could create an annotated video dataset of medical
| procedures to see if we could match outcomes to actions. When I
| talked to medical professionals about it though they told me no
| Doctor would wear it for fear of malpractice lawsuits so it
| never really got off the ground. I guess you could go the
| opposite way and talk to the insurance companies about forcing
| surgeons to wear it but that didn't sit well with me.
| rhco wrote:
| https://web.archive.org/web/20230429202757/https://www.newyo...
| flybrand wrote:
| 2023: Articles about transparency hidden behind a paywall.
| doodlesdev wrote:
| Disable JavaScript
| IG_Semmelweiss wrote:
| Here is an thought for you:
|
| 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.
| watwut wrote:
| > Because, there are exactly zero doctors pushed out of the
| practice of medicine.
|
| This is exactly not true. You might argue too little doctors
| are pushed out, but you did not. A doctor loosing ability to
| practice medicine is an actual real world thing.
| doodlesdev wrote:
| > 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.
|
| I thought this part of the article particularly interesting. The
| problem is not just the access to data, but the obsession to
| optimize the numbers shown. The solution is to understand that:
| whenever a metric becomes a target, it ceases to be a good
| measure
|
| Which is known as Goodhart's Law [0]. The problem with
| transparency and any kind of data is that you should be very
| careful when choosing your metrics and targets, as statistics can
| be deceiving. Unfortunately, this is probably too complicated to
| institutionalize in large groups of people who might not get the
| point, so ultimately a balance has to be chosen between
| transparency and confidentiality.
|
| 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
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