[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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       (page generated 2023-04-29 23:00 UTC)