[HN Gopher] The curious side effects of medical transparency ___________________________________________________________________ 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 ___________________________________________________________________ (page generated 2023-04-29 23:00 UTC)