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> Historically, the medical profession has had little use for transparency. Grave diagnoses were routinely withheld, on the assumption that they would further p

> 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 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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7828946/ https://magazine.columbia.edu/article/cocaine-addict-who-changed-medicine-forever 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#Effects_of_resident_sleep_deprivation_on_patients 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/ 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://qualitysafety.bmj.com/content/21/3/191.short , https://www.researchgate.net/profile/Joseph-Keebler/publication/330561453_Checklists_A_Review_of_Their_Origins_Benefits_and_Current_Uses_as_a_Cognitive_Aid_in_Medicine/links/5ddd6d9b299bf10bc329509e/Checklists-A-Review-of-Their-Origins-Benefits-and-Current-Uses-as-a-Cognitive-Aid-in-Medicine.pdf 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-ongoing-preventable-health-threat/ https://www.statnews.com/2021/08/04/medical-errors-accidents... https://www.nytimes.com/2007/05/17/business/17quality.html 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.

zefalt 3y ago
I don't know why some people on hackernews have such a bias for deriding physicians. If you don't like the care you get, go somewhere else and get another opinion. Of course the bell curve of probabilities exist in medicine...just like it exists in every other field or more broadly the universe. This article is about the potential downsides of radical transparency...not just the default level of transparency. For many years/decades, records have always been available to patients upon request. This new immediate availability is something entirely different and brings about another set of problems. Imagine having 15 minutes to see a patient, document on the chart, order labs/imaging, and provide disposition to a patient. Then, they have free reign to message you regarding some irrelevant piece of data in the chart or labwork that you need to respond to. Too much patient access does have problems, and I can provide you some mundane examples. I documented about an excoriation in one of my charts, and the patient calls back complaining that I called them a skin picker and wanted me to change my documentation. If you google excoriation, you do not get the medical definition or understanding of the word but a link to excoriation disorder. Another patient wonders why their eosinophil percentage is 0.1% above the upper limit of normal. To me, the chart serves more as a note to colleagues who have the relevant understanding to piece together what happened during the visit. Giving patients immediate access to their charts will have very little benefit in my opinion given the high prevalence of EMRs and easy access to charts for anyone that actually cares. To say that most doctors are terrible is one of the worst takes I've read. Most doctors are probably average, and their average medical knowledge is likely a standard deviation or two above the average patient. The whole death by medical error thing is also of uncertain evidence. See: https://www.mcgill.ca/oss/article/critical-thinking-health/medical-error-not-third-leading-cause-death https://www.mcgill.ca/oss/article/critical-thinking-health/m...
- areoform 3y ago
  > The whole death by medical error thing is also of uncertain evidence. See: https://www.mcgill.ca/oss/article/critical-thinking-health/m... I've read the McGill article before; what it fails to mention is that the analysis has been performed multiple times by multiple parties and the results have repeatedly converged on the same point: somewhere between tens of thousands of human beings to one hundred fifty thousand human beings (at the very least) have their lives cut short because someone messed up. These statistics are for the US alone. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070928/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070928/ https://effectivehealthcare.ahrq.gov/products/diagnostic-errors-emergency/research https://effectivehealthcare.ahrq.gov/products/diagnostic-err... And more often than not, their colleagues who spot the mistake don't report it, a fact that's neatly labelled as a "disclosure gap" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793994/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793994/ It is perfectly reasonable to argue that the estimates are wrong. In that case, the solution is quite simple. Record data on misdiagnosis and physician failure, but that's a solution that the AMA has opposed (while talking about the ethical duty of disclosing medical error, of course). > The AMA and the American Hospital Association vehemently opposed an attempt by President Bill Clinton to create a mandatory reporting system for serious errors. The groups launched a multimillion-dollar advertising campaign that said mandatory reporting would drive medical errors underground. From 2000 to 2002, they spent $81 million on lobbying efforts, according to campaign statistics collected by the Center for Responsive Politics. > Mandatory reporting was dead on arrival. https://www.kxan.com/investigations/a-long-time-before-congress-takes-up-medical-error-transparency/ https://www.kxan.com/investigations/a-long-time-before-congr... There is no other civilian profession where death at this wide a scale is acceptable. Or, is taken as a matter of due course. There is no other civilian profession where this has been the norm for centuries. Every time a plane crashes, we perform investigations, improve, and fix. Every time there's a loss of crew on a human-rated spacecraft (or a loss of an autonomous vehicle), there's an investigation to fix what happened. Every time a bridge or a building collapses due to structural deficiencies, there's an effort to study what went wrong and how to fix it. These reflexive investigations are pervasive everywhere. Except medicine. Every single time the veil has been lifted, there has been something deeply ugly underneath. For example, doctors are the reason why so many women end up falling prey to Goop, because medical professionals fail — at a systemic level — to take their concerns seriously. The problem exists everywhere from the GP level to surgery, > While associations were consistent across most subgroups, patient sex significantly modified this association, with worse outcomes for female patients treated by male surgeons (compared with female patients treated by female surgeons: aOR, 1.15; 95% CI, 1.10-1.20) but not male patients treated by female surgeons (compared with male patients treated by male surgeons: aOR, 0.99; 95% CI, 0.95-1.03) (P for interaction = .004). https://www.researchgate.net/profile/Angela-Jerath/publication/356887012_Association_of_Surgeon-Patient_Sex_Concordance_With_Postoperative_Outcomes/links/61b2bb4c358cc06c3f9a801b/Association-of-Surgeon-Patient-Sex-Concordance-With-Postoperative-Outcomes.pdf https://www.researchgate.net/profile/Angela-Jerath/publicati... For non-technical readers, https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562 https://www.health.harvard.edu/blog/women-and-pain-dispariti... https://healthjournalism.org/blog/2018/11/women-more-often-misdiagnosed-because-of-gaps-in-trust-and-knowledge/ https://healthjournalism.org/blog/2018/11/women-more-often-m... https://www.smithsonianmag.com/smart-news/western-medicines-woman-problem-180977925/ https://www.smithsonianmag.com/smart-news/western-medicines-... https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html https://www.nytimes.com/2022/03/28/well/live/gaslighting-doc... The problem is fractal and replicates across societal out-groups (and to a lesser degree for in-groups). For example, doctors saying things like, "black people have thicker skins," https://www.aamc.org/news-insights/how-we-fail-black-patients-pain https://www.aamc.org/news-insights/how-we-fail-black-patient... https://batten.virginia.edu/about/news/black-americans-are-systematically-under-treated-pain-why https://batten.virginia.edu/about/news/black-americans-are-s... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/ Pick your out-group for a given society and you'll find systemic medical failure. The in-group is rarely much better off; they're still subject to the same capriciousness, merely to a lesser degree. See: the systemic failure of doctors to diagnose heart disease, https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/behind-the-headlines/misdiagnosis https://www.bhf.org.uk/informationsupport/heart-matters-maga... > It looked at NHS data over nine years, which involved 243 NHS hospitals, and about 600,000 heart attack cases. Around one third, 198,534 patients, were initially misdiagnosed. If you're on the receiving end of care, it becomes very clear, very quickly that there's something wrong with the picture. When a field is this deficient, radical reform is necessary to save lives.

zefalt 3y ago

I don't know why some people on hackernews have such a bias for deriding physicians. If you don't like the care you get, go somewhere else and get another opinion. Of course the bell curve of probabilities exist in medicine...just like it exists in every other field or more broadly the universe. This article is about the potential downsides of radical transparency...not just the default level of transparency. For many years/decades, records have always been available to patients upon request. This new immediate availability is something entirely different and brings about another set of problems. Imagine having 15 minutes to see a patient, document on the chart, order labs/imaging, and provide disposition to a patient. Then, they have free reign to message you regarding some irrelevant piece of data in the chart or labwork that you need to respond to. Too much patient access does have problems, and I can provide you some mundane examples. I documented about an excoriation in one of my charts, and the patient calls back complaining that I called them a skin picker and wanted me to change my documentation. If you google excoriation, you do not get the medical definition or understanding of the word but a link to excoriation disorder. Another patient wonders why their eosinophil percentage is 0.1% above the upper limit of normal. To me, the chart serves more as a note to colleagues who have the relevant understanding to piece together what happened during the visit. Giving patients immediate access to their charts will have very little benefit in my opinion given the high prevalence of EMRs and easy access to charts for anyone that actually cares. To say that most doctors are terrible is one of the worst takes I've read. Most doctors are probably average, and their average medical knowledge is likely a standard deviation or two above the average patient. The whole death by medical error thing is also of uncertain evidence. See: https://www.mcgill.ca/oss/article/critical-thinking-health/medical-error-not-third-leading-cause-death https://www.mcgill.ca/oss/article/critical-thinking-health/m...

areoform 3y ago
> The whole death by medical error thing is also of uncertain evidence. See: https://www.mcgill.ca/oss/article/critical-thinking-health/m... I've read the McGill article before; what it fails to mention is that the analysis has been performed multiple times by multiple parties and the results have repeatedly converged on the same point: somewhere between tens of thousands of human beings to one hundred fifty thousand human beings (at the very least) have their lives cut short because someone messed up. These statistics are for the US alone. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070928/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070928/ https://effectivehealthcare.ahrq.gov/products/diagnostic-errors-emergency/research https://effectivehealthcare.ahrq.gov/products/diagnostic-err... And more often than not, their colleagues who spot the mistake don't report it, a fact that's neatly labelled as a "disclosure gap" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793994/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793994/ It is perfectly reasonable to argue that the estimates are wrong. In that case, the solution is quite simple. Record data on misdiagnosis and physician failure, but that's a solution that the AMA has opposed (while talking about the ethical duty of disclosing medical error, of course). > The AMA and the American Hospital Association vehemently opposed an attempt by President Bill Clinton to create a mandatory reporting system for serious errors. The groups launched a multimillion-dollar advertising campaign that said mandatory reporting would drive medical errors underground. From 2000 to 2002, they spent $81 million on lobbying efforts, according to campaign statistics collected by the Center for Responsive Politics. > Mandatory reporting was dead on arrival. https://www.kxan.com/investigations/a-long-time-before-congress-takes-up-medical-error-transparency/ https://www.kxan.com/investigations/a-long-time-before-congr... There is no other civilian profession where death at this wide a scale is acceptable. Or, is taken as a matter of due course. There is no other civilian profession where this has been the norm for centuries. Every time a plane crashes, we perform investigations, improve, and fix. Every time there's a loss of crew on a human-rated spacecraft (or a loss of an autonomous vehicle), there's an investigation to fix what happened. Every time a bridge or a building collapses due to structural deficiencies, there's an effort to study what went wrong and how to fix it. These reflexive investigations are pervasive everywhere. Except medicine. Every single time the veil has been lifted, there has been something deeply ugly underneath. For example, doctors are the reason why so many women end up falling prey to Goop, because medical professionals fail — at a systemic level — to take their concerns seriously. The problem exists everywhere from the GP level to surgery, > While associations were consistent across most subgroups, patient sex significantly modified this association, with worse outcomes for female patients treated by male surgeons (compared with female patients treated by female surgeons: aOR, 1.15; 95% CI, 1.10-1.20) but not male patients treated by female surgeons (compared with male patients treated by male surgeons: aOR, 0.99; 95% CI, 0.95-1.03) (P for interaction = .004). https://www.researchgate.net/profile/Angela-Jerath/publication/356887012_Association_of_Surgeon-Patient_Sex_Concordance_With_Postoperative_Outcomes/links/61b2bb4c358cc06c3f9a801b/Association-of-Surgeon-Patient-Sex-Concordance-With-Postoperative-Outcomes.pdf https://www.researchgate.net/profile/Angela-Jerath/publicati... For non-technical readers, https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562 https://www.health.harvard.edu/blog/women-and-pain-dispariti... https://healthjournalism.org/blog/2018/11/women-more-often-misdiagnosed-because-of-gaps-in-trust-and-knowledge/ https://healthjournalism.org/blog/2018/11/women-more-often-m... https://www.smithsonianmag.com/smart-news/western-medicines-woman-problem-180977925/ https://www.smithsonianmag.com/smart-news/western-medicines-... https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html https://www.nytimes.com/2022/03/28/well/live/gaslighting-doc... The problem is fractal and replicates across societal out-groups (and to a lesser degree for in-groups). For example, doctors saying things like, "black people have thicker skins," https://www.aamc.org/news-insights/how-we-fail-black-patients-pain https://www.aamc.org/news-insights/how-we-fail-black-patient... https://batten.virginia.edu/about/news/black-americans-are-systematically-under-treated-pain-why https://batten.virginia.edu/about/news/black-americans-are-s... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/ Pick your out-group for a given society and you'll find systemic medical failure. The in-group is rarely much better off; they're still subject to the same capriciousness, merely to a lesser degree. See: the systemic failure of doctors to diagnose heart disease, https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/behind-the-headlines/misdiagnosis https://www.bhf.org.uk/informationsupport/heart-matters-maga... > It looked at NHS data over nine years, which involved 243 NHS hospitals, and about 600,000 heart attack cases. Around one third, 198,534 patients, were initially misdiagnosed. If you're on the receiving end of care, it becomes very clear, very quickly that there's something wrong with the picture. When a field is this deficient, radical reform is necessary to save lives.