My experience is in psychiatry and behavioral health, where this issue becomes particularly acute. So much of this field depends on notes and reports — it's not that there aren't test results and so forth but so much of it depends on behavioral observations and the content of what clients and their loved ones and others are saying.
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.
Great point. To add to that, a patient is often not the only reader on the "patient" side: their close family (spouse, parents etc.) will also be reading them, especially if they're helping with the therapy, and they'll also have their own sensibility to how it's presented.
I think in most open record systems there's provision for retaining info from the patient in case it could objectively lead to negative consequences, but this is indeed a complicated choice that arises patient by patient.
It is complicated. I was working in a state psychiatric ward during university, and the ward psychiatrist had noted in the patient's chart that after meeting the patient's mother, he suspected a genetic etiology of the patient's condition. In other words, the patient's mother was also crazy. The patient's mother, having received legal access to the chart, read that, and was now suing the state. The earlier comments in the thread about the target audience was spot on. Radical record transparency may perhaps not always benefit health professionals, unless of course, some things are just not recorded - and that may not benefit the patient.
On what grounds? This sounds like a problem with the legal system, not medical transparency. Though I can empathize with medical professionals having to work in the legal system that we have, not a hypothetical perfect one, I'm very apprehensive of restricting transparency on the grounds that, if people saw what was going on, they may take legal action. It may have been frivolous in this case, but...
therapy notes should be confidential. the patient, and only the patient or a person explicitly authorized by them should have access after the therapy concluded
That's what I had in mind, with potentially legal representants in specific cases (small kids and/or the patient is diagnosed as needing them to step in)
Therapy notes will have a high chance of including observations about these authorized persons and how they affect the patient.
When you use a consultant (not specifically a medical one) there is a continuum between the following types:
1. Template driven: the consultant has a few templates which your problem has to match. A good consultant will tell you when your problem is outside their scope of their advice, or is nevertheless not actionable, but they don't always have the context to do this. Your responsibility as a client is to make sure that their advice will work and not cause other problems in your context.
2. A mentor: more flexible than the previous, they help analyse the situation and may do some (book) research for you. But their responsibility is limited to increasing your understanding and proposing solutions, the final decision and strategy for evaluating their solutions is still the clients.
3. Strategist: they take responsibility for ongoing management of the issue and making decisions. Actual execution of actions are still the clients responsibility but if there is an issue the consultant takes responsibility for figuring it out and either devising a way to proceed or finding an alternative approach.
The problem with medical professionals, especially mental health, is that the impression is given that they are going to be 3, but often end up being 1 or 2, and the patient or carer needs to be the strategist. There can be an annoying motte and bailey situation, with the professional insisting that they are the strategist when the patient wants to question the approach, but falling back to being the mentor when progress isn't being made.
Anyway the problem for records is that in mental health transition between these approaches needs to happen. The patient might have needed the psychiatrist to be the strategist when they were in a crisis, but then need to take over that role if the proposed solutions aren't working. When they do, they need honest and open records.
Psychiatry as a pseudo-science often relies heavily on unscientific and non-empirical methods of diagnosis. There is no brain scan or blood test to detect or even rule out bipolar disorder or schizophrenia, you just go with whatever the doctor feels like when the patient comes in off the street.
Psychiatry is worse than veterinary medicine: a dog can't talk to you and tell you what's wrong; neither can a dog lie to you or be a deranged, unreliable narrator. Psychiatrists often ask questions which have a specific context or particular technical meaning to them, and the mentally ill will answer out of ignorance, or with a non sequitir, that seems counter-productive to the process.
I have often obtained medical records (it's interesting to see how difficult this can be, and the bureaucratic tricks that can be played to avoid complying with laws that allow us that access.) I've been incensed to see inaccuracies and often dismayed to see the state of things from the provider's perspective when I came to them in crisis. For example, there was one note that just indicated I'd been a chronic, habitual daily user of marijuana for years upon years. Nothing could be further from the truth. But there it is in my medical record, proof against any legal challenge, their word against mine, and God forbid I attempt to challenge it in a followup session, because I'm a crazy, unreliable narrator with a reputation for denying the truth.
It is dismaying that so-called "medical" professionals should withhold the truth from patients and are perfectly allowed to obscure anything in the chart that they judge to be detrimental to treatment. My psychiatrist is consistently unwilling or unable to describe the first-order effects of my medication, what benefits I should hope to enjoy from them, or just in a general sense why am I taking this toxic crap.
My psychiatrist freely admits to diagnosing me solely on affect. If I am sociable and pleasantly greeting people in the clinic, then I'm having a good day and I'm near baseline. If I'm reserved and sensitive, and have difficulty answering her questions, then I'm a good candidate for hospitalization! I was literally steps away from being forcibly committed after one video appointment that went poorly. A video appointment!
I try to read everything I sign, but it's fruitless to try to stay ahead of any medical bureacracy. One day I came in to file a request for my complete chart. The condescending jerk who filled it out put in my name instead of the clinic's, so I was requesting records from myself. Guess how long that took to fulfil.
I acknowledge your psychiatric care/experience may have been subpar, but want to point out that many close friends of mine have dramatically bettered their stations in life via psychiatric (and therapeutic) care, and that, pseudoscience or not, it’s worth considering if something ain’t tickin right upstairs.
Absolutely. Psuedo-science at best. Psychiatry in America is no more scientific than phrenology.
These people are charlatans, not scientists. Science only works when you can run repeated experiments in controlled conditions with fast feedback loops. Those conditions are not, and will never be, present in humans. The whole industry is a fraud. I came across a great term the other day: the Mental Health Industrial Complex.
If you want to get on the right track for how the brain actually works pickup Minsky's Society of Mind.
> If you want to get on the right track for how the brain actually works pickup Minsky's Society of Mind.
I was with you until that last sentence. What you call the "Mental Health Industrial Complex" is the modern-day equivalent of the Catholic Church prior to the Enlightenment. The cure to the ills of Catholicism wasn't reading the Quran (Minsky's Society of Mind) instead of the Bible (the DSM). It was, as you said, turning away from dogma and towards science, rationality, and empiricism.
Like the DSM, Minsky's work presents many useful models for thinking about the mind, and I might even agree that they are more useful. However, what we really need to do is not just change our models, but acknowledge that modern clinical psychology is built more on tradition and authority than it is on the testing of such models.
I'd agree with you. My sentence was bad in that it oversells that book. That book is merely one baby step in the right direction.
As excited as I am about Minsky's hypothesis that the brain is a society of agents, your point is the more important one that the process is more important.
I also think Minsky would have agreed with you. His process seemed to be the Feynman "What I cannot create, I do not understand" approach. His thoughts on the brain were developed from building robots and multi-agent simulations and AI. Whereas the DSM says "here are the conditions, take this pill, pay us", he would say "we have no idea, let's keep building until we understand".
I mean it's true that doing scientific psychiatry is hard, and a lot of the industry is subpar (and actually the majority do not really closely use psychiatric research results, forgetting how good they are or not). But what alternative exactly do you want? To just give up? There are some parts of psychiatry that have fairly well-validated conclusions at present, and hopefully that will (albeit likely slowly) progress.
Continue neuroscience research; stop pretending psychologists and psychiatrists are more than cranks; admit the pills don't work. Basically quit pretending that this is a science. The problems are not biological that can be solved by pills, the problems lie in society, not individuals.
Yeah, that's just nonsense. There are certainly many societal ills that do not help. But your broad brush there is entirely wrong. Though I doubt any kind of legitimate discussion would sway you from it.
I genuinely find it hard to see the legitimate scientific foundation of psychiatry, and would love to be persuaded that there is one. At the moment, I see the profession as overall more harmful than beneficial to health, and it's sad to see people treated this way.
Is there substantial evidence that psychiatric treatment improves quality of life in the long term?
Can we say with any confidence that our culture and health is broadly better thanks to psychiatry than it would be without?
If there are well validated studies, I would be interested to read them. In particular, are there any long-term studies to justify the drug regimens and the recommended doses which so many people are advised, or forced, to take for decades?
Are there well-validated biomarkers that can reliably support any psychiatric diagnoses?
Many fields of medicine, such as mental health, are far closer to religion or politics than they are to science.
Science requires controlling the environment and the ability to do repeated experiments with rapid feedback. The mental health field cannot do that. It can on worms. We could build the most amazing medicine for worms (by killing trillions of them). But we cannot do that with humans.
The Mental Health Industrial Complex deserves no respect. It may turn out that psychedelic mushrooms that someone could grow for free in their yard could have saved millions of lives over the past 50 years, but that would have deprived the MHIC of tens of billions in revenue. The field is built on lies.
Dude neuroscience departments at pharma companies have been dropping like flies precisely because they are so fucking bad at finding new effective drugs for mental illness. Old shit like Prozac and Adderall doesn't do much for them financially, but most new psych drug clinical trials fail.
There's no conspiracy there, and in fact the absolute rot that pervades most of academic science is just as culpable for the incompetence part as the psychiatry side. I'm pretty sure drug companies would love to be less incompetent at making psych drugs.
And as far as therapists making money - well demand way outstrips supply and most people do combination treatment with drugs and therapy. So no shrooms would not make therapists go out of business, unless you've been deluded into thinking that's a magical cure for all mental illness (and if you really think it can cure all psychotic illnesses I have a bridge to sell you).
I don't think shrooms should be illegal but a lot of politics surrounding drug prohibition that have jack shit to do with the "mental health industrial complex". By the way therapist is generally not a very well paying job.
I find it interesting you didn’t give a specific example of needing to “keep secrets” from a patient.
You’re right — this comes across as patronizing and focusing on your own needs ahead of patient needs.
Your field cauterized off clits to treat hysteria and mutilates children despite no proven benefit today. What makes you think you have the credibility to decide what needs to be secret? — or that we’ll believe this is anything other than an attempt to obscure wrongdoing, as in most government secrecy?
Or someone who went through an intense trauma. Or someone who's done something terrible in a dissociative fugue. Or several different anxiety disorders/phobias. Or certain personality disorders come to think of it.
There's a lot of cases where certain information, if presented in the wrong way or at the wrong time, can be harmful to the patient, the relationship between patient and therapist, or both.
How does keeping secrets help any of those situations?
“I’m manipulating you for your own good!” sounds like you’re validating their delusions and fears. I’m just hearing the same excuse the government gives when they, eg, censor facts and promote misinformation for the “public good”.
Go ahead; explain to me specifically how it would help any of those cases — because this comes across as prioritizing the therapist’s convenience ahead of honesty with the patient.
Do you not see my point that engaging from a place of honesty and partnership rather than patronizing manipulation is superior, and that you’re causing harm with that mindset due to telling a lie that validates their fears, without actual benefit?
You don't have to lie to keep a secret. Not telling someone something is still keeping a secret, and is necessary in the scenario that you know something will trigger an episode in someone. There's also the factor of time. You may start talking about something previously left unsaid later on therapy, after you've established some trust.
It's really not any different than how people engage in normal relationships. How I talk to a stranger is different than how I talk to a colleague is different from how I talk to a friend. You need to first build a rapport before you can talk about certain things.
Sure — how does an institution keeping secrets from them help that situation?
From my perspective, you’re validating their delusion that institutional actors are trying to manipulate and control them; specifically how does keeping notes secret help that situation?
Go ahead, be explicit.
I think your failure to give an explicit answer even when asked points to this being a delusion on your part; so I’ll ask for you to give a specific example again.
I'm not the OP lol, I'm just telling you that some people are off the rails delusional and it's not about withholding information at that point. Do you think that little children should be told 100% factual medical information regardless of circumstances? Do you think an elderly patient with dementia should still be trusted with their own medical decisions?
There are not easy answers to these questions sure, and one might be philosophically opposed to the withholding information route, but as far as pure patient outcomes there are absolutely situations where a lie is helpful. The placebo effect is a big one btw. Pretty sure telling a patient with social anxiety that they suck at socializing is not the right play 100% of the time.
So… you don’t have a specific example of how it helps?
Yes, you should be honest with children about their medical condition. Similarly dementia patients. Why wouldn’t you?
Asking about “trusted with” is a non sequitur because we’re not talking about whether people should be dependents that require care — but whether doctors have a right to conceal information.
Again, why would you write “suck at socializing”? — but are you envisioning some situation where someone seeing a therapist for social anxiety would be harmed by “struggles with social skills” or “doesn’t have fully developed social skills” would be news to the patient? …c’mon. The patient already knows that; they’re there to get advice on how to address that. And a therapist telling such a transparent lie to someone with social anxiety seems likely to do more harm than good.
Again, go ahead and be explicit about how you think medical professionals concealing notes will help — I think it’s very strange you’re so adamant but can’t be explicit.
> 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.
It's amazing to me how often Goodhart's Law can be observed in the wild, and I've come to believe it is an important enough concept that it should probably be something (along with logical fallacies and other concepts related to critical thinking) that should be prioritized above a lot of other things taught in high schools.
So when you tell execs goodhart's law, they ask, ok what can we do about it when managing large organizations? Be it a 200 person department of a 30'000 person organization or even more?
The usual argument is you need a metric and a check metric that can catch gaming the first. Eg unit sales and mean price per sale — the latter preventing a race to the bottom on price point.
You need at least a dozen to prevent gaming of the first. It's not even that hard, but you do need to be aware that you need many distinct metrics and you will bring at least one down at least somewhat, and hopefully by repeated iteration you will end up with everything better.
And what prevents that when it becomes known there are n+1 metrics to game? And your doing this in a large organization, so it is statistically inevitable that people will want to game the metrics, bad actor or not?
The best approach is really hard. (Which is why proxy metrics in the first place.)
The best approach is to have a -very- clear set of goals, and to accurately measure progress to those goals, not to proxy metrics or goals.
Yeah, I know, easier said than done.
Usually a business has multiple goals, which are complementary. Enumerating, and measuring these make the system harder to game. Or more accurately make it harder to get better metrics without also getting closer to the actual goals.
If you want sales,then measure sales. If you want growth measure that. If you want customer satisfaction then measure that. If you want happy employees then measure that. List -everything-, measure everything. Understand the tensions, improvement in one area can drop the metrics in another. So work to keep improving them all.
All of this is -hard-. So most places don't bother. Find a simple measure (say stock price or turnover or profit) and ignore sustainability etc.
i dont understand how this relates to transparency. nothing about giving patients the right to access their own medical records involves metrics in any way.
ok, i kind of understand that, but it is still very different than a metric.
metrics become problematic because they are reductive and they are tied to compensation, promotion, or other rewards.
here we are talking about a raw dump of all data, which is the opposite of a reductive metric, and there is no compensation or reward tied to providing the data.
Perhaps the opposite virtue of transparency is confidentiality: either or both can be good depending on the context, but sometimes they are mutually exclusive.
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.
> 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.
“state medical boards nationwide took away 692 doctors' licenses, or seven per 10,000 physicians, in 2015, the most recent year for which data is available.”
Opinions may vary, but to me the difference between "so rare that it may be deemed not to exist" and "exactly zero" is not about semantics. (I see "exactly zero" as an absolute statement that therefore precludes such subtleties.)
Yup. I used to think "you need to be smart to be a doctor, so all doctors must be really good".
Then I worked in an industry that had doctors as customers and wow, no, there are a lot more very bad doctors, a ton of average ones, and only a handful of really, really good ones.
The best example was a drug we were basically pulling from the market because a new drug was so much better, we knew it was pointless to keep selling it. For 95%+ doctors, they stayed on top of the latest data and stop using it voluntarily.
There were a number of doctor we had to actively visit and tell them "hey, can you stop prescribing our drug? you realize it's practically malpractice considering this new drug is several orders of magnitude better" and they had never heard of the new drug despite it being on the market for over a year.
The selection process for doctors often creates some rather perverse outcomes. Medical schools are hyper competitive, and incredibly demanding. The most typical motives a person might have for enduring those demands are some combination of money, prestige, and the ability to do the rewarding work of helping people. So doctors basically have to be hyper competitive, able to endure incredibly demanding workloads, and could potentially be motivated by some combination or money, prestige and a desire to help people. But there’s no test for the altruistic motives in med school, and competitiveness tends to be more associated with seeking status than altruism, so med schools tends to serve as a selection mechanism for these more shallow personality characteristics. At the very least the common assumption that doctors have an innate passion for serving their patients is not valid. Even if it’s true that most doctors want to help their patients, it’s not necessarily true that their reason for doing so is aligned with the best interests of the patient.
In there defense, some of those newer drugs also have an order of magnitude increase in price. I'm sure your point still holds, but some Dr's also consider the patient's ability to afford these treatments as a "Quality of Life" issue too.
I thought this article somewhat buried the interesting part with lots of only tangentially-related anecdotes. I loved the doctors nuanced takes on what transparency can mean for medical professionals, and thought the other examples were misplaced (focusing not so much on transparency, but on other things like measurement difficulty, process adherence, etc). I was a little surprised that the section on transparency in government didn't touch at all on executive privilege which is obviously a big topic right now.
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).
> I thought one point in particular was very well made: transparency in and of itself should not be a goal
That is indeed a point that the article makes, but it ignores a significant problem. Good medical practice relies on the patient's informed consent. I'm not the doctor's plaything, their problem to solve, the doctor is there to help me make good decisions on my own health.
If the doctor has private thoughts about me and my condition, thoughts that they don't think they should share with me, those should not be part of the treatment decisions, since I should be given all relevant information about my treatment before consenting to it.
So, I would say transparency of records is actually a good in itself, insofar as it is almost equivalent to informed consent, which is a basic human right.
Of course, things are not so simple in cases like psychiatry, where coercive treatment is sometimes necessary.
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.
> 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.
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.
> 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.
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.
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/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://effectivehealthcare.ahrq.gov/products/diagnostic-err...
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.
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).
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,"
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-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.
> I welcome the day artificial intelligence makes most doctors obsolete.
Guess you deleted this part.
When this becomes reality, let me know. If a better system existed given the current set of parameters, I believe it would have come into existence. Give me any medical condition, and I would take my chances in the US healthcare system over any other option.
My argument is not that physicians are error proof or that they don't cause harm through errors. It is to refute your claim that "most doctors are terrible".
Your AI system would only be accurate at diagnosis if it has all the pertinent data and unlimited resources. Patients often provide an unclear history, their symptoms are not common for their underlying condition, and there are not enough resources to do a full workup for every complaint.
Regarding your second link regarding misdiagnosis in emergency rooms, you just need to look at the PERC rule or the HEART score that ED physicians use for evaluating for pulmonary embolus or acute coronary syndrome to get a somewhat clearer picture of the deviation. Even with scores of zero, there will be a substantial amount of missed diagnoses. Not everyone who goes to the emergency room is going get a full cardiac evaluation or a CT angiogram of the chest if their symptoms don't suggest the illness. There are not enough resources to do this.
Of course other civilian professions don't have death rates this high. They don't deal with dying people every day. Again, I'm not claiming that the medical field is perfect as it is. I just believe you are mischaracterizing data for which there are many intricacies.
You are also throwing out a lot of strawmen regarding race and sex which bears little relevance to your initial claim.
Regarding your final piece of data about the amount of misdiagnosed heart attack cases, look at the following sentence in the same article
> It estimated that, if heart attack patients were correctly diagnosed initially then – over the decade of study – over 250 deaths per year might have been prevented.
250 * 9 = 2250 preventable deaths over a 9 year period.
Far less alarming than the data you present of 198,534 missed diagnoses.
Healthcare still follows the basic supply/demand curve, and demand is at record levels. It's just as capitalist as much of the rest of the economy. State regulations regarding professional licensure do serve as a limiting factor for supply, but many fields also have similar licensing requirements before being able to practice.
Most doctors do not make more the sicker you are. The majority are salaried though some organizations do provide extra depending on volume seen or RVUs. They also have very little say on the volume as it is mostly decided by managers.
Some examples:
- patients with falls/trauma
- millions of obese individuals seeking treatment with GLP-1 receptor agonists for weight loss
- cancer
Certainly, these individuals were not made sick just so the healthcare industry could make a profit. Also, I don't believe there will ever be a perfect system.
It detracted from the overall point. But yes, I do look forward to the day artificial intelligence mostly replaces humans in this industry. I think the benefits are self-evident.
> If a better system existed given the current set of parameters, I believe it would have come into existence.
One of these "parameters," as your call them, includes the AMA and doctors restricting the number of new doctors who can be trained in the past https://usatoday30.usatoday.com/news/health/2005-03-02-docto... , actively fighting against allowing Nurse Practitioners and other trained providers from providing routine services that would lessen the requirement of doctors https://blog.petrieflom.law.harvard.edu/2022/03/15/ama-scope... , fighting against collection of misdiagnosis data (as mentioned above), lobbying against banning pharmaceutical companies from giving money or gifts to doctors (in fact, the majority of doctors say that accepting these gifts is OK, despite research repeatedly showing that these nudges change behavior and lead to practises like overprescribing opiates — https://www.statnews.com/2020/12/04/drug-companies-payments-... ), refusing to adopt practises that reduce mortality (see: the checklist example from above) and on and on.
This trend is not unique to the US. Similar efforts exist everywhere doctors do. The profession was associated with status in the past (and still is). Doctors are fighting and have fought tooth and nail to preserve the benefits they accrue from this status.
As you're a physician, I think you should take a moment to put yourself in the shoes of a third party. Imagine there's a Profession X. Members of this Profession X, and organizations that represent Profession X, have fought to make outcomes of people who interact with them worse in measurable ways. What would you think if a member of Profession X made an equivalent claim? Would you give it equal weight?
> Your AI system would only be accurate at diagnosis if it has all the pertinent data and unlimited resources
No, it doesn't need unlimited resources. Just better sensors and more data. We'll get there sooner or later. It's an inevitability. There are too many smart people working towards this end because of the reasons outlined above.
> Patients often provide an unclear history, their symptoms are not common for their underlying condition, and there are not enough resources to do a full workup for every complaint.
Medicine is the only profession I know of where its practitioners fight against gathering more data points. The argument goes that the more you look, the more you find and that's bad etc.
If you take some time to reflect on it, these fairly common claims make no sense. The more data we collect, the more data we have to understand what the true distribution of human biology looks like. The more data we have, the more information we can gather to better understand how to treat when needed, and distinguish between things that are critical and aren't.
As to the claim that there aren't "enough resources," the truth is that we can create the resources. Lateral flow tests, for example, have dropped significantly in price and what we can test with them has greatly increased. We can also automate how these tests are read — an effort I've been peripherally involved in. We can build labs on chips and mass produce the silicon, https://en.wikipedia.org/wiki/Lab-on-a-chip . We can take commodity sensors and use better algorithms to detect subtle things — for example, using IMUs on a patient's bed in an ER setting as a type of ballistocardiograph to passively monitor their heart function.
We have the technology to do all of this and more. We also have the capability to invent new things that do more. But we choose not to. This status quo is a choice.
> Regarding your second link regarding misdiagnosis in emergency rooms, you just need to look at the PERC rule or the HEART score that ED physicians use for evaluating for pulmonary embolus or acute coronary syndrome to get a somewhat clearer picture of the deviation. Even with scores of zero, there will be a substantial amount of missed diagnoses. Not everyone who goes to the emergency room is going get a full cardiac evaluation or a CT angiogram of the chest if their symptoms don't suggest the illness. There are not enough resources to do this.
> 250 * 9 = 2250 preventable deaths over a 9 year period.
> Far less alarming than the data you present of 198,534 missed diagnoses.
With all due respect, I feel like you've validated my argument in these paragraphs. Medicine is a safety critical industry that doesn't behave like it's a safety critical industry.
If a process had a 33% rate of failure, for any other safety critical system, there would be a sustained effort to research and develop a better alternative.
Perhaps we need better sensors — maybe we could embed a dozen or so IMUs around the patient and measure the forces to see the performance of their heart https://journals.biologists.com/jeb/article/225/10/jeb243872.... Perhaps we need to expand the metrics we look at. Perhaps the way things are measured at the bedside should be changed. There are many things we can do to reduce the absurdly high process failure rate of 33%.
Detecting and treating disease early leads to better outcomes. 198k people were denied this better outcome.
> 250 * 9 = 2250 preventable deaths over a 9 year period.
The data is for the UK. As the population is roughly a fifth of that of the US, let's do some rough math and multiply that number by 4 (instead of 5, to be conservative). That's 1,000 lives per year, or a death every 8 hours.
What does this rate look like when compared to other safety critical systems? The one I'm most familiar with is aerospace. Within civilian aerospace, parts are rated to 1 failure in 1 billion hours of operation. Or, more broadly, safety critical systems are designed to hit the goal of 1 death per 1 billion hours. https://dl.acm.org/doi/10.1145/332051.332078
> Of course other civilian professions don't have death rates this high. They don't deal with dying people every day. Again, I'm not claiming that the medical field is perfect as it is. I just believe you are mischaracterizing data for which there are many intricacies.
All of the statistics I've given were for people killed via mistake. These are people who would have otherwise lived. They died because a medical professional made a mistake. That's an important distinction.
Furthermore, although medicine deals with the sick and the dying, it's not the only industry where a very small mistake could equal death.
Small mistakes, like a bolt not being tightened correctly, on an airplane can lead to catastrophic failure (and have!). And yet, an upward of 2.3 billion person trips occur safely every year via airplanes. Between 2012 and 2021, in seven of these ten years, no airliners crashed. No catastrophic failures occurred.
By contrast, the total number of ER visits is 131.3 million. As I've stated, tens of thousands of these visits lead to death for the patient via error. Per year.
Why are these fields so different?
I believe that the difference is in the margins. One has a culture of excellence. The other has the culture of shrugging. The smallest change in outcome probabilities adds up for processes. Improving a process by 0.5% to 0.05% per case doesn't seem like much, but it adds up.
Interestingly enough, great doctors recognize this. The very best doctors fight in these margins,
> “Let’s look at the numbers,” he said to me, ignoring Janelle. He went to a little blackboard he had on the wall. It appeared to be well used. “A person’s daily risk of getting a bad lung illness with CF is 0.5 per cent.” He wrote the number down. Janelle rolled her eyes. She began tapping her foot. “The daily risk of getting a bad lung illness with CF plus treatment is 0.05 per cent,” he went on, and he wrote that number down. “So when you experiment you’re looking at the difference between a 99.95-per-cent chance of staying well and a 99.5-per-cent chance of staying well. Seems hardly any difference, right? On any given day, you have basically a one-hundred-per-cent chance of being well. But”—he paused and took a step toward me—“it is a big difference.” He chalked out the calculations. “Sum it up over a year, and it is the difference between an eighty-three-per-cent chance of making it through 2004 without getting sick and only a sixteen-per-cent chance.”
From the cystic fibrosis piece.
Medicine has failed to broadly adopt this culture.
> You are also throwing out a lot of strawmen regarding race and sex which bears little relevance to your initial claim.
They aren't treated seriously by their doctors. That leads to poor outcomes.
Ideally, medicine should take every possible cause of process failure seriously, especially if that cause is observed to be this common.
A small piece of stone fell off the facade of a building in NYC, killed someone like 50 years ago, now we spend billions up-keeping buildings every year. How the hell is anything in the medical industry not held to at least that standard.
And then people wonder why mask mandates don’t work, and there is a mistrust of vaccines and doctors.
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.