The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.
In the absence of such a thing OpenAI is already quite good, some theoretical perfect shouldn't be trotted out as a counter if it doesn't actually exist.
Today you can try to cajole your human doctor into listening more, or ordering more tests, or considering things you heard online or from acquaintances. AI will be guided to take that into account less because a doctor being more sympathetic and bypassing "standard practice" is an expense caused by humanity that the machine can be trained to avoid.
Today you can go across town and try your luck with another doctor. If it's all AI, you'll just repeat your story to the same basic model and get the same basic dismissal.
The problem arose from trying to make people behave like machines in order to save money. Making a machine behave like a machine ain't gonna help.
You need to shift the goal from "saving money" to "helping people." AI doesn't do that.
[citation needed]
How? I'd expect them to already have standardized lists of the most useful next thing to investigate given what's already known, and a modern "AI" would actually be worse at that than some sort of solver engine with a database of costs/risks (for tests) and conditional probabilities.
Maybe if they're still using (digitized versions of) paper flowcharts things could be improved, but the most powerful tech should be old-school stuff rather than modern "AI".
LLMs already work fantastically with pretty good UX.
It isn’t that it’s easy to do all a doctor does. But their training and knowledge shines in the 99th percentile case except they never exercise it there so you can usually get there with Google.
“Oh but an LLM will guess the common case and never think of the rare!”
Yeah but so will a doctor given 10 minutes on it. They’re not exactly going to House MD you. You’re gonna die.
But I understand what you're saying. Insurance gates these but could do so with their own tech rather than relying on the third party. Could help with keeping loss ratios at the minimum.
I can get into local dermatologists without problem. But an endocrinologist takes a referral (because there are so few, and they’re all fully booked).
I have no idea what good GPs serve besides flu testing. Sounds unfair but they generally seem uninformed about pretty common medical conditions.
I work in insurance. In my experience, the fact that you have to go to the doctor for a referral discourages people from getting said referral.
So the tradeoff is that you would get fewer referral-specific visits (i.e. person going to their GP to get a specialist referral) at the likely expense of more specialist visits.
Never had a problem just calling them up and making an appointment. Insurance never cared either.
In all fairness, I’ve been seen similar specialists for a while. That might make the situation different. “Continuing care.”
I've seen a lot of doctors who insist patients must be making up things when they say "but XYZ", and my question becomes...so what?
If someone credibly lies to you and gets codeine or ritalin or something once or twice...that's not really significant, in terms of negative outcomes.
If someone lies to reach a medical professional, then you treat them like any other bad customer interaction and stop doing business with them after some point.
(Bone tuberculosis)
Which project did you use?
We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.
https://www.wikipedia.org/wiki/Iatrogenesis
> In 2013, an estimated 142,000 persons died from adverse effects of medical treatment, up from an estimated 94,000 in 1990.
Careful what you wish for!
And, imo, an awful lot of deaths are due to issues that cannot be classified as caused by doctors - eg dosage error over time, something that mitigates symptoms but allows the underlying to deteriorate, etc.
I simply don’t think we have the medical knowledge necessary yet to know what the “right” number of health care professionals is.
Yes, unfortunately we've made doctors the gatekeepers and they don't want more doctors because that will eat into their income. This happens with every single licensed occupation where the license body is run by members of the occupation, with the possible exception of bar associations.
My theory on that one is that the more lawyers you have in society the more lawyers you need because lawyers do a great job creating work for one another (both through litigation but also through legal documentation which needs to be read and interpreted by other lawyers).
They currently have a senate bill to increase funding and incentivize the most needed specialties (GP and psych). We'll see how that goes. At this point, it feels like interest in being a doctor has diminished - there's too much training, many specialties don't pay well enough to justify the delayed earnings and costs, the hours can be miserable, and it's a nightmare to deal with all the regulations and legal aspects.
No, that’s the proximate issue. The main issue is the requirement of residencies for all doctors in the first place. In particular, I’m referring to doctors from other countries who may have years or even decades of experience practicing medicine being required to compete for residency spots. These doctors infamously end up driving for Uber instead of practicing medicine.
Contrast that to my cousin who moved to Australia and was quickly accepted as a practicing physician.
We can expand US MD and US DO schools and fill our thousands of unfilled Family Medicine, Internal Medicine, and Pediatric Subspecialty residency slots first!
It’s the tyranny of the status quo. Milton Friedman was complaining about this more than 50 years ago.
Perhaps you could have them in some accelerated program, but i think it makes a lot of sense to require doctors to train or prove themselves in the specific country/region using the standard practices, tools, etc customary there. I wouldn't want a US doctor operating on me in India since they're likely to make assumptions and recommendations for treatment that overlook local practices, resources, etc.
The surgeon from Mumbai can come in and prove their worth through a surgical residency. That’s completely fair.
But there is no point in pretending doctors are going to surge, the current administration is trying to make being a doctor harder, not easier. Doctors also avoid certain fields because it doesn't pay enough. The supply is also artificially restricted. It's a system so fucked that it's better to ignore it and pump out PRNs
Heaven help us.
I feel like that's a relatively novel insight. These days I hear about endometriosis once a month or so, mostly because of outspoken women advocates. I could swear I've never heard of endo before 2020.
As an example, the Australian National Action Plan for endometriosis is from 2018. Perhaps the currently practising generation of doctors did not have this kind of awareness during their training, and the next generation will fix it?
Imagine if asking a specialist the time meant they had 3 broken clocks on the wall and picked one.
That’s pretty much how initial medical diagnoses are done.
Insurance companies then limit what’s types of care/investigation can be done for various conditions.
Doctor may know that medicine X will work best but insurance demands that Y and Z be first tried before covering X. Same with tests.
I’m tired of it.
What’s with the stupid “here’s the cost” bill you get, followed by the insurance company just, like, deciding things are a different price? What’s with the unreasonably stupid “out of network” medical charges? What’s with the fact that you can walk into a pharmacy and request a discount, but they can’t tell you about it once the transaction has been rung up?
There are SO MANY stupid rules in this system, I literally cannot imagine a system with more low-hanging fruit.
Why are you defending this awful, awful system? Have you had even one good experience? Not “well, that wasn’t awful”, but truly one GOOD experience?
Hospitals here don’t even follow up to see if your medical care was effective.
Hell, I’d even take Australia’s approach, where basic stuff is free and you pay for additional coverage.
All of them read the first page of my medical records upon being admitted to a hospital in January. Not a single one of them read anything after that and it shows. One of them was stricken and amazed that I was walking into his office without aid or an oxygen mask.
Gives me great confidence in their ability to pay attention to detail.
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
Endometriosis is not rare. But it's a female disease. You will be shocked to know how many of diseases that women have to deal with are both quite common (some estimate up to 10% of women may have it), and completely ignored by medical community (which is still overwhelmingly male)
The article shows that 10% is a low estimate.
It is not completely ignored, but research is underfunded nearly to the degree that COPD is underfunded.
I think we need to distinguish two things here too: the bedside manner of doctors and whether they are willing to present the options that could lead to diagnosis, and then the amount of medical research that could give doctors some tools to better manage endometriosis.
White[1] males are extremely over represented in medical literature and research. And I'm saying it as a white male myself.
[1] This actually has ramifications beyond just gender. See e.g. https://www.statnews.com/2020/07/21/dermatology-faces-reckon...
I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.
My whole pelvis hurts when I have my period? Here's a motrin and an ibuprofen. Come back if it doesn't stop bleeding after a few days.
Like an effervescent abscess, the difference in treatment between males and females remains to this day. It's not even particularly hard to find female doctors that will outright dismiss symptoms in female patients because that's what they were taught.
I guess I must not be man enough to get the expedited treatment. Instead, I got a spinal cord injury and early stage bowel cancer.
I wonder how as a man, I can start convincing doctors in my country to give me this treatment all the other men are getting behind my back. Maybe next time I should start with dropping my pants first and hanging dong so they know im on their team.
At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.
There's a bias here, but its not about how common the disease is, but who it affects and how.
This worldview requires believing that doctors dgaf about their family members.
My general impression from half recalling whatever stories about new medical discoveries, is that the motivation is more often a problem that a family member of the researcher has rather than a problem that the researcher personally has.
It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.
Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.
To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.
Sorry to annoy you.
I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.
If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.
Basically my point is that the effect you mention likely has little actual impact on the larger medical field.
That's not actually a thing. A very high portion of premiums always has to be paid out. Not just because the regulators said so (IIRC the requirement is a 90% or 95% loss ratio?), but because they'd be undercut by a competitor long before they got in regulatory trouble.
A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.
(This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)
What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.
So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.
And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.
People want a pill to solve the ailments they have.
If you have high cholesterol and you decide to make lifestyle changes, you still have to go to the cardiologist. Because you have absolutely no idea if you actually lowered your cholesterol.
A big fallacy is people thinking they know if they are healthy or they know about their bodies. You don't. Even if you live a very healthy lifestyle, you still have to go to the doctor. You still need screening.
Most chronic diseases are primarily caused by lifestyle choices. This is largely outside the scope of medical practice. A doctor can prescribe metformin to treat type-2 diabetes and a statin to reduce cholesterol but they can't force you to clean up your diet and get some exercise.
Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
asking as someone that had it
CT scans are super valuable for all sorts of things, and the radiation dose/risk for an individual is small, but at a societal level using them freely as a "might as well" kind of test results in a lot of excess radiation exposure. This recent research suggests up to 5% of cancer diagnoses each year could be from CT scan radiation: https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-co...
The "incidental findings" side is an interesting dilemma: CT scans often reveal other stuff beyond what they were initially ordered for, but which can't be identified solely by the CT scan itself. So, if something looks a little weird on the CT scan it creates an imperative to figure out what it is, so there are additional tests, each of which carries its own risks and also consumes limited resources that might otherwise have been used for people with more definitively concerning findings. https://en.wikipedia.org/wiki/Incidental_imaging_finding
Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month.
100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides.
In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.
Biologic and small molecule options
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
Let me know :)
I've dealt with a handful of such specialists before, each of which thought they had discovered something everyone else was missing, so before I consider shelling out another five figures on hopeium, I'd love to read/listen to anything she's said publicly about what she's doing.
I do know some people see an improvement on migraines even on traditional BC, but the hierarchy is pretty much: nothing < traditional BC < mini-pills.
It is a bone of contention with my gynecologist that I am not willing to suppress my (screened and confirmed to be) perfectly healthy "ovulation axis" on the off chance it might decrease my headaches.
The N-Acetyl Cysteine Protocol Morning and Evening: 600mg NAC Oregano Oil (min. 40mg Carvacrol) Black Seed Oil (1 teaspoon)
For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.
The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.
Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.
P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.
I'm on NAC too, but oregano oil gave me the worst heartburn I've ever had in my life. Do you think the black seed oil might neutralize it on that front?
I did carnivore for about three weeks before my body was absolutely shutting down. It was catastrophic for me. I did spend 20 months on an elimination diet of slow-cooked meat and boiled vegetables (exclusively, without a single cheat, which was pretty brutal), which helped clear up some intestinal issues that were misdiagnosed as ulcerative colitis, but it didn't do a thing for the headaches.
It's somewhat reassuring that most of the out-of-the-box suggestions people have are things I've already tried, because at least it does confirm for me that I've done a decent job of covering my bases, but alas, the pain persists.
“Happy families are all alike; every unhappy family is unhappy in its own way".
To sum it up, not much to write about ones that went to primary care and were handled properly.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/
However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.
>some kind of ignorance of womens' conditions
Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.
99 times out a 100, if the doctor thinks it's something else, it's not.
So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.
Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
We just took it for good money ans she is treated since with reasonable results. But it may be something else.
I wonder if there are better tests today.
I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment.
Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range.
Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.
> T levels back in range.
Were the T levels normal or not?
The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern.
My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.
For lulz you could add "or future"
Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out.
But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”.
30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”.
But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve.
I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100%
Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.
I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite.
My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with.
Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you"
Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week.
Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.
The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.
I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.