Slashdot Mirror
The Democratization of Medical Diagnosis and Discovery
An anonymous reader writes: As wearable fitness devices become popular, we're seeing the beginning of a change in how untrained people can monitor their own health. On top of that, we also have access now to powerful data-sharing tools — if a patient has the means and the interest to look at the data from a doctor's medical scans, she can. A post at the NY Times argues this is leading to the democratization of medical discovery. Physicians and researchers are now saying, "Better-informed patients ... are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness." These tools also allow easier aggregation of data from large groups of patients (hopefully anonymized), which can provide more accurate assessments of the typical course of disease than current methods, which often rely on interpretations of interpretations.
It also leads to rampant, self-diagnosing webochondria. I will admit, I am an offender in this respect.
With the number of self-misdiagnosed "gluten sensitives" we have walking around, who aren't sick at all, I really don't think giving the average untrained person (or the bizarre hipsters who think food sensitivity is cool) interpreting data. People with access to information they don't understand, or want to use for an agenda, don't end up making good decisions with that information.
Good. Somebody needs to tell doctors to piss off more often, and other medical personnel too.
Especially the biggest quacks of the bunch, the ones pretending to be in the mental health field.
" if a patient has the means and the interest to look at the data from a doctor's medical scans, she can."
I'm from Luxembourg, Europe and here all the scans have been done on CDs and DVDs for over a decade now and handed out to us patients, not the doctors. As soon as CDs got cheaper than chemical they switched, I must say I was impressed at the time.
For a copy of the lab-tests I have to pay 1€ to have a copy of the results sent to my address.
As almost everywhere on the world, electronic patient files are slow to come so it's like always:
If you want something done properly, do it yourself!
ritalin for me!
Better informed patience understand that in many cases, the doctor prescription creates an addiction and causes more long term damage that good. The body loses its ability to handle the condition and when the prescription is stopped the patient is screwed. The doctor's don't event collect information on whether their prescription treatment works or about the damages it causes. How in the world would they be able to improve their process? Its a shame all around when a patient on a diet with a watch tracking his vitals can improve their health more when a doctor is not involved and they get less healthy if the doctor is involved
...we're seeing the beginning of a change in how untrained people can monitor their own health....
So untrained people are now monitoring their health using uncalibrated devices in uncontrolled circumstances.
.
Yup, that sounds like a recipe for success to me.
Surprisingly, though, those very same untrained people will be saying how wonderful it all is. If for no other reason than to try to justify the fashion accessory on their wrist.
The traditional gatekeepers have been trying for years to suppress the relationship between lyme, cancer, and morgellons. It is time to break down these walls and seek real, user-facing cures based on improved rife machines suitable for home use and empowering patients everywhere. Hospitals and big pharma cannot stand in the way much longer against this tsunami of empowerment!
I have had good doctors and I have had some bad doctors, but most of the doctors I have seen have been in between. In the mid 1990's when I was diagnosed with hypertension I bought a good automatic BP meter and have taken and recorded my BP regularly ever since. I also make notes when there are variations in either direction as to what MAY have been the cause, and try to make any needed changes in my lifestyle. I ALWAYS take my numbers to my checkups and most of the time the readings in the doctors office do not correlate well with the readings I get at home. I have even had it called "white coat hypertension" by more than one doctor. As a result of this over the years I have been able to reduce the prescribed medications, in agreement with my doctor, by well over half -- maybe more and my BP is within the normal range for me whenever I take it. And yes, I have checked the calibration of my meter.
Another issue I have had is the two lesser forms of skin cancer, many Basil cell cancers, and a few Squamous cell ones. Although I have a checkup by my dermatologist twice a year, most of the time I find something that I am suspicious of for him to examine. As recently as 2013 I had a very tiny growth very near my left eye that appeared suddenly in the late fall, shortly AFTER my exam. I was suspicious that it was a skin cancer and called and got another appointment for an exam. My dermatologist did a biopsy, which was positive for Squamous, and I was able to have Mohs surgery to have it removed before the end of the year. It was still small and the surgery was much less invasive than it would have been otherwise. If I had let it go until my next check up I would have had to have reconstructive plastic surgery in addition to the Mohs surgery.
While I am not a doctor, and never wanted to be one, I am very much in favor of any device that can let me monitor my own body and then find a doctor that will listen to me.
This is stupid and the autists and hipster idiots who believe that technology will somehow make them able to diagnose their own diseases are even more retarded than bronies and creationists combined. Get off the fucking internet, find places to hang out that aren't coffee shops, and stop thinking you're intelligent because you google straight to Wikipedia and have the OCD to actually skim the page.
Diagnosis: Suicide by Maximum Over Tipping.
The people I know who own "fitness wristbands" are the same people who think gluten is a poison and won't vaccinate their kids.
People aren't better informed, every time I see "I did my own research" on facebook, it usually means they clicked a couple of linkbait articles about holistic nonsense, and then came to the trendiest conclusion.
Maybe it has the ability to turn people into "better informed patients". I think it also turns more people into hypochondriacs. My daughter and son-in-law are chefs. They say it's amazing what people demand from the kitchen saying that they are "allergic" to this or that. Then there are those people who think they are better informed, but in fact are only cherry-picking those pieces of information that they want to hear -- which is what patients have done since the beginning of time.
Proverbs 21:19
I'm hoping for the Uberization of health care. There is no excuse for keeping medical information from the patient himself under the guise of "privacy," especially when governments get free and full access to the same data. Yes, a lot of people are faddish about health, but this is just as big a problem under today's locked-down system, and I resent having my right to self-discovery and choice of treatment limited because a minority of the gullible are following quack ideologies. In fact, believers in "supplements" and other nostra enjoy protected status under current law, while patients are rigidly prevented from getting open-market access to real medicine.
What our medical system really fears is not Obamacare, but the free market. To hospitals, doctors and pharma companies, socialism is just another set of rules they can game to keep their prices two orders of magnitude above the market.
As wearable fitness devices become popular, we're seeing the beginning of a change in how untrained people can monitor their own health.
There has never been anything preventing this. You do not need a wearable fitness device to monitor your health. It might be helpful in some cases but the benefit is mostly marginal.
On top of that, we also have access now to powerful data-sharing tools — if a patient has the means and the interest to look at the data from a doctor's medical scans, she can.
There are very few people who have the training to really comprehend most medical scans. Even if they think they know what a particular piece means (which they usually do not) they likely will have no idea what the implications are regarding disease process or treatment. Even trained medical professionals like most nurses and EMTs aren't trained beyond the screamingly obvious stuff. Anything subtle is going to pass them by. So you'll have a bunch of untrained lay-people "reading" their medical scans and freaking out about a bunch of stuff they don't understand and/or misinterpret based on something they read on WebMD or Wikipedia.
I think a patient being involved in their medical care is a great thing but let's not pretend that a fitbit and an internet connection is comparable to 4 years of medical school.
I'm helping to make a new diagnostic for Lyme, which is one of these diseases where patients are often very informed, and traditional techniques fail.
Lyme has many "non standard" diagnostic options. If you run a clean lab, you can sell a non-FDA cleared test directly to a patient without really explaining what it is or allowing anyone "under the hood.". However, to get a treatment prescription most doctors require test results they understand, or at least results from a test that has the backing of a large medical oversight organization (CDC, FDA, AMA...). This is a matter of medical ethics and medical economics. The doctor needs to understand why a prescription is necessary and his insurance need to be able to cover that decision if something goes wrong.
When you have a proliferation of tests without oversight, two things happen: 1) you do get a lot of fraudulent tests, and 2) you develop a terrible relationship between patient groups and medical oversight groups. If you want doctors to treat people based on your test results, your test absolutely must go through serious vetting by some "establishment" medical group (i.e. FDA clearance).
On the positive side, developing tests you can sell directly to patients means you can sell the test for less money, at higher volume, for more overall profit and more overall positive patient outcomes. That is a really, really great win-win situation. It is also far easier right now to get investment for development of a direct to patient test than a "traditional" test. The medical community would be wise to use this current funding environment to help drive patient care forward. The difficult part comes in how oversight is done. It's not going to work to put all of the risk on the front-line clinicians.
I don't know about that. I was under the GOP system before... back when my premiums were less, my deductibles were less and the quality of care was higher. In the past few years doctors offices have turned into meat grinders.
This is interesting, given a conversation between Mark Cuban and some doctors/researchers yesterday:
http://theincidentaleconomist.com/wordpress/responding-to-mark-cuban-more-is-not-always-better/
Cuban was advocating for regular baseline lab tests so that doctors would have a trend analysis available to them when he gets sick. He got pretty thoroughly attacked, by Forbes: http://www.forbes.com/sites/dandiamond/2015/04/02/mark-cuban-doesnt-understand-health-care/
My opinion was that Forbes misrepresented things, but, related to this Slashdot post, it seems there's an interesting resistance to this sort of data-driven-diagnoses. Forbes would argue that lots of tests will lead to a false positive; I would argue that the more data the more you can become confident of the difference between a false positive and a real one -- seems like basic statistics to me, but we need to get the research and the doctors on board with a more data driven approach, rather than the kneejerk approach used in diagnoses now.
Isn't it bizarre that they admit the methods they use to analyze data will eventually lead to a false positive and, as a result, it is bad to collect "too much" information? Sounds like there is something wrong with the methods if too much information is a problem for them.
I must be missing something, because this is not anything new, except that technology enables the patient to have a little more information and perspective than before. Anyone given prescription medication always had possibility (actually the duty) to monitor their symptoms and responses, and to seek additional medical intervention if warranted. They may be worse off now because the Internet gives their doctor and pharmacist less of an obligation to provide them with sufficient information to monitor their condition between consultations.
The problem with Cuban's argument is that our current 'screening' labs aren't terribly helpful. They are a weird amalgam of historical accidents, clinical utility and technical issues. They aren't ** designed ** to be used in a prognostic sense. And the pricing structure is all screwed (surprise). There are a couple of research protocols where they are using both DNA and protein chemistries on whole blood to tease out which chemicals might be useful markers in a prognostic or diagnostic set. We will probably get there but it's going to take some time. It isn't any easy question to answer at all.
Much of the argument against Cuban relied on the very, very weird 'cost benefit' analysis that we tend to use to determine if it's 'worth' doing. It's a horribly convoluted set of arguments with a bunch of absolutely pulled-out-of-your-ass coefficients. But you have to start somewhere and as I've said, it's not an easy question to answer. Even if you know what the question is.
Faster! Faster! Faster would be better!
Most of the doctors I have are flummoxed by technology rather than using it. When I had a severe case of hydronephrosis (diagnosed by an emergency room CT scan), I took a copy of the scan to the nephrologist on CD. I later found out he never even looked at it. I spent the next two months going to bi-weekly appointments thinking I was going through the steps to get treatment. Finally, the pain got so bad I went to the ER again and I was scheduled for surgery. The nephrologist had the nerve to tell the attending urologist that he thought I just had a kidney stone. The fucker had a CT scan showing a severely swollen kidney in addition to a written diagnosis of the same from the ER. That asshole almost cost me my kidney.
It's even worse with my wife, who's a Type I diabetic. Once every couple of years something will happen to send her blood glucose through the roof (like a malfunctioning insulin pump). Every time we've gone to the ER we have to teach the doctors and nurses what Type I diabetes is and how it's treated. They have no clue at all. They'll just start offering to inject her with insulin without checking for DKA (which is why we're there). When she was in the hospital delivering our baby they couldn't even give her the nutrition information she needed about the hospital meals she needed to take the proper amount of insulin.
It's a wonder that anybody survives our medical system.
The medical community does a great job of handling acute emergency care for obvious maladies. On the other hand they do a truly terrible job of promoting health, early detection and preventing serious illness from occurring. Patients with more data will be in a position to do a much better job. Sure, there may be some false alarms or misreading of symptoms but overall the net benefit is going to be massively positive.
If that is the case, why should we think the screening tests are worth doing at all? It sounds like a case of sophistry. A set of complicated but meaningless and arbitrary rules have been created that "informed" people learn in order to interpret the test results, but the algorithm has never been properly vetted against reality. In other words, they are just measuring collective opinion. It is some combination of opinions by the people coming up with the analysis algorithm, the people choosing to do the test or not, etc. This sounds like the possibility suggested by Ioannidis (2005):
Why Most Published Research Findings Are False. John P. A. Ioannidis. PLOS. August 30, 2005. DOI: 10.1371/journal.pmed.0020124
http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020124
All knowledge of any kind, leads certain types of people to believe they know more than they do.
"I watched every episode of LA Law, and I'm telling you, they are going to have to acquit that guy. Fruit of the poison tree! Fruit of the poison tree!"
"I've watched lots of porn so I know how to please a woman."
"I installed Wordpress, and now I know how to store things in a database. You just update_post_meta()! OMG, you're still using fields?! Loser."
http://search.slashdot.org/sto...
Sure, I can Google my symptoms and get a superficial understanding of some medical conditions, but that doesn't really mean I have the context to make any sense of them.
Do you really want the person using stackoverflow as their "brain" building your app? No. You want someone who already knows how to build apps and uses it as a reference on occasion. Big difference and the same one with medicine.
-Chris
Well said.
To elaborate, in reply to parent, I do get the opposing point of view, from the perspective of how medicine is currently practiced. But we're in a much more data-driven world where the "quantified self" is much more viable. If it takes decades of peer-reviewed research for the medical industry to catch up and make real and helpful use of the wealth of more easily captured data, then that's what has to happen.
I'm not comparing someone going to a doctor more frequently to the status quo. I'm comparing going to a doctor when you feel sick and getting labs then and only then, vs. going to a doctor with a stack of labs from when you were healthy and sick in the past. If that additional data can't help inform the doctor's decision then it's more research, not less testing, that is required.
I'm not sure it is necessarily "more" research that is required. Instead it is higher quality research. More bad research lowers the signal to noise ratio. Just replace references to psychology/sociology with medicine here:
Statistical Significance Testing and Cumulative Knowledge in Psychology: Implications for Training of Researchers. Frank L. Schmidt. Psychological Methods 1996. Vol. I. No. 2. 115-129
Sorry to burst your bubble, but in actual practice we find that anonymized data is in fact NOT anonymous.
In quite a few cases, when you have most of the metadata, you can extrapolate with high levels of precision, who the individual is, even with anonymized data.
Think about it. If the device is worn by a 5'1" female who wakes up at specific times, goes certain directions, and we can correlate it with specific transaction locations, we can precisely identify the person.
The existence of places people don't go, and times when people do things, allows us to infer with high levels of certainty, who the person is.
(yes, this affects anonymized data in medical research applications as well, and it's getting harder to fully mask out individuals, due to their existence in many databases which allow us to identify them, especially when they have certain medical conditions and are extreme in things like age, or participate in marathons or known events like concerts)
-- Tigger warning: This post may contain tiggers! --
I would agree with this.
Most popular media interprets scientific research incorrectly, and about 2/3 of the time we find they extrapolate from a study of old greek fishermen with relaxed lifestyles what young women in stressful environments with bad diets "should" do, when a decent medical professional would tell them to do the exact opposite thing, given physiology and lifestyle.
Stop listening to the "news" for useful medical advice and RTFM itself - a small trial, not repeated, is almost always meaningless except as the basis for further research, not practical medical advice.
-- Tigger warning: This post may contain tiggers! --
If patients actually brought an up to date medication list and list of prior surgeries that would resolve 20% of problems.
We don't need more "House" doctors
Isn't it bizarre that they admit the methods they use to analyze data will eventually lead to a false positive and, as a result, it is bad to collect "too much" information? Sounds like there is something wrong with the methods if too much information is a problem for them.
The reason that too much information is bad is because of the way it's used.
The doctor, or whoever explains the test results to you, says, "This test shows that you have a 1% chance of having cancer. If you take a *further* test we can find out whether you really have cancer. If you have cancer, and we can catch it in time, it can save your life. If you don't take the further test, you might die."
Here's an example: A friend of mine was diagnosed with pneumonia. A pulmonologist took an x-ray. The pulmonologist gave him antibiotics for the pneumonia, but found a spot on the x-ray. The pulmonologist told him that the spot could be cancer, and he should get a biopsy to rule it out.
I and another friend tried to talk him out of it, because a lung biopsy is very invasive. Lung biopsies have a low but significant rate of serious complications, including death. Besides, lung x-rays always show spots. The odds that it's cancer are very low. Even if it is cancer, you can wait to see if it grows, and *then* do a biopsy.
My friend told me (reasonably) that his doctor knew more than I did, and he had to follow his doctor. So he had the biopsy. Contrary to what the doctor told him, it was invasive, and painful afterwards.
3 months later he died. We could never find out for sure whether his death was the result of the biopsy, but at 50 years old it was very unusual.
If a doctor tells a patient, "Your test (x-ray) shows you have 1% chance of cancer, and the only way to rule it out is with *another* test (biopsy), which I strongly recommend, even though it's invasive," it's pretty hard to refuse a biopsy, and most people get the biopsy.
You can go through all the decision flow charts you want, but this is what happens in the real world. You get a test where the lab says, says, "You have 1% chance of cancer, and we need *another*, more invasive test to rule it out." That's a pretty hard sales pitch to resist.
You're right, there's something wrong with the methods. The right way to use tests is for the doctor to take a standard history and do an office exam to follow up suspicions raised by that history. Then, based on the history or exam, the doctor might suspect a diagnosis. Sometimes an appropriate test can confirm the diagnosis.
But if you use tests without first having a suspicion, and a reasonable basis for taking the test, you're more likely to get false positives and recommendations for *further* tests. When you use those methods, too much information will be a problem for you.
This is interesting, given a conversation between Mark Cuban and some doctors/researchers yesterday:
http://theincidentaleconomist.com/wordpress/responding-to-mark-cuban-more-is-not-always-better/
Cuban was advocating for regular baseline lab tests so that doctors would have a trend analysis available to them when he gets sick.
Yes, I read that debate.
The same big-data arguments for medicine can also be used for national security.
If more medical information is good, why isn't more national security information good?
Why shouldn't we have TV cameras on every public road, scanning every license plate, so we can have a record of everybody's travel? How can that be bad? Can't we just ignore the information we don't need?
And if that information doesn't help us stop terrorists, why shouldn't we have records of every phone call in the country? Then we can add that to the license plate travel information.
What's wrong with that?
That's what you're doing when you collect information from indiscriminate medical tests.
The more medical tests you get, the more hay you're piling on the haystack.
...and if those devices in the doctors offices were actually calibrated...
Unless you are in the hospital hooked up to that $10000 show-it-all monitor then don't count on it. And I have no idea if that is even kept calibrated. :O. The emergency clinic had a mercury BP that would be very accurate if it had the mercury cleaned sometime in the last few years :(
Generally the office stuff is very hit or miss. My oral surgeon was a miss...his BP unit was NOT calibrated correctly, next time I look BEFORE I start counting backwards
Even worse both were advised of this and I don't think either got them calibrated. No one else I know of will do the mercury one and they didn't come to me.
(I have 35 years experience repairing BP units)
Reality Sucks eh?
"you have a 1% chance of having cancer"
Assuming that means p(cancer|test+), the specificity of the test is 1%. According to the CDC if you are 50 years old there is 0.71% chance of cancer within the next 10 years and 2.61% chance in the next 20 years (http://www.cdc.gov/cancer/lung/statistics/age.htm), so your friend got a surgery based on a test result containing essentially zero information.
Are those CDC numbers accurate? Who knows.
Here we enlighten doctors that believe a knowledgeable patient is a good thing.
At the other end of the spectrum we have some doctors that learned nothing since they graduated 20 years ago and seem to feel threatened with patient's knowledge. What doctor flavor did you encounter most often?
Of course. It all has to do with how much you are "worth". If you are not "worth" it in the GOP system, then you are shit out of luck.
The downside of the information collection you mention is an invasion of privacy. Some people think it truly is worth the tradeoff, and others do not. I personally agree that it is not.
The downside of more individuals collecting their own personal medical information is NOT an invasion of privacy; not if the information is freely collected by the individuals as Cuban suggested. If there is a problem of data retention or privacy use by labs or doctors, that is an important but separate argument; a red herring to what I'm talking about..
The argument was that the downside is over diagnosis -- that more routine testing will lead to more worrisome results and more invasive/expensive/unnecessary tests; that's a different haystack. I agree that this is a worrisome trend in the way medical tests are currently performed; research supports this. Where I differ is that I think more frequent (voluntary, healthy, uninterpreted by themselves) tests could provide a better "big-data" baseline. Research has not, I believe, thoroughly investigated this one way or another. While I'm open to being proved incorrect, I don't think I've seen a solid rebuttal. I have enough of a background in data mining and medical data that I feel qualified to take that stance, but certainly I disagree that the privacy is a central issue here.
Well you're right that terrorism data has more of a privacy issue than medical data. But they share in common the idea (or faith) that the more data you collect, the more you are able to find something.
I read a lot of data-mining studies in JAMA, BMJ, and Lancet. The ones who do it best are the Scandinavians, because they have the most complete medical databases and they have social attitudes that tolerate the collection of personal data. They'll do things like review all the patients with knee osteoarthritis in the entire Danish population, and see whether the ones who got knee replacement surgery did better than the ones who didn't (and try to correct for every confounding factor), and try to figure out how often knee replacements improved their quality of life, and how often they make it worse. Or they'll see whether there is any increase in heart attacks in the week after they give patients high-dose steroids. Or in one country that still had conscription, they compared the positive tests for marijuana at age 18 with incidence of schizophrenia 10 years later.
The Scandinavians can do that because their entire population is on these very complete medical records databases, and they have a population that's economically and socially uniform (and relatively genetically uniform), so they're less likely to have confounding factors.
That's hard to do in the US because we have so many different medical record systems, patients keep switching, and lots of people can't even afford health care. The best population studies here are done by the VA and sometimes Kaiser Permanente, which have good long-term data on computerized records and relatively stable patient populations.
But I don't see how the kind of testing that Mark Cuban was talking about could do any good -- every blood test you can afford, 4x a year.
When I was studying it, the standard blood test panel was the CHEM-20, which had 20 standard tests, like electrolytes, albumin, glucose, creatinine, cholesterol, etc. Now my doctor gives me a blood panel that has I think about 40 tests.
But today there are thousands of blood tests, some of them for special indications, like an antibody panel for lupus with things like antinuclear antibodies and double-stranded DNA that doctors will give when they suspect somebody has lupus. But there's no point in giving lupus tests to somebody who doesn't have symptoms or indications for lupus. Otherwise you're just going to get positive antinuclear antibody tests. So you have antinuclear antibodies. So what? So does a lot of the healthy population who will never get lupus. There are blood tests for cancer, blood tests for heart attacks, blood tests for malaria, blood tests for exotic South American parasites. Which ones do you get?
Does Mark Cuban get 2,000 blood tests every 3 months, just to import the values into a spreadsheet? I can't imagine how that could serve a useful purpose, other than scientific curiosity. Suppose he finds out 5 years from now that he has lupus. What's he going to do -- look up his old spreadsheets and say, "Oh, yeah, sure enough, I had an elevated ANCA." There actually was a study like that, but they had about 200 patients.
These blood tests can be useful for research on a population level, but not on an individual level. For example, there was a paper recently by some rheumatologists who thought that osteoarthritis was preceded by an inflammatory pre-osteoarthritis that could be detected by blood markers years before any signs or indications of osteoarthritis. Perhaps if you screened for it and gave people anti-inflammatory drugs, you could prevent pre-osteoarthritis from developing into osteoarthritis. But for a study like that, they compare 100 people with osteoarthritis and 100 people without osteoarthritis, and see whether the biomarkers actually predict osteoarthritis. Then in the next study with another 200 people they see whether anti-inflammatory drugs can prevent pre-osteoarthritis from developing into osteoarthritis. It's worth looking into.
As a Physician, I call it "Contacting Dr Google" and use the humor in that to open discussion. More often than not, the Patient has been waiting for the appointment worrying to death and stewing over some misdiagnosis that they made based on information from a Google search. OR, disappointed because 'their' diagnosis wasn't cured or resolved with OTC: over the counter meds / drugs they bought based on their own diagnosis. Most Physicians are concerned that Patients will NOT seek care based on 'their' diagnosis when, in actuality, they SHOULD seek care and then an appropriate diagnosis will be delayed rendering a worse outcome. That is neither democratization nor beneficial to Patients, IMHO. I understand the idea behind your comments, but, medical care is best handled by experts.
Thank you.
Patrick MD
I can't speak for Cuban, but I was describing taking the 20-40 regular blood tests plus whatever someone may be interested in for more personal reasons, more regularly. Not necessarily adding breadth to the data, but regularity. Yes, a genetic test that comes back negative is unlikely to change.
Of course, we think it won't change based on a belief about how genetics works that isn't frequently tested, and poorly researched. Some genetic changes that can happen during a lifetime weren't really accepted until 2008, and we don't have a good understanding of that impact yet. Another example I can give you is Chimerism -- the possibility that someone has two sets of DNA working in their body, sometimes with different chromosome types. This is the sort of thing that tends to be diagnosed by accident, sometimes during transplant typing. It simply wouldn't be uncovered during a single genetic test, but multiple tests over time would make it readily apparently.
I think that's a bit extreme, though... simpler examples are borderline cases of routine blood work. The de-facto standard is to compare blood work to general standards, but we don't adjust for variation in individuals. A white blood cell count of 11 is borderline, but if I came to a doctor with symptoms and an 11 WBC, an might be prescribed, since "normal" is just below that. If, on the other hand, I had years of "healthy" measurements where my WBC was normally 10-11, we'd realize that I had a naturally high count and probably conclude that this symptom may be something that is not affecting my WBC. Or, years of high tests might be a symptom of something else, but still different than a single spike from a person with a proven healthy average of 4-5. If I only ever have the test performed when I'm sick then all you can compare me to is the standard population. That's bad statistics, bad science, and it ought to be bad medicine.
Now, I've also heard from doctors that said they wouldn't treat this patient differently because it goes against their training. So, yes, I agree the US has a ways to go, and I agree we need a culture change. I don't think the way to make that change is to shoot down people who are willing to be a part of it and promote it. I do think that even if you dislike the precise mechanism Cuban recommended, it still sounds like a step towards the more openness that it seems we agree is superior in your Scandinavian example, even if the path isn't direct. We won't change overnight, but we won't change at all if we stop people from trying.