The Democratization of Medical Diagnosis and Discovery 96
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.
Other unintended side effects (Score:5, Insightful)
It also leads to rampant, self-diagnosing webochondria. I will admit, I am an offender in this respect.
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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."
Note that this is almost certainly NOT a causal relationship.
Re:Other unintended side effects (Score:5, Insightful)
It was a testicular cancer anyway.
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You know, you shouldn't lead like that. It took all my willpower not to be awful and make an "Ow! My Ballz!" reference.
Re:Other unintended side effects (Score:4, Insightful)
He proceeded to rant on how misinformed people on the internet are
The obvious solution is more and better information on the Internet. Doctors have a vested interest in keeping patients ignorant, so their "rants" should be discounted.
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The obvious solution is more and better information on the Internet. Doctors have a vested interest in keeping patients ignorant, so their "rants" should be discounted.
The Internet doesn't make you smarter; you only think it does [arstechnica.com]
Even the most reputable health web sites with the most accurate information can cause trouble for the hypochondriac. ''Hypochondriacs tend to latch onto diseases with common or ambiguous symptoms or that are hard to diagnose," says Fallon. For example, illnesses such as HIV or lupus, and neurological disorders including multiple sclerosis can cause vague symptoms like fatigue, swollen glands, and strange physical sensations.
Second-Guessing the Doctor
Barsky and Fallon say hypochondria often breeds suspicion and distrust between a sufferer and his or her physician. Some doctors may be too quick to dismiss the worries of hypochondriacs, and hypochondriacs are likely to ruin relationships with good physicians by second-guessing them from the start.
For instance, Barsky says, a hypochondriac needs to resist the compulsion to self-diagnose and to seek assurance from doctors and friends. The best one can do is to get regular medical treatment from a trustworthy doctor trust and to live a healthy life.
Fallon agrees: ''In a loose sense, a hypochondriac becomes almost addicted to looking up information, examining himself, and getting reassurance from other people,'' he says. ''Checking just makes things worse.''
And what about using the Internet to look up that worrisome symptom? ''If it's just going to make you upset,''says Barsky. ''Don't do it.''
Internet Makes Hypochondria Worse : Cyberchondria [webmd.com]
Medical knowledge is not a special case (Score:4, Insightful)
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."
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The real reason for most of this is for fear of lawsuits as well as drive business to doctors. If they actually told you the odds are 99 to 1 that what you have is a mole not cancer and don't worry the 1 person that had cancer would sue. Also by saying it might be cancer is like an advertisement to go to the doctor.
Eventually technology will get rid of being diagnosed by a person. Will will still need medical researchers and possibly surgeons but most of the intellectual work will be automated.
Probably a bad thing. (Score:3)
Re:Probably a bad thing. (Score:4, Insightful)
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This is another reason for agitate for better STEM education with emphasis on the S where S is the philosophy and methods of science rather than just a bunch of conclusions that we are supposed to take at face value on faith as if they were a different sort of religious doctrine.
Although the entire situation is aggravated by the fact that there are hidden additives in food. It's easy to get the wrong idea.
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Wait until people start figuring out just how much "better-informed" the doctors and medical researchers are. It may first require dropping of the journal paywalls as well, but it is only a matter of time before first engineers and physicists from other fields take a close look at what has been passing for scientific method. Then there will be the authoritative voice to get others to take a closer look, etc. It will be epic when it finally happens.
Re:Probably a bad thing. (Score:4, Insightful)
Wait until people start figuring out just how much "better-informed" the doctors and medical researchers are. It may first require dropping of the journal paywalls as well, but it is only a matter of time before first engineers and physicists from other fields take a close look at what has been passing for scientific method. Then there will be the authoritative voice to get others to take a closer look, etc. It will be epic when it finally happens.
Oh, everybody knows this. Medical research is a poor, psychotic cousin to 'real' science. It's going to be that way for quite some time. Hard to grow a bunch of humans with a gene deletion, wait until they're old, euthanize them and then slice them up for analysis. Even if you did that with lawyers and politicians, you'd have to wait an awful long time to get any results.
On top of the rather, ah, interesting history of how medicine became forefront in Western society (it makes Alice in Wonderland seem perfectly sane), human hubris, the medical - industrial complex and the plain old fact that biology is hard and you have modern medicine scrabbling for acorns under the tree, finding them occasionally but mostly eating rocks and twigs.
There won't be any 'authoritative' voices telling us how to do things because we know what we need to do. Be very, very patient. Invest lots more in basic research at all levels and continue to be patient. We're much more likely to fully fund NASA than that.
Re:Probably a bad thing. (Score:5, Funny)
Hard to grow a bunch of humans with a gene deletion, wait until they're old, euthanize them and then slice them up for analysis. Even if you did that with lawyers and politicians, you'd have to wait an awful long time to get any results.
I must say, if you did that with enough lawyers and politicians, it might make research easier for generations to come!
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Useful medical research probably is harder than the study of simpler systems such as particle physics and astronomy. However, say you take a bunch of people and fail to teach them math, philosophy of science, and logic. Instead you teach them that it is sufficient to measure things at one or few timepoints, take the average, normalize to a different average and compare this to a control group... what do you expect to happen? It seems that the methodology would preclude figuring things out whether the topic
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I used to believe this, but I suspect there are a lot more people who are sensitive, much like lactose sensitive, just not completely intolerant. I am also seeing a lot of people where it's not the gluten, but something else in the Wheat product (fertilizer, GMO, something) that is actually causing the sensitivity. I hear you about people who think it's cool, but half of my family definitely has some form of reaction, in a study we are doing involving blood work, and gene comparisons.
Not in the US (Score:3)
" 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!
Re:Not in the US (Score:4, Informative)
Even here in the backwoods of the US, we do exactly the same thing. Patients can leave the ER with a CD containing scans and lab results. If they want to wait awhile, they can have the doctor's notes. We've thought about switching to USB sticks but CDs are just about the right size, dirt cheap and can be used for coasters in an emergency.
Why, we can even photocopy things in an emergency.
USA! USA!
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Note: I'm from Denmark, now living in Belgium.
I like the fact that I can get a CD/DVD with my scans - sure it is in a proprietary format, and comes with a limited windows-application, so the whole thing is useless to me, but besides that, it is cool.
What I DON'T like is that I go have a scan, then have to get a CD/DVD, take that to my doctor, who then interprets it while I wait ....
Why the funk not just send the damn data to the doctor immediately, and let him/her spend any downtime ("there's always patient
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"Why the funk not just send the damn data to the doctor immediately, and let him/her spend any downtime ("there's always patients cancelling") to review the data?"
Because then the doctor and the radiologist will make deals behind your back and bill your insurance senseless, because you are no longer in the middle to check if they don't overdo it.
ADHD here we go (Score:2)
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I figure most of the folks on Ritalin who aren't actually using it for actual ADHD are using it to self-medicate for depression, so it's all good.
And the hype begins... (Score:2)
...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.
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So untrained people are now monitoring their health using uncalibrated devices in uncontrolled circumstances.
Compared to a one-point sample during an office visit. Do you have a problem with high blood pressure? Will it manifest during that one office visit, or does it happen during specific times of the day? Does your blood sugar spike/drop after specific events, that you might not think of and your doctor won't see, but a home monitoring system will?
If we all lived in doctor's offices then calibrated devices in that controlled circumstance would be sufficient. Life is filled with uncontrolled circumstances for
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There is also a middle ground:
Tests with pre-programmed equipment given to the patient for use at home for one night, as a screening test. If the results look suspicious, a night sleeping in a test facility follows.
I'm halfway through such a screening myself right now. The equipment included a pulse oxymeter, a microphone for detecting snoring and a programmable device that records the readings over one night. All of it probably lab grade or close enough for the screening.
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Tests with pre-programmed equipment given to the patient for use at home for one night, ... All of it probably lab grade or close enough for the screening.
Which for me was a device almost identical to the $19 device I just purchased. It wasn't anywhere close to lab grade. It didn't need to be. Since I had to give it back I couldn't repeat the test, but now I can. I could try any of the cheap methods of solving the problem and actually see if they solve the problem.
The good, the bad and the in between (Score:5, Informative)
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.
I'm dubious (Score:2)
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.
What I really want to see (Score:4, Insightful)
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.
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The "Uberization" of health care? You want unlicensed strangers to surge-price you for treatment?
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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.
Where do you gt this last part? Unless you're on government insurance - like Medicare, Medicaid, TriCare or some such - the government absolutely does not have access to your health care records without a warrant (NSA snooping notwithstanding). They do get quality metrics to show that meaningful use is being carried out, but this dat
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Congratulations on being the one response that is not hiding as an AC. The whole idea of open records access, as described here, goes against engrained industry practice:
http://www.allgov.com/news/con... [allgov.com]
And as for pricing, were you aware that in many states it is not even possible to find out the price of hospital procedures ahead of time. This explicitly prevents a patient from planning ahead, or from finding that gallbladder surgery at a first-class hospital in Mumbai can be had, including airfare, at a f
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That's what many app developers thought about low prices. They priced their apps $1 (instead of $5 to $20) assuming they'd get tons of purchases. But the number of buyers did not
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Doctors typically want to help people (there are those who go into medicine for the money, but doctoring is relatively less lucrative than it used to be). They frequently have horrifying student loans when they graduate, and practicing medicine appears to be expensive. A friend of mine has complained about the cost of keeping her practice running.
Where are you that getting treated for a simple problem is over, say, $150? Are you going to an emergency room? That's about the least efficient method for
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The real trouble is that most doctors aren't independent any more -- most of that $1000 goes to somebody else, owners and investors in hospitals and medical groups. Same people dictate rules for how long the doctor can see you and over-schedule them horribly so you have to wait for hours past your appointment time. A money grab, yeah, just not one the benefits the people actually doing the work.
(says someone currently fighting the system)
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It's out there. I wanted to start screening my LDL-P as I went on a keto diet. I have decent insurance so I went to my physician and had to pay the co-pay. Then I talked to him and he said I really didn't need that test but just a regular cholesterol test. I got the test and paid the co-pay. Then to get the results I had another appointment with him where I had to pay a co-pay and he wanted me to go on statins.
Instead I went online and found some quack that for cheaper than my co-pays would write a script f
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I'm genuinely embarrassed to be part of a community where people use 'socialism' like a scare word to try to argue against state-provided healthcare. What you had before Obamacare was way closer to a free market, and it's directly responsible for why more dollars are spent per capita on health care in the US than anywhere else in the world. Still there are many people not actually being properly covered, people driven to bankruptcy because of insane medical bills, not even health economists understand healt [nytimes.com]
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Opening up medicine to the free market addresses the cost side, not the who-pays side of the medical equation. It does not have to mean that the poor will be tossed out into the snow to die. If the government and charity components of our healthcare system were to stay the same as now, they will be able to purchase more care for the same money in an open market than in the present cartelized system. So would ordinary people paying with their own money, either individually or through insurance arrangements.
Health monitoring does not require a fitbit (Score:2)
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 an
complicated (Score:2)
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
On Yesterday's Medical Data Topic with Mark Cuban (Score:2)
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 thi
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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 pulmonologi
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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 p
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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 comp
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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 cou
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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 her
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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 osteoarthrit
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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 un
On a computer! (Score:2)
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 thei
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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.
In order to understand why you're wrong, why don't you apply the same logic to the war on terrorism. Technology allows the cops to have more information and perspective than before. In terrorism, or medicine, you're not getting more information and perspective, you're dumping more hay on the haystack with the needle in it.
The problem is that in medicine tests give you information with well-documented false positives. If I take a standard 21-item composite blood test, and each of those components has a docum
Preventative care (Score:2)
Didn't we just learn why this isn't a good idea? (Score:2)
http://search.slashdot.org/sto... [slashdot.org]
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
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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 meaningles
Anonimized is not Anonymous (Score:1)
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
At the other end of the spectrum (Score:2)
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?