I would imagine a lot of the concern over this is more of the existential fear resulting from the balance of power between patient and doctor than anything else. The Internet started that, with patients able to become much more knowledgable about their own conditions (with the unfortunate side effect of every symptom being cancer).
Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes.
My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).
The medical community currently has an abysmal record with treating chronic health problems. There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.
1. Source: my wife is part of that community and sees it regularly.
Doctors absolutely hate knowledgable patients, from what I can tell, however.
I've just spent two years begging for an ultrasound because I've strongly suspected I have gall stones - and my GP has consistently rebutted me, and has written stuff like "hypochondriac" in my notes - he left the room, didn't lock his computer. Tut tut.
I initially tried playing totally stupid and letting them reach their own conclusions, but they just kept going "norovirus". When I then started talking about Murphy's sign, cholecystitis, why this lead me to think gall stones - they responded with a complete shut-down, get out of my surgery, type affair.
Went abroad. Got an ultrasound. Severe gallstones. Took them back to my GP here, they refused to even look at them. About to go abroad again to have a cholecystectomy.
So. Educated patients - if this is to help healthcare, doctors have to be on board too, and I don't think they ever will be, as an informed patient is viewed as a threat, as you say.
The problem for most patients is that filing a complaint, making sure it gets into the system, staying on top of it to make sure it isn't buried, responding to criticisms and building justification for the claim, and then maybe losing in the end because you have an unsympathetic judge / board / whatever is too much of a pain in the ass. This being compounded by boards of reviewers in many places that are friends with the reviewed, so you get an effect like the police, with a wall of white, rather than a wall of blue.
Just switch doctors, tell folks you know not to use that doctor, and tell the doctor why you're leaving. Network effects and market forces can make an impact on this kind of thing if you're diligent.
I'm not sure what kind of insane complaints procedure you've had to deal with, but here you just file it, they sometimes come back for more information/questions, and then that's the end of it. You sometimes get a letter with a result, but there's none of that other stuff you listed ("making sure it gets into the system," "staying on top of it," "making sure it doesn't get buried," etc).
Plus you don't really "lose." You make a complaint, they investigate, and then take action if they feel it is justified. There isn't any "prize" for "winning" so therefore you don't lose.
Ultimately I'm not sure what you're getting at. Sounds like FUD to me, essentially "don't complain because it might be a hassle and the free market will magically solve the issue anyway."
I'm in the UK - it's straightforward to complain, but nothing comes of it, apart from even shittier treatment the next time around, because they know you've complained about them!
My favourite was the one who threw a mop at me for blacking out and bleeding all over her surgery, and then gave me a sticking plaster for my very obviously very infected wound.
Ended up in an ambulance to hospital the next day with a brain-cooking fever and sepsis. She was fired - but didn't lose her license.
Jesus christ man, I've had nothing but good experiences with my GP in Yorkshire, even for the supposedly failing/diminishing mental health services. He listens to everything I have to say and trusts that I can actually think for myself.
I absolutely agree. There are bad doctors out there. The medical community, like every other professional community, will stand together to protect each other from what they feel are unfair attacks, but they---like every other professional community---don't particularly care for the bad doctors either. The situation can be improved, but it won't unless someone complains.
The symptoms started when I was 14 years old, and my mother took me to a endocrinologist, back then as wild attempt to see what was going on (we had no idea what the issue was, my mom choose the medic specialty in a sorta random manner).
The result was: medic refused to do any exams, told my mom that all my symptoms was because I was fat, and I was absolutely mad at my mother (because I told her that endocrinologists are medics for fat people, and I did not needed one, and then the medic tell me all my issues, including random pains are because I am fat, just made me offended)
Fast forward some years, my health was getting slowly worse, with other medical specialties trying to stave off the effects (For example research shows that seemly one of the first symptoms, if not the first symptom that shows up, is cholesterol imbalance... I spent years going to cardiologists that tried their best to fix my cholesterol, until one of them suggested some heavy-weight drug, and I decided to give up on that and let it run unchecked).
Until one day, a marketing director that was friend of my mother, saw me from afar, and told me mother I had a thyroid problem.
My mother puzzled, told me that... And I asked her more about it, and she then remembered (and then told me) that my grandma had it, my great grandma had it too, and my aunt had thyroid cancer because of the same disease (hashimoto disease can lead to cancer if left unchecked)
I was kinda baffled, I mean, lots of people had the disease, she never wondered about it? In fact, she had symptoms too (much weaker than mine, to the point I don't realized), and never ocurred to her too... and indeed, she went to a doctor and promptly got diagnosed herself (she also had the disease).
Now the important part: after that, I spent 6 years going to medics, and as my information grew, the more they went into "shut down" mode and refused to cooperate, I had to threaten one to get the exams I needed (she was a elderly woman, I stood up, and I am very big for my country standards, and stared her down, and told her to sign the godamn request for the exam I wanted), and this was the only way to get results (the exam I wanted DID confirmed I had hashimoto), but still no doctor wanted to treat me...
It was funny, I showed up, gave them ultrasonography showing my destroyed thyroid, and gave them my symptoms, and then they would ask for a blood test, that would give normal TSH, and then they would promptly tell me I was hypocondriac or something and my health was fine.
As this went on I got more and more convinced that medics are just people with a crazy power trip, seemly saving (or not) people lives makes them think they are some sort of god or demi-god, with power of life and death...
Several went to tell me that I was wrong because they were right and I would never understand medical research and whatnot and that is not what the association said.
I went for some time to hate the association, they are involved in scummy stuff, and they were all the time cited as the reason why my normal TSH meant no treatment for me...
Until I decided to read the association documents, and whoa, my own arguments, the same ones that I use to argue with the doctors, citing the exact same papers, are written down in the section that explain how to achieve diagnosis... in the end the association actually agrees with me, and is the medics that in their hubris don't even read it, or read it and ignore it, and lie to their patients.
The only reason why I still go to a doctor, is to get the permission to get the blood tests (privately ordered blood tests cost like 2 month wages, and I need blood test every 4 months so...), because I am mostly treating myself with my own knowledge (and so far it is mostly working).
EDIT: "normal" TSH as in below 5.0 (it was 4.0), and my argument was that they are using the wrong baseline, the association use 5.0 for general case, but the association cite studies related to my specific symptoms and situation that suggest that TSH should be below 2.5 instead... thus my TSH is "normal" only for the "generic" most conservative case
EDIT2: I started treatment just some months ago, I am 26 now (meaning it took me 12 years to start the treatment)
> In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).
People have many values, one of which is health. Deciding not to worry about cholesterol may fit with your value system, but is unlikely to benefit your health. As a doctor, it would be reasonable to try to convince you of the benefit of caring about cholesterol, and then working with you to improve your health along the axes in which you are interested in making changes. If cholesterol is not one of them, that shouldn't sever the remainder of the therapeutic relationship. In other words, your physician may have recognized that global optimization sometimes requiring abandoning local optimizations (such as cholesterol control, in this case).
Obviously I don't know anything of the specifics of your case, but yours is an interesting comment.
Or I've done enough research to see what is correlation, what is not, what actually correlates and what does not. Total cholesterol has zero predictive power (2/3 of heart attack sufferers have below-normal total cholesterol), yet that number is used as a marker for prescribing "treatment".
That doesn't mean there aren't numbers with value in your blood. Triglycerides, HDL/LDL ratio, and LDL type have some predictive values, so I pay more attention to those.
I would encourage nobody to trust me at my word, though. Do the research. Take control of your own health. It's ok to disagree with your doctor.
I'm going to give you the benefit of the doubt, being that you are sufficiently educated to comprehend the studies you're reading - both biology and statistics - and have actually invested a non-trivial amount of time ensuring you're actively trying to seek information to disprove your hypothesis rather than the alternative. (ie. You're looking for research suggesting that cholesterol has significant predictive power as opposed to looking for research just confirming what you already believe.) [0]
And under those conditions, I agree with you! Get involved with you health and engage in discussion based dialog with your doctor, and push harder if you don't agree. The healthcare system in this country may be incredibly screwed up, but at the end of the day most doctors are incredibly intelligent and if you have information suggesting they are wrong they very much would like to hear it. (Though like the rest of humans, some of them let pride and ego get in the way of rationality.)
However, the fact of the matter is the kind of person I described makes up a fractional percent of our society. Most people are not even close to being able to do that. Even if they could comprehend the biology, statistics are hard. Most people are incredibly naive and arrogant with their regard to their comprehension of statistics (probably myself included), which is why they are so powerful in misleading people. Ex: "A and B have a strong correlation so you should do C" - when in fact the correlation's r value is 0.3 and the correlation described was more likely random noise... but there is a correlation! [1]
Thus it is important to keep in mind general population when considering the effects of changes impacting more than yourself. If our healthcare system demanded we take more control of our own health, there is a small group of people who would be greatly benefited, but there is a much larger group who would suffer.
[0]: If that came across in an attacking manner I do apologize as that isn't my intent. My thoughts are much less about your specific case rather society as a whole.
[1]: Just to clarify my thoughts, I'm not suggesting most people are not intellectually capable of acquiring the knowledge to do any of this - It's not like it takes a special kind of super genius - most people simply just have not acquired the knowledge and thus are incapable for that reason.
It's not controversial. It is well known that triglycerides and LDL/HDL ratios are more important than total cholesterol. These are all part of the standard blood lipid panel. Some doctors are just unaware of the relatively modern (10-20yrs) advances in blood lipid analysis.
I think perhaps we are thinking different things by "take control", and perhaps "get heavily involved" would be a better way to phrase it. Ask questions, do research, and discuss treatment options. It's also important to know your own limitations (and confirmation bias is always a human limitation).
While I feel comfortable with my knowledge in certain areas[1], I definitely don't have the breadth of knowledge a doctor does (and the more specialized the doctor, the more true that is). But even in that situation, after a visit to the doctor, it's time to hit the books and understand what is really going on, what the current state of research is, and what options exist.
1. Yes, I do believe there are certain, narrow areas where I am more knowledgable than the average doctor, but these are areas that are, unfortunately, not covered well in medical school. I consider it unfortunate because they are also areas (most likely) underlying much of the chronic illness in the US and other Western countries.
While this is something that may be possible for you, I think what the parent is saying is that most people lack not only the desire and willingness to do their own research, but also the general knowledge of the topics to fully comprehend what it is they're reading.
While doctors do typically go to school for a more 'general' understanding of any given disease, they still have a great more background on the subject than the average person, which probably helps them differentiate (to an extent) between the signal and noise of any given research paper that someone researching may come across.
The same could very much be said about software. To a non-technical person, searching about 'why you should use Windows vs Mac' could be pretty fruitless. Sure, there's plenty of information available, and numbers can easily support one or the other, but do you actually know what those numbers represent?
Now, I'm not saying that patients shouldn't be able to see their records, nor that they shouldn't spend the time learning about any conditions they may have (though I won't claim that I have), but I don't think we should discredit the knowledge that your average doctor has about your health.
Distrust of your healthcare provider isn't exactly healthy either. And again, as to your last point, can you elaborate? I'm assuming your referencing something to do with depression and obesity, as you mentioned in your original comment, but you haven't really mentioned what it is they're failing at.
I'm not suggesting anybody to distrust their medical provider, and I disagree that it is anything like software. This is your body. It is your life. It is your health. Nobody cares as much about you as you do.
If you distrust your healthcare provider, find a new one. But if your healthcare provider does respect you and your needs, isn't willing to answer your questions, then I also think you should find a new one.
And, as I've said elsewhere, I am not discrediting their knowledge. I'm recognizing that their knowledge, like any person's, is bounded. They have to care about hundreds of patients with hundreds of conditions. You have the opportunity to care about yourself. Take it.
That is right. Some patients are quick to see a conspiracy when doctors can't cure them. But some diseases are just outside the capabilities of current medicine. It sounds like you suffer from something like metabolic syndrome. It's a deadly serious disease that's unfortunately common, and one that has no cure (as with any chronic disease).
>>existential fear resulting from the balance of power between patient and doctor than anything else
It's the most elemental fear of all, I think. It's the fear of one's own mortality. Would the doctor-patient relationship be so fraught otherwise?
Or to go another way: doctor's get paid on throughput, and at some point it's not worth the effort to keep arguing with the patient, provided you can show in your records you did advise them repeatedly that they were making an inadvisable decision.
Cholesterol specifically is in the realm of relative unknowns for medicine. Especially the way it is measured, it may or may not be a predictor of heart disease or other maladies. It is also unknown why some populations have a higher baseline cholesterol, and how that affects their longterm health.
Speaking as a person who has had very high cholesterol from childhood with very healthy eating habits and despite being a very active athlete with <5% bodyfat.
I feel your sentiment. I’ve had a love hate relationship with the medical community. It took two plus years for a diagnosis of Celiac’s. Along the way, I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. And while these docs made me want to crack skulls, I also came across a number of great doctor’s with empathy, knowledge, and an understanding that their knowledge is not infinite. It’s a tough job, and after that many years in school, it’s tough to be humble.
It was my step-brother, a Cardiologist, who recommended against my second endoscopy that led to the diagnosis and the transformation of my health. Like my XO in the Navy said, ‘Only you are responsible for your career.’ It applies to medicine as well, ‘Only you are responsible for your health.’ Especially with anything chronic that may be outside the 99.9% bounds that modern medicine is designed to handle well.
>>I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head.
I hear you.
I went through a very similar phase a few years back here in India. It turns out it was just a simple infection being dragged around by my doctor just to keep the consultation fees coming.
It took a little internet research and a change of doctor to get the problem resolved.
In another case a wife of a colleague suffered from a serious health issue. Turns out the doctor did everything to delay the actual treatment to keep the expenses high. After a little research and catching the doctor in the act, the doctor yelled at them telling that was how he deals and they can go to a different doctor if they wanted. A new doctor was able to get the situation under control and get the issues resolved pretty quick.
We need to understand that at the end of the day its just a business, and they just tend to optimize what works for them.
Is there a review site for doctors? It would seem to me that such blatant profiteering at the expense (both health and moneywise) of patients ought to be exposed.
The reviews, in my experience, are less useful than you might imagine. People have very different ideas of what makes a good doctor and they seem much more likely to write reviews when they're not happy.
There are a few, and as you can expect, they open some huge legal cans of worms: http://www.nytimes.com/2012/03/10/your-money/why-the-web-lac... Posting a picture of a cockroach in the bathroom is one thing, essentially accusing a doctor of malpractice is another entirely. Stepping on local Medical Boards' toes doesn't help either.
Physician here. I personally believe patients should do their own research, up to a certain point. There is a reason physicians have tens of thousands of hours of training. We quickly learn medicine is rarely black and white and straight from the textbooks. The art of medicine is a skill that takes a lifetime to develop, and is still not perfect.
Sure, you can search pubmed for the best therapies, but patients often don't know how to fully interpret a study. Was there enough power? Does the patient fit the studied population? Are the primary endpoints significant in this scenario? The knowledge is out there, but dangerous in the wrong hands.
Its generally a subpopulation of patients that give a reasonably self informed patient a bad reputation. Many patients (especially in the low income brackets) treat their physician like a McDonald's drive through. I want this, this, and this and I don't care about your extensive training and clinical judgement.
I honestly think this "I want this, this and this" comes down to how we infantalize adults in modern society, and how that comes out in the way that we pay for healthcare (insurance or social programs rather than out of pocket) and in the drug war. About half the time I go to the doctor, I already know what I want (i.e. not for diagnostic reasons) and if I could get it and at least try it out without a prescription, I wouldn't need to waste my time and the doctor's time. Sometimes I don't know what's wrong with me and I actually do want to utilize the doctor's diagnostic skill, but that's not always the case - the same is true when I visit a mechanic, sometimes you already know you need an oil change and a tire rotation or whatever.
Yes, people might make the wrong call about their health sometimes, but that's not the doctor's concern - they're adults, not infants, they've earned the right to make their own mistakes.
Which sets us up for the anecdotes posted elsewhere on this thread. Doctors become cynical, discount every patient's questions and ideas; patients with real problems get ignored; HN fills up with horror stories.
> My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).
> As people take control back...when they realize they have some control...they will become more healthy.
Your story is great, and a good example of the upside of patient control and involvement in care.
However, the downside also exists, and is very real. For some patients, having control over their care means demanding unnecessary tests and treatments, which leads to phenomenal increases in costs to the insurer and/or provider, as well as a reduction in compliance with medication and treatment regimens[0] - this has implications both for public health and the patient's own health. Or, worse, demanding medications that they think are helpful but are actually harmful (this happens all the time).
The problem is that control isn't very meaningful without an appropriate level of knowledge to supplement it, and even when the resources are available, very few patients are willing to take the time to educate themselves to the extent necessary to make informed decisions about their own care.
> Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes.
To be blunt, it's more likely that the doctor will move towards being the person who enacts the wishes of the insurer (or whichever entity is acting as the insurer). This isn't a particularly bold prediction - it's already happened, in that doctors are increasingly beholden to the pressures of insurers. Once you take into account the massive costs that arise from mismanagement of long-term conditions (whether from the patient or the doctor), it's not hard to understand why insurers are taking increasingly active roles in patient care.
[0] This isn't always bad, but think of diseases which require adherence to antibiotics (or, worse, diseases like HIV, which are chronic and for which compliance is a matter of public health) and you'll see why this can get problematic very quickly.
The problem you describe is an economics problem. Doctors and patients are shielded from the costs associated with their health care. Having insurance act as a group savings plan is catastrophic for all aspects of healthcare.
If, on the other hand, people were paying out of pocket for those tests, who cares? What is the downside of a person being more knowledgable and involved?
Unfortunately, the ACA took a step in the wrong direction by hiding more costs from the consumers. If we want a healthy health care system, we need price tags (and insurance for catastrophic events!).
I would hope no doctor would prescribe anything without agreeing to the medical benefit of said treatment (I've asked for an off-label prescription before and my doctor pushed back until he understood and agreed it was worthwhile).
A patient can't just start taking an antibiotic; the doctor has been given that gatekeeping role, and that is as it should be. Just because patients are involved doesn't mean doctors abdicate their responsibilities as well.
(Off-shore pharmacies add a whole new twist to this, and I'm not sure how you address that. I wonder, though, if antibiotic usage in industrial animal husbandry is not a bigger problem than somebody's hypochondriac relative.)
I completely agree with you. I'm pretty picky about what tests I'll take for exactly that reason: stress is dangerous to one's health and many tests have abysmal false-positive rates.
My hypothesis is that people, on balance, would be healthier if they took a more active role in their healthcare. I've seen it in a lot of people's lives, but there is a strong confirmation bias there. You don't see the people that tried and wound up worse off.
Fortunately, this is easy to study. We could find an answer to whether people are better off, and, more importantly, how to ensure they are better off.
Quote from Kaplan's Clinical Hypertension medical text:
"The practitioner must take direct responsibility for the individual patient. We know of nothing more helpful in achieving good control of an individual patient's hypertension than the home monitoring of BP. In the best of worlds, the patient could alter his or her antihypertensive regimen based on his or her home BP readings just as diabetics are allowed to alter their insulin dosage based on their home glucose readings. Such self-modification may be too much to ask, but phones, faxes, and e-mails can easily send the readings to an office assistant or practitioner who can then provide appropriate advice.
For too long, practitioners have kept patients out of the loop, either too proud to give up some of their power or too suspicious of the ability of their patients to help themselves."
I 100% agree with [1]. I used to work with a group of MDs and the paternalism was shocking. While not universal, many of them relished the role of oracle on high and were uneasy with any change which would take them off of the top of that pillar.
On the actual topic at hand, my last doctors office had a system where I could see everything they wrote on a web portal and it was eye opening. The number of times I'd say X and they'd write Y was astounding. It was primarily the nurse and not the actual MD but I learned that I needed to be very careful about everything I said as the image of me that someone would have if they only read those notes was nearly the opposite of what I was trying to convey.
Weirdly, I've found the same thing but primarily with general practitioners. I started going to internal medicine specialists (Asthma, don'tyaknow) and have had much better treatment.
> The medical community currently has an abysmal record with treating chronic health problems.
Could you elaborate on this a bit more? What sort of 'chronic health problems' are you referring to, and what is it that the medical community is failing to provide (short of cures, presumably)?
Diet is the underlying cause of (or major contributor to)[0] the vast majority of heart disease, type 2 diabetes, many kinds of cancers, kidney and liver disease, auto-immune diseases, and probably Alzheimer's and other neurological conditions. There is research backing up diet-based interventions that positively impacts or cures all of these, but instead, patients are given pills that are barely palliative.
That diet plays this role is not, of course, a surprise to anybody. The failing that I see is that every medical body has chosen to follow the "everything in moderation" line[1] instead of addressing the health needs of millions of people. The diet being promoted by these organizations is causing these problems.
Imagine a world where the AHA, the ADA, the AND, the AMA, the IoM, and every other health organization came out strongly in favor of a science-based diet[2]. When you went to your family practice physician, your endocrinologist, your dietitian, or whomever, you would hear that diet is the very best treatment, and you would hear specifics on what foods you should avoid, what you can safely partake in, and what might or might not work for you, depending on you[3].
I'm not naive enough to think this would solve all of our problems, but the amount of crap food being eaten under the guise of "everything is OK in moderation" is, literally, killing people. You go into a dietitian's office, and they are advertising sugar-filled crap whose only nutritional benefit has been added during the processing. You go into a doctor's office and food is never mentioned, but you see 85 advertisements for the various drugs that will "manage your condition". That is fundamentally the wrong approach to these problems.
I think we had so much success with treating infectious diseases in the 20th century, that we believe anything can be cured with a pill or a needle prick. Unfortunately, a lifetime of bad inputs cannot be fixed that way.
0. Unfortunately, truly proving causation is very difficult here, and it is possible that there may be other causes but the lack of proper nourishment is preventing the body from healing the damage caused elsewhere. But if a diet can prevent and/or heal them, that is good enough for me right now.
1. It's hard to believe that it's not because of the millions of dollars in contributions given by companies whose food is making people sick or by the companies who provide drugs that provide said barely palliative care. Government policy also plays an important role here, and that policy is heavily shaped by lobbying.
2. Believe it or not, there are a lot of good studies that aren't epidemiological that provide pretty clear insight into what the foundation of a good diet is. This would likely have to be customized for individuals and circumstances, but that doesn't happen.
3. I'm not going to list these here because it will derail the conversation. PM me if you are interested in hearing them.
I'm interested in the foods you should avoid (my email is in my profile).
Are you referring to the problems caused by fructose / sugar? I've been watching Dr. Lustig's lectures and he seems to have good arguments, and your post seemed to echo some of his explanations.
It's hard to blame doctors, when patients prefer to eat mcdonalds+pills over any kind of vaguely healthy diet from any model (be it ketonic or paleo or south beach or low fat or low sugar vegetarian or whole foods or whatever)
> There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.
I couldn't agree more. I've blogged about this some time ago (shameless plug)
But responsibility and control is only one side of the coin. There are numerous problems which are happening behind the curtain and people normally don't care about (EHR software compatibility, sometimes lack of EHR software, different attention to detail when doctors record the health data, etc.)
> The Internet started that, with patients able to become much more knowledgable about their own conditions
... or more deluded. I've heard of patients telling doctors that vaccines cause autism, fluoride causes impotence, etc. Because, you know, the internet said so. People who can't say what major body parts do should not tell doctors how disease processes operate.
I'm not saying you are deluded, but it seems common.
One problem with this approach is patients who are making stuff up entirely. They're not a large part of the population, but since they relentlessly seek medical attention (often to the point of self-harm), every doctor is familiar with them.
Giving such patients editorial power over doctors' notes gives them a further lever with which to manipulate the system.
It's a weird situation in which the doctor/patient relationship is actually adversarial, and it poisons a lot of otherwise good ideas predicated on the assumption that doctors and patients want the same thing.
Our fellow participant idlewords remembers a real-life incident that he wrote about eloquently.[1] I learned about this essay of his from another Hacker News participant, and am grateful for the tip.
Giving patients a copy of doctors' notes != giving them editorial power over doctors' notes.
They're doctors' notes, after all. Both the doctor and the patient can look at the screen, but only the doctor has the keyboard.
Of course, the psychological pressure to bend to the patient's wishes might be stronger if the patient can see what is being written down. But that's a kind of problem that rigorously trained professionals can learn to avoid to some extent. As you said, most doctors already know how to tell when a patient is seeking unnecessary drugs and/or procedures. Refusing to make unwarranted modifications to the records shouldn't be too different from refusing to prescribe unnecessary drugs and/or procedures. Liars gonna lie. Their ability and determination to lie is not one bit hampered by their inability to read the doctors' notes.
If someone tries to turn doctors' notes into some sort of wiki that both sides can edit, I'd be concerned. But not yet.
I write all of my notes under the assumption that the patient will read them. I consider my notes to be the patient's property - they (or their insurers) are paying me for them, anyway.
It removes needless judgment (positive or negative) which is totally useless in the doctor/patient relationship, and permits me to stay focused on the subjective and objective facts, and my assessment.
So, I think that the best way to address this would be to allow it to be mostly open. The default is for all notes from the doctors and patients visible to everyone; but doctors can write "hidden" notes that only other doctors are able to see.
In a lot of ways, I see this like a public bug tracker. For bug trackers, it's generally best for everyone to see all changes, to be kept up on what's going on and be able to most usefully provide extra information. But for security sensitive issues, or internal discussion that involves things that the end user needn't know about, many have a way of posting "protected" comments that only certain privileged users can see.
In general, you have to put a certain amount of trust in your doctor.
They are helping you make pretty life altering decisions. Now, there is a bit of a cultural barrier where they aren't used to the idea of patients being as involved in their medical care, but on the whole, they are there to help you.
If you're really all that worried about your doctor writing lots of secret notes and not letting you see them, even once there's a system in place to allow you to easily collaborate with them, maybe it's time to get a new doctor?
And what if doctors just start writing everything in the secret notes? The situation sounds exactly like what has happened with the US government classification system.
How does hidden help? An honest response to a hypochondriac is pretty obvious to any other doctor. 100x "patient complains of y, tests show no evidence"
I know more about pediatrics than about other specialties, but there are several use cases for hidden commentary in pediatrics. One is commentary about how to handle the patient's parent, who may, for example, be well-meaning but verbally abusive to staff, and the practitioner needs to be know to be constantly reassuring to avoid confrontation. Another includes notes that are about the patient, but not legally allowed to be seen/read by the parent (who otherwise has rights to a child's medical record in the US until age 18), such as discussions around sexual activity or birth control.
One of the most amusing bits in the excellent blog/book "Blood, Sweat and Tea: Real Life Adventures in an Inner-city Ambulance" there is a bit about people who pretend to be unconscious - apparently one trick for dealing with these people is for a doctor to ask in a loud voice for a "brain needle" as they need to draw off a sample... Apparently a lot of people make a miraculous recovery at that point!
I'm not sure how making notes visible, or invisible, to patients would change the adage that "patients lie". Exacerbation or reduction arguments, perhaps, but the fundamental principle I'm not sure would change.
Toward the "further lever to manipulate the system", that may be something to consider in terms of who has editorial access to the records vs. simple readability access to the records... little more.
It's not about the patient editing the record directly. It's more about the patient talking to a different doctor than the one that wrote the notes, and then saying, "oh, that's wrong. This is the right information."
If the doctor takes that at face-value (like in the article's example), I assume that it ends up on the notes.
Ultimately anyone can lie to anyone, and misplaced trust is a separate problem from letting people know. Plenty of records are incorrect, and kill people.
By hiding the records from the patients, it obfuscates the record from the patients. They can't know what's in there to correct (with truth or falsehoods) it without seeing it.
Editorial power? I must have missed that in my reading of the article. As far as I understood it, patients weren't able to redact/change their notes.
Reported symptoms and complaints are listed comprehensively, but the doctor is not compelled to do any unnecessary testing, or even falsify test results.
Because of the outrageous amount of data that is dumped into a doctor's head, he is able to recognize "hypochondriac" at a glance on the record, without that term or any other negative comments to that nature being in there.
This is mitigated quite a bit by tracking the source of information, and adding rather than ever deleting any data.
A patient can (and should!) be able to correct the doctor's notes reporting the patient's experience (symptoms, priorities, etc.), and self-reported medical history.
The patient would not be able to edit lab results, or the doctor's own notes from a physical examination, or prescriptions, and so on, though they could be able to add comments (again, clearly sourced).
Just as all data from doctors, labs, etc. is clearly sourced.
Then the open records don't make the job of the doctor any more difficult or easier. Arguably, it's not really the responsibility of the doctor to figure out, beyond some reasonable point, if he is being "manipulated" by the patient.
You just create narrow exemptions to fit those situations.
In England I'm allowed to see my notes unless it's going to harm me. I'm allowed to add annotations, but I'm not allowed to change or remove any information.
People are talking about hidden notes but it seems like a better system is to just have all the notes immutable with the ability for patients to comment on line sections (like code review tools).
This way you can correct without rewriting history.
I've met the guys behind a German startup called "Was hab ich?"[0] - which translates roughly to "what have I got?".
It's a platform that lets people post their doctor's notes and have med students interpret it for them in an easy to digest form.
It helps both patients better understand their conditions and med students learn how to read and interpret diagnosis.
It's a non-profit as far as I'm aware, since part of their philosophy is giving access to patients irrespective of their financial ability. I think it's a really neat concept. Sadly only available in German / Germany.
I'm not entirely sure, but I don't think they give any advice. The students only interpret / translate what the physician wrote in their usually-cryptic notes, and turn it into a simple, understandable form that almost any person can understand.
If I remember correctly (I don't speak German nor understand medicine), the note can say something like "test XYZ - negative results". This can sound scary to someone who doesn't understand what this test is about. The interpretation could be that negative results on this test means the patient does not suffer from some kind of disease, and this indicates normal function...
You know. I checked the source (still checking) but it really seams what they did was give patients access to their notes, and then ASK them if that improved things.
How could this honestly be considered evidence that this is a good idea? This is the standard of evidence that a Homeopath would present.
Who could take this seriously? Patients reported taking their medication more regularly, here's an obvious question: Did they actually take their medication more regularly?
Maybe somewhere in the body this is answered. Let me keep looking.
edit: NO
although self-reports fall short of objective data, open
notes may prove to be a simple intervention that has an
important effect on medication adherence.
I think this is great; I know for a fact that when I try to describe a series of symptoms to my doctor he will be typing away, and I think there's a lot of what I'm saying that gets lost going from the ears to the fingers. I also think, having both patient and doctor "on the same side" makes it seem more like a team effort and empowers people to take more of an active role in their health.
I work in a family practice every other week as a requirement for medical school. I've noticed that EMRs are very disruptive to a doctors bedside manner. For every visit the doctor types notes into a laptop while the patient speaks to her. Communication is inhibited and the doctor struggles to maintain rapport with her patient.
I would love to see the patients EMR displayed on a screen so the patient could see what the doctor typed as he spoke. This would make the process collaborative instead of one sided. It would also be a great feedback mechanism where the patient could double check that his doctor understood what he just said.
A doctor also might theorize about possible causes of the issue while trying not to implanting ideas of symptoms in the patients head. When I did computer repair, I was very careful not to put my own words in the clients vocabulary when I was still trying to gather information, as I wanted to keep from coloring their memory / experience. Same thing would apply here. Maybe a good compromise would be for the doc to summarize their notes at the end and ask for feedback.
My neurologist is relatively old-school -- he uses an EMR in the room to order scripts and lab works, however, he uses his time with me talking to me, and then enters records into his EMR in between appointments.
As such, I prefer visiting this guy (an older gentleman) versus a young, fresh out of school neuro in the same office, even though it's much, much easier for me to get into the younger neuro than my guy.
At least one of my wife's doctors does not type notes during the visit, but puts them into the computer immediately following. I think she keeps notes on paper while visiting.
I too have seen this at a chain of clinics where I live: the doctor's laptop is hooked up to a wall-mounted screen, where I can actively watch what is being typed into my reports. It surprised me too, and makes me feel much better about the whole experience.
Not having access to my own medical records is something that continues to annoy me to this day. I've heard a few arguments as to why the security is better than Fort Knox, many of these touched upon in the article ["Doctors want to be Free" and "Oh my, Liability"], but I have yet to buy any of them.
I hope this "open note" deal continues to trend, and becomes more so; horray for privacy, but bleh to "so secure, I can't see it".
As the article mentions, HIPAA gives you the legal right to access your own medical records. If you request it your hospital or health care provider they have to give you a copy. Admittedly it may not be as timely as the OpenNote system, but you do have access. (Assuming you live in the US. Does anyone know about similar laws in Europe?)
I've had Crohn's disease for about 35 years, and my experience makes me agree strongly with the article.
I have to go see my GI doctor a couple of times a year[1]. He's the department head at a teaching hospital, and so my appointments with start with a first-year resident examining me. After that, the "real" doc comes in, and the resident presents to the doc his findings and conclusions.
While I guess that some folks might object to an examination by "only" a resident, I find that this helps me because of the interchange between the resident and the teaching doc. At the same time the doctor is teaching his resident, he's also leaking that teaching to me. As a result, I come to understand my condition better than I would if were just going to a regular GI practice. And because management of a chronic disease like Crohn's is all about understanding its effects specific to your own case, getting this kind of feedback is invaluable.
[1] I moved recently, and need to find a new doctor with whom I can relate to like this. But it's easier to talk about in the present tense.
This doesn't surprise me at all, but I'm happy to see it.
Just look at how many blatant errors are in an average person's credit history, one of the most sensitive and important files any other party will ever hold about them, and mostly driven by computer-generated automatic updates. They are still borderline works of fiction for significant numbers of people.
Those credit histories are a lot more limited and objective than a person's current medical condition and past medical history, so I find it difficult to imagine even the most diligent medical professionals could collectively hold numerous conversations with a patient and perform numerous tests over the course of that patient's entire lifetime and never misunderstand something, fail to record a potentially significant fact mentioned in passing during a conversation, or simply make a mistake and record the wrong thing.
I learned something about lawyers and accountants very quickly after I started my first business. They charge a lot of money for their expert knowledge, and often they do understand subtleties in their fields that I don't, but they also still make dumb mistakes. I have found my working relationships with those professionals are dramatically improved, and the end results likewise, if we work more collaboratively. For simpler things, I get familiar with the issues (often with the expert's help) and make a first attempt myself that the expert can then review. For more complicated things that I simply can't do, we schedule time for the expert to talk me through the big picture and double-check any key details.
I cannot imagine why doctors do not routinely work the same way. It seems to offer all the same benefits and moderate all the same risks for all the same reasons. The only major difference is that in the case of a doctor it could literally be my life or quality of life at stake rather than just some numbers on a page or words in a court, which surely makes it all the more sensible to work collaboratively as much as possible.
After going through Cancer with my sister in the 1990s and then the last 5 years with my son.
YOU ARE YOUR OWN EXPERT. Everyone else always drops something about you and you ALWAYS need to remind and talk about all the issues out loud with your doctor. If they don't find a new doctor if it is a big medical issue.
"How Doctors Think is a window into the mind of the physician and an insightful examination of the all-important relationship between doctors and their patients. In this myth-shattering work, Jerome Groopman explores the forces and thought processes behind the decisions doctors make. He pinpints why doctors succeed and why they err. Most important, Groopman shows when and how doctors can -- with our help -- avoid snap judgments, embrace uncertainty, communicate effectively, and deploy other skills that can profoundly impact our health."
In some of the counties ("Landsting") in Sweden, the patient may log on electronically with a electronic ID (certificate based, issued by banks) and view their journal at any time.
All patients have a right to their journals, as far as I know - although, there might be restrictions on parts - such as psychiatric treatment I guess - and everyone can request to get a copy of their journal. A bit of a pain in the ass to obtain - but surely possible.
I just thought it might be interesting to add to the conversation/article how things are working in another country/part of the world.
As a complete outsides I don't see why anyone would be surprised, going to the doctor is quite often an expression of powerlessness, you have no idea and no control over what is going on in your own body and you need this powerful semi-stranger to do some divination on you and tell you what's wrong. Of course giving someone even a semblance of control over the proceedings helps them feel more engaged and more knowledgeable about themselves.
I think it can be pretty complex. A lot of people (especially older people) will have a preconceived idea of what they have, and come to the doctor only to get confirmation, or have a prescription. Then some will only take the drugs matching what they think they have, and just ignore everything else the doctor told them (my parents do that).
Or for people with chronic issues, there isn't much mystery about what's going on, only some variations between a month and another, most of the time. What's special is that the patient will be motivated enough to do a lot of research (in the time there was no internet, go through medical documentation, even research papers), taking time to understand well enough what's happening to them. Then, a doctor might diagnose something different than their previous doctor. Or prescribe different drugs with different side effects. Or sometimes the doctor might not be as well informed on the subject as their patient is, because it's not their specialty for instance.
These might be the cases where having transparency and trust between the doctor and patient are the most important and crucial to have the patient cooperate.
Brief article, but well-done -- this is one of the core ideas of our start-up (though we have no direct association with OpenNotes project).
I liked this in particular: Delbanco tells me that he considers OpenNotes to be "like a new medication." Just like any new treatment, it will come with unexpected side effects.
We've been negotiating these side-effects for a few years, now, with more & more success. Many of the obvious objections ("I need to discuss test results with patients before they see them!") have simple technical solutions, so we implement them (blacklist a set of tests that have a built-in delay before the actual result is shown to patients --though they can see that a new result is ready -- and give the clinician a daily list of what patients have gotten delayed-view results).
It is difficult for many doctors to get used to the idea; I have personal experience trying to get access to letters being written between specialists about me & my treatment, and just getting evasive answers even to persistent attempts. But it's so valuable to good care.
The biggest indicator of health is nutrition, yet it's one of the most poorly understood topics in medicine. Ask five different doctors and you'll get five different responses as to what are the accepted parameters in a healthy diet. What we need is a concerted research effort by governments to make headway in figuring this thing out instead of relying on research by teams funded by large agribusiness conglomerates. We also need (at least in the US) to start regulating what goes into our food. It's unacceptable to call something "lite" when you've just stripped out healthy fats and added chemical fillers made from corn sugar.
It's just as unacceptable that someone can graduate from high school without knowing how to balance a checkbook, open a checking account, or know that you should probably be reading the nutritional labels on the back of the food products you purchase... it's a societal failure.
> Ask five different doctors and you'll get five different responses as to what are the accepted parameters in a healthy diet.
You really wont. It'll be pretty much advice about eating a varied diet, not too much fat, salt, or sugar, with a lot of vegetables and a wide range of fruit and veg.
You really will. Eggs, for example, have been controversial forever [0]. And who could forget the USDA Food Pyramid, encouraging people to eat 6-11 servings of carbs [1]? The 90s heralded the low-fat craze with the mantra "Sugar doesn't make you fat. Fat makes you fat." [2] We've swung the other way in recent years with the anti-carb options that started in earnest with Atkins and branched out to keto/paleo.
Nutrition is tricky and is heavily marketed by extremely powerful industries.
the only problem - in the US - with this is that the more you tell them the more they will bill you. It's like as if every little piece of information that otherwise should help a doctor identify what's wrong and result in a faster and more accurate diagnosis makes the billing department's job that much easier. Now they don't have to break down one single item and charge you 10 ways, they can break down each of your statements and charge you 10 ways for each.
From personal experience, I saw how a level 1 sprained wrist ER visit turned into a level 4 case, using some of my detailed description to establish criteria that made the case seem bigger than it actually was.
Doctors writes too bad (poor hand writting) that sometimes patients cant understand. In India we are talking about a rule ( law ) where doctors have to write in CAPITAL only.
That's going to be a non-issue once doctors start typing instead of writing. Maybe there should be a rule that requires doctors to type their notes whenever possible.
I'm not even talking about a real computer, which might be too expensive for doctors in rural India to purchase and maintain. Even a 60-year-old mechanical typewriter should be better than most people's handwriting.
In 90% of the cases this is a non issue, if you visit any doctor in any India metro, the guy will never write you a prescription which isn't available with the medical shop they tie up with.
These days I can more or less guess what medication the doctor where I regular go to generally writes.
Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes.
My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).
The medical community currently has an abysmal record with treating chronic health problems. There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.
1. Source: my wife is part of that community and sees it regularly.