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When Patients Read What Their Doctors Write

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Re: When Patients Read What Their Doctors Write

#51

Post by SoftwareMaven »

nmjohn wrote: post #45
SoftwareMaven wrote: post #39

Earlier quoted context omitted.

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…

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…

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.

Re: When Patients Read What Their Doctors Write

#52

Post by shortstuffsushi »

SoftwareMaven wrote: post #51
nmjohn wrote: post #45

Earlier quoted context omitted.

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…

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 doct…

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.

Re: When Patients Read What Their Doctors Write

#53

Post by SoftwareMaven »

shortstuffsushi wrote: post #41
SoftwareMaven wrote: post #4

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…

> 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.

Re: When Patients Read What Their Doctors Write

#54

Post by SoftwareMaven »

pyre wrote: post #47
SoftwareMaven wrote: post #40

Earlier quoted context omitted.

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 t…

Well, I can think of one downside to just giving the demanding people what they want: over-use of antibiotics creating 'super' strains of bacteria. (I realize that you're specifically talking about tests, but I see tests as just an example of the, "I know better than the doctor," people.)

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.)

Re: When Patients Read What Their Doctors Write

#55

Post by SoftwareMaven »

shortstuffsushi wrote: post #52
SoftwareMaven wrote: post #51

Earlier quoted context omitted.

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 doct…

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…

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.

Re: When Patients Read What Their Doctors Write

#56

Post by SoftwareMaven »

DanBC wrote: post #46
SoftwareMaven wrote: post #40

Earlier quoted context omitted.

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 t…

> What is the downside of a person being more knowledgable and involved? More tests does not mean more knowledgeable. It just means the patient has more noise to either listen to or ignore. That has consequences: stress from some test result; taking action based on a test result when there's nothing wrong; and so on.

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.

Re: When Patients Read What Their Doctors Write

#57

Post by judk »

nmjohn wrote: post #45
SoftwareMaven wrote: post #39

Earlier quoted context omitted.

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…

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…

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.

Re: When Patients Read What Their Doctors Write

#58

Post by judk »

SoftwareMaven wrote: post #53
shortstuffsushi wrote: post #41

Earlier quoted context omitted.

> 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 die…

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)

Re: When Patients Read What Their Doctors Write

#59

Post by judk »

lambda wrote: post #24
idlewords wrote: post #5

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 relat…

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 m…

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"

Re: When Patients Read What Their Doctors Write

#60

Post by judk »

pyre wrote: post #50
drdeadringer wrote: post #14

Earlier quoted context omitted.

> patients who are making stuff up entirely 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 ac…

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.
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