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Comment by jtbayly | Hacker News Reader

I think the ultimate answer is that people must take responsibility for their own health and that of their children and loved ones. That includes research and double-checking your doctors. True, the result is that a good number of people will be convinced they have something (eg. autism) that they don't. But the anecdotes are piled up into giant mountains at this point. A good number of people in my family have had at least one doctor that has been useless in dealing with a particular problem. It required trying to figure out what was wrong, then finding a doctor that could help before there were correct diagnoses and treatments.

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Patients should always advocate for their own care.

This includes researching their own condition, looking into alternate diagnoses/treatments, discussing them with a physician, and potentially getting a second opinion.

Especially the second opinion. There are good and bad physicians everywhere.

But advocating also does not mean ignoring a physician's response. If they say it's unlikely to be X because of Y, consider what they're saying!

Physicians are working from a deep well of experience in treating the most frequent problems, and some will be more or less curious about alternate hypotheses.

When it comes down to it, House-style medical mysteries are mysteries because they're uncommon. For every "doc missed Lyme disease" story there are many more "it's just flu."

> Patients should always advocate for their own care. This includes researching their own condition

I believe you do not fully appreciate how long and exhausting this is especially when sick...

Nothing he stated suggests this. Not giving a nod to how difficult it is doesn't mean people don't care. Unfortunately it is still true, we all have to advocate for our own care and pay attention to ourselves. The fact that this negatively affects the people who need the most care and attention is a harrowing part of humanity we often gloss over.

A boxing referee says "Protect yourself at all times."

They do this not because it isn't their job to protect fighters from illegal blows, but because the consequences of illegal blows are sometimes unfixable.

An encouragement for patients to co-own their own care isn't a removal of a physician's responsibility.

It's an acknowledgement that (1) physicians are human, fallible, and not omniscient, (2) most health systems have imperfect information sync'ing across multiple parties, and (3) no one is going to care more about you than you (although others might be much more informed and capable).

Self-advocacy isn't a requirement for good care -- it's due diligence and personal responsibility for a plan with serious consequences.

If a doc misses a diagnosis and a patient didn't spend any effort themselves, is that solely the doctor's fault?

PS to parent's insinuation: 20 years in the industry and 15 years of managed cancer in immediate family, but what do I know?

I see.

My question is, since you understand this very well, how successful are patients (that manage the effort) at both acquiring scientifically accurate knowledge and improving their health meaningfully?

And maybe share some tips like good knowledge databases?

I've seen patients (both family and non) meaningfully improve their health outcomes with statistically-significant frequency primarily via 4 methods.

1. Take ownership of their own medical records, learn them, and bring them to appointments. The most common failure in the current US medical system is incomplete/missing record transfer because of disconnected systems. Physicians will almost always attempt to confirm critical details, but that doesn't help if the patient says "I don't know."

2. Learn basic medical system-level knowledge relevant to a case. E.g. college 1xx freshman-level. No need to become an expert, but if a patient is dealing with kidney issues... it's pretty important to learn the basics about what kidneys are and do.

3. Ask about alternatives. "If we didn't go with that plan, what would be your next two recommended plans, and why aren't they first?" Having that alternative context is especially helpful when visiting specialists / other parties, as the patient can more fully describe the thinking behind their treatment plan. Also when researching online, the context helps avoid obvious pitfalls. (And yes, sometimes the reason will be "Because your insurance wouldn't cover X", which is also useful to know)

4. Use second options to measure uncertainty about the primary plan (e.g. everyone agrees vs it's debatable), but don't treatment-shop. The useful piece of information is opening a discussion about specific alternatives, while also listening to reasons against them.

Peer reviewed studies are surprisingly accessible (e.g. PubMed et al.), but they're also functionally useless without basic medical knowledge and details about a specific case.

Finally, for potentially lethal and/or lengthy conditions, I'm a firm believer that any empowerment improves outcomes simply by making the patient feel more involved and in control of their care.

Almost every "that could have been avoided" case I know was a willfully-ignorant and/or disinterested patient.

This applies to all areas of life, not just medicine.

We trade away our knowledge and skills for convenience. We throw money at doctors so they'll solve the issue. We throw money at plumbers to turn a valve. We throw money at farmers to grow our veggies.

Then we wonder why we need help to do basic things.

> researching their own condition what a joke. so if I am sufferring with cancer, I should learn the lay of the land, treatments available ... wow. if I need to do everything, what am I paying for ?

Face-time. Their knowledge, training, and ability to write letters. Just because it's expensive, doesn't mean they are spending their evenings researching possible patient conditions and expanding their knowledge. Some might, but this isn't TV.

Anyway, what are you paid for? Guessing a programmer, you just sit in a chair all day and press buttons on a magical box. As your customer, why am I having to explain what product I want and what my requirements are? Why don't you have all my answers immediately? How dare you suggest a different specialism? You made a mistake?!?

But we are idiots.

There's a reason why flour has iron and salt has iodine, right? Individual responsibility simply does not scale.

We are idiots who will bear the consequences of our own idiocy. The big issue with all transactions done under significant information asymmetry is moral hazard. The person performing the service has far less incentive to ensure a good outcome past the conclusion of the transaction than the person who lives with the outcome.

Applies doubly now that many health care interactions are transactional and you won't even see the same doctor again.

On a systemic level, the likely outcome is just that people who manage their health better will survive, while people who don't will die. Evolution in action. Managing your health means paying attention when something is wrong and seeking out the right specialist to fix it, while also discarding specialists who won't help you fix it.

> We are idiots who will bear the consequences of our own idiocy

This is just factually not true. Healthy people subsidize the unhealthy (even those made unhealthy by their own idiocy) to a truly absurd degree.

Well, the biggest consequences aren't financial, they're losing your quality of life, or your life itself.

Sure?

So they do end up bearing most of the brunt of their own decisions. But you're also right, it's not entirely on them.

But the effects aren't just financial, look in an ER. People who for one reason or another haven't been able to take care of themselves in the emergency room for things that aren't an emergency, and it means your standard of care is going to take a hit.

Ah yeah, good point.

Neither does collective responsibility, for the same reason, particularly in any sort of representative government. Or did you expect people to pause being idiots as soon as they stepped into the ballot box to choose the people they wanted to have collective responsibility?

>But the anecdotes are piled up into giant mountains at this point

This is disorganized thinking. Anecdotes about what? Does my uncle having an argument with his doctor over needing more painkillers, combine with an anecdote about my sister disagreeing with a midwife over how big her baby would be, combined with my friend outliving their stage 4 cancer prognosis all add up to "therefore I'm going to disregard nutrition recommendations"? Even if they were all right and the doctors were all wrong, they still wouldn't aggregate in a particular direction the way that a study on processed foods does.

And frankly it overlooks psychological and sociological dynamics that drive this kind of anecdotal reporting, which I think are more about tribal group emotional support in response to information complexity.

In fact, reasoning from separate instances that are importantly factually different is a signature line of reasoning used by alien abduction conspiracy theorists. They treat the cultural phenomenon of "millions" of people reporting UFOs or abduction experiences over decades as "proof" of aliens writ large, when the truth is they are helplessly incompetent interpreters of social data.

You can tell me that I'm as crazy as people who believe they've been abducted, but I'm still going to be my own health advocate. :)

They’re not saying you’re crazy they’re saying you may be helplessly incompetent when it comes to interpreting social data. You probably aren’t a good reader either if crazy was your takeaway.

As of course you should be. Doctors, who are generally pretty caring and empathetic humans, try to invoke the mantra "You can't care about your patient's health more than they do" due to how deeply frustrating it is to try to treat someone who's not invested in the outcome.

It's when "being your own health advocate" turns into "being your own doctor" that the system starts to break down.

> Does my uncle having an argument with his doctor over needing more painkillers, combine with an anecdote about my sister disagreeing with a midwife over how big her baby would be, combined with my friend outliving their stage 4 cancer prognosis all add up to "therefore I'm going to disregard nutrition recommendations"?

Not sure about your sister and uncle, but from my observations the anecdotes combine into “doctor does not have time and/or doesn’t care”. People rightfully give exactly zero fucks about Bayes theorem, national health policy, insurance companies, social dynamics or whatever when the doctor prescribes Alvedon after 5 minutes of listening to indistinct story of a patient with a complicated condition which would likely be solved with additional tests and dedicated time. ChatGPT is at least not in a hurry.

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