[ethbr1]

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."

[qiine]

> 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...

[pardon_me]

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.

[ethbr1]

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?

[qiine]

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?

[ethbr1]

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.

[chneu]

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.

[geekasm]

> 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 ?

[pardon_me]

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?!?