It's not at all difficult for a scientifically literate person to be more up to date on the literature of something they have, or could have, than even a specialist in that broad area. There's too many disorders and not enough time.

I have something that about a quarter percent of individuals have in the US. A young specialist would know how to treat based on guidelines but beyond that there's little benefit in keeping up to date with the latest research unless it's a special interest for them (unlikely).

Good physicans are willing to read what their patients send them and adjust the care accordingly. Prevention in particular is problematic in the US. Informed patients will have better outcomes.

My PCP and I have a really good rapport, and so when I stated having weird confusing health problems they were quite happy to hear what I was finding in PubMed and then share their thoughts on it, and together we figured things out and got my situation handled. I thought it was a nicely complementary situation: they didn’t have the time to do a literature dive, and I didn’t have the expertise to fully understand what I was reading.

But I bet what happens more often is patients showing up with random unsubstantiated crap they found on Reddit or a content farm, and I can understand health care providers getting worn down by that sort of thing. I have a family member who believed he had Morgellon’s Disease, and talking to him about it was exhausting.

> Morgellons (/mɔːrˈɡɛlənz/) is the informal name of a self-diagnosed, scientifically unsubstantiated skin condition in which individuals have sores that they believe contain fibrous material.[1][2] Morgellons is not well understood, but the general medical consensus is that it is a form of delusional parasitosis,[3] on the psychiatric spectrum.[4]

Your family member... mistakenly believed that he had a psychiatric condition involving a mistaken belief?

No, he believed he had Technicolor skin parasites. Suggesting it might be a psychiatric condition was a good way to start a nasty fight.

I’ve observed people in this “community” from a distance.

Does your family member have the sores?

I think this is similar in other fields, and appears to be related to your self-esteem. Some junior (and sometimes even senior) developers may have hard time accepting improvements on their design and code. If you are identified with your code, you may be unwilling to listen to suggestions from others. If you are confident, you will happily accept and consider suggestions from others and are able to admit that anything can be improved, and others can give you valuable insight.

Similarly, it appears that some doctors are willing to accept that they have limited amount of time to learn about specific topics, and that a research-oriented and intelligent patient very interested in few topics can easily know more about it. In such a case a conducive mutual learning experience may happen.

One doctor told me that what he is offering is statistical advice, because some diseases may be very rare and so it makes sense to rule out more common diseases first.

Other doctors may become defensive, if they have the idea that the doctor has the authority and patients should just accept that.

which includes me / my parents, though we found a thankfully excellent primary care doctor while I was growing up who took the new information in stride and chased promising paths we managed to find. we learned a lot from each other in the process.

doctors don't generally have the time or inclination to spend unpaid time doing specialized research for one of their many patients. competent layman efforts are generally huge wastes of time compared to asking a specialist, but in the absence of a specialist they can still be extremely useful, and specialists don't know everything either. plus there aren't always specialists, whether affordable/accessible or sometimes existent at all.