"do your own research" may get mocked, but it's often the best strategy. You just have to make sure it's the right place, professional guidelines, pubmed, and anyone referencing those is usually best. A good doctor won't have issues discussing something from that kind of source.
Right, and the approach here isn’t to take the research at face value. It’s to take the research and derive questions, and then ask your doctor. You can be aggressive.
I had a rare and very complicated surgery for my cancer. I researched it heavily, and going into the appointment I already knew how the surgery should be performed. I asked the surgeon many questions, including how often he performs this surgery, for how many years, and how many complications he has. He was a bit offended. I also asked him how he would do the surgery, and he told me a rarer, more complicated method that is typically reserved for pre-chemo patients (chemo melts your insides, makes some surgery more complicated).
I told him this was unusual, not standard of care, and that I was skeptical. And he methodically laid out why I was a good candidate even though I’ve had chemotherapy. The surgery was very successful, and he was a fantastic surgeon.
But you still have to push. And if you don’t get the answers you need, you go somewhere else.
Also, research yourself and all the ways that you differ from the norm. Medicine makes its recommendations based on a standard patient, and knowing the ways in which you are not a standard patient and ensuring your doctors have this information is important.
For example, I have very weird/non standard genetics when it comes to processing medications, so I've had to learn which classes of drugs I need very small doses of or that I can't take at all. (Some drug classes aren't made in small enough doses for me to take safely). So I have to relay this to doctors and we make our medication decisions accordingly.
Or if you run hot or cold. My body temperature is usually a ~ 96.5, so I'm feeling awful by the time my temp hits 99.5, even though that doesn't register as a problem generally.
Or how I pushed to get a mammogram covered before it is ordinarily because my mother, grandmother, and great-grandmother have all had 3+ rounds of triple-negative breast cancer even though they don't have the BRCA genes: the standard recommendation doesn't fit our family and I am high risk despite not having the standard markers for being so.
When a measure becomes a target, it ceases to be a good measure. If an article/research quality is assessed by if it appear on pubmed, then appearing on pubmed becomes target for all research. And thus appearing on pubmed stops from being a good indicator.
You can ask for specific ways this can happen. But that would be point less. Human behavior and incentives work in ways that are beyond specifics.
Everyone here probably knows this already, but forgets it when it comes to medical domain.
You supply it to an LLM, I suppose. In my case, both my parents are surgeons so I have a highly aligned information source but with the most modern LLMs and good prompting discipline (you have to be good about encouraging anti-sycophancy etc) I get high concordance.
My dad enjoys seeing if the chatbots can diagnose odd stuff and they do very well to his great delight.
I will warn you, though, that if you’re a poor user of LLMs you will get bad results so don’t do this if you can’t prompt any frontier chatbot appropriately.
Having dealt with the medical system recently, if there isn’t immediate harm involved with waiting, always advocate for yourself and consider a second opinion. The doctors will think you’re annoying and that you trust the internet too much but it’s their job to make you understand why elective procedures are necessary. Don’t let someone trying to rush to their next patient hurt your health outcome. I think in emergency situations this all changes though.
During my wife's second pregnancy, we got a lot more information and did more preparation than for the first.
Someone shared the BRAIN acronym for making decisions.
Can't remember it exactly, but it was like ask / think about benefits, risks, alternatives, intuition, doing Nothing (for now).
I think the Nothing one was the most important, what happens if I don't take action and defer the decision. Medical professionals often make you feel like a decision is urgent when sometimes it is not.
I like that rule. I’ve also found that for most things that are risky enough to warrant a second opinion it will probably take long enough to get in that you can schedule it several months in advance and then use the intervening time to learn more although calling medical offices to schedule appointments is no fun.
Ripped from another comment, I’ve gotten good at advocating for myself:
Do extensive research before hand. AI can aide research, but you have to prompt it right. Tell it to do web searches, and tell it to only use trusted vetted sources and papers.
And the approach here isn’t to take the research at face value. It’s to take the research and derive questions, and then ask your doctor. You can be aggressive.
I had a rare and very complicated surgery for my cancer. I researched it heavily, and going into the appointment I already knew how the surgery should be performed. I asked the surgeon many questions, including how often he performs this surgery, for how many years, and how many complications he has. He was a bit offended. I also asked him how he would do the surgery, and he told me a rarer, more complicated method that is typically reserved for pre-chemo patients (chemo melts your insides, makes some surgery more complicated).
I told him this was unusual, not standard of care, and that I was skeptical. And he methodically laid out why I was a good candidate even though I’ve had chemotherapy. The surgery was very successful, and he was a fantastic surgeon.
But you still have to push. And if you don’t get the answers you need, you go somewhere else.