Maybe it's a good idea for a patient to hire out a medical librarian if diagnosed with a terrible disease that lacks well known treatments. Part of the problem is that doctors know their sphere of influence, but new information is cumbersome, constantly evolving, and diffuse. No one can keep up with it all, let alone any physician who is already probably working 50, 60, 70 hours per week treating patients. I would say it's always in a patient's best interest to gather as much knowledge as possible for their self. Second, third, and fourth opinions should always be sought for life threatening diseases (provided that it's not an emergency, obviously).
This is certainly the biggest problem. But if you're paying a hundred thousand dollars, or your insurance is paying five times that, relevant medical research should come with the package.but new information is cumbersome, constantly evolving, and diffuse. No one can keep up with it all, let alone any physician who is already probably working 50, 60, 70 hours per week treating patients.
Your insurance company has no interest in you having an excess of information. What they will cover in the majority of cases is limited to standard care. Sadly, they will not be paying for your bone marrow cells any time soon. The FDA will not help in this regard either.