Patients who know their conditions to the extent that they're able to have a well informed discussion with you at the visit are still quite uncommon. Most people google their diagnoses and glance at the top 2-3 hits, but very very few really dig deep into the guidelines, physiology or publications to see if what is being recommended makes sense. I think there's still a lot of faith being placed in experts, which in my opinion is appropriate because the likelihood of someone misunderstanding what they've read still exceeds the chance that they've uncovered ways to further optimize.
That being said, learning is always good. I always encourage people to discuss anything they've read with me. I print out guidelines, trial data, etc in the interest of leveling the playing field and complete transparency. There's really no point in trying to maintain an information gradient.
Now the article is not about understanding your disease, but rather, having complete access to your medical records- which is a related but different issue. Unfortunately, 99% of people have no idea what people are writing about them and I find that really troubling. Not sure why, but patients still seem to feel that it's somehow antagonist to ask to have a look. Like it's some threat or precursor to a lawsuit. It's not. When I turn the screen and ask the family to gather around so I can explain stuff, there's often hesitation or even surprise - "What? Can I really look at that? Is that ok?". Yes You Can folks.
That being said, learning is always good. I always encourage people to discuss anything they've read with me. I print out guidelines, trial data, etc in the interest of leveling the playing field and complete transparency. There's really no point in trying to maintain an information gradient.
Now the article is not about understanding your disease, but rather, having complete access to your medical records- which is a related but different issue. Unfortunately, 99% of people have no idea what people are writing about them and I find that really troubling. Not sure why, but patients still seem to feel that it's somehow antagonist to ask to have a look. Like it's some threat or precursor to a lawsuit. It's not. When I turn the screen and ask the family to gather around so I can explain stuff, there's often hesitation or even surprise - "What? Can I really look at that? Is that ok?". Yes You Can folks.