[sithu]

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.

[vacri]

the likelihood of someone misunderstanding what they've read still exceeds the chance that they've uncovered ways to further optimize.

It's also worth noting that many of the "I had access to my own records and it was great" stories are of autodidacts who already know how to consume and digest complex information. The first story in the article is of a PhD student. Not everyone is like this, and that's worth remembering. A simple example is the vaccines-create-autism movement, full of people who aren't digging deep into the treatment or research. They see their child is affected, they are upset, and so they look for something to blame and rail against, causing lots of damage for other people.

People certainly feel a lot more in control if they can see what the experts are thinking about their condition, but there is some selection bias in the stories that accompany these articles. On the whole I absolutely think medical records should be shared with patients (except in certain cases, eg discussion of certain mental illnesses), but whatever guidelines we come up with should remember we're talking about an issue affecting "the general public" not "PhD students and medical scientists".