hear that, being multiply disabled myself with complex medical needs but presumably such concerns are driven by 💯 justified fundamental distrust in e.g. US health system (excessive control of insurance companies/current govt's fascism), and whether or not patients could control access to their data?

They would use all that info as ammunition to *not* treat.

It's a factor for sure but not the main one. It has more to do with being dismissed by the actual doctors and nurses themselves. They usually try to refer you back to your GP/specialists instead of trying to treat. Heaven forbid you have tattoos, colored hair, or a chronic pain diagnosis.

hard relate, I have #SevereME and even just within that #ChronicIllness sub-community so many #pwME have shared horrific experiences of ER staff completely dismissing e.g. life-threatening symptoms. and I went through exactly that multiple times back when I had a rare disease (adrenal insufficiency)