I know people are fearful of a medical database, with some reasoning, but I'm living in Canada and all healthcare providers access a single system. It's great. Change doctors or go to a specialist and they can immediately see your whole record. End up in the emergency room, they know your history.1/
Is this database an independent ecosystem for medical providers or a government database? My doctors can see my records across different healthcare providers but it doesn’t get pumped directly to Palantir.
fwiw my post about the system here in Australia which I understand to be fundamentally the same as in Canada (and the UK) i.e. government-held with varying degrees of access available to - or restrictable for - HCPs/third parties (noting here at least insurance companies don't "control" everything!)
Yeah that would be a downside for almost all disabled folks, especially in the ER.
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)
So a medical database isn't inherently bad, but I definitely wouldn't want a private company running it. 2/2
in Australia we have a similar govt digital health records system but it's newer so less broadly / automatically integrated than Canada's patients have full access and controls e.g. you can: - view your results, reports, etc - restrict access (HCPs need a code from you to view) - opt-out entirely 1/
the system was introduced in 2012 as opt-in but uptake was very low so in 2016 it switched to opt-out creating a huge backlash re: privacy and security concerns many people opted out which I 💯 understand however my complex medical needs overrode such concerns; I'd opted in from the very start but 2/
it was utterly useless: very few providers uploaded data; patient UI was clunky af over the years system updates have helped: improved infrastructure providing interoperability for HCPs updating data and the patient UI is less-shit however it's still poorly understood and patient usage rates are low
In the US it will be along the lines of yanking people's health insurance if they don't log enough steps.
Is that database operated by a for-profit private business operating under an authoritarian regime who isn't hiding the fact that they will very likely use this information against its citizens?
the database being operated by the government is a bridge too far at this point. You can only trust it as far as you trust the government. And if you trust any government at this point, look at the USA for an example of how fast things can turn (and the database will still exist).
I’d give the Canadian government access to my health data without a second thought - but unfortunately I don’t live in Canada
It could, hypothetically, be great. But there's nothing this administration is doing with government systems that inspires confidence that this won't be a net negative.
Yeah, exactly. No fucking way they're going to use this info to make healthcare or human services better for us
RFK jr has already floated the idea of sending people on antidepressants and ADHD meds to "wellness farms" (aka labor camps), so I would NEVER hand over my medical info to this administration.
Not voluntarily! Lord knows what they've scraped together thanks to DOGE and the muskrats.
I recently received a letter from one of my specialists letting me know that my entire health history was accessed by an "outside entity" on February 14th. We know what happened on February 14th.
😱😱😱
jfc. that's... scary af. how appalling for you 😢