Fragmented medical records delayed treatment for months
My whole family got our health records stolen through a data breach a few years back. Since then, I've been obsessed with the problem of fragmented health data. Plus, my uncle traveled to Turkey for alcoholism treatment. It took MONTHS to get started because his medical records were scattered across different hospitals and systems. Doctors couldn't access his full history, which delayed care when he needed it most. I got really pissed off and when I went down the rabbit whole of research, turns out this problem was freaking common. They sell our data, it get hacked, it's hard to access and practically use it in any way without consent from us and on top of that researchers get affected too. All because of these institutions and big pharma. And i know the current adminitration announced having all of our health records in one place but that hard to trust. SO I decided to create a way we can all have our records in one encrypted vault and when someone(doctors, researchers and sport labs) request access, you can license access and get incentivized by doing so.On top of that you also control and own it.
Please tell how I can improve this, if you have any questions and wether or not it resonates.
There's actually a simple, low-tech, decentralized solution to this problem, for those of us who like such things. It's compatible with all providers, and even works across countries.
Step 1: Ask for, and obtain your medical records from your providers.
Step 2: Once you have your medical records in your possession, keep them organized, and share them with whoever you want, whenever you want.
I just keep them like one directory per doctor/provider, and dated filenames like dr-foo/2023-02-24-chest-xray.pdf or whatever.
Patients have an absolute right to their medical records, test results, with very few exceptions. It is _not_ hard to get access, just ask, and if you have any trouble, talk to whoever hands out and takes away the medical licenses in that jurisdiction.
If you have all your records, its easy to switch providers whenever you want, get second opinions, and do your own research. It can be pretty interesting seeing the raw notes from doctors, getting the DICOM files for x-rays/ct/mri imaging too.
Just keep, and take responsibility for your own data, it is not realistic to expect providers, the government, or any business to do this for you.
Are you familiar with Health information exchanges (HIE)?
This is a very challenging and important problem. I encourage to keep working on it.