Re:The Billionaire Who Controls Your Medical Records (2021)
by hanklazard on Sunday August 06, 2023 @10:07PM
(#37029171)
I’m sorry, that’s terrible. Best wishes to her and your whole family.
Re:The Billionaire Who Controls Your Medical Records (2021)
by analogj on Monday August 07, 2023 @08:05PM
(#37042682)
Sorry to hear about your wife's health issues, I hope she's on the mend.
I had a similar experience when dealing with my chronic condition. Had to interact with almost a dozen different health portals, a couple of which were ok, the rest were awful.
I'm a software engineer, so I ended up creating my Personal Health Record (PHR) application, which I eventually open-sourced - https://github.com/fastenhealth/fasten-onprem
It's still a work in progress (and definitely not ready to be used as the primary source-of-truth), but I'm always looking for actionable feedback/contributors. I'd love to hear your thoughts
The two hospitals on Epic are great - all of her records are immediately exchanged. The third hospital has a shitty cerner system and has problems sharing between departments. The cancer center has an excellent patient portal but doesn’t integrate.
Ultimately these problems are difficult as the creation of Medicare and Medicaid happened during the early days of computing. So we’re stuck with 75 years of legacy.