Ask HN: How do you keep track of your medical history?
We've all had to fill out forms that ask about our medical history. As I age, I realize that remembering the specifics is getting increasingly hard. I have a bunch of hints about the miscellaneous appointments I've made scattered around 10 different digital health record systems. I can sometimes piece together a good enough history with a little effort, but it would be good to have a personal, secure place to store all the names, appointments, procedure names, and maybe even imaging.
Does anybody have a solution better than racking your brain or emacs org mode (which would be an improvement for me)? It looks like 1Password has some basic functionality for this, but I haven't used it yet. What's your approach to solving this problem right now?
28 comments
[ 0.24 ms ] story [ 75.3 ms ] threadIf the day comes where you have to call an ambulance because you feel like you have a heart attack, you should not have to rely on your OS not being busy with rebooting for updates, or the cloud not having locked you out of your account with the files, or any other of the shenanigans computers do, or yourself still being physically capable of entering your password.
And even if all of the above work fine - then what? Do you think the EMTs will wait for your printer to boot and spew out its ink?
Create a physical folder called "For emergencies", put all the relevant documents for doctors in it, nothing else.
If an emergency happens, shove it into the hands of the EMTs, done.
(And ideally have two copies of this folder in case they lose the one you hand out.)
I'm not sure if it is nation wide (U.S.) but there is also the Vial of Life program. It is a vial with a small document containing all the pertinent info. Place document in vial, place vial in the freezer of the refrigerator. It usually comes with a magnet that is placed on the door of the fridge.
The pertinent info:
Name
Age and date of birth
medical history (high blood pressure, diabetic, etc)
list of medications
list of allergies
In a true emergency where you call an ambulance this is really all you need.
The gist is I maintain my own timeline which is a table that has date, doctor name/phone, test results, corrective actions, and attachments.
Attachments are things like lab results, doctors notes, bills, etc.
I bought a scanner which you might see in a doctors office to scan all paper documents and attach. I use a Brother ADS-1200.
1Password is used to manage logins to health data systems. But I try to extract as much data as possible into my personal notes.
I have a lot of other stuff in Apple Health (HR, activity, nutrients, etc. tracking).
https://www.meremedical.co
I will give this a whirl asap.
Ages ago, I did some integration for prescriptions (what became allscripts, and another company whose name I forget). Maybe I can help there.
And please keep us posted.
https://github.com/fastenhealth/fasten-onprem
If you're interested, I'd love to chat.
Ideally, I would prefer the USA had universal medical ID cards which store medical history, like Taiwan does. That way I could just bring my ID card to any healthcare provider and know it will contain all my history.
It means that I have a complete chronological record, but god help me if I have to find something specific.
This solution was chosen because the only reason I’d need to go back through it all would be an exceptional one, and it hasn’t happened yet, so I optimised for minimum time to file the record rather than retrieve.
For ease of finding records personally, I have also scanned all of those documents and stored them in a self hosted instance of paperless-ngx along with a standard 1-2-3 backup strategy. In case something happens to the physical file, I should be able to recover the information pretty quickly
I struggle with epilepsy, which presents itself in severe migraines. 2 out of 4 ER trips that I had in Germany resulted in me having to justify my emergency treatment plan (just give me Diazepam and something anti-nausea and let me sleep).
I have since moved to the UK and, fortunately, did not had to call emergency services yet, but I do have my full medical history on paper, with a translated summary that references the history. An even shorter summary is also available on my apple Medical ID, including the location of those documents.
TL;DR Don't take your health for granted, make your own efforts to preserve it and make it easier for emergency services to help you.
If it happens at all, exchange of medical data mostly occurs on paper, which means it'll neither be searchable, nor even easily accessible at a later stage.
for your own record keeping I've seen many people put all their accumulated files into a folder (digital or physical) and keep it somewhere safe.
for the event of emergency, just print the progress notes from all your recent clinic visits (by law the office has to provide access to patients for this now) and put the last year's in a physical manilla envelope (emphasis on physical)
Mid 2000s, I worked on an EMR with a "physician portal" front end and a "federated" backend sharing data across orgs and services.
I made our first "patient portal", think MyChart, which our sales team shopped around. Very little interest.
Have you ever had to correct simple stuff like your prescriptions? Over and over again? Because it seems your corrections never seem to take hold and propagate thru the system?
I can tell you exactly why. My team fixed the data models and queries for things like prescriptions, current and historical.
(Our portal even had a browser-based DICOM medical image viewer. Non-clinical grade, of course. But it worked and blew people's minds, at the time.)
Alas, M&As (both us and our clients), the 2008 economic crash, and supremacy of EPIC, Cerner, and the like swept away all our progress. Like it never happened.
--
Any way. Today I just do what every one else here suggests: Keep the papers, scan the important stuff, and have an up to date summary in Notes.app. And then grind my teeth while reviewing (and correcting) my history with each new provider.
I started working on an open-source project to electronically pull my medical information from various healthcare providers, and store it locally (no cloud involvement at all).
https://github.com/fastenhealth/fasten-onprem
It's definitely an early beta, only 1500 healthcare providers are currently supported, but I'm working on a big update to bump that up to ~10k. The UI is also a work in progress. I'd love to hear your thoughts!