Ask HN: How do you keep track of your medical history? | Hacker News Reader

Ask HN: How do you keep track of your medical history?

44 pointsqntty28 comments

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?

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This may sound odd, but: Paper.

If 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.)

Computer storage plus print out in advance would be as good.

Exactly, small paper in my wallet for a really important stuff. And then a folder at home.

Yes exactly.

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.

Ha, funny timing. I’m building a PWA as a side-project that lets me sync all of my medical records from different patient portals in one place. It’s pretty far from being production ready but maybe you’ll find it useful?

https://www.meremedical.co

Hey! My name is Jason, I'm the developer of Fasten Health - which seems to be a similar open-source project.

https://github.com/fastenhealth/fasten-onprem

If you're interested, I'd love to chat.

Great minds think alike! I'll shoot you an email

Thanks for sharing! Looks fantastic.

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.

Your project is superb. Great purpose, and a solid start with the two medical records providers. Kudos!

Inept and incorrect medical history record keeping is a problem that makes me seethe with impotent rage.

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 use Obsidian for my personal notes which include medical history. I previously used OneNote.

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.

Hey, So I recently had a similar problem -- had a semi-serious medical issue, had to go to a number of different medical institutions, all of which asked me for a comprehensive medical history. I was able to give them high-level answers, but some of the details were hard to recall.

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!

(I’m in the uk) Anything medical history related comes in a letter, the letter gets hole punched and goes in an A4 binder at the front.

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.

Paper. As another poster here mentioned, in case of emergencies paper is the only reliable medium. I have two files of medical records that are chronologically ordered. When I need to go to a new doctor, I just pick up the relevant file and go; hand it over to them and let them scan whatever history they want into their system.

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

A folder in Notes.app. Syncs automatically across all my devices. The important stuff is copied to MedicalID so others can access it on my phone if it's locked.

Wait, we're supposed to keep track of our medical history? I just figure my GP has anything important. (Germany)

No, in Germany specifically they don't, at least not reliably, because records are scattered across healthcare providers and generally not readily shared between providers (because "data protection").

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.

Fellow German here. Your GP probably knows you best, but consider what happens if an emergency happens while you are somewhere else, especially abroad.

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.

I have a folder on my laptop (backed up in a few places) with PDFs of labs, other reports, etc. I have DICOM of some specific imaging, but haven't had a whole lot of imaging generally.

I have a lot of other stuff in Apple Health (HR, activity, nutrients, etc. tracking).

I put everything in a folder in iCloud.

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.

is this for your own record keeping or to hand to a doctor in event of emergency?

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)

My doctor has a a4 sheet of paper in a folder

I carry around my medical records like James Dalton (of the film, Roadhouse).

The Norwegian state does it for me: helsenorge.no

Same here, though in the Danish version. But mine has some mentions of embarrasing nights out in the past that I'd like removed, and doesn't include stuff generated in other countries.

Same here in Sweden and it's visible for everyone relevant, for some reason there are random things that don't appear in the journal but all the important stuff is there.

I have no records from when I was a kid, but as an adult I have a journal I can access on a central service called "1177". It lists my diagnoses, appointment notes, prescriptions, vaccination history, etc.

my hospital (northwestern in chicago) syncs to my apple health.

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