Ask HN: How do you maintain your medical record?

As read from Europe, it's really scary to realize that this question makes sense in a first world country.

If I were you, I would scan documents, name them chronologically and that's it. Safe and simple

I've never thought about it for myself to be honest. Where I live I can log into a central website called 1177 (which is also the phone number you can call to talk to a nurse over the phone for advice if needed) and see all of my visits, doctor's notes, and test results from different clinics. Maybe if I had a more extensive medical history and had to visit more obscure clinics etc I'd request printouts of my test results and such.

I have thought about this for my cat, however. The vet clinics here also regularly transfer journals to each other as needed, but I don't have access online the way I do for my own journals. Unlike myself (knock wood) my cat has had extensive medical issues as a kitten and has a very long set of journals from different locations. Every once in a while I ask the current hospital we frequent to send me a copy of his journals. Sometimes they give me physical copies and other times they send them via email, and I be sure to have these on-hand just in case I need to provide them in a rush to an emergency clinic.

In Denmark, we have a central registry for health information where all information is shared between medical practitioners and hospitals on a need to know basis.

We also have sundhed.dk (would translate to health.com) which all citizens can log into.

Here you can:

  - See upcoming appointments with hospitals or doctors
  - Sign up for organ donation or do not resuscitate orders
  - Information about hospital visits 50 years back (records have been digitized)
  - All your dentist visits, what kind of treatment you got, how much did you pay.
  - X-rays are digitalized and you can download them if you want to.
  - Lab results with explanations and tracking over time.
  - All the medicine you have bought and prescriptions you might have.
  - Your treatment plans which can be coordinated between medical practitioners and hospitals

You also have access to all information about any children under 15. And you can give access to information of your choosing to next of kin.

Never used them but this company claims to pull them together, parse them, etc.: https://picnichealth.com/

Several years ago, there was a big push to use Blue Button as a means of downloading your medical records. (It seems that HealthIT.gov still talks about it. https://www.healthit.gov/topic/health-it-initiatives/blue-bu...) The notion was that you could securely retrieve your info from all the sources and keep it locally (on a flash drive)

There was also Javascript implementation of the protocol, but that seems to have been archived https://github.com/blue-button/bluebutton.js

Can anyone tell if there's activity there now?

Which country are you from? UK here - even the thought of having to do this sounds weird.

Interesting question... this is one I have thought on and off, and I have a hodge-podge of paper reports and scans, with evernote- to maintain the digital notes, and google drive for the scans.

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One could customize an open source CRM for this?

If you dont mind me asking where are you located?

I think youre on the right track with this folder thing. My only suggestion is to make a photocopy to carry around and keep the original in a safe place.

https://en.m.wikipedia.org/wiki/Google_Health → https://en.m.wikipedia.org/wiki/Microsoft_HealthVault → Lydia

I bookmarked this once when stumbling across it: https://librehealth.io/. It's an open source Electronic Health Record keeping system, so sounds like it might suit your needs.

I’m not really sure how far blue button has integrated past the VA. While you may be able to retrieve your records and bring them with you on a flash drive, they might still be in a proprietary format such as a Lucy file. If you have complex medical issues - most of the clinicians at the leading academic medical centers want paper. The best way to do this, is to simply get a copy of the clinic note, if it is not included in the discharge summary. Scanning files into google drive is a way to archive them. You can quickly print notes and carry them in a binder with tabs when needed.

I recommend researching https://www.recordsforliving.com/HealthFrame/

Just going by the type of content (appointment dates, scanned documents, maybe contact data for doctors and hospitals) I would probably look into general calendar and note-taking apps.

Maybe there is some better, specialized software for this, but I would worry that it would be so niche or technical that no relative would know how to open the files when needed. Using some more common format would have an advantage here.

In the U.S. After a health scare, I personally called every clinic I've ever been to and asked to be faxed my records. I remember they charged a small fee (maybe 25 cents per page or something). It was tedious, but now I have my files on my hand whenever I need them.

Backpack health makes one. Can use it for free. Has multiple languages. Medical dictionaries etc. (Disclosure I used to work there) httpss://www.backpackhealth.com/

Ciitizen helps cancer patients get medical records even if they are in paper form and digitizes them. https://www.ciitizen.com/

I use an encrypted disk image with properly categorized and dated documents (digital or scanned) for each type of records.

Just stick it in a big Google Doc or Word doc. Have a few folder or different docs if need be.

My daughter's main health c are provider has something called "My Health" which is okay - I presume the doctor's have a better system. Something that maintains it on a timeline would be wonderful (that's how I remember it anyway). I guess a better question is - is that something that anyone would pay for? Or maintain?

I currently just scan everything into onenote, which works, but is suboptimal.

I currently use a synced word document because I don't trust the longevity of any of the current software offerings. If it stands the test of time, Apple Health has done a really nice job of pulling in all of my medical records (including vaccinations, etc).