Ask HN: How do you maintain your medical record? | Hacker News Reader

Ask HN: How do you maintain your medical record?

65 pointsSoulMan74 comments

I am in a location where not every hospital/clinic is digital and not neccesaily one can have access to others. In this case I have to always maintain and carry the thick file of prescriptions and reports with me for every visit . Is theer a open source tool or web based tool where records can be maintained chronolgically for me and family members.

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

How so?

Every medical interaction is recorded on a nationwide network - at least here in Italy. Every time I go to my doctor and they prescribe me something / they give me a shot / vaccine, it gets recorded and every other doctor can access the same data when I present my "health smart card"

That sounds both amazing (from a patient in need POV) and scary (from a privacy POV). I’m interested in both

It sounds like a great system assuming the smart card is a like a credit card with the chip in it, and you needed that to view medial records. Unfortunately I seriously doubt that's the case.

It's actually a smart card with a chip in it. It also has a magnetic stripe, I guess for legacy purposes. Here is a sample: https://www.sanita.puglia.it/documents/20182/134679/TSCNS+fr...

well, to be honest, this sounds like kind of overselling reality.

There is a system in place that tracks and records some things, like days off prescribed by base doctors, prescriptions for which national care pays and few other stuff, but most of everything else, including charts from when you are admitted in most hospitals and of course whatever you do outside of the public care (which kind of sucks and has insane waiting times, which means you most often do) is not included in that.

So.. nope.

> public care (which kind of sucks and has insane waiting times, which means you most often do)

You should see what it's like in the US.

Italy's certainly not perfect, but faults and all, I'd happily go back to that system from the one we have here in the US.

It does make a difference where you are in both countries, though; in Italy I lived in Padova, where things mostly work pretty well.

Pretty sure you talk about the NHS.

In Germany, for example, medical records are scattered across medical practitioners, hospitals and health insurance providers. There's no central, distributed or federated EMR system. Each practice or hospital basically runs its own system, sometimes dating from the 1980s. MS-DOS is still widely used in surgeries.

Data transfer (i.e. lab results, consultation results) happens mostly on paper, that is the patient usually gets handed a letter with the results to present to their GP.

Lots of information is lost this way. Examinations and analyses often are duplicated or done repeatedly.

Ah come on, it's not that bad anymore. My mother recently had some x-rays done because of a broken knee and all the files were sent digitally to the doctor and he forwarded them to a specialist. So, it's not that bad...

The last time I got a PET scan (about 3 years ago) they handed me a CD with the images and an accompanying piece of paper with a summary of the results. At least that CD included a DICOM viewer for macOS as well so I could have a look at the images myself.

It's the same with other medical imaging procedures. They have machines literally costing millions but they can't afford to have a secure system for keeping and exchanging medical data.

Up until a few years ago (according to my knowledge, perhaps this is still happening) paramedics routinely used WhatsApp for sending information to A&E while en route because there simply is no proper system in place to do so.

Hm, not sure, maybe this differs from doctor to doctor. To be honest, I was also suprised when she told me that as she lives in a rather rural area and not some big town. But at least that hospital/doctors seem to be really up to date with their tech.

How great for the patient. Everywhere you have built in second opinions. With digital, one lazy or bad doctor can more or less permanently alter the course of subsequent medical care with inaccurate information or a bad diagnoses.

how different is it for paper based records then? What advantage does paper even have.

It is easier for you as a patient to control your paper record. You can just throw out an opinion that doesn't seem right. If your record is being managed for you, it is much harder to get things corrected.

This is simply a question of ownership and control. If you own and control your medical data you can simply share it with medical practitioners when required.

With the current system on the other hand I have very limited control over my medical data, if at all.

Sure, when receiving results on paper I could throw away anything I "don't like".

However, I have no control over what records my GP, a hospital, or my health insurance provider keep about me. I can't see them. I can't have them amended or deleted.

You can see it and correct it.

Every time my local medical cartel upgrades their EMR, my personal history gets amended to include false information that could have impacts on my career, and lead a provider to make a bad decision.

> Lots of information is lost this way.

Which is also a privacy feature. Your dentist has your records, if a body is found and they think it might be you, they will ask your dentist for the records. If the mandatory storage period has passed, they are gone. To steal the records, an attacker would have to know, who your dentist is and then get them from there.

The same kind of system could be implemented with a distributed or federated EMR.

The data would still be stored with the practitioner where it originated but it could be shared with third parties (i.e. other practitioners) if the patient consents.

I really don't see how using the patient as messenger for medical data on paper could be seen as a privacy feature. Quite to the contrary, actually: Paper documents are easily misplaced or lost and then suddenly someone has access to your medical data.

In my area (Northwest Spain) medical info is recorded in the public health system, which is universally free. I can go to any public medical center and they can access to all my history, no need to carry anything with me apart from my card.

As an American, I cant afford to see real doctors or use perscription medicine, so it's not very important that they know very much about me.

Also as an American, my medical record mostly just consists of how many days since the last time I went to the doctor. For those without insurance, less is more when it comes to number of visits.

If you have insurance, the opposite is the case.

Yeah! It's like golf!

> Yeah! It's like golf!

Yes, and par would be like needing a doctor about once every three months. Keep it less frequent than that, and you're winning the game.

A friend of mine without insurance skateboards at a skate park. And I'm like "dude, that's pretty risky for not having insurance."

He explained the math to me, as long as he doesn't break a bone or need stitches more than once every few months, then not paying for insurance saves him money even if he has to pay $300-500 out of pocket at a walk-in clinic.

For young people in America, it seems that the only time that insurance isn't a net negative is when: 1) you have a chronic illness that requires regular treatments, 2) you have been diagnosed with cancer, and 3) pregnancy.

> For young people in America, it seems that the only time that insurance isn't a net negative

Insurance inherently is on average a net negative, but it constrains the risk that your needed costs unexpectedly are significantly above average, which can be catastrophic otherwise, especially in a system where care beyond immediate stabilization is gated by ability to pay. so that not having resources doesn't just mean a debt dischargeable in bankruptcy but potential denial of care.

Insurance is a net negative for anybody paying for regular, routine care. Insurance and the massive rats nest of middle men and perverse incentives it creates is why a physical, stitches and every other boring service provided thousands of times per day costs hundreds of dollars.

There is no way that a broken bone without insurance is 300-500. It is probably closer to 3000-5000.

Even if doctor visits were free, I have other things I'd rather do with my time.

That said, we definitely need healthcare consumers to be able to make price-based decisions if we want to optimize for costs.

Yes, and more than having better things to do, you can be ruined by a false-positive.

Though, I'm sure when you actually need a doctor, you won't be feeling that you still have better things to do.

It’s important that they don’t know your real name, that way you can sneak out before they send the bill.

The quality of any given countries healthcare system is mostly tangential to which parties of the system are responsible for getting patient data where it needs to be. It doesn't really matter in the grand scheme of things whether the patient, patient's physician or some central 3rd party is the record holder.

The question can make sense in any country really. Even if you are some place like Spain say which I gather has a sane electronic records system you still have issues if you get treated by someone outside the system, say in another country.

The UK's system, where I'm from is famously a mess. I think we hit a record with "£12bn NHS computer system is scrapped..." My aunts doctor has a GP system and the local hospital has another and when she collapsed and was treated in the hospital the doctor can't see the records as different systems. I guess unless they print it out and shlep it over somehow.

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

Same but I’d also never use anything cloud based to do this. The risk vs convenience doesn’t add up for this use case.

I do almost that but have a format for the filename: yyyy-mm-dd-{prescription,lab_result,...}-xxx.pdf so could be lab_result-CBC or prescription-rosuvastatin etc.

Yeah, I don't understand the need for software/apps/SaaS's that can be functionally replaced by files on the filesystem (in this case) or a text file (for note-taking tools). Simple files should always be the first attempt at organizing digital media. If it's insufficient for some reason, the OP should describe what they've tried and why it was insufficient.

The purpose of software/apps/SaaS is to not simply storedata. If that were true, a file repository works. The purpose of a personal health record platform is to help you make sense of your data and help you make better decisions relates to your health.

A lot of comments have focused on typical doctor visit. Consider, 450 million people globally have a mental illness. Digitized records have a huge potential to support self-management of chronic conditions.

The question in the original post was

>Is theer a open source tool or web based tool where records can be maintained chronolgically for me and family members.

A file repository satisfies these requirements. If it's insufficient for the original poster, then there are other unspecified requirements.

This....

The OP does not need a 'tool' -- beyond a filesystem and a naming convention such as suggested by @gumby. Make a folder hierarchy that makes sense (and do not worry about getting the hierarchy 100% right up front, it can be adjusted as usage indicates what should have been). Scan paper docs to an image format, create plain text for any 'notes style' docs you want to keep.

This is a perfect example where the KISS [1] principle is very useful. With a naming convention as suggested by @gumby, finding particular items later is either navigate to the folder they are in, open appropriate file, or a simple search of the filesystem for keywords (i.e. a "find | grep" pipeline on Linux/MacOS or the equivalent on Windows).

Portability for office visits can then be as simple as carrying a USB stick with a copy of the filesystem, or carrying another device (laptop/cellphone) with a copy of the filesystem stored thereon.

[1] https://en.wikipedia.org/wiki/KISS_principle

Dropbox’s “scan document” feature names the file with a timestamp by default and also crops, transforms, and color corrects (black and white or “whiteboard”) the image as well. It’s really Dropbox’s killer feature for me.

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.

I traveled full-time for 3 years with my wife and dog in an RV. We luckily didn’t have any medical stuff come up, though getting some prescriptions filled in different states was a HEADACHE.

For our dog, we use PawPrint, which is a mobile app. They request medical records on our behalf and digitize them. Their monetization model is to sell pet insurance, which we have with another carrier. Nice, convenient.

I see only a small part of my test results on the Swedish 1177, I think that it depends on the Län (district) and specific clinic, for example "private" ones

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.

Do you know how the system works, when you download laboratory values and different facilities have different reference ranges?

No idea, sorry. I don't know how big of a problem this is in practice in Denmark. I know that audits are performed on a national level. So I assume this would be less of an issue compared to countries where the health care system is very decentralized.

If you ever want to share and blur out information, I would love to see screen shots of the portals where all of this comes together. Everything is more expensive in Denmark. Does that VAT that you pay, get applied directly to the healthcare system?

We more or less only pay for prescription medicine (out of hospital) and dentist. And both of those two are highly subsidized by the government. VAT does not go directly into anything particular but is just a general income for the government.

Some background about e-health in Denmark:

https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-i...

https://vimeo.com/109787633 (1 minute overview)

https://healthcare-in-europe.com/en/news/e-health-in-denmark...

https://www.slideshare.net/HealthcareDENMARK/e-health-in-den...

https://www.eiseverywhere.com/file_uploads/27205cdba716d941e...

Portal Functionality:

https://www.aps-ev.de/wp-content/uploads/2018/05/WS-14_Peter... (2018)

http://data.nczisk.sk/konferencia_2010/bruun-schmidt.pdf (2010)

https://www.longwoods.com/content/19658//the-national-danish... (2005)

https://www.charlietango.dk/work/sundhed-dk/ (The app)

Other articles

https://www.researchgate.net/publication/317140742_Building_...

https://www.researchgate.net/publication/258115827_eHealth_i...

Thanks!

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.

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

Don't know about you. But this website only works for very specific hospitals / doctors Didn't sound like a very good idea to me.

As I understand it they can request paper/fax/cd records from any doctors given your authorization. Just takes longer than an API call to a portal.

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.

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?

The industry more broadly is moving towards OAuth.

https://bluebutton.cms.gov/

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.

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

I am in India, I do some kind of Google Drive/drop-Box but its hard to organise

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/

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.

One could customize an open source CRM for this?

That's an interesting solution (CRM). I am assuming it is not a difficult solution, could probably be done with a weekends worth of effort.

If you dont mind me asking where are you located?

India

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).

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