
Ask HN: How do you maintain your medical record? - SoulMan
I am in a location where not every hospital&#x2F;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.
======
fab13n
As read from Europe, it's really scary to realize that this question makes
sense in a first world country.

~~~
jotm
How so?

~~~
BjoernKW
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.

~~~
allendoerfer
> 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.

~~~
BjoernKW
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.

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

~~~
vortico
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.

~~~
AidanCS
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.

~~~
vortico
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.

------
drakonka
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.

~~~
cstanton
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.

------
kasperni
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.

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

~~~
kasperni
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.

~~~
hkiely
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?

~~~
kasperni
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://www.sundhed.dk/borger/service/om-
sundheddk/ehealth-in-denmark/background/)

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

[https://healthcare-in-europe.com/en/news/e-health-in-
denmark...](https://healthcare-in-europe.com/en/news/e-health-in-denmark.html)

[https://www.slideshare.net/HealthcareDENMARK/e-health-in-
den...](https://www.slideshare.net/HealthcareDENMARK/e-health-in-denmark)

[https://www.eiseverywhere.com/file_uploads/27205cdba716d941e...](https://www.eiseverywhere.com/file_uploads/27205cdba716d941ef0baded9b8481de_TheDanishcase_HIMSS_Nordic17_PDF.pdf)

Portal Functionality:

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

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

[https://www.longwoods.com/content/19658//the-national-
danish...](https://www.longwoods.com/content/19658//the-national-danish-e-
health-portal) (2005)

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

Other articles

[https://www.researchgate.net/publication/317140742_Building_...](https://www.researchgate.net/publication/317140742_Building_National_Healthcare_Infrastructure_The_Case_of_the_Danish_e-
Health_Portal)

[https://www.researchgate.net/publication/258115827_eHealth_i...](https://www.researchgate.net/publication/258115827_eHealth_in_Denmark_A_Case_Study)

~~~
hkiely
Thanks!

------
jacobwilliamroy
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.

------
marcinzm
Never used them but this company claims to pull them together, parse them,
etc.: [https://picnichealth.com/](https://picnichealth.com/)

~~~
krishna0512
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.

~~~
marcinzm
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.

------
allard
[https://en.m.wikipedia.org/wiki/Google_Health](https://en.m.wikipedia.org/wiki/Google_Health)
→
[https://en.m.wikipedia.org/wiki/Microsoft_HealthVault](https://en.m.wikipedia.org/wiki/Microsoft_HealthVault)
→ Lydia

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

------
richb-hanover
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...](https://www.healthit.gov/topic/health-it-initiatives/blue-button)) 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](https://github.com/blue-button/bluebutton.js)

Can anyone tell if there's activity there now?

~~~
nwhatt
The industry more broadly is moving towards OAuth.

[https://bluebutton.cms.gov/](https://bluebutton.cms.gov/)

------
hkiely
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.

------
egp
I recommend researching
[https://www.recordsforliving.com/HealthFrame/](https://www.recordsforliving.com/HealthFrame/)

------
kapep
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.

------
throwaway2019V
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.

------
4ndrewl
Which country are you from? UK here - even the thought of having to do this
sounds weird.

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

------
gpinkham
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/

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

------
foolinaround
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?

~~~
krishna0512
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.

------
jklein11
If you dont mind me asking where are you located?

~~~
SoulMan
India

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

------
Spooky23
Just stick it in a big Google Doc or Word doc. Have a few folder or different
docs if need be.

------
Stronico
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.

------
carbocation
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).

