Open AnalogJ opened 1 year ago
Canada:
I have heard rumours of a health region in Ontario who let people pull all of their data into apple's healthkit - but still working on tracking that down.
Alberta and Saskatchewan have provincial portals that patient can access to view some of their data. Some health regions in other provinces have similar portals. Some might have ability to download or export data, but not as JSON or FHIR objects... just as pdf or csv. Most are view only - data would have to be scrapped and converted into something meaningful.
In general, the databases that store labs, documents, pharmacy data, surgical waitlists, etc are not open and are not really endpoints.
British Columbia:
From /u/shorto on Reddit:
In most of Europe with the exception of Estonia which is fully digitized, the system is basically a PDF storage. In Slovenia, only you can export (same is in AT, HR, HU, IT), a single PDF for every doctor's note you get. There is no mass export feature or anything like that, The login has to be made with a state issues certificate. So if you plan to expand to EU, the best way to do it, is to allow people to manually import the PDF's DICOM images etc that they get, organise them etc. Some of the practices will simply send it to your email, others use the state-issued system I mentioned above. I asked if an API will be available and it won't due to security reasons and concerns expressed by the EU.
Europe:
Maybe in the past some systems did but most systems do not keep data in PDFs, its in database and more commonly bought HIS have FHIR gateways. However , not every hospital IT staff knows or can even give access to that feature and nobody else can.. In short doctors time is cheaper then developers.
So in the end yes you will get PDF exports at best. In 1000 different languages. That are often scanned... Do not ask me why...
Not all is lost though: EU is planning to have a similar thing to US data exchanges https://digital-strategy.ec.europa.eu/en/policies/data-governance-act Current status: pending legislation. Estimated time for enforcement 2030
However, my tip would be to have an option for people to enter data manually as fallback. Does not have to have good UX it would be a stopgap/fallback feature.
From ChatGPT - so this could be incorrect:
From @PovilasID:
Lithuania. We are in fairly good position in contrast: We have nationally fully electronic: prescriptions; referrals; ability to register; However the main systems were established in 2014 and... well its massive mess now. Patient's access is sort afterthought... for example: you could view DICOM images, however, it was in flash... and flash is dead... so... you can not view DICOM images. Also some national systems should get data from hospital systems but they do not... because there are no penalties, so to have your data in national system is more of an exception rather than a rule. However, you will have 100% of prescriptions and referrals, because without listing in national system you are not getting your medication or access to a clinician... soo mixed bag.
So far I have not been able to track down an API endpoint voor Spaarne Gasthuis' implementation of MyChart. What I was able to find is that you are able to download ALL of your data, but it is exported as xml. I will continue to look for an API endpoint tho.
PS: Spaarne Gasthuis is a Dutch hospital group
@second2falcon Do you know if the XML file is formatted as HL7 CCDA? While CCDA is not currently supported by Fasten, I'd be willing to prioritize it if it'll allow us to support international patient records faster.
just posting for awareness, spain is quasi-fragmented in their data, for example catalunia has catsalut
TL;DR:
The majority of digitally accessible records in the NHS are stored by individual GP practices. Unfortunately, there seem to be only a few providers who sell closed-source software to each NHS GP practice. So there are only about two sources of data needed to support the whole of the UK: EMIS and TPP (AirMid/SystmOne). According to ChatGPT, there are a handful of other providers, but I've only ever encountered the above two and am fairly certain that they serve the majority of GP practices within the UK.
Both EMIS and TPP provide apps and web access for patients, but I'm not sure if there is any published/publicly available API access.
I hope the above info helps. I realize that international support will no doubt be fairly low on your list of priorities, but I would love to be able to take ownership of my medical data, so I am happy to provide any further information that I can.
A few of the NHS' FHIR APIs are now in production, specifically the Immunization History API and the Personal Demographics Service API. The Summary Care Record API is in production as a private beta.
Yenlo seems to provide FHIR APIs for a few international providers. I can't find anything with some quick searches, but maybe someone else can find some documentation.
Sweden
https://inera.atlassian.net/wiki/spaces/OINKK/pages/2784887050/API+-+H+mtning+av+kunskapsst+d+till+egna+system+Teknisk+anslutning https://www.1177.se/Stockholm/om-1177/1177.se/intresseanmalan-for-en-api-nyckel/ https://api.kunskapsstod.se/v2/swagger/
They have a pretty extensive API.
Would be awesome to have both my US and Swedish data saved.
Hi there, something is moveing in Italy.
Now we have an unified portal, for public health, to check our records. Since the creation of the portal everything done with the public system will be there, it also seems to respect FHIR standards. Its official name it's "Fascicolo Sanitario Elettronico" or "FSE"
Unfortunally our gov sucks with this kind of stuff. Fortunatly it's on git hub https://github.com/ministero-salute/it-fse-support Official dev page : https://developers.italia.it/it/fse/
Below some other link i think can be usefull. If i can help some how let me know. I really like this project, thanks.
Every region has its own portal and found here : https://www.fascicolosanitario.gov.it/fascicoli-regionali
Official site : https://www.fascicolosanitario.gov.it/ "Guidelines, Manual, Technical documentation" https://www.fascicolosanitario.gov.it/linee-guida-manuali-documenti-tecnici
Some comunication with a techish pdf (Updated Nov 22) https://www.agenas.gov.it/comunicazione/primo-piano/2090-piattaforma-telemedicina-fse
Now we have an unified portal, for public health, to check our records. Since the creation of the portal everything done with the public system will be there, it also seems to respect FHIR standards. Its official name it's "Fascicolo Sanitario Elettronico" or "FSE"
I'm glad to see FHIR! Hopefully they'll make it be easy to integrate with Fasten.