There was a guy on reddit a few years ago who started a dental practice with entirely open-source software and his own EHR system. Really interesting stuff, don't think anyone's posted about it here. Can't view his reddit history but he must still be using it, last commit 1 week ago.
I have had a brief touch with healthcare related software industry. The barrier to entry for any service provider seems very high (for very good reasons, I'm sure) I was wondering how a project like GNU Health could ever be used in such an environment.
Surprisingly it had 100 comments but no open source questions iirc so that was a bit of surprise from what I could check.
Also Offtopic or not but its sad that you can't use reddit because you are in UK but just for the sake since I want you to see the comment, I perma-linked it and uploaded it to wayback-machine/archive.org and here's the link so that you can view what I wrote
I am going to archive the whole reddit page later for you to read as well
Hope this helps OP and maybe I will keep the archive updated for few days or give ya updates if that's something you are interested in I suppose I am not sure, just like many other things in my life.
It means you can't view people's reddit profiles in the UK.
( Yes, seriously. )
Many many profiles are tagged NSFW, its' not clear why, I can't imagine the majority of those have done so deliberately, perhaps it's automatic for anyone who's posted any NSFW posts ever. ( Which includes people doing so to be funny such as someone posting a huge loss in a sports sub as NSFW. )
Heath centers pay unreal amounts of money for these kinds of commercial products, but in my experience the health centers themselves have very few technical resources. So the real "value" being delivered by the commercial software providers is often the setup, support, and hand-holding provided to customers who pay the crazy amounts.
I imagine there will be a niche but high-paid market integrating these GNUHealth products with existing commercial systems, and ongoing opportunities in supporting health centers using the software with planning, upgrades, and lots of phone & email support.
I wonder what would happen if EU harmonized the legislation so that the EU states could go together and develop an OSS journaling system. The amount of money saved would be astronomical.
Spending money is what drives the economy. No diverse expensive healthcare software means thousands of employees don't get paid and don't spend earned money within the economy.
Seems like a wonderful win/win opportunity to have the software be FOSS but enable small businesses to provide hosting/support/customization.
The biggest win of all is if we had an open/extensible/maintainable data exchange format so that we could eliminate the need for paperwork. How many times must we fill out the same information, and then require the providers to keyboard it in?
There are in fact multiple data exchange formats published by standards development organizations including HL7 (V2 Messaging, CDA, FHIR), DirectTrust, NCPDP, DICOM, and X12. Some such as HL7 and DirectTrust are very open, others may require a paid licensing agreement. Usage of some of those standards is mandated by CMS interoperability regulations and/or ASTP (ONC) Health IT Certification requirements.
Beyond the wire formats, in order to eliminate the need for paperwork provider organizations also have to participate in data exchange networks. These include TEFCA, Carequality, eHealth Exchange, and some smaller regional HIEs. It all works fairly well when used correctly but many provider organizations continue to waste administrative effort and abuse their patients by failing to take advantage of the available technology. Like in many cases the necessary functionality is already built in to their EHR/PMS software but they simply don't turn it on or train their users.
I'd love it if my government created a civil reserve for technology workers. Let me volunteer every weekend to help fix infrastructure so I don't have to give up my existing job.
In the US, the Veteran's Administration wrote their own EHR (Vista) which was released as public domain. They've been trying (and mostly failing) to migrate to a commercial EHR for the last seven or eight years.
I can't. There are engineers advocating for open source in the NHS but management is mostly non technical and will go for a big corporate product every time.
> the real "value" being delivered by the commercial software providers is often the setup, support, and hand-holding provided to customers who pay the crazy amounts
That is also possible and even usual with open source. The difference is you can choose the provider for each of those things, they can be different, you are not locked in.
No… hospitals use EHR to maximize billing. That is the value.
Private practices are generally shrinking in number, so there IS NO EHR that is growing in the long term to serve them, so there CANNOT BE a trend where hospitals are exceptional, their IT buying trends are the NORM and their purpose is to code for billing. It is NOT about having or not having IT resources strictly speaking.
Typing in ALL CAPS does not make your argument stronger, this isn't Truth Social.
> hospitals use EHR to maximize billing
As a person who has worked extensively with hospitals and CHCs helping them integrate technology, this is false.
EHR is being used because it's required - both by payors and regulation/law. I can think of zero instances where an organization switched to EHR without being forced by a deadline from an outside source.
The problem open-source, and social media, and everything digital, has never overcome is accountability. Who do I sue, and who has insurance, if something goes wrong?
Combine that with most small businesses having more money than time (just pay Gmail, don’t spend the required amount of time to self host), and open-source is stuck at being hobbyists if there is no corporate sponsorship.
> Who do I sue, and who has insurance, if something goes wrong?
You sue the Red Hat-like support company with whom you ostensibly signed a contract.
If your question is who does the Red Hat-like support company sue if they want accountability for the code they are leveraging, I guess I don't understand the question or its relevance. E.g., with regard to proprietary code, who does Microsoft microsoft when Microsoft microsofts Microsoft? (Fun to write, but I don't think that sentence really makes sense.)
Do you think a small mom-and-pop dentist can win a lawsuit against Google?
There's absolutely no way that dentist will have a well-negotiated contract with SLA's and damage compensation with Google. The extent of their business relationship is that the dentist clicked a checkbox and put in their credit card details. Google does not even know they exist.
If Gmail loses all your email and accidentally kills your entire business, the absolute best outcome is a refund of your $10/month business subscription fee. The idea that they could in any way be held responsible is ludicrous.
> just pay Gmail, don’t spend the required amount of time to self host
Are you seriously suggesting a business put their contacts in the hands of Google, who has reportedly been totally capricious with account actions in the past and is notoriously difficult to contact when problems arise?
> and open-source is stuck at being hobbyists if there is no corporate sponsorship
Corpo sponsorship required for success? I guess I better tell all the open-source projects being used by millions that they're just hobbyists now.
> The problem [...] everything digital [...] Who do I sue, and who has insurance, if something goes wrong?
I have heard of analog world nostalgia, but you refer to the pre-digital age as if you didn't live through it. It's easier to locate someone today than ever before.
This isn't a problem with open source. For many of us with startups that have low stakes (worst we can do is have no users) a lack of support is fine, we can do it ourselves and save the money.
And there's plenty of consultancies which will support OSS and give you support if you need it and be your scapegoat. Red Hat, Suse, IBM come to mind and there's many others...
You're being downvoted but yes, this is about risk mitigation. The IT department at a health care organization has to balance matching the requirements of payers, admins and clinical staff, do so in a way that fits inside the allocated budget, and de-risk the unknowns as much as possible.
Even if the vendors are only half accurate about the solution they offer, by being paid suppliers, they are on the hook (to varying degrees). These systems are highly customized and serious headaches arise from interoperability and security. If some of that can be shifted to a vendor, it's a net positive insofar as the IT department and the compliance departments are concerned.
Some healthcare organization have invested in the technology side and become leaders in innovation but those are the exception.
The person implementing the system for the hospital is accountable. I don’t see why this is difficult because it would be the same if that person built their own product from scratch.
There’s no vendor here that they can sue if they were paying for a product and deploying that, but that’s a different situation and the hospital, frankly, won’t care about that. Who their supplier subsequently sues isn’t their problem.
You sue the developers. It’s how it works in general. So basically you’d comb the commit history for the project and name everyone in the lawsuit that you could.
> The easiest way to get MyGNUHealth is by installing the package from your favorite operating system / distribution. Many operating system distributions already ship MyGNUHealth.
I was actually curious to try this out on my phone, since they claim to support mobile devices.
If running a command-line package manager is the easiest way to install this on Android, I don't want to know what harder ways exist.
I find this is quite typical for open source projects. The community still hasn't really, truly adopted mobile. I guess it's because of the need to have some sort of entity be present in the various App Stores? But if it's possible for servers, why is this so rare to have open source projects as app store vendors?
> I guess it's because of the need to have some sort of entity be present in the various App Stores?
This, and the fees, and dealing with weird App stores' rules. On Android, we had F-Droid - an alternative store where one didn't need to deal with this. And as has been reported recently, Google is making changes that will essentially kill F-Droid.
The reason there's not much good open source stuff on phones compared to PCs is because the hardware is hostile to it. The few phones out there that aren't are the ones almost no one uses.
You seem to be living in the past. While EHRs are still primarily used from desktop PCs, all of the major ones have native mobile apps now. Clinicians appreciate being able to review patient charts and action alerts while away from a PC cart.
To preface: I would be happy to see open source adoption in healthcare.
This is presented as an open source software project but it should also make a pitch to managers and doctors - the decision-makers.
I put "GNU Health" into YouTube and the first few pages of results were very old and mostly amateur screencasts showing installation while one was an animated presentation with an awful robo voice. I should add none were official videos from the project team.
Then on the official site it says there's a laboratory information management component, but that is not apparent on the documentation page. This is not reassuring if I'm tasked with evaluating for potential adoption.
Next I tried looking up how the Jamaican Health Ministry is using it. The page seems to be over 10 years old: https://www.moh.gov.jm/technical-services-division/health-in... but again this is not under the control of the project team. The main team should help successful users write up their projects (the one page version) and then link to those write ups.
Nice to see support for Open source. I have seen selling of healthcare data, including medicare and medicaid data to private companies which sliced and diced it and sold to academic and drug research institutions via data marts. ETL jobs would run for months. The data included prescriptions, scans, visits, employee plans etc, for about ~200 millions of American patients. It is anonymized data, but still I always wondered why this was allowed.
HHS publishes clear guidelines for de-identifying healthcare data (PHI). Once it has been properly de-identified (anonymized) it is no longer subject to any special controls. I am aware that some researchers have claimed that it could be theoretically possible to re-identify certain records but so far no one has been able to do so in practice so concerns seem to be overblown.
As for Medicare, only a very limited set of data is publicly available. Larger sets are available to certain contractors and researchers but the access agreements prohibit sale to third parties. So you must have misinterpreted the content or source of the data you saw.
That federation piece is super interesting. I'm actually giving a talk in Sweden this week about machine learning/AI training in the age of data sovereignty, and my suggestion was two-fold - better and more widespread adoption of things like Homomorphic Encryption and more federated systems that can distribute access and data in sovereign systems. This is a pretty important evolution in that direction!
I work in a lab which researches regenerative medicine and people often talk about how we are saving lives.
But at the end of the day, it’s not what we are doing that is pushing the needle, its projects like this make existing healthcare accessible for everybody. I want to get a PhD in something related to this at some point. You guys are so insanely cool.
This is really cool to see. I've been on the lookout for software like this ever since reading "Why Doctor's Hate Their Computers" in the New Yorker: https://news.ycombinator.com/item?id=18381969
I wonder how feasible it would be to replace the current software in practice?
No offence but IshKebab is not a person I would associate with someone who knows anything about health, useable and practical software. No matter how noble their intentions are about criticizing software they’ve never used nor never attempt to use because of unfounded stigmas. Misguided indeed.
Automake, bash, emacs, gnucash, gnuhealth, coreutils, gnupg, gimp, grep, make, etc. are all great pieces of GNU software. Don’t take my word for it, here is a list of all the too-many-to-name gnu software used out in the world extensively:
> Automake, bash, emacs, gnucash, gnuhealth, coreutils, gnupg, gimp, grep, make, etc. are all great pieces of GNU software.
Come on now. Gnucash is actually decent and I guess I can't complain about grep or coreutils but are you seriously claiming automake is great? The biggest mess I've even seen.
Make fundamentally can't handle spaces in paths, nor is there a sane way to split a project into multiple Makefiles.
GIMP... where to begin. Probably the name. Fortunately we have Krita now which is far superior.
Bash, wow. This is basically a list of software we've been stuck with for decades and are finally moving to good alternatives.
I can't quite understand what is actually part of GNU Health:
> Social Medicine and Public Health
> Bioinformatics and Medical Genetics
Are these that a piece of software? scopes? Intents?
> Hospital Management (HMIS)
Ok, now this is software for sure, but what exactly does this mean? There are many things to manage within a hospital. Is this software for managing inventories? Scheduling? Personnel assignments and organizational relations? Patient flow records? And - is most of this stuff really specific to hospitals? e.g. how is this different from managing, say, a hotel?
> Laboratory Management (Occhiolino)
Again not so clear what kind of management we're talking about.
> Personal Health Record (MyGNUHealth)
Ok, this I (think I) understand.
> GNU Health embedded on Single Board devices
What exactly needs to get embedded? And - what kind of device? It could be a Raspberry Pi, that's a single-board device, right? So, just another general-purpose computer, but on ARM-based silicon. Or - it could be an, I don't know, some kind of scanner, like a portable UltraSound.
Bottom line: I'm sure it's a collection of useful software but very difficult to figure out exactly what, and how it's specific to healthcare.
Laboratory Management Systems, or LMS, is laboratory software which handles laboratory orders, retrieving results from the laboratory equipment and sending back the results to the electronic patient record (EPR). It does a lot more than that of course, but basically it's a big database handling thousands of blood tests, biopsies, tissue samples, as well as worklists for staff, in order to get diagnostics results back to the clinicians.
There was a guy on reddit a few years ago who started a dental practice with entirely open-source software and his own EHR system. Really interesting stuff, don't think anyone's posted about it here. Can't view his reddit history but he must still be using it, last commit 1 week ago.
https://www.reddit.com/r/linux/comments/p5phju/progress_repo...
https://www.reddit.com/r/linux/comments/x2mls1/update_starti...
That’s from the founder of Clear.dental, Dr. Tej Shah:
https://clear.dental/
https://gitlab.com/cleardental
https://www.linkedin.com/in/tej-shah-17829195
And the 2.0 source: https://invent.kde.org/desiotaku/cleardental
Amazing to see this project!
I have had a brief touch with healthcare related software industry. The barrier to entry for any service provider seems very high (for very good reasons, I'm sure) I was wondering how a project like GNU Health could ever be used in such an environment.
[flagged]
A doctor in my little town created his own open source EMR software in FileMaker:
https://cottagemed.org/p/24/Cottage-Med
His practice also accepts payment in the form of barter: https://cottagemed.org/p/15/About-Our-Practice
Hm they had an AMA recently going on, so I asked them some questions if they are still using it or what not (on reddit) mentioning this HN comment.
https://old.reddit.com/r/Dentistry/comments/1o3hawd/prison_d...
Surprisingly it had 100 comments but no open source questions iirc so that was a bit of surprise from what I could check.
Also Offtopic or not but its sad that you can't use reddit because you are in UK but just for the sake since I want you to see the comment, I perma-linked it and uploaded it to wayback-machine/archive.org and here's the link so that you can view what I wrote
I am going to archive the whole reddit page later for you to read as well
https://web.archive.org/web/20251011181833/https://old.reddi...
Wait why is this not working wtf, Dentistry: page not found for archive wtf?
Edit: I archived the whole page as I said, here it is.
https://web.archive.org/web/20251011182126/https://old.reddi...
Hope this helps OP and maybe I will keep the archive updated for few days or give ya updates if that's something you are interested in I suppose I am not sure, just like many other things in my life.
> Can't view his reddit history
His user page[1] doesn't work for you?
[1]: https://old.reddit.com/user/DesiOtaku
> Can't view his reddit history as I'm in the UK
What does this mean?
It's tagged as NSFW for some reason and I can't be bothered verifying my age
3 replies →
It means you can't view people's reddit profiles in the UK.
( Yes, seriously. )
Many many profiles are tagged NSFW, its' not clear why, I can't imagine the majority of those have done so deliberately, perhaps it's automatic for anyone who's posted any NSFW posts ever. ( Which includes people doing so to be funny such as someone posting a huge loss in a sports sub as NSFW. )
5 replies →
Heath centers pay unreal amounts of money for these kinds of commercial products, but in my experience the health centers themselves have very few technical resources. So the real "value" being delivered by the commercial software providers is often the setup, support, and hand-holding provided to customers who pay the crazy amounts.
I imagine there will be a niche but high-paid market integrating these GNUHealth products with existing commercial systems, and ongoing opportunities in supporting health centers using the software with planning, upgrades, and lots of phone & email support.
I wonder what would happen if EU harmonized the legislation so that the EU states could go together and develop an OSS journaling system. The amount of money saved would be astronomical.
Spending money is what drives the economy. No diverse expensive healthcare software means thousands of employees don't get paid and don't spend earned money within the economy.
13 replies →
A good primer from Acquired https://www.acquired.fm/episodes/epic-systems-mychart
Seems like a wonderful win/win opportunity to have the software be FOSS but enable small businesses to provide hosting/support/customization.
The biggest win of all is if we had an open/extensible/maintainable data exchange format so that we could eliminate the need for paperwork. How many times must we fill out the same information, and then require the providers to keyboard it in?
There are in fact multiple data exchange formats published by standards development organizations including HL7 (V2 Messaging, CDA, FHIR), DirectTrust, NCPDP, DICOM, and X12. Some such as HL7 and DirectTrust are very open, others may require a paid licensing agreement. Usage of some of those standards is mandated by CMS interoperability regulations and/or ASTP (ONC) Health IT Certification requirements.
Beyond the wire formats, in order to eliminate the need for paperwork provider organizations also have to participate in data exchange networks. These include TEFCA, Carequality, eHealth Exchange, and some smaller regional HIEs. It all works fairly well when used correctly but many provider organizations continue to waste administrative effort and abuse their patients by failing to take advantage of the available technology. Like in many cases the necessary functionality is already built in to their EHR/PMS software but they simply don't turn it on or train their users.
Wasn't that in fact apropriated, launched and funded in the US under the Obama administration?
2 replies →
https://xkcd.com/927
I could certainly imagine NHS England looking at this and creating something that hospitals and GPs could deploy
I'd love it if my government created a civil reserve for technology workers. Let me volunteer every weekend to help fix infrastructure so I don't have to give up my existing job.
3 replies →
Sadly, very sadly, I cannot imagine it. I have seen the inside of NHS IT.
2 replies →
In the US, the Veteran's Administration wrote their own EHR (Vista) which was released as public domain. They've been trying (and mostly failing) to migrate to a commercial EHR for the last seven or eight years.
7 replies →
I can't. There are engineers advocating for open source in the NHS but management is mostly non technical and will go for a big corporate product every time.
> the real "value" being delivered by the commercial software providers is often the setup, support, and hand-holding provided to customers who pay the crazy amounts
That is also possible and even usual with open source. The difference is you can choose the provider for each of those things, they can be different, you are not locked in.
No… hospitals use EHR to maximize billing. That is the value.
Private practices are generally shrinking in number, so there IS NO EHR that is growing in the long term to serve them, so there CANNOT BE a trend where hospitals are exceptional, their IT buying trends are the NORM and their purpose is to code for billing. It is NOT about having or not having IT resources strictly speaking.
Typing in ALL CAPS does not make your argument stronger, this isn't Truth Social.
> hospitals use EHR to maximize billing
As a person who has worked extensively with hospitals and CHCs helping them integrate technology, this is false.
EHR is being used because it's required - both by payors and regulation/law. I can think of zero instances where an organization switched to EHR without being forced by a deadline from an outside source.
11 replies →
From what I have seen, the only people seriously using systems like these are in emerging markets or developing countries.
The problem open-source, and social media, and everything digital, has never overcome is accountability. Who do I sue, and who has insurance, if something goes wrong?
Combine that with most small businesses having more money than time (just pay Gmail, don’t spend the required amount of time to self host), and open-source is stuck at being hobbyists if there is no corporate sponsorship.
> Who do I sue, and who has insurance, if something goes wrong?
You sue the Red Hat-like support company with whom you ostensibly signed a contract.
If your question is who does the Red Hat-like support company sue if they want accountability for the code they are leveraging, I guess I don't understand the question or its relevance. E.g., with regard to proprietary code, who does Microsoft microsoft when Microsoft microsofts Microsoft? (Fun to write, but I don't think that sentence really makes sense.)
Do you think a small mom-and-pop dentist can win a lawsuit against Google?
There's absolutely no way that dentist will have a well-negotiated contract with SLA's and damage compensation with Google. The extent of their business relationship is that the dentist clicked a checkbox and put in their credit card details. Google does not even know they exist.
If Gmail loses all your email and accidentally kills your entire business, the absolute best outcome is a refund of your $10/month business subscription fee. The idea that they could in any way be held responsible is ludicrous.
> The problem open-source [...] has never overcome is accountability.
There are lots of organizations that provide a throat-to-choke-as-a-service, e.g. Red Hat.
> just pay Gmail, don’t spend the required amount of time to self host
Are you seriously suggesting a business put their contacts in the hands of Google, who has reportedly been totally capricious with account actions in the past and is notoriously difficult to contact when problems arise?
> and open-source is stuck at being hobbyists if there is no corporate sponsorship
Corpo sponsorship required for success? I guess I better tell all the open-source projects being used by millions that they're just hobbyists now.
> The problem [...] everything digital [...] Who do I sue, and who has insurance, if something goes wrong?
I have heard of analog world nostalgia, but you refer to the pre-digital age as if you didn't live through it. It's easier to locate someone today than ever before.
7 replies →
I'd say if you take software that doesn't cost you anything, either
(1) you carry the risk or
(2) find someone that operates the software for you (on premise or SaaS) and they may also carry the risk for the premium you pay them.
This isn't a problem with open source. For many of us with startups that have low stakes (worst we can do is have no users) a lack of support is fine, we can do it ourselves and save the money.
And there's plenty of consultancies which will support OSS and give you support if you need it and be your scapegoat. Red Hat, Suse, IBM come to mind and there's many others...
You're being downvoted but yes, this is about risk mitigation. The IT department at a health care organization has to balance matching the requirements of payers, admins and clinical staff, do so in a way that fits inside the allocated budget, and de-risk the unknowns as much as possible.
Even if the vendors are only half accurate about the solution they offer, by being paid suppliers, they are on the hook (to varying degrees). These systems are highly customized and serious headaches arise from interoperability and security. If some of that can be shifted to a vendor, it's a net positive insofar as the IT department and the compliance departments are concerned.
Some healthcare organization have invested in the technology side and become leaders in innovation but those are the exception.
The person implementing the system for the hospital is accountable. I don’t see why this is difficult because it would be the same if that person built their own product from scratch.
There’s no vendor here that they can sue if they were paying for a product and deploying that, but that’s a different situation and the hospital, frankly, won’t care about that. Who their supplier subsequently sues isn’t their problem.
2 replies →
You sue the developers. It’s how it works in general. So basically you’d comb the commit history for the project and name everyone in the lawsuit that you could.
1 reply →
Here is the link I was looking for. Took me about three clicks to get there so wanted to save you guys the trouble
https://codeberg.org/gnuhealth
I was also looking for a list of users.
Found in a carousel in the middle of the main site https://www.gnuhealth.org/
> The easiest way to get MyGNUHealth is by installing the package from your favorite operating system / distribution. Many operating system distributions already ship MyGNUHealth.
I was actually curious to try this out on my phone, since they claim to support mobile devices.
If running a command-line package manager is the easiest way to install this on Android, I don't want to know what harder ways exist.
I find this is quite typical for open source projects. The community still hasn't really, truly adopted mobile. I guess it's because of the need to have some sort of entity be present in the various App Stores? But if it's possible for servers, why is this so rare to have open source projects as app store vendors?
> I guess it's because of the need to have some sort of entity be present in the various App Stores?
This, and the fees, and dealing with weird App stores' rules. On Android, we had F-Droid - an alternative store where one didn't need to deal with this. And as has been reported recently, Google is making changes that will essentially kill F-Droid.
The reason there's not much good open source stuff on phones compared to PCs is because the hardware is hostile to it. The few phones out there that aren't are the ones almost no one uses.
This is meant to be used in hospitals. Where I live no hospital personal uses phones to manage healthcare data. They have PCs.
MyGNU Health looks to be along the lines of Apple Health and is intended to be used by consumers to monitor vitals and track statistics.
2 replies →
You seem to be living in the past. While EHRs are still primarily used from desktop PCs, all of the major ones have native mobile apps now. Clinicians appreciate being able to review patient charts and action alerts while away from a PC cart.
4 replies →
why would you run a set of software meant for medical providers (hospitals, clinics, etc) on your phone?
Did you read the article?
> MyGNUHealth is the GNUHealth Personal Health Record application for desktop and mobile devices
[dead]
To preface: I would be happy to see open source adoption in healthcare.
This is presented as an open source software project but it should also make a pitch to managers and doctors - the decision-makers. I put "GNU Health" into YouTube and the first few pages of results were very old and mostly amateur screencasts showing installation while one was an animated presentation with an awful robo voice. I should add none were official videos from the project team.
Then on the official site it says there's a laboratory information management component, but that is not apparent on the documentation page. This is not reassuring if I'm tasked with evaluating for potential adoption.
Next I tried looking up how the Jamaican Health Ministry is using it. The page seems to be over 10 years old: https://www.moh.gov.jm/technical-services-division/health-in... but again this is not under the control of the project team. The main team should help successful users write up their projects (the one page version) and then link to those write ups.
Nice to see support for Open source. I have seen selling of healthcare data, including medicare and medicaid data to private companies which sliced and diced it and sold to academic and drug research institutions via data marts. ETL jobs would run for months. The data included prescriptions, scans, visits, employee plans etc, for about ~200 millions of American patients. It is anonymized data, but still I always wondered why this was allowed.
HHS publishes clear guidelines for de-identifying healthcare data (PHI). Once it has been properly de-identified (anonymized) it is no longer subject to any special controls. I am aware that some researchers have claimed that it could be theoretically possible to re-identify certain records but so far no one has been able to do so in practice so concerns seem to be overblown.
https://www.hhs.gov/hipaa/for-professionals/special-topics/d...
As for Medicare, only a very limited set of data is publicly available. Larger sets are available to certain contractors and researchers but the access agreements prohibit sale to third parties. So you must have misinterpreted the content or source of the data you saw.
https://www.cms.gov/data-research/cms-data/types-data-files
https://ghdx.healthdata.org/record/united-states-marketscan-...
It shows some medicare data as owned by a private company.
1 reply →
That federation piece is super interesting. I'm actually giving a talk in Sweden this week about machine learning/AI training in the age of data sovereignty, and my suggestion was two-fold - better and more widespread adoption of things like Homomorphic Encryption and more federated systems that can distribute access and data in sovereign systems. This is a pretty important evolution in that direction!
I'm extremely interested in this topic. Would you be able to share your presentation?
I work in a lab which researches regenerative medicine and people often talk about how we are saving lives.
But at the end of the day, it’s not what we are doing that is pushing the needle, its projects like this make existing healthcare accessible for everybody. I want to get a PhD in something related to this at some point. You guys are so insanely cool.
So I couldn't find this on their site and too little time to trawl through their events page. Is this being used in production anywhere?
I looked for the same: The main site https://www.gnuhealth.org has a carousel listing various users of the system.
This is really cool to see. I've been on the lookout for software like this ever since reading "Why Doctor's Hate Their Computers" in the New Yorker: https://news.ycombinator.com/item?id=18381969
I wonder how feasible it would be to replace the current software in practice?
Text is too dark for my old eyes.
crazy to think that with this you could run the better part of a hospital with...
..but then again there is open source ERP, too!
No offence but GNU is not an organisation I would associate with health, usability and practical software. Noble effort no doubt. Misguided perhaps.
No offence but IshKebab is not a person I would associate with someone who knows anything about health, useable and practical software. No matter how noble their intentions are about criticizing software they’ve never used nor never attempt to use because of unfounded stigmas. Misguided indeed.
Automake, bash, emacs, gnucash, gnuhealth, coreutils, gnupg, gimp, grep, make, etc. are all great pieces of GNU software. Don’t take my word for it, here is a list of all the too-many-to-name gnu software used out in the world extensively:
https://www.gnu.org/manual/blurbs.html
> Automake, bash, emacs, gnucash, gnuhealth, coreutils, gnupg, gimp, grep, make, etc. are all great pieces of GNU software.
Come on now. Gnucash is actually decent and I guess I can't complain about grep or coreutils but are you seriously claiming automake is great? The biggest mess I've even seen.
Make fundamentally can't handle spaces in paths, nor is there a sane way to split a project into multiple Makefiles.
GIMP... where to begin. Probably the name. Fortunately we have Krita now which is far superior.
Bash, wow. This is basically a list of software we've been stuck with for decades and are finally moving to good alternatives.
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I can't quite understand what is actually part of GNU Health:
> Social Medicine and Public Health
> Bioinformatics and Medical Genetics
Are these that a piece of software? scopes? Intents?
> Hospital Management (HMIS)
Ok, now this is software for sure, but what exactly does this mean? There are many things to manage within a hospital. Is this software for managing inventories? Scheduling? Personnel assignments and organizational relations? Patient flow records? And - is most of this stuff really specific to hospitals? e.g. how is this different from managing, say, a hotel?
> Laboratory Management (Occhiolino)
Again not so clear what kind of management we're talking about.
> Personal Health Record (MyGNUHealth)
Ok, this I (think I) understand.
> GNU Health embedded on Single Board devices
What exactly needs to get embedded? And - what kind of device? It could be a Raspberry Pi, that's a single-board device, right? So, just another general-purpose computer, but on ARM-based silicon. Or - it could be an, I don't know, some kind of scanner, like a portable UltraSound.
Bottom line: I'm sure it's a collection of useful software but very difficult to figure out exactly what, and how it's specific to healthcare.
I work in healthcare IT and all of these have very specific meanings, and it’s very clear to the intended audience what these all are.
The terms are also clarified later on that same home page ...
All of these terms are well understood if you work in a hospital. Even a technician could probably guess at the ones they don't work with directly.
> Laboratory Management (Occhiolino)
Laboratory Management Systems, or LMS, is laboratory software which handles laboratory orders, retrieving results from the laboratory equipment and sending back the results to the electronic patient record (EPR). It does a lot more than that of course, but basically it's a big database handling thousands of blood tests, biopsies, tissue samples, as well as worklists for staff, in order to get diagnostics results back to the clinicians.