One big limitation of this standard is imaging data. X-Ray radiographs, MRI scans, PET scans, etc are not part of the USCDI standard V1 that'll be available to US patients. The current story for getting these scans still sucks and isn't close to being actually available to patients in the US. The best you can get is a set of DVD's containing that stuff, if you are lucky.
The problem is that the protocol used by imaging devices (DICOM) is ancient, and connecting with a DICOM server is a pain. There is a sort of modern standard that I've heard talked about called DICOMweb, that I think will be hooked up with FHIR and be made apart of the USCDI eventually (probably). But we still aren't very close to being able to see X-rays on our phones.
Also, one funny anecdote I've heard from working in this space is that some doctors do not like the Clinical Notes story (https://build.fhir.org/ig/HL7/US-Core/clinical-notes.html) since it means that their personal notes about their patients will be made available directly to the patient, something that was not possible in the past. Doctors often write down their real thoughts about the patient in there and can say some things the patient might not be happy with.
> But we still aren't very close to being able to see X-rays on our phones.
Actually, last time I had such an injury, I copied the files from the DVD to my phone and just showed all the doctors exactly that... x-rays and CAT scans on my phone, all using free apps. Similar viewers exist for Mac and Windows too. It works fine and the image format is a lot more powerful than JPEG, letting you scan between depths (or reconstruct a 3D model from individual slices), etc.
It is a big problem. It's unrealistic to expect patients to have access to a DVD ROM drive, let alone the know-how to use any of the software mentioned
Learning to accurately read more than "clean break through an arm" typically takes about 15 years (6 years of medical school, 6 years of radiology school, and fresh graduate radiologists are neither quick nor particularly accurate compared to those who have been working for 3 years).
“since it means that their personal notes about their patients will be made available directly to the patient, something that was not possible in the past. Doctors often write down their real thoughts about the patient in there and can say some things the patient might not be happy with.”
Just when you thought American healthcare couldn’t get worse, our genius leaders have decided to couple full and immediate patient access to medical notes with frequent patient surveys about their doctor’s visits. Did a patient request unnecessary antibiotics and you refused? Ouch, that’s going to hurt your survey results and possibly impact your future earnings. Oh also, they read through your visit note and saw that you added “obesity” to their problem list since their BMI puts them in that category and you wanted to make sure they were screened appropriately for diabetes and heart disease at their next visit. The patient finds this very offensive and has requested to meet with the practice manager about the situation.
"Patient feels nausea when seeing the color yellow; I have proscribed a placebo to gauge the effect." Not something a doc would want the patient to know.
Trying a medication that's proven effective to treat symptoms in some cases isn't the same as giving a placebo. One is regular medical practice and the other is medical research. People don't go to the doctor to participate in research, they go to get treated.
I would say that “snarky” comments should not be a part of any medical note, so that’s unprofessional. Again though, these notes are not designed for patient consumption. As a physician myself, I have ZERO interest in reading my own doctor’s notes about my health—and I would prefer a system where my doctor doesn’t feel like he’s writing a document which I will be reading immediately. I want him to consider all the possibilities, even things that might be uncomfortable to me. I want him to get as close to truth discovery as possible and I don’t want to get in the way. If I don’t trust him to do so, I should find another doctor.
The system as it was previously was better. I could request a full copy of my medical records whenever I wanted, but without making my doc feel like I could be constantly snooping on his notes. I know all of this “patient empowerment” seems like a good thing, but there may be some serious downsides of this implementation.
What I would really like is an encrypted file that I can carry on me with an open format of all relevant medical records / labs / imaging that could be decrypted by any hospital or clinic EMR. That way, even if I’m unconscious or have forgotten my password, medical care can be given efficiently.
Having built workstations in imaging that used DICOM extensively, I disagree with the fact that DICOM is ancient and painful to work with. Yes, it is difficult to understand but there are plenty of great toolkits and examples to get started (DCMTK, dcm4che). And it also has open source implementations (dcm4chee).
DICOm has a portable media extension which let's anyone transport studies using USB, keep it in a folder. And it works well when it needs to be fed into a PACS, RIS l
It has stood the test of time when stuff like HL7 went from V2 to V3, CDA and related tailspins till FHIR came about (and let's not talk about ISO13606, OpenEHR).
It's UID space is well defined that's it's used in the aircraft inventory space.
None of which a patient, the person who this whole article and comment thread is about, would care about or even understand.
In the age of smartphones and immediate access, it is ancient and hard to work with. It may have benefits, it may be resilient, but none of those are mutually exclusive.
The doctors notes are sometimes actually a problem. We are in Sweden where they are open to patients and I know doctors who received complaints because of their notes (e.g. because they made the patient anxious). They were pretty harmless ones, like "this should be monitored". So to avoid complaints doctors start to not write notes into the official notes, which makes things worse.
This is a good point. If doctors start writing sanitized notes or leaving things out, it would be net negative. US patients can get their full medical records by requesting them from the office, and the notes are in there, but most patients do that only if leaving the practice or if the doctor retires.
I requested and received my medical file from a doctor who passed away. I enjoyed reading through it but was glad I didn't see those notes in real-time. I wouldn't have wanted to go to my next appointment wondering, "I think I'm doing okay, but is he going to write that I'm less compliant than the last time?"
This is absolutely correct and exactly why this new requirement will, in the long run, degrade medical care. I can promise you that very few if any practicing physicians were consulted in the writing of this legislation.
I've had routine MRIs for the last couple years and it has been interesting to see how the story to obtain image CDs has changed over the years.
Years ago, I could just ask the tech to burn me a CD and it was often ready for me when I left the changing room. Then I had to start asking the reception desk but sometimes wasn't able to pick it up the same day. Most recently, the reception desk said they could no longer help me and gave me a flyer that said I had to call a central office of the hospital and schedule a CD pick up at a different location. The flyer also made it sound like I was going to be charged for the CD, but luckily I was not.
The CD I was given has a Windows-only program on it, complete with installer, and that is the only way to view the pictures on the disc. There are no JPG, PNG, GIF, RAW, PDF or any other recognizable files on the disc by itself.
A larger part is not necessarily the personal thoughts of the doctor - but rather than embarrassment of showing that the clinical note it's actually sometimes a mishmash of copy paste, sometimes done by low-paid wage workers.. Sometimes offshore workers... and yet, all the collected data largely remaines useless information at best, or outright wrong and dangerous at worst.
I worked on a system to do this back in 2008 - we won an Apple Design award for it and I got a free 30-inch cinema display. This was mind blowing 14 years ago, but now it's not that exciting.
I work on a PACS system. The problem isn’t DICOM, it’s big ass EHRs that don’t need to cooperate with anyone but themselves.
Also, we’ve always had to allow exports in .iso/.zip with a viewer for the image data - going back to 2008. This is mostly forcing the big EHRs to stop playing games with patient data
Calling DICOM ancient is funny, the whole industry has basically been dragging their feet adopting it. FHIR will be “ancient” by the time it’s widely adopted, as well
Last time I seriously worked on interoperability between pacs systems in 2014, there were new products being put on the market from major vendors like GE that didn't support Unicode in dicom.
And when I worked on radiation therapy systems, we ran into limitations with fixed-length fields being insufficient for the number of points in a region of interest, unless you use an encoding that doesn't indicate types. (4 bytes - either 2 for data type and 2 for length, or 4 for length with no data type listed).
When I was working on MRI data about a decade ago, there was another newer format .NII gaining traction. This was demonstrably easier to work with and the good thing was a lot of views (imagine a time series or fat-water separated information) & could simply be stored in its container format as opposed to Dicom.
I am not sure how well it might work for viewing on patient consoles, but it sure was a step ahead for making data portable.
There's no NII format, that's the file extension of a format called NIfTI.
NIfTI is not meant to be a replacement for DICOM. It's meant to be a quick and simple file format only for neuroimaging and only for research. It's missing countless features that are required for clinical use and it stores 3D data. So it's not a good format for xrays, ultrasounds, etc.
DICOM: "Designed by a committee" would be an understatement. This is the only protocol I've seen where the envelope is a different byte order from the payload. At least in practice, IIRC the payload can be specified as either, but in practice it's always swapped compared to the envelope.
Not available upon request or not offered? Recently had an MRI and they copied the files to a thumb drive I gave them after asking due to not having a CD reader at home for over 5 years. A printed copy was more expensive.
MRI sets can be pretty big - like 50GB big. So you'll probably be wanting to transfer them with a USB drive in most of the US given the quality of "broadband".
Nothing sets off my fuse than a clinic refusing to send me my data so I can get it to another doctor for another opinion, ESPECIALLY around cost / prognosis (well, they don't "refuse", they just delay for so long). So, so glad to hear this.
> Individuals’ Right under HIPAA to Access their Health Information 45 CFR § 164.524
> Timeliness in Providing Access
> In providing access to the individual, a covered entity must provide access to the PHI requested, in whole, or in part (if certain access may be denied as explained below), no later than 30 calendar days from receiving the individual’s request. See 45 CFR 164.524(b)(2). The 30 calendar days is an outer limit and covered entities are encouraged to respond as soon as possible. Indeed, a covered entity may have the capacity to provide individuals with almost instantaneous or very prompt electronic access to the PHI requested through personal health records, web portals, or similar electronic means. Further, individuals may reasonably expect a covered entity to be able to respond in a much faster timeframe when the covered entity is using health information technology in its day to day operations.
> If a covered entity is unable to provide access within 30 calendar days -- for example, where the information is archived offsite and not readily accessible -- the covered entity may extend the time by no more than an additional 30 days. To extend the time, the covered entity must, within the initial 30 days, inform the individual in writing of the reasons for the delay and the date by which the covered entity will provide access. Only one extension is permitted per access request.
One of my kids' doctors left their practice, and we followed them to the new. The old practice sent us a letter stating patients were not permitted to do so, and they refused to provide records citing a non-compete. (I had more than one sweary phone call with them over this.)
HIPAA has no private right to civil action in these scenarios, so we had to involve the state, and that process took about six months. It's definitely not fast; we were happily in the scenario where the records weren't time critical.
Im not in a position to produce the section reference right now but the regulation discussed in the comments, 45 CFR, requires providers are able to transfer medical records from the old practice to the new practice.
Their issue wasn’t with the regulation not existing, they knew full well. The problem is that if they refuse, then what? You have no power as an individual to force them to do it.
And as the parent comment said, you have to involve the state and it takes 6 months.
The practice was doing something both wrong and blatantly illegal that impacted my child's continuity of care. That's well worth going to the effort to get them smacked.
> Reminder #5 – How IB actors make EHI available for access, exchange, and use can and will vary based on who the IB actor is, their technological sophistication, and who it is that is seeking to access, exchange or use an IB actor’s EHI.
> The information blocking regulations do not require IB actors to adopt or use certain technologies or platforms. IB actors may use “patient portals,” other web interfaces, application programming interfaces (APIs), and a multitude of technologies and platforms to make EHI available for access, exchange, or use. The information blocking regulations focus on practices that are likely to interfere with, prevent, or materially discourage access, exchange, or use of EHI. For example, while the information blocking regulations don’t prescribe specific technologies, how IB actors design, implement, use, or limit technologies in relation to the access, exchange, or use of EHI could implicate the information blocking regulations.
This is the part I had to go looking for. I've been in this space for just a bit now, and I can tell you that like most of American healthcare, it's a shitshow. Get ready to develop an app against your doctor's EHR API if they don't expose this via a patient portal.
I don't think the docs are too happy about giving you access to "their" work product, AKA your health data. And to some extent I sort of see where they're coming from - if they were photographers, they'd actually hold copyrights over images they take of you.
But the goals here are at least laudable and there is some rather glacial advancement.
Is this always the case for photographers? If they are employed by a business and the pictures are taken for pay, wouldntthe company own them? Can you specify the same in a contract with a freelance photographer?
I don't really know all the legal ins and outs, but you are the artist of the pictures you take and you own the copyright. I'm sure you can work as an employee and you can always sell the copyright along with the work. It used to be back in the day that photos were taken on film, so photographers could retain the film and sell you prints or just give you the film so you could make whatever you wanted. I've mostly been out of the loop since those days, so I'm not sure what the conventions are like these days.
The most interesting legal questions around this recently are regarding monkeys or other animals who take selfies, and whether they can own those works.
I was hosting some friends who were on vacation. They live across the US. Long story short, one of them had to go to the emergency room and was subsequently diagnosed with cancer, very far from home.
He said OK, I don't live anywhere near here. You will just transfer all this info to my "home" doctor, right? The doctor seeing him said "not necessarily."
Assuming I'm reading this article right, thank fucking god no one else will have to go through that.
I fell ill far from home and while the care was subpar I did get to take along a CD with my xrays on it. Nobody seemed to know what to do with it and I ended up getting a redundant set of xrays within days of the first set. No weird file formats, they were full-resolution and exactly what the xray tech and docs were looking at previously.
Before people get their hopes up on this, remember there is no enforcement mechanism currently. OIG has to issue a final ruling on the penalties for HealthIT which I've heard from some insiders could take as long as another year. For providers, a preliminary ruling and then a final ruling has to be made which could take years.
So yes, the law mandates that your entire EHI* designated record set be made available there is NO enforcement mechanism to penalize bad actors at this point in time. Also its important to note that HealthIT and providers can make a claim to continue to block information if it falls under 8 categories (patient privacy, patient harm, financial costs, content exception such as psychotherapy notes, etc). The proposed penalty is 1 million per Information Blocking claim for HealthIT. So HealthIT has a huge incentive once the final ruling is made to make sure there is no information blocking, but providers right now don't have any kind of penalty themselves.
*EHI = Electronic Health Information, note this moves beyond the USCDI V1 standard someone mentioned in another post to the entire Designated Health Record Set including claims, payment information, imaging data, and anything that is used to make a healthcare decision by providers.
* Disclaimer I've done work for an open source EHR and I've been forced to become pretty familiar with this stuff.
Don't get your hopes up as to how useful this is. In Australia we have had federal government digital health record capability for something like 5 years now. There was all sorts of moral panic about issues at the time it was mooted - around privacy and so on and was opt in. I saw it as a great idea, as I have chronic health issue and thought it as a useful journal for use by medicos in my ongoing care. However despite having GP (physician) visits and haemotologist visits multiple times a year, and blood tests and even surgical biopsy tests there are no records of these being added. I mention it to my doctors and the boxes are ticked as far as I know on forms. The only things that make it to my record are simple scripted medicines (presumably because they have government reimbursement, through the PBS) and immunisation records such as for COVID and flu. Certainly no effort has been made to scan or digitise any CT records and similar imaging from before the health records system was brought in. So it all seems a bit of a boondoggle and waste of resources.
Interesting. My experience is somewhat different, but also does not commend the Australian system. I did not opt in, but my general practitioner uploaded everything anyway. Important details were entered incorrectly - I was listed as having conditions I do not have - which I imagine could have had catastrophic consequences had another doctor relied on any of it. I don't think I was even notified the record was created, I seem to recall discovering it by chance, but I could be misremembering.
Worth mentioning is the fact that under the law as it was passed, this (in my case incorrect) data could never be deleted. Once the botched roll-out began, the law was thankfully amended, and I was allowed to have the whole thing taken down.
As a co-fouder of https://www.medorbit.co (shameless linking my startup I know but in my defense no one here is my possible user) who is trying to make this possible for the African patient this is very motivating.
Good luck with that. If the medical group you are a part of is in their regional, statewide or a country wide HIE, you'd have to check with every connected partner to see what other systems may have queried for your data and potentially have copies as well.
You typically won't have your data in too many other systems unless you are hopping between different medical groups/hospitals. There's just a possibility that the above could happen because, seeing and making the sausage, I wouldn't trust anyone to be able to tell me who has seen my health records.
The providers I've seen have had my records online since at least 2015 so this regulation doesnt really affect me much. You just have to know who what and how to ask.
I can see something like this negatively impacting what doctors say to each other.
Astounding to me that anyone is downvoting this sentiment. I would love to hear some sort of rationale from anyone who believes that individuals shouldn't have the right to control who has access to their own private medical information and who stores it.
Not the down voter, but if you look through guidance from the malpractice insurance industry (e.g., https://www.thedoctors.com/articles/medical-and-dental-recor...) you will see that defense against potential malpractice claims is a key driver of retention practices. Introducing a right to be forgotten in healthcare would presumably require concomitant reform of the medical malpractice landscape.
I'm not arguing against the sentiment (and indeed I think patients should have a much stronger ability to audit and control how their records are shared, including the ability to opt out of sharing) -- but when it comes to records retention by the originating organization, it's important to evaluate these practices in the broader context.
I occasionally wonder if it would be the cheaper, sustainable approach to just give everyone an iOS device containing their full medical record in HealthKit and require that all data requests go through your device, where you have full control on who gets access and for how long.
A simple back-of-the-envelope calculation results in $1 000 per iOS device x 300 000 000 = $300 000 000 000 (three hundred billion). To put that into perspective, the CDC says that $3 795 000 000 (three-thousand seven-hundred and nine-five billion) was spent on healthcare in 2019.
This just isn't realistic. No hospital EMR is going to act as a proxy for a thousand customer iOS devices hooked up to the WiFi or whatever.
Just imagine the doctor trying to pull up your chart, and failing because you forgot to charge your phone. Yeah, no.
Or, even better, you get admitted to the ER in critical condition and now nobody can pull up your blood type or even enter your medical records, because you don't have your phone on you.
Non-emergency intake procedures would be a great point in the workflow to get the authorization handshake out of the way.
In emergency situations, getting medical records isn’t even a guarantee, today.
If all a paramedic had to do was plug in a dead phone and wait 15 minutes to get access to medical records that would otherwise require potentially hours and fax machines, it might be a tic in the acceptability matrix, there.
Using the device to manage your data, with whatver access controls you are allowed, doesn’t necessitate that the data be solely stored on the device.
Using notifications and other operating system functions ought to cover a wide variety of workflow needs. The device would be able to take the place of any signature machines, on-premises, for example.
Finally, as it is today, you can configure iOS and watchOS to display emergency medical information even while locked. Let alone any future enhancements that could really make a dent in the overall healthcare software ecosystem.
edit: how environmentally sustainable it is to make 7+ billion iPhones, is a different topic though
I’m not an economist, but I suspect that the supply curve would adjust pretty drastically to even just a doubling of demand, let alone a quadrupling.
edit: there probably isn’t even enough readily available physical material for that many batteries. for example, consider the projected difficulties with supply side for the upcoming increase in demand for electric vehicle battery material
That solution assumes everyone has digital skills. The people who most heavily consume medical services are usually older, poorer, disabled, and on the wrong side of the digital divide. Many people lack health literacy or even literacy. How would this scheme even handle forgotten passcodes or device theft?
Vendor lock in and giving a trillion dollar corporation the keys to your health record is a bad idea.
In Finland we have online access the health data, tax, social benefits and what not for years. Banks close their branch offices and do their best not to serve customers in the few remaining ones.
But there are about 10% (IIRC) of the adult population who don't even have credentials to any of those services (credentials are either provided by your bank or the SIM card of your phone). Or they don't have / cannot use any device to access online services.
It's a significant problem of discrimination. But typically nobody mentions that, they are all proud how digital the country is.
True, part of what I ponder when the thought arises, is how the government would probably need to claim eminent domain over the whole thing, simultaneously build on the already great accessibility features, and then roll it out with a jobs programs in social services to accommodate everyone that needs accommodations.
For the "unconscious patient in the emergency room without a working phone" situations, put an RFID tag or a printed QR code in the hospital admission armband, then the doctor / nurse can scan it to enter records from their own device.
Those records go onto the hospital's / practice's server, then when the patient wakes up / next of kin arrives and they find / charge their phone, they enroll by an app that generates a private key on the device, then shows the public key in QR code form. Nurse scans the QR code on their device and signs off on a dialog box that says "Yes I verified the person with this phone has the right to this patient's records," then the server lets the app authenticate and get the records.
The API should be open source so if you want your records, you can hack some JSON, sign an API request with your private key and download it (maybe with jigdo or rsync or something if it's huge X-rays and 3D CAT scans and stuff?). A third party app can put it on your phone for you, but hopefully there will be regulatory stuff that tries to make barriers to consolidation to encourage the system to remain federated.
I.e. regulations should try to make sure your medical history stays within the offices of primary physician / specialist / hospital where you're a patient, and your phone's local storage. But we really don't want some "too big to fail" medical data startup putting ten million people's medical records in one AWS bucket.
Indeed, a government built open standard would be ideal, especially if the existing login.gov digital services team was involved in rolling out a hypothetical health.gov
Login.gov seems to be on the right track, architecturally speaking.
unfettered access to their full health records in digital format. No more long delays. No more fax machines. No more exorbitant charges for printed pages.
Some of that is true, some of that is hype.
Last week I asked a mid-sized healthcare company for my records from ten years ago.
I was told that they could not be transmitted digitally, only on CDROM. And that the price for duplication started at $500 and would go up from there.
I was also told that if my current doctor requested the records, it would all be free.
So yes, the records can be moved around digitally, but actually personally owning a copy of the records dos not seem "unfettered."
If those were already electronic records, your provider broke federal law by declining and trying to charge you that much. You can submit information blocking reports here: https://www.healthit.gov/topic/information-blocking.
This isn't totally a legal problem, it's also an adherence problem. I'd estimate about half of providers don't know what exactly they are required to do and at what cost. Our company helped patients request their own records and half the time we had to call and talk to the provider about the legal requirements and ask them to comply or reduce the price.
Even before October 6 and the Cures Act, HIPAA law already required very cheap access to your own medical records. It's something like a base maximum cost of $6.50 plus a per-page printing fee but ONLY if you request paper format. HIPAA law directly states that the format requested by the patient MUST be given if readily available. Digital format doesn't require printing.
Haven't lived in Sweden for 35 years, so not familiar with that. A web search found https://1177.se , is it that?
We also have it in Finland as https://kanta.fi. You can see all your healthcare visits, but only short summaries. Results from examinations are not there. Got the analysis of my last blood samples on paper. But that was a friendly doctor, often you get nothing. I think legally you have the right to get everything, not sure, haven't been ill... But you'd need to request it and there is no standardized way to do so regardless of healthcare provider.
I really love it when I want records from Doc A to be sent to Doc B, then the Doc B offices refuses to get records and insist the patient need to do it, despite signing over all the papers, and then Doc A refuses to send them because they can only give to patient - even though patient is begging to send them. Quadruple the pain if you need records from multiple doctors. This is why now I prefer going to chain hospitals like university clinics. At least they can access records from doctors within their network. Like NYU, Mount Sinai, Presbyterian, etc.
My experience is that Doc A sends the thumbnail of the image to Doc B. Doc B is happy that Doc A sent an unusable file because he now gets to charge for a new image.
Hospitals track MRIs and other images ordered per doctor, and doctors are under pressure to hit their quota.
Not sure where you got the idea that there are "quotas" doctors have to meet for ordering diagnostic tests. I can't speak for other countries but in the US this is not the case.
You can't speak for other countries, but you can for all of the US? Then explain these articles:
"Doctors Under Pressure to Meet Quotas and Fill Hospital Beds" [1].
"Once hospitals have made such a huge investment, experts like Dr. Zietman say, doctors will be under pressure to guide patients toward proton therapy when a less costly alternative might suffice." [2]
"While payments vary widely, doctors often collect $500 to $700 for a typical M.R.I. done on an outpatient basis in this area." [3]
Article 1 is about certain for profit hospitals setting quotas on the number of patients doctors admitted to the hospital, and giving kickbacks to doctors for ordering tests (which is illegal).
Article 2 is addressing a cancer treatment, not diagnostic tests. And has one quote by a doctor concerned about oncologists being pressured to use proton therapy. No mention of quotas.
Article 3 is about the proliferation of advanced diagnostic imaging (MRI, CT, etc) in private clinics and the concerns about over utilization of these diagnostic tests as well as potential conflicts of interest with doctors having a financial stake in the tests they're ordering. These are both real problems in the US medical system. However, no mention of US hospitals placing quotas on diagnostic tests ordered by doctors on their staff.
Is it possible these types of quotas have occurred? Sure. But is this typical practice in the US? No.
Your experience is different from mine. Ordering unnecessary tests is typical practice in my experience. And doctors are quick to reject tests done at another hospital, as if tests done at another hospital are untrustworthy.
Any time a US hospital has expensive equipment, doctors working at the hospital are under pressure to keep it running. You can find any number of articles on this topic if you're willing to spend a few minutes googling.
It's definitely the case that many unnecessary tests are ordered. That is a different issue from quotas, which is specifically what I was addressing.
Anyway, I will concede that my personal experience practicing medicine is not necessarily representative of the practice of medicine in all areas of the country.
Can confirm that in the "socialized" health care system of the UK, the "quota" is more like a "cap" and the optimization done is towards 0 not infinity.
Interesting, wasn't this possible before in the states? In Sweden we've been able to access our medical journal for years, not really sure of when it first arrived.
Epic has really increased interopability between separated owned instances and definitely leaders in the EHR space and functionality of providing patients their data.
Like with careeverywhere, of mychart where patients can download digital diagnostic imaging/view reports/ lab results..
Many of the APIs being used here are also available at a population level. So there's analytics and ml work possible too especially when working through payers and providers, not just patient mediated access. If anyone wants to do something about improving this space i started a whole company around these regulations and APIs. https://1up.health I'm Ricky @ if you want to chat
I really want to be optimistic about this but as a us consumer of us healthcare its almost impossible to get even my vision prescription.
I'm betting whatever I get from the hospital is in an ocean of binary formats too arcane to digest, from a graveyard of bankrupt health data applications and in a shorthand I'll never comprehend because the legend to it is in some healthcare billing system only god and bill collectors can see.
Apple Health successfully scrapes my medical records from multiple health systems (as well as Labcorp) using OAuth authenticated public API endpoints provided by their Epic EHR instances. I'm somewhat optimistic because of this. The technology implementation was not the problem, the policy stick was lacking. Thwack.
Tangentially, if you have an iPhone, I highly recommend connecting your health systems so that the records are retrieved and stored in your iCloud account, from a data sovereignty perspective.
Slightly off topic, but why is there no ability (as far as I can tell) to lock your Apple health records with a password/pin/faceid? Seems crazy that every other app containing pii (bank, airline, etc) is lockable but my health records are wide open to anyone who picks up my unlocked phone.
The problem is that the protocol used by imaging devices (DICOM) is ancient, and connecting with a DICOM server is a pain. There is a sort of modern standard that I've heard talked about called DICOMweb, that I think will be hooked up with FHIR and be made apart of the USCDI eventually (probably). But we still aren't very close to being able to see X-rays on our phones.
Also, one funny anecdote I've heard from working in this space is that some doctors do not like the Clinical Notes story (https://build.fhir.org/ig/HL7/US-Core/clinical-notes.html) since it means that their personal notes about their patients will be made available directly to the patient, something that was not possible in the past. Doctors often write down their real thoughts about the patient in there and can say some things the patient might not be happy with.