Patients can now access all their health records digitally
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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.
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.
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.
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.
https://github.com/bettar/miele-lxiv
https://horosproject.org/about/
https://play.google.com/store/apps/details?id=com.luolai.dro...
https://apps.apple.com/us/app/idv-imaios-dicom-viewer/id1444...
> 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.
that said, tfa, while encouraging, has no details as to how this all can possibly happen.
Software is the least of your problems.
Web viewers exist too: https://ivmartel.github.io/dwv/
Not to say it's great UX, but it's really not that hard to solve compared to the rest of the mess of the medical industry.
It's a bureaucratic nightmare thing, not a software challenge.
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.
Recurrent skin infection? Experiment with antibiotics to find one it's not resistant to.
Patient on a ventilator? Getting them off will require experimenting with vent settings and periods of having them off the vent.
My new doctor read the snarky and incorrect internal notes to me.
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.
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.
Edit: NifTI format. I was forgetting the name.
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.
Patients can and clinicians can too with the likes of Intelerad’s offerings - but there are many others.
New Zealand has a fragmented system but it’s all slowly improving and depending on when and where your imaging was done, you can access it.
Far nastier than DICOM and it’s foibles is HL7 format. The RIS side of things is a cluster fuck and is more of a limitation than the image format.
I’m an imaging tech who dabbles in PACS administration (but is far from expert).
Hl7 tho.... That is crazy stuff.
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?"
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
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).
It's from the 80s and shows.
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.
The most interesting legal questions around this recently are regarding monkeys or other animals who take selfies, and whether they can own those works.
https://photocopyrightlaw.com/who-owns-the-copyright-to-a-wo...
> 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.
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.
And as the parent comment said, you have to involve the state and it takes 6 months.
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.
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.
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.
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.
https://www.mib.com/request_your_record.html
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.
as "Now let us (let's) delete them"
I think his meaning was "give us the right to delete them" which IMO should be the standard.
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.
even sitting at the terminal, I can't get the fucking records I need
https://home.meditech.com/en/d/restapiresources/pages/apidoc...
I wonder how many doctor's are going to regret some things they wrote.
Doctors who haven't learned to write appropriately (or cryptically) have been foolish for a while.
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.
https://www.cdc.gov/nchs/hus/topics/health-care-expenditures...
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.
Not going to happen.
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
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
Vendor lock in and giving a trillion dollar corporation the keys to your health record is a bad idea.
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.
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.
Login.gov seems to be on the right track, architecturally speaking.
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."
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.
I got an email a little bit later asking follow-up questions. It seems like something might happen. Or at least I'll be part of a tally of violations.
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.
Hospitals track MRIs and other images ordered per doctor, and doctors are under pressure to hit their quota.
"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]
[1] https://www.thehealthlawfirm.com/blog/posts/doctors-under-pr...
[2] https://www.nytimes.com/2007/12/26/business/26proton.html
[3] https://www.nytimes.com/2004/03/13/business/an-mri-machine-f...
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.
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.
edit: grammar
Like with careeverywhere, of mychart where patients can download digital diagnostic imaging/view reports/ lab results..
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.
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.
https://en.wikipedia.org/wiki/Fast_Healthcare_Interoperabili...