[HN Gopher] Patients can now access all their health records dig...
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Patients can now access all their health records digitally
Author : andsoitis
Score : 257 points
Date : 2022-10-07 22:44 UTC (1 days ago)
(HTM) web link (www.statnews.com)
(TXT) w3m dump (www.statnews.com)
| mayhaffs wrote:
| Thank goodness
| praveen9920 wrote:
| Benefits aside, purely from security stand point, This might
| become vector for bad actors for stealing medical by social
| engineering.
| anaganisk wrote:
| I wonder if the data will be "accidentally" leaked to insurance
| company by oxford analytica :p
| rejectfinite wrote:
| We have had this in Sweden for like 10 years... we have a
| national BankID for verification though.
|
| https://www.bankid.com/en/
| usr1106 wrote:
| 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.
| rejectfinite wrote:
| Yes, https://1177.se/ is the site/phone number.
| ecmascript wrote:
| 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.
| adunsulag wrote:
| 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.
| nimbius wrote:
| 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.
| toomuchtodo wrote:
| 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.
|
| https://en.wikipedia.org/wiki/Fast_Healthcare_Interoperabili...
|
| https://fhir.epic.com/Documentation?docId=fhir
|
| https://support.apple.com/en-us/HT208647
| larrybud wrote:
| 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.
| toomuchtodo wrote:
| https://www.apple.com/feedback/health/
| seba_dos1 wrote:
| In United States.
| martyvis wrote:
| 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.
| troad wrote:
| 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.
| dfxm12 wrote:
| 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.
| Zigurd wrote:
| 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.
| smithmayowa wrote:
| 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.
| rickysahu wrote:
| 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
| Dig1t wrote:
| 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.
| solardev wrote:
| Is it really that big a problem? Yeah the DVD is annoying, but
| once you get it, DICOM is easily viewable, with free and/or
| open source softare...
|
| 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.
| conqueso wrote:
| 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
| getcrunk wrote:
| yea it was easy for me to figure out as well, but I am not
| the average person. My parent or sibling wouldnt be able to
| have done it.
| nmeagent wrote:
| I honestly don't understand why it's unrealistic to require
| a DVD drive when one can often buy a USB unit for less than
| the price of a decent dinner.
| danielheath wrote:
| 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).
|
| Software is the least of your problems.
| solardev wrote:
| The DVD drive, yeah, that's annoying, but the portable ones
| exist. And the DVD has its own (Windows only) self-
| installing viewer thing.
|
| 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.
| twelve40 wrote:
| yeah thanks to Mr Cook for example, if you're on a Mac, no
| dice.
|
| that said, tfa, while encouraging, has no details as to how
| this all can possibly happen.
| renewiltord wrote:
| I just got an external DVD reader and it worked just fine
| on my M1 mac
| Kwpolska wrote:
| Mr Cook? How many modern consumer Windows laptops have a
| DVD drive?
| batty_alex wrote:
| 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
| adolph wrote:
| Some say ancient, others call it mature
| QuercusMax wrote:
| 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).
|
| It's from the 80s and shows.
| NegativeLatency wrote:
| Got a dental 3d scan recently and I also couldn't get that as
| any sort of digital file
| cocoricamo wrote:
| 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.
| NegativeLatency wrote:
| Requested but never received, they were sorta like "oh
| nobody ever asks for those"
| ch4s3 wrote:
| DICOMWeb over FHIR sounds miserable.
| radicalbyte wrote:
| 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".
| m3047 wrote:
| 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.
| oplav wrote:
| 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.
| TedDoesntTalk wrote:
| 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.
| jahewson wrote:
| That program is probably just a DICOM viewer.
| cocoricamo wrote:
| If you use linux search for a dicom viewer in the
| repositories. I've used Weasis without issue so far.
|
| https://nroduit.github.io/en/
| markus92 wrote:
| 99.9% chance it's all DICOM, combined with a simple viewer
| program. There's tons of FOSS DICOM readers around, though
| all with their own limitations.
| IG_Semmelweiss wrote:
| 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.
| lostlogin wrote:
| > But we still aren't very close to being able to see X-rays on
| our phones.
|
| 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).
| QuercusMax wrote:
| 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.
|
| Hl7 tho.... That is crazy stuff.
| cycomanic wrote:
| 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.
| codexjourneys wrote:
| 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?"
| srvmshr wrote:
| 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.
|
| Edit: NifTI format. I was forgetting the name.
| [deleted]
| light_hue_1 wrote:
| 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.
| null_flavour wrote:
| 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.
| mynameisvlad wrote:
| 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.
| adolph wrote:
| Along with radiography and similar there is genomic information
| that is similarly difficult to move around and read.
| hanklazard wrote:
| "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.
| sethammons wrote:
| "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.
| parineum wrote:
| Doctors shouldn't be performing experiments.
| ceejayoz wrote:
| Kid has asthma? Experiment with an inhaler. Switch to a
| different one if it's not effective.
|
| 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.
| YLYvYkHeB2NRNT wrote:
| Respectively they should. This is how they narrow down
| and diagnose something the right way. Something that your
| computer algorthims can not do,
| mikeodds wrote:
| The flip side of this is it will let patients catch erroneous
| note taking which would have a knock on effect for future
| visits or referrals.
| rrwo wrote:
| Yes. I've had this once when moving to a new city and
| arranging to have my medical records transferred.
|
| My new doctor read the snarky and incorrect internal notes
| to me.
| dogmatism wrote:
| *laughs in hospital still on Meditech "Magic" which is
| essentially a TUI
|
| even sitting at the terminal, I can't get the fucking records I
| need
| nradov wrote:
| Have you looked at the Meditech API documentation?
|
| https://home.meditech.com/en/d/restapiresources/pages/apidoc...
| 9wzYQbTYsAIc wrote:
| Hah, at least they have public API documentation unlike
| others
| NeveHanter wrote:
| Can I ask for adding country/region information to such titles?
| I'm not from the US and I need to assume tribal knowledge that
| this is about US.
| sergers wrote:
| 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..
| lifeplusplus wrote:
| 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.
| petilon wrote:
| 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.
| obloid wrote:
| 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.
| petilon wrote:
| 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]
|
| [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...
| obloid wrote:
| 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.
| petilon wrote:
| > _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.
| obloid wrote:
| 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.
|
| edit: grammar
| shapefrog wrote:
| 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.
| sdfhbdf wrote:
| The title should be amended to point out that it concerns only US
| reaperducer wrote:
| _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."
| pessimizer wrote:
| This is great. Now let us delete them.
| leovander wrote:
| 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.
| ecommerceguy wrote:
| Or you can request your MIB, which is basically like a credit
| report for healthcare.
|
| 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.
| [deleted]
| VadimPR wrote:
| Why?
| 9wzYQbTYsAIc wrote:
| Privacy, "right to be forgotten", self-determination, etc.
| seem like likely reasons for someone to want that.
| StanislavPetrov wrote:
| Because patients should have the right to decide whether and
| where their confidential medical data is stored.
| StanislavPetrov wrote:
| 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.
| JoshMandel wrote:
| 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.
| mod wrote:
| You may have read the comment the way I initially did:
|
| 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.
| 9wzYQbTYsAIc wrote:
| 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.
|
| https://www.cdc.gov/nchs/hus/topics/health-care-expenditures...
| supertrope wrote:
| 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.
| usr1106 wrote:
| 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.
| 9wzYQbTYsAIc wrote:
| 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.
| csense wrote:
| 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.
| 9wzYQbTYsAIc wrote:
| 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.
| encryptluks2 wrote:
| IOS is the most closed and expensive platform for mobile
| devices. This sounds like corruption to me.
| 9wzYQbTYsAIc wrote:
| It wouldn't be corruption if the technology was claimed by
| the government under eminent domain or other mechanisms for
| taking over parts of industry
| bpodgursky wrote:
| 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.
|
| Not going to happen.
| 9wzYQbTYsAIc wrote:
| 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
| mwint wrote:
| There have been ~2B iPhones made. Doesn't seem like a big
| deal. Not even an order of magnitude.
| 9wzYQbTYsAIc wrote:
| 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
| shishy wrote:
| 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.
| hotpotamus wrote:
| > 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.
| [deleted]
| galangalalgol wrote:
| 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?
| hotpotamus wrote:
| 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.
| nradov wrote:
| "When a photograph is a work made for hire, the employer is
| the copyright owner, not the photographer."
|
| https://photocopyrightlaw.com/who-owns-the-copyright-to-a-
| wo...
| toomuchtodo wrote:
| https://www.hhs.gov/hipaa/for-professionals/privacy/guidance...
|
| > Individuals' Right under HIPAA to Access their Health
| Information 45 CFR SS 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.
| ceejayoz wrote:
| 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.
| antgly wrote:
| What was it specifically about this doctor that you found
| it worth to get the state involved? Just curious.
| ceejayoz wrote:
| 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.
| aabaker99 wrote:
| 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.
| ceejayoz wrote:
| They were entirely able. They were openly using the
| records as hostages to attempt to prevent patients from
| leaving their practice.
| mynameisvlad wrote:
| 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.
| mod wrote:
| Are doctor's notes part of this?
|
| I wonder how many doctor's are going to regret some things they
| wrote.
| NegativeK wrote:
| Notes have been part of your portable data for a while now.
|
| Doctors who haven't learned to write appropriately (or
| cryptically) have been foolish for a while.
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