Patients can now access all their health records digitally • Hacker News Board

Re: Patients can now access all their health records digitally

#81

Post by markus92 » Sat, Oct 08, 2022, 9:55 AM UTC

TedDoesntTalk wrote: post #31

oplav wrote: post #25

Earlier quoted context omitted.

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 h…

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.

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.

Re: Patients can now access all their health records digitally

#82

Post by Kwpolska » Sat, Oct 08, 2022, 9:58 AM UTC

twelve40 wrote: post #55

conqueso wrote: post #50

Earlier quoted context omitted.

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

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.

Mr Cook? How many modern consumer Windows laptops have a DVD drive?

Re: Patients can now access all their health records digitally

#83

Post by sergers » Sat, Oct 08, 2022, 10:16 AM UTC

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..

Re: Patients can now access all their health records digitally

#84

Post by troad » Sat, Oct 08, 2022, 10:21 AM UTC

martyvis wrote: post #73

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 despi…

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.

Re: Patients can now access all their health records digitally

#85

Post by danielheath » Sat, Oct 08, 2022, 11:29 AM UTC

conqueso wrote: post #50

solardev wrote: post #40

Earlier quoted context omitted.

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. A…

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).

Software is the least of your problems.

Re: Patients can now access all their health records digitally

#86

Post by larrybud » Sat, Oct 08, 2022, 12:09 PM UTC

toomuchtodo wrote: post #9

nimbius wrote: post #8

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 collect…

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 rec…

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.

Re: Patients can now access all their health records digitally

#87

Post by NeveHanter » Sat, Oct 08, 2022, 12:17 PM UTC

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.

Re: Patients can now access all their health records digitally

#88

Post by reaperducer » Sat, Oct 08, 2022, 12:24 PM UTC

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."

Re: Patients can now access all their health records digitally

#89

Post by cycomanic » Sat, Oct 08, 2022, 12:26 PM UTC

Dig1t wrote: post #10

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 imagi…

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.

Re: Patients can now access all their health records digitally

#90

Post by toomuchtodo » Sat, Oct 08, 2022, 12:55 PM UTC

larrybud wrote: post #86

toomuchtodo wrote: post #9

Earlier quoted context omitted.

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 rec…

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.

https://www.apple.com/feedback/health/