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

Re: Patients can now access all their health records digitally

#111

Post by m3047 » Sat, Oct 08, 2022, 5:28 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…

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.

Re: Patients can now access all their health records digitally

#112

Post by solardev » Sat, Oct 08, 2022, 6:40 PM 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

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.

Re: Patients can now access all their health records digitally

#113

Post by rejectfinite » Sat, Oct 08, 2022, 7:30 PM UTC

usr1106 wrote: post #78

rejectfinite wrote: post #69

We have had this in Sweden for like 10 years... we have a national BankID for verification though. https://www.bankid.com/en/

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 e…

Yes, https://1177.se/ is the site/phone number.

Re: Patients can now access all their health records digitally

#114

Post by nmeagent » Sat, Oct 08, 2022, 9:07 PM 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

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.

Re: Patients can now access all their health records digitally

#115

Post by dylanwenzlau » Sat, Oct 08, 2022, 11:47 PM UTC

reaperducer wrote: post #88

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 u…

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.

Re: Patients can now access all their health records digitally

#116

Post by parineum » Sun, Oct 09, 2022, 1:15 AM UTC

ceejayoz wrote: post #108

parineum wrote: post #96

Earlier quoted context omitted.

Doctors shouldn't be performing experiments.

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.

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.

Re: Patients can now access all their health records digitally

#117

Post by ceejayoz » Sun, Oct 09, 2022, 1:38 AM UTC

parineum wrote: post #116

ceejayoz wrote: post #108

Earlier quoted context omitted.

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.

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.

Placebos have been proven effective to treat symptoms in some cases.

Re: Patients can now access all their health records digitally

#118

Post by hanklazard » Sun, Oct 09, 2022, 2:51 PM UTC

rrwo wrote: post #67

mikeodds wrote: post #66

Earlier quoted context omitted.

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.

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.

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.

Re: Patients can now access all their health records digitally

#119

Post by hanklazard » Sun, Oct 09, 2022, 2:54 PM UTC

cycomanic wrote: post #89

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.

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.

Re: Patients can now access all their health records digitally

#120

Post by reaperducer » Sun, Oct 09, 2022, 3:18 PM UTC

dylanwenzlau wrote: post #115

reaperducer wrote: post #88

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 u…

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 pat…

Already filed a report, right after it happened.

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.