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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...

> 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).

Software is the least of your problems.

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.

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.

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.

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?

I just got an external DVD reader and it worked just fine on my M1 mac

“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.

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.

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

Imagine how good _thinking_ you're taking the right medication would be and _actually_ taking the right medication would be.

Respectively they should. This is how they narrow down and diagnose something the right way. Something that your computer algorthims can not do,

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.

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.

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/

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.

That program is probably just a DICOM viewer.

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.

> 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).

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.

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).

It's from the 80s and shows.

Some say ancient, others call it mature

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.

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.

DICOMWeb over FHIR sounds miserable.

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.

Got a dental 3d scan recently and I also couldn’t get that as any sort of digital file

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.

Requested but never received, they were sorta like “oh nobody ever asks for those”

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".

Along with radiography and similar there is genomic information that is similarly difficult to move around and read.