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Sorry another story about my journey with my son while he battled cancer. Closed Proprietary image formats and systems HURTS patients. We used the local hospit

by baldfat 11y ago

Sorry another story about my journey with my son while he battled cancer. Closed Proprietary image formats and systems HURTS patients. We used the local hospital for Chemo and everything else at the Children's Hospital 1.5 hours away for his legs and lungs. I would always have to wait 20-30 minutes to get a DVD of the studies (PET, CT Scan or MRI even ultrasound, but those are worthless) and then bring them to the doctor. The doctor would be forced to use whatever the portable image viewing program that came on the DVD and then they had to be sent to the IT Department to be imported into their system. We would be there to remove some horrible tumor but before half his surgeries (I can't count how many surgeries he had) we would have to go in the day before (3 hour round trip) to get the expensive scan done again. One time I had a scan at 11 PM - Midnight and then drive home around 2 AM and be back at the hospital at 7 AM check in for a 10 hour surgery. ALL BECAUSE THE FORMATS ARE CLOSED and SYSTEMS could not connect so that my son's records were all the same every where. I carried 20 DVDs with me all the time just in case. In case you are wondering my son unfortunately passed away after almost 5 years of fighting. If you are ever interested in giving to a cancer society please consider stbaldricks.org. Most charities give 0% or 2% to pediatric research and that is why we went over 20 years without a new chemo for children till last year, which St Baldrick's funded the research for this amazing new drug to fight a different type of cancer my son did not have.

RobertoG 11y ago
There is no doubt in my mind that the standardization and openness of formats, especially in medicine, should be mandatory. Somebody I know, that work in procurement for a big hospital, explained to me how the manufactures of equipment play with this (in software and hardware) in order to capture the market. It's negligence by our legislators allow this kind of thing (I hope is negligence and not greed). Sorry for your lost. I can't even imagine how this kind of experience feels.
- deleted 11y ago
  [deleted]
gozo 11y ago
I think it's too easy to blame proprietarism as such. It's a lack of universal sophistication in computer technology that makes designing systems living up to real medical concerns great efforts. When the "manufacturing techniques" of computer software is modernized, and enables more widespread implementation of these types of systems, proprietary formats simple won't be able to compete.
- ThomPete 11y ago
  That still means that proprietarism is a huge problem. I been through a melanoma I can attest to the absurdity.
  - gozo 11y ago
    I would be interested in hearing why you think proprietarism is such a greater problem than, and just not a symptom of, the things I mentioned and how you would expect to fix that.
- organsnyder 11y ago
  We know how to do this. Plenty of other industries have solved this problem. It takes organizational will to make it a priority.
  - gozo 11y ago
    That's not the point, the point is that the effort required makes it harder to innovate and that not only does that limit competition but it also enable proprietarism. In a perfect world you could just e-mail the data without any concerns of authenticity, privacy, robustness etc. But you can't, so you would have to bring in a huge firm that is going to spend a lot of money and effort getting everything right or at least certified. Of course with all that effort they now have a huge incentive to keep thing proprietary since they want to recuperate their cost and the large barrier to entry make it even more advantageous because there will be little competition. Innovation often requires COTS components to be available at a sufficient standard. No one would doubt this when it comes to something like AWS or how Tesla could make such a high level car in a relatively short time. Of course if you question the state of software you get downvoted into oblivion without reason on HN. And if it wasn't clear, these (proprietary) systems very much exists.
organsnyder 11y ago
So sorry for your loss. Thank you for sharing your experience. I work as a developer at a large-ish (>20,000 employees) healthcare system. Our CIO carries around a thick 2-inch binder from his infant son's medical treatments back in the mid-90's (his son died at around a year of age). The binder is meticulously organized and includes sections for various departments, complementary organizations (long-term care hospital, specialists, etc.), etc. It was their only way of coordinating care at that time. That experience led to the push in our system for electronic records back in the early 2000's, and we're continuing to pursue standardization and interoperability to make records accessible across departmental and organizational boundaries. To every healthcare organization—for/non-profit—that sees interop as a threat to your ability to sell licenses and fill beds, fuck you. Your customer's lives are much more important than your supposed competitive advantages—and, in the long term, the companies that share data will be the winners.
vog 11y ago
I'm shocked and also confused in reading this. Why? Because the standards are there! The ACR/NEMA standard dates back to 1985(!) and is nowadays known as DICOM. Here in Germany/Europe, the medical imaging systems as well as the archive systems (PACS) are designed to follow that standard. DICOM covers everything, from the exact flavour of lossless(!) image compression, to the metadata structure which covers fiels more than you ever need to describe the patient, up to the archiving of data. There are even Free Software / Open Source clients which do a great job in visualizing those datasets (OsiriX is a well known example). I thought that this is an international standard. How can any hospital afford to buy crap medical devices that don't care about such an important 30-year old standard? Did I get something wrong about DICOM?
- CaptSpify 11y ago
  Having worked with medical software, especially dicom: Where's the incentive? I absolutely agree it's ridiculous when they don't follow the standard, but the appeal of vendor lock-in is just too much. I don't know how to change that, unfortunately. The data flows down (Disclaimer: I am not an xray/mri/hospital tech in any way, and might be wrong): IME, there's not much "importing" of patient data into the medical devices, so there's no reason for vendors to play along. The data flows from the machine, to the dr/patient/whoever, so the vendor has the ability to dump it out in any format they want.
- acveilleux 11y ago
  Until the early 2000s, DICOM was often an expensive option. Especially in "single vendor" shops where all hardware was from $VENDOR. BTW, the euro player were also fond of this. Even with DICOM, not all encodings (either low-level, like value representations, or high-level like transfer syntaxes and image compression algorithms) are supported by all viewers/PACS. Finally, every system assign patients their own local ID and does their own local numbering/coding for precedure IDs and so on. This adds delays and work when loading foreign images into a PACS. I won't get into the bugs. I work in the field and I've seen some low-level DICOM handling functions riddled with quirks, exceptions and work-arounds for buggy imaging machines. With all that, we still see images that are utterly broken and only openable in the original system. When doing the transfer over a network, it's often possible to negotiate down to explicit VR and Big-Endian uncompressed images which is required to be implemented and gets workable (if large, 500+MB for CT) images. With a CD/DVD, you're at the mercy of whatever syntax the creating device felt like using. If you include PET and similar, then you also need proprietary PET/CT or PET/MR fusion software to actually make use of the images.
Cshelton 11y ago
Wow. Thanks for sharing this, I know it can't be easy talking about it. It's things like this where people who can solve the problem just aren't aware of the problem. Connecting the two is the hardest thing in innovation. It is painful to know how many developers can solve this yet they spend their days on improving their laundry for your cat delivered to your door app. Nobody is at fault or to blame, I'm not saying that whatever they are working on is not important or wrong, but I think more awareness of these kind of things would make more developers, who are very much capable, want to create a solution. Note: I'm not putting any developers working on social/enterprise apps at fault or blaming, simply suggesting many of those developers would be more than willing to help out on solutions, they just aren't aware of the problem.
- baldfat 11y ago
  It isn't hard. I figure that till the day I die I will try to spread the news on the horrible research funding for kids is and to share my son's life. If anyone is intrested here is a few links. He had a bucket list and one of them was to write a comic book. When he passed the Comic Book Blogs honored him by sharing his story. http://www.unleashthefanboy.com/comics/inspirational-comic-writer-zachi-telesha-passes-away-at-age-12/53186 http://www.unleashthefanboy.com/comics/inspirational-comic-w... NPR made his obituary the obituary of the day. It actually wasn't something I knew about till weeks later and really made me glad to listen to. https://soundcloud.com/vocalo/obit-of-the-day-zachi-telesha https://soundcloud.com/vocalo/obit-of-the-day-zachi-telesha
hyperliner 11y ago
I am sorry for your loss. Really I have nothing else of value to add :-(
olieidel 11y ago
Sorry for your loss. I'd like to lend my technical and clinical experience in medical imaging to further clarify things. Firstly, most medical images are actually being saved in a standardized format (DICOM, as other people mentioned) and I suppose that was the case for your son's records, too. However, the devil lies in the details, which is reflected in your experience. While the images are saved as DICOMs, additional information (e.g. orientation of the image, patient data, etc.) can be saved to the DICOM meta-tags. There is some standardization as to which type of information to write into which meta-tag id, some manufacturers however have varying implementations of these standards. The result may be inconsistent meta-tag structure and naming. Example: Trying to determine the type of MRI sequence (= an imaging technique) including general physical parameters like TR and TE from the DICOM files. Every clinic may name the sequence differently. The parameters TR and TE may be in different DICOM tags, depending on the MRI manufacturer. For a correct assessment of any foreign MRI image, the physician should know the parameters (they usually have no idea). Secondly, regarding MRIs specifically, every clinic has a different so-called protocol for different diseases. A protocol consists of multiple sequences. Example: For Brain Tumors, clinic A might want to take an MRI with the sequences X and Y. Clinic B may additionally want to use sequence Z. Furthermore, clinic B uses different variations of sequences X and Y with different parameters (think TE and TR). The surgeons in clinic B are used to planning their surgery on those specific MRI sequences. So the exact situation from your experience happens: Even though a patient provides all the images from other clinics, he/she will have to get the imaging done all over again. Additionally, this introduces totally unnecessary costs to the health system and patient. This non-standardization in imaging sequences is hair-raising at least. And guess what, in my experience it's not even consistent within a given clinic within a specific disease. Thirdly, regarding your experience with DVDs, they actually do include the DICOM files (in some strangely named directory, usually). However, they also include a totally crappy portable image viewing program which usually runs as autostart.exe (malware may be easily introduced here, on a sidenote). This viewing program is often a down-specced, completely outdated version of the original imaging program at the clinic. Most doctors outside big clinics do not understand that it makes far more sense to extract the DICOMs into a good DICOM viewer (e.g. OsiriX) for further assessment. Only big clinics usually have some sort of IT department which extracts the DICOMs and loads them into their PACS. Reference: I did my doctors thesis (Germany) in MRI research and am nearly graduated from med school. Happy to finally contribute to HN :)

by baldfat 11y ago

RobertoG 11y ago

There is no doubt in my mind that the standardization and openness of formats, especially in medicine, should be mandatory. Somebody I know, that work in procurement for a big hospital, explained to me how the manufactures of equipment play with this (in software and hardware) in order to capture the market. It's negligence by our legislators allow this kind of thing (I hope is negligence and not greed). Sorry for your lost. I can't even imagine how this kind of experience feels.

deleted 11y ago
[deleted]

gozo 11y ago

I think it's too easy to blame proprietarism as such. It's a lack of universal sophistication in computer technology that makes designing systems living up to real medical concerns great efforts. When the "manufacturing techniques" of computer software is modernized, and enables more widespread implementation of these types of systems, proprietary formats simple won't be able to compete.

ThomPete 11y ago
That still means that proprietarism is a huge problem. I been through a melanoma I can attest to the absurdity.
- gozo 11y ago
  I would be interested in hearing why you think proprietarism is such a greater problem than, and just not a symptom of, the things I mentioned and how you would expect to fix that.
organsnyder 11y ago
We know how to do this. Plenty of other industries have solved this problem. It takes organizational will to make it a priority.
- gozo 11y ago
  That's not the point, the point is that the effort required makes it harder to innovate and that not only does that limit competition but it also enable proprietarism. In a perfect world you could just e-mail the data without any concerns of authenticity, privacy, robustness etc. But you can't, so you would have to bring in a huge firm that is going to spend a lot of money and effort getting everything right or at least certified. Of course with all that effort they now have a huge incentive to keep thing proprietary since they want to recuperate their cost and the large barrier to entry make it even more advantageous because there will be little competition. Innovation often requires COTS components to be available at a sufficient standard. No one would doubt this when it comes to something like AWS or how Tesla could make such a high level car in a relatively short time. Of course if you question the state of software you get downvoted into oblivion without reason on HN. And if it wasn't clear, these (proprietary) systems very much exists.

organsnyder 11y ago

So sorry for your loss. Thank you for sharing your experience. I work as a developer at a large-ish (>20,000 employees) healthcare system. Our CIO carries around a thick 2-inch binder from his infant son's medical treatments back in the mid-90's (his son died at around a year of age). The binder is meticulously organized and includes sections for various departments, complementary organizations (long-term care hospital, specialists, etc.), etc. It was their only way of coordinating care at that time. That experience led to the push in our system for electronic records back in the early 2000's, and we're continuing to pursue standardization and interoperability to make records accessible across departmental and organizational boundaries. To every healthcare organization—for/non-profit—that sees interop as a threat to your ability to sell licenses and fill beds, fuck you. Your customer's lives are much more important than your supposed competitive advantages—and, in the long term, the companies that share data will be the winners.

vog 11y ago

I'm shocked and also confused in reading this. Why? Because the standards are there! The ACR/NEMA standard dates back to 1985(!) and is nowadays known as DICOM. Here in Germany/Europe, the medical imaging systems as well as the archive systems (PACS) are designed to follow that standard. DICOM covers everything, from the exact flavour of lossless(!) image compression, to the metadata structure which covers fiels more than you ever need to describe the patient, up to the archiving of data. There are even Free Software / Open Source clients which do a great job in visualizing those datasets (OsiriX is a well known example). I thought that this is an international standard. How can any hospital afford to buy crap medical devices that don't care about such an important 30-year old standard? Did I get something wrong about DICOM?

CaptSpify 11y ago
Having worked with medical software, especially dicom: Where's the incentive? I absolutely agree it's ridiculous when they don't follow the standard, but the appeal of vendor lock-in is just too much. I don't know how to change that, unfortunately. The data flows down (Disclaimer: I am not an xray/mri/hospital tech in any way, and might be wrong): IME, there's not much "importing" of patient data into the medical devices, so there's no reason for vendors to play along. The data flows from the machine, to the dr/patient/whoever, so the vendor has the ability to dump it out in any format they want.
acveilleux 11y ago
Until the early 2000s, DICOM was often an expensive option. Especially in "single vendor" shops where all hardware was from $VENDOR. BTW, the euro player were also fond of this. Even with DICOM, not all encodings (either low-level, like value representations, or high-level like transfer syntaxes and image compression algorithms) are supported by all viewers/PACS. Finally, every system assign patients their own local ID and does their own local numbering/coding for precedure IDs and so on. This adds delays and work when loading foreign images into a PACS. I won't get into the bugs. I work in the field and I've seen some low-level DICOM handling functions riddled with quirks, exceptions and work-arounds for buggy imaging machines. With all that, we still see images that are utterly broken and only openable in the original system. When doing the transfer over a network, it's often possible to negotiate down to explicit VR and Big-Endian uncompressed images which is required to be implemented and gets workable (if large, 500+MB for CT) images. With a CD/DVD, you're at the mercy of whatever syntax the creating device felt like using. If you include PET and similar, then you also need proprietary PET/CT or PET/MR fusion software to actually make use of the images.

Cshelton 11y ago

Wow. Thanks for sharing this, I know it can't be easy talking about it. It's things like this where people who can solve the problem just aren't aware of the problem. Connecting the two is the hardest thing in innovation. It is painful to know how many developers can solve this yet they spend their days on improving their laundry for your cat delivered to your door app. Nobody is at fault or to blame, I'm not saying that whatever they are working on is not important or wrong, but I think more awareness of these kind of things would make more developers, who are very much capable, want to create a solution. Note: I'm not putting any developers working on social/enterprise apps at fault or blaming, simply suggesting many of those developers would be more than willing to help out on solutions, they just aren't aware of the problem.

baldfat 11y ago
It isn't hard. I figure that till the day I die I will try to spread the news on the horrible research funding for kids is and to share my son's life. If anyone is intrested here is a few links. He had a bucket list and one of them was to write a comic book. When he passed the Comic Book Blogs honored him by sharing his story. http://www.unleashthefanboy.com/comics/inspirational-comic-writer-zachi-telesha-passes-away-at-age-12/53186 http://www.unleashthefanboy.com/comics/inspirational-comic-w... NPR made his obituary the obituary of the day. It actually wasn't something I knew about till weeks later and really made me glad to listen to. https://soundcloud.com/vocalo/obit-of-the-day-zachi-telesha https://soundcloud.com/vocalo/obit-of-the-day-zachi-telesha

hyperliner 11y ago

I am sorry for your loss. Really I have nothing else of value to add :-(

olieidel 11y ago

Sorry for your loss. I'd like to lend my technical and clinical experience in medical imaging to further clarify things. Firstly, most medical images are actually being saved in a standardized format (DICOM, as other people mentioned) and I suppose that was the case for your son's records, too. However, the devil lies in the details, which is reflected in your experience. While the images are saved as DICOMs, additional information (e.g. orientation of the image, patient data, etc.) can be saved to the DICOM meta-tags. There is some standardization as to which type of information to write into which meta-tag id, some manufacturers however have varying implementations of these standards. The result may be inconsistent meta-tag structure and naming. Example: Trying to determine the type of MRI sequence (= an imaging technique) including general physical parameters like TR and TE from the DICOM files. Every clinic may name the sequence differently. The parameters TR and TE may be in different DICOM tags, depending on the MRI manufacturer. For a correct assessment of any foreign MRI image, the physician should know the parameters (they usually have no idea). Secondly, regarding MRIs specifically, every clinic has a different so-called protocol for different diseases. A protocol consists of multiple sequences. Example: For Brain Tumors, clinic A might want to take an MRI with the sequences X and Y. Clinic B may additionally want to use sequence Z. Furthermore, clinic B uses different variations of sequences X and Y with different parameters (think TE and TR). The surgeons in clinic B are used to planning their surgery on those specific MRI sequences. So the exact situation from your experience happens: Even though a patient provides all the images from other clinics, he/she will have to get the imaging done all over again. Additionally, this introduces totally unnecessary costs to the health system and patient. This non-standardization in imaging sequences is hair-raising at least. And guess what, in my experience it's not even consistent within a given clinic within a specific disease. Thirdly, regarding your experience with DVDs, they actually do include the DICOM files (in some strangely named directory, usually). However, they also include a totally crappy portable image viewing program which usually runs as autostart.exe (malware may be easily introduced here, on a sidenote). This viewing program is often a down-specced, completely outdated version of the original imaging program at the clinic. Most doctors outside big clinics do not understand that it makes far more sense to extract the DICOMs into a good DICOM viewer (e.g. OsiriX) for further assessment. Only big clinics usually have some sort of IT department which extracts the DICOMs and loads them into their PACS. Reference: I did my doctors thesis (Germany) in MRI research and am nearly graduated from med school. Happy to finally contribute to HN :)