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Why are cancer guidelines stuck in PDFs?

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Re: Why are cancer guidelines stuck in PDFs?

#71

Post by PoignardAzur »

TheAceOfHearts wrote: post #59
PoignardAzur wrote: post #55

Earlier quoted context omitted.

I mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?

How about fixing the format? Something that is obviously broken and resulting in patient deaths should really be considered a top priority. It's either malice or masskve incompetence. If these protocols were open there would definitely be volunteers willing to help fix it.

You seem to think that the default assumption is that fixing the format is easy/feasible, and I don't see why. Do you have domain knowledge pointing that way?

It's a truism in machine learning that curating and massaging your dataset is the most labor-intensive and error-prone part of any project. I don't why that would stop being true in healthcare just because lives are on the line.

Re: Why are cancer guidelines stuck in PDFs?

#72

Post by fl0id »

zo1 wrote: post #61
killjoywashere wrote: post #34

Earlier quoted context omitted.

The cancer reporting protocols from the College of American Pathologists are available in structured format (1). No major laboratory information system vendor properly implements them, properly, and their implementation errors cause some not-insignificant problems with patient care (oncologists calling the lab asking for clarification, etc). This has pushed labs to make policies disallowing the use of those modules a…

People could potentially properly implement them if they were open and available: "Contact the CAP for more information about licensing and using the CAP electronic Cancer Protocols for cancer reporting at your institution." This stinks of the same gate-keeping that places like NIST and ISO do, charging you for access to their "standards".

For liability reasons alone, you cannot just have random people working on health/lab stuff and the requisite vendors have access to these standards.

Re: Why are cancer guidelines stuck in PDFs?

#73

Post by fl0id »

breytex wrote: post #70

Shouldn't the end goal be just to train an ai on all the pdfs and give the doctors an interface to plug in all the details and get a treatment plan generated by that ai? Working on the data structure feels like an intermediate solution on the way to that ai which is not really necessary. Or am I missing something?

Your end goal maybe. Not patients or doctors goal for sure.

Re: Why are cancer guidelines stuck in PDFs?

#74

Post by pjc50 »

breytex wrote: post #70

Shouldn't the end goal be just to train an ai on all the pdfs and give the doctors an interface to plug in all the details and get a treatment plan generated by that ai? Working on the data structure feels like an intermediate solution on the way to that ai which is not really necessary. Or am I missing something?

How does your treatment AI get its liability insurance?

Re: Why are cancer guidelines stuck in PDFs?

#75

Post by prmoustache »

breytex wrote: post #70

Shouldn't the end goal be just to train an ai on all the pdfs and give the doctors an interface to plug in all the details and get a treatment plan generated by that ai? Working on the data structure feels like an intermediate solution on the way to that ai which is not really necessary. Or am I missing something?

I am not sure patients and doctors are interested in adding hallucination generators to the list of their problems.

Re: Why are cancer guidelines stuck in PDFs?

#77

Post by prepend »

johnisgood wrote: post #12
prepend wrote: post #9

Earlier quoted context omitted.

Comically, I worked in this space and initially tried to get decision support working with data structures and code sets and such. I ended up only really contributed adding version numbers to the pdf. So at least people knew they had the latest and same versions. And that took a year, to get versions added to guideline pdfs.

That is wild, one would think versioning is extremely important. They tend to just put the timestamp in the filename (sometimes), which I guess is better than nothing. Don't signed PDFs include a timestamp, however?

Getting in the file name was kind of easy. But I meant adding it visually in the pdf guidance so readers could tell. Just numbers in the lower left corner. Or maybe right.

The guideline was available via url so the filename couldn’t change.

Re: Why are cancer guidelines stuck in PDFs?

#78

Post by prepend »

slaucon wrote: post #21
prepend wrote: post #4

I’d rather have the pdf than a custom tool. Especially considering the tool will be unique to the practice or emr. And likely expensive to maintain. PDFs suck in many ways but are durable and portable. If I work with two oncologists, I use the same pdf. The author means well but his solution will likely be worse because only he will understand it. And there’s a million edge cases.

Hey author here! Appreciate the feedback! Agreed on importance of portability and durability. I'm not trying to build this out or sell it as a tool to providers. Just wanted to demo what you could do with structured guidelines. I don't think there's any reason this would have to be unique to a practice or emr. As sister comments mentioned, I think the ideal case here would be if the guideline institutions released th…

I believe you have good intentions, but someone would need to build it out and sell it. And it requires lots of maintenance. It’s too boring for an open source community.

There’s a whole industry that attempts to do what you do and there’s a reason why protocols keep getting punted back to pdf.

I agree it would be great to release structured representations. But I don’t think there’s a standard for that representation, so it’s kind of tricky as who will develop and maintain the data standard.

I worked on a decision support protocol for Ebola and it was really hard to get code sets released in Excel. Not to mention the actual decision gates in a way that is computable.

I hope we make progress on this, but I think the incentives are off for the work to make the data structures necessary.

Re: Why are cancer guidelines stuck in PDFs?

#79

Post by prepend »

zo1 wrote: post #61
killjoywashere wrote: post #34

Earlier quoted context omitted.

The cancer reporting protocols from the College of American Pathologists are available in structured format (1). No major laboratory information system vendor properly implements them, properly, and their implementation errors cause some not-insignificant problems with patient care (oncologists calling the lab asking for clarification, etc). This has pushed labs to make policies disallowing the use of those modules a…

People could potentially properly implement them if they were open and available: "Contact the CAP for more information about licensing and using the CAP electronic Cancer Protocols for cancer reporting at your institution." This stinks of the same gate-keeping that places like NIST and ISO do, charging you for access to their "standards".

Aren’t all NIST standards free as they are a government body?

Re: Why are cancer guidelines stuck in PDFs?

#80

Post by prepend »

TheAceOfHearts wrote: post #59
PoignardAzur wrote: post #55

Earlier quoted context omitted.

I mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?

How about fixing the format? Something that is obviously broken and resulting in patient deaths should really be considered a top priority. It's either malice or masskve incompetence. If these protocols were open there would definitely be volunteers willing to help fix it.

I think there are more options than malice or incompetence. My theory is difficulty.

There’s multiple countries with socialized medicine and no profit motive and it’s still not solved.

I think it’s just really complex with high negative consequences from a mistake. It takes lots of investment with good coordination to solve and there’s an “easy workaround” with pdfs that distributes liability to practitioners.

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