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Why are cancer guidelines stuck in PDFs?

seangeiger.substack.com

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Re: Why are cancer guidelines stuck in PDFs?

#21

Post by slaucon »

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 the structured representations of the guidelines along with the PDF versions. They could use a tool to draft them that could export in both formats. Oncologists could use the PDFs still, and systems could lean into the structured data.

Re: Why are cancer guidelines stuck in PDFs?

#22

Post by KPGv2 »

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.

You say this, but on the other hand, the author alleges that the places that use these custom tools achieve better outcomes. You didn't address this point one way or the other.

Do you think this is a completely fabricated non-explanation? It's not like the link says "the worst places use these custom tools."

Re: Why are cancer guidelines stuck in PDFs?

#24

Post by slaucon »

pcrh wrote: post #3

The fundamental idea here is that doctors find it difficult to ensure that their recommendations are actually up-to-date with the latest clinical research. Further, that by virtue of being at the centre of action in research, doctors in prestige medical centres have an advantage that could be available to all doctors. It's a pretty important point, sometimes referred to as the dissemination of knowledge problem. Curr…

Hey author here--Cochrane reviews are great.

NCCN guidelines and Cochrane Reviews serve complementary roles in medicine - NCCN provides practical, frequently updated cancer treatment algorithms based on both research and expert consensus, while Cochrane Reviews offer rigorous systematic analyses of research evidence across all medical fields with a stronger focus on randomized controlled trials. The NCCN guidelines tend to be more immediately applicable in clinical practice, while Cochrane Reviews provide a deeper analysis of the underlying evidence quality.

My main goal here was to show what you could do with any set of medical guidelines that was properly structured. You can choose any criteria you want.

Re: Why are cancer guidelines stuck in PDFs?

#25

Post by slaucon »

upghost wrote: post #5

It's so much worse than you could possibly imagine. I worked for a healthcare startup working on patient enrollment for clinical oncology trials. The challenges are amazing. Quite frankly it wouldn't matter if the data were in plaintext. The diagnostic codes vary between providers, the semantic understanding of the diagnostic information has different meanings between providers, electronic health records are a mess,…

This is a fascinating idea!

Re: Why are cancer guidelines stuck in PDFs?

#26

Post by sebmellen »

upghost wrote: post #5

It's so much worse than you could possibly imagine. I worked for a healthcare startup working on patient enrollment for clinical oncology trials. The challenges are amazing. Quite frankly it wouldn't matter if the data were in plaintext. The diagnostic codes vary between providers, the semantic understanding of the diagnostic information has different meanings between providers, electronic health records are a mess,…

Have you read Jake Seliger’s pieces on oncology clinical trials https://jakeseliger.com/.

Re: Why are cancer guidelines stuck in PDFs?

#27

Post by tdeck »

GraphViz has some useful graph schema languages that could be reused for something like this. There's DOT, a delightful DSL, and some kind of JSON format as well. You can then generate a bunch of different output formats and it will lay out the nodes for you.

Re: Why are cancer guidelines stuck in PDFs?

#28

Post by Dalewyn »

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…

>Agreed on importance of portability and durability.

I think "importance" is understating it, because permanent consistency is practically the only reason we all (still) use PDFs in quite literally every professional environment as a lowest common denominator industrial standard.

PDFs will always render the same, whether on paper or a screen of any size connected to a computer of any configuration. PDFs will almost always open and work given Adobe Reader, which these days is simply embedded in Chrome.

PDFs will almost certainly Just Work(tm), and Just Working(tm) is a god damn virtue in the professional world because time is money and nobody wants to be embarrassed handing out unusable documents.

Re: Why are cancer guidelines stuck in PDFs?

#29

Post by abtinf »

Dalewyn wrote: post #28
slaucon wrote: post #21

Earlier quoted context omitted.

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…

>Agreed on importance of portability and durability. I think "importance" is understating it, because permanent consistency is practically the only reason we all (still) use PDFs in quite literally every professional environment as a lowest common denominator industrial standard. PDFs will always render the same, whether on paper or a screen of any size connected to a computer of any configuration. PDFs will almost a…

PDFs generally will look close enough to the original intent that they will almost always be usable, but will not always render the same. If nothing else, there are seemingly endless font issues.

Re: Why are cancer guidelines stuck in PDFs?

#30

Post by upghost »

sebmellen wrote: post #26
upghost wrote: post #5

It's so much worse than you could possibly imagine. I worked for a healthcare startup working on patient enrollment for clinical oncology trials. The challenges are amazing. Quite frankly it wouldn't matter if the data were in plaintext. The diagnostic codes vary between providers, the semantic understanding of the diagnostic information has different meanings between providers, electronic health records are a mess,…

Have you read Jake Seliger’s pieces on oncology clinical trials https://jakeseliger.com/ .

Oh wow. No, that's heart breaking. I'll have to read up on this. Reminds me of David explaining the interesting and somewhat surprisingly insensitive language the oncology literature uses towards folks going through this. Its there for historical reasons but slow to change.

It also shows how important getting dose escalation trials are. The whole point is finding the balance point where "cure is NOT worse than the disease". A bad dose can be worse than the cancer itself, and conducting the trials correctly is extremely important... and this really underscores the human cost. Truly heartbreaking :(

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