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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?

#2
I know it's not the same, but in many areas we have this "follow the arrows" system in many guidelines. For some examples, see the EULAR guidelines with it's fluxograms for treatments and also AO Surgery Reference with a graphical approach to select treatments based on fracture pattern, avaliable materials and skill set.

I think that's a logical and necessary step to join medical reasoning and computer helpers, we need easier access to new information and more importantly to present clinical relevant facts from the literature in a way that helps actual patient care decision making.

I'm just not too sure we can have generic approaches to all specialties, but it’s nice seeing efforts in this area.

Re: Why are cancer guidelines stuck in PDFs?

#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.

Currently, this is best approached by publishing systematic reviews according to the Cochrane Criteria [0]. Such reviews are quite labour-intensive and done all too rarely, but are very valuable when done.

One aspect of such reviews, when done, is how often they discard published studies for reasons such as bias, incomplete datasets, and so forth.

The approach described by Geiger in the link is commendable for its intentions but the outcome will be faced with the same problem that manual systematic reviews face.

I wonder if the author considered included rules-based approaches (e.g. Cochrane guidelines) in addition to machine learning approaches?

[0] https://training.cochrane.org/handbook

Re: Why are cancer guidelines stuck in PDFs?

#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.

Re: Why are cancer guidelines stuck in PDFs?

#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, things are written entirely in natural language rather than some kind of data structure. Anyone who's worked in healthcare software can tell you way more horror stories.

I do hope that LLMs can help straighten some of it out but anyone whos done healthcare software, the problems are not technical, they are quite human.

That being said one bright spot is we've (my colleagues, not me) made a huge step forward using category theory and Prolog to discover the provably optimal 3+3 clinical oncology dose escalation trial protocol[1]. David gave a great presentation on it at the Scryer Prolog meetup[2] in Vienna.

It's kind of amazing how in the dark ages we are with medicine. Even though this is the first EXECUTABLE/PROGRAMMABLE SPEC for a 3+3 cancer trial, he is still fighting to convince his medical colleagues and hospital administrators that this is the optimal trial because -- surprise -- they don't speak software (or statistics).

[1]: https://arxiv.org/abs/2402.08334

[2]: https://www.digitalaustria.gv.at/eng/insights/Digital-Austri...

Re: Why are cancer guidelines stuck in PDFs?

#6
Decision trees work for making decisions...

But they don't work as well as other decisionmaking techniques... Random forests, linear models, neural nets, etc. are all decision making techniques at their core.

And decision trees perform poorly for complex systems where lots of data exists - ie. human health.

So why are we using a known-inferior technique simply because it's easier to write down in a PDF file, reason about in a meeting, or explain to someone?

Shouldn't we be using the most advanced mathematical models possible with the highest 'cure' probability, even if they're so complex no human can understand them?

Re: Why are cancer guidelines stuck in PDFs?

#7
I parsed some mind maps that were constructed with a tool and exported as pdfs (original sources were lost a long time ago) and I used python with tesseract for the text and opencv and it worked alright. I am curious why the author went with LLMs, but I guess with the mentioned amount of data it wasn't hard to recheck everything later.

Re: Why are cancer guidelines stuck in PDFs?

#9

> The whole set of guidelines for a type of cancer breaks down into a few disjointed directed graphs Nothing undermines medicine quite so thoroughly as yet another astronaut trying to force it into a data structure.

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.

Re: Why are cancer guidelines stuck in PDFs?

#10
The real problem is that the guidelines are written for humans in the first place. Workarounds like this shouldn't be needed, to go from a machine friendly layout to a human friendly one is usually quite easy.

And from what he says a decision tree isn't really the right model in the first place. What about no tree, just a heap of records in a SQL database. You do a query on the known parameters, if the response comes back with only one item in the treatment column you follow it. If it comes back with multiple items you look at what would be needed to distinguish them and do the test(s).

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