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Why are cancer guidelines stuck in PDFs?

seangeiger.substack.com

11–20 of 163 posts

Re: Why are cancer guidelines stuck in PDFs?

#11
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.

The author is proposing that the DAG representation be in addition to the PDF:

>The organizations drafting guidelines should release them in structured, machine-interpretable formats in addition to the downloadable PDFs.

My opinion: Ideally the PDF could be generated from the underlying DAG -- that would give you confidence that everything in the PDF has been captured in the DAG.

Re: Why are cancer guidelines stuck in PDFs?

#12
post #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.

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?

Re: Why are cancer guidelines stuck in PDFs?

#13

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 a…

Models too complex for humans to understand don't, in practice, have a high 'cure' probability.

Re: Why are cancer guidelines stuck in PDFs?

#14
Forgive me if I'm mistaken, but isn't this exactly what the FHIR standard is meant to address? Not only does it enable global inter-health communication using a standardized resource, but it's already adopted in several national health services, including (but not broadly), America. Is this not simply a reimplementation, but without the broad iterations of HL7?

Re: Why are cancer guidelines stuck in PDFs?

#16
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.

The author is proposing that the DAG representation be in addition to the PDF: >The organizations drafting guidelines should release them in structured, machine-interpretable formats in addition to the downloadable PDFs. My opinion: Ideally the PDF could be generated from the underlying DAG -- that would give you confidence that everything in the PDF has been captured in the DAG.

You could generate the document from the graph and then attach it as data.

Re: Why are cancer guidelines stuck in PDFs?

#17

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 a…

Dinner generation is usually based on decision tree models as well, so they match the resolution of the available data.

The practice of real world medicine often interpolates between these data points.

Re: Why are cancer guidelines stuck in PDFs?

#19

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 a…

> complex systems where lots of data exists

Not a lot of high quality data exists for human health. Clinical guidelines for many diseases are built around surprisingly scant evidence many times.

> even if they're so complex no human can understand them?

That’ll be wonderful to explain in court when they figure out it was just data smuggling or whatever other bias.

Re: Why are cancer guidelines stuck in PDFs?

#20
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.

Exactly. The PDF's work. They won't break. You can see all the information with your own eyes. You can send them by e-mail.

A wizard-type system hides most of the information from you, it might have bugs you aren't aware of, if you want to glance at an alternative path you can't, it's going to be locked into registered users, the system can go down.

I think much more intelligent computer systems are the future in health care, but I doubt the way to start is with yet another custom tool designed specifically for cancer guidelines and nothing else.

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