In the UK guidelines are published by the National Institute for Clinical Excellence. Guidance is available to all in html and pdf formats.[0]
Why are cancer guidelines stuck in PDFs?
121–130 of 163 posts
Re: Why are cancer guidelines stuck in PDFs?
#122"At their core, guidelines are decision trees"
That's wishful and perhaps not even helpful as a goal. Guidelines rarely have the data to cover all possible legs of decisions. They report on well-supported findings, offer expert opinions on some interpolated cases, and perhaps list factors to consider for some of the remainder. If you reduced this to a decision tree, you'd find many branches are not covered, and most experts could identify factors that should lead to a more complex tree.
The reason is that branches are rarely definitive. It's more like quantum probabilities: you have to hold them all at once, and only when treatment works or doesn't does the disease (here cancer) declare itself as such.
Until the true information architecture of guidelines is captured, they will be conveyed as authoritative and educational statements of the standard of care.
In almost all cases, it's more important to reduce latency and increase transparency (i.e, publish faster but with references) than to simplify or operationalize in order to improve uptake. Most doctors in dynamic fields don't need the simplification; they rely on life-long self-discipline and diligence to overcome difficulty in the material, and use guidelines at most as a framework for communication and completion, i.e., for knowing when they're addressed known concerns.
Structured guidelines mainly enable outsiders to observe and control in ways that are likely to be unproductive.
Re: Why are cancer guidelines stuck in PDFs?
#123The idea of adding hallucination to medical advice seems very dangerous.
There’s also a regression-to-the-mean problem, the systems really shouldn’t optimize just for the easier cases. I wonder if that’s a direct tradeoff, I think maybe it is with the kinds of things I see used to tweak out hallucinations.
Re: Why are cancer guidelines stuck in PDFs?
#124Earlier quoted context omitted.
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 he…
> The PDF's work. They won't break. Not just that, PDFs are one of the few formats, where i'm willing to bet my own money, that they'll still work in 10 or 20 years. Even basic html has changed, layouts look different depending on many factors, and even the -ing doesn't work anymore.
Sure, PDF/A is an ISO-standardized subset of the larger PDF spec designed expressly for archival purposes. You could do that with HTML but then how would you get your crypto mining AI chat bot powered by WASM to work?
Re: Why are cancer guidelines stuck in PDFs?
#125WAIT ... Hole up... what have we here: https://www.nccn.org/compendia-templates/compendia/nccn-comp... TLDR: The NCCN surely has a clean pretty database of these algorithms. They output these junky pdfs for free. Want cleaner "templates" data? Pay the toll please. What we have here is a walled garden. Want the treatment algorithm? Here muck through this huge disaster of 999 page pdfs. Oh you want the underlying data?…
OP is talking about the NCCN Guidelines, which doesn't seem to be available in other formats or API. From their website:
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®): The NCCN Guidelines® document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes.
Format(s) Available for Licensing: PDF API not available
Re: Why are cancer guidelines stuck in PDFs?
#126The FHIR clinical reasoning specs provide machine-oriented formats to talk about diagnostic flows. But the actual science is going to be PDFs for a while, and translating them into machine-friendly formats is going to be extra work for years and years.
Re: Why are cancer guidelines stuck in PDFs?
#127Why isn't all human knowledge in one big JSON file? Guidelines are decision trees, but they're not written to be applied by rote, because the identical patients with identical cancers posited in the hypothetical don't exist . The guidelines are not written for maverick clinician movie protagonists to navigate the decision tree in real time while racing against an oncological clock, they're for teams of clinicians who…
Because JSON is fucking horrible for humans?
If there's anything I want to read it's searchable paper.
Re: Why are cancer guidelines stuck in PDFs?
#128Earlier quoted context omitted.
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.
Yeah I know what you meant, I agree, it's awful.
Re: Why are cancer guidelines stuck in PDFs?
#129The real question is: why is everything stuck in PDFs, and the more important meta-question is: why don't PDFs support meta-data (they do, somewhat). So much of what we do is essentially machine-to-machine, but trapped in a format designed entirely for human-to-human (also lump in a bit of machine-to-human). Adobe has had literally a third of a century to recognize this need and address it. I don't think they're payi…
PDFs can have arbitrary files embedded, like XML and JSON. It also supports a logical structure tree (which doesn’t need to correspond to the visual structure) which can carry arbitrary attributes (data) on its structure elements. And then there’s XML Forms. You can really have pretty much anything machine-processable you want in a PDF. One could argue that it is too flexible, because any design you can come up with…
Nice! I looked for meta data and found only an anemic thing, but embedding a whole file with structured data makes perfect sense.
But of course this only pushes the responsibility back a step: why the heck isn’t Adobe pushing developers to include structured data in their output?
Every time you “Save as PDF” there should be a checkbox defaulted on to “Save Data to PDF”.
They’re already done the first thing; why not do the second thing to make everyone’s life easier?
Re: Why are cancer guidelines stuck in PDFs?
#130Earlier quoted context omitted.
PDFs can have arbitrary files embedded, like XML and JSON. It also supports a logical structure tree (which doesn’t need to correspond to the visual structure) which can carry arbitrary attributes (data) on its structure elements. And then there’s XML Forms. You can really have pretty much anything machine-processable you want in a PDF. One could argue that it is too flexible, because any design you can come up with…
Nice! I looked for meta data and found only an anemic thing, but embedding a whole file with structured data makes perfect sense. But of course this only pushes the responsibility back a step: why the heck isn’t Adobe pushing developers to include structured data in their output? Every time you “Save as PDF” there should be a checkbox defaulted on to “Save Data to PDF”. They’re already done the first thing; why not d…
Adobe wants you to purchase Acrobat to be able to do that. Their strategy is to give you Reader for free, but for authoring they want you to buy their software. However there’s also third-party PDF software one can use for that. And apparently Google Drive supports it too: https://www.wikihow.com/Attach-a-File-to-a-PDF-Document