Why are cancer guidelines stuck in PDFs?

Go to a clinical cancer conference and you will see the grim reality of 10,000s of people contributing to the knowledge discovery process with their cancer care. There is an inverse relationship between the number of people in a trial and the amount of risk that goes into that trial, but it is still a massive amount of data that needs to be codified into some sensible system, and it's hard enough for a person to do it.

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

What do you mean by this? I'm not aware of any data smuggling that has ever happened in a clinical trial. The "bias" is that any research hypothesis comes from the fundamentally biased position of "I think the data is telling me this" but I've seen very little bias of truly bad hypotheses in cancer research like those that have dominated, say Alzheimer's research. Any research malfeasance should be prosecuted to the fullest, but I don't think cancer research has much of it. This was a huge scandal, but I don't think it pointed to much in the way of bad research in the end:

https://www.propublica.org/article/doctor-jose-baselga-cance...

I hate, hate, hate, hate, hate the practice of using PDFs as a system of record. They are intended to be a print format for ensuring consistent typesetting and formatting. For that, I have no quarrel. But so much of the world economy is based on taking text, docx (XML), spreadsheets, or even CSV files, rendering them out as PDFs, and then emailing them around or storing them in databases. They've gone from being simply a view layer to infecting the model layer.

PDFs are a step better than passing around screenshots of text as images - when they don't literally consist of a single image, that is. But even for reasonably-well-behaved, mostly-text PDFs, finding things like "headers" and "sections" in the average case is dependent on a huge pile of heuristics about spacing and font size conventions. None of that semantic structure exists, it's just individual characters with X-Y coordinates. (My favorite thing to do with people starting to work with PDFs is to tell them that the files don't usually contain any whitespace characters, and then watch the horror slowly dawn as they contemplate the implications.) (And yes, I know that PDF/A theoretically exists, but it's not reliably used, and certainly won't exist on any file produced more than a couple years ago.)

Now, with multi-modal LLMs and OCR reaching near-human levels, we can finally... attempt to infer structured data back out from them. So many megawatt-hours wasted in undoing what was just done. Structure to unstructure to structure again. Why, why, why.

As for universality... I mean, sure, they're better than some proprietary format that can only be decrypted or parsed by one old rickety piece of software that has to run in Win95 compatibility mode. But they're not better than JSON or XML if the source of truth is structured, and they're not better than Markdown or - again - XML if the source is mostly text. And there are always warts that aren't fully supported depending on your viewer.

I didn't see anything in the screenshots presented that wouldn't be doable in a single HTML file containing the data, styles and scripts?

This is a countercultural idea but it fits so many use cases; it's a tragedy we don't do this more often. The two options are either PDF or SaaS.