[slaucon]

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.

[killjoywashere]

The cancer reporting protocols from the College of American Pathologists are available in structured format (1). No major laboratory information system vendor properly implements them, properly, and their implementation errors cause some not-insignificant problems with patient care (oncologists calling the lab asking for clarification, etc). This has pushed labs to make policies disallowing the use of those modules and individual pathologists reverting to their own non-portable templates in Word documents.

The medical information systems vendors are right up there with health insurance companies in terms of their investment in ensuring patient deaths. Ensuring. With an E.

(1) https://www.cap.org/protocols-and-guidelines/electronic-canc...

[zo1]

People could potentially properly implement them if they were open and available:

"Contact the CAP for more information about licensing and using the CAP electronic Cancer Protocols for cancer reporting at your institution."

This stinks of the same gate-keeping that places like NIST and ISO do, charging you for access to their "standards".

[all2]

> The medical information systems vendors are right up there with health insurance companies in terms of their investment in ensuring patient deaths. Ensuring. With an E.

Can you expand on this?

[jjmarr]

It doesn't look like the XML data is freely accessible.

If I could get access to this data as a random student on the internet, I'd love to create an open source tool that generates an interactive visualization.

[PoignardAzur]

I mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?

[Dalewyn]

>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.

[abtinf]

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.

[prepend]

I believe you have good intentions, but someone would need to build it out and sell it. And it requires lots of maintenance. It’s too boring for an open source community.

There’s a whole industry that attempts to do what you do and there’s a reason why protocols keep getting punted back to pdf.

I agree it would be great to release structured representations. But I don’t think there’s a standard for that representation, so it’s kind of tricky as who will develop and maintain the data standard.

I worked on a decision support protocol for Ebola and it was really hard to get code sets released in Excel. Not to mention the actual decision gates in a way that is computable.

I hope we make progress on this, but I think the incentives are off for the work to make the data structures necessary.