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.
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.
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...
"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".
Can you expand on this?
That's basically medical information system vendors.
The fact that the US hasn't pushed open source EMRs through CMS is insane. It's literally the perfect problem for an open solution.
I know OpenMRS exists but is mainly used within developing nations.
The US has Vista, made by VA, and it is a beast and no one really wants to use it.
EMR software seems like something that shouldn't be that hard. It's fundamentally a CRUD. Sure, there's a lot of legacy to interface with, but medical software seems like a deeply dysfunctional and probably corrupt industry.
Estonia's from-scratch system was reportedly about 10 million euros.
It's not insane, it's because the US is an oligarchy. And it's about to go even more oligarchy on steroids in the next year.
Is Sweden an oligarchy, too? Or France? Etc etc
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.
It's a truism in machine learning that curating and massaging your dataset is the most labor-intensive and error-prone part of any project. I don't why that would stop being true in healthcare just because lives are on the line.
There’s multiple countries with socialized medicine and no profit motive and it’s still not solved.
I think it’s just really complex with high negative consequences from a mistake. It takes lots of investment with good coordination to solve and there’s an “easy workaround” with pdfs that distributes liability to practitioners.
Layering any sort of data standard into that environment (and evolving it in a timely manner!) is nigh impossible without an external impetus forcing action (read: government payer mandate).
Eventually the question will be, how far do we really need to go, i.e. how much profit do we allow ourselves before it's morally untenable and we should plow it back into R&D? Unfortunately, as long as health care is for-profit, and absent effective regulation, companies will always err on the side of profit.
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.
Modern PDF supports font embedding of various kinds (legality is left as an exercise to the PDF author) and supports 14 standard font faces which can be specified for compatibility, though more often document authors probably assume a system font is available or embed one.
There are still problems with the format as it foremost focuses on document display rather than document structure or intent, and accessibility support in documents is often rare to non-existent outside of government use cases or maybe Word and the like.
A lot of usability improvements come from clients that make an attempt to parse the PDF to make the format appear smarter. macOS Preview can figure out where columns begin and end for natural text selection, Acrobat routinely generates an accessible version of a document after opening it, including some table detection. Honestly creative interpretation of PDF documents is possibly one of the best use cases of AI that I’ve ever heard of.
While a lot about PDF has changed over the years the basic standard was created to optimize for printing. It’s as if we started with GIF and added support to build interactive websites from GIFs. At its core, a PDF is just a representation of shapes on a page, and we added metadata that would hopefully identify glyphs, accessible alternative content, and smarter text/line selection, but it can fall apart if the PDF author is careless, malicious or didn’t expect certain content. It probably inherits all the weirdness of Unicode and then some, for example.
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.
>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.
Much easier for doctors to draft PDFs than graphs.
Community oncologists have limited technology resources as compared to a national cancer center. If we can make their lives easier, it can only be a good thing.
That said, I like published documents like PDFs - systems usually make it hard to conii ok are the June release from the September release.
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.
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 <blink>-ing doesn't work anymore.
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.
Do you think this is a completely fabricated non-explanation? It's not like the link says "the worst places use these custom tools."