This is all predicated on the guidelines actually reflecting best practices
Why are cancer guidelines stuck in PDFs?
31–40 of 163 posts
Re: Why are cancer guidelines stuck in PDFs?
#32PDFs are a universal, machine readable format.
They’re only machine-readable in the very weak sense that all computer files are machine-readable.
Re: Why are cancer guidelines stuck in PDFs?
#33I’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.
Totally valid concerns. If you have time, I would like to show you my solution to get your thoughts as I believe I have found ways to mitigate all of your concerns.
Currently I am using STCC (Schmitt-Thompson Clinical Content). I Have sent you some of the PDF's we use for testing.
Re: Why are cancer guidelines stuck in PDFs?
#34I’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.
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 th…
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...
Re: Why are cancer guidelines stuck in PDFs?
#35Earlier quoted context omitted.
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 th…
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 a…
> 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?
Re: Why are cancer guidelines stuck in PDFs?
#36I’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.
It would, I imagine, be much easier to generate a PDF from the tool's internal flowchart representation than the other way around.
Re: Why are cancer guidelines stuck in PDFs?
#37Earlier quoted context omitted.
>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 a…
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.
In this day and age that seems increasingly like a solved problem to most end users, often a client-side issue or using a very old method of generating a PDF?
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.
Re: Why are cancer guidelines stuck in PDFs?
#38The fundamental idea here is that doctors find it difficult to ensure that their recommendations are actually up-to-date with the latest clinical research. Further, that by virtue of being at the centre of action in research, doctors in prestige medical centres have an advantage that could be available to all doctors. It's a pretty important point, sometimes referred to as the dissemination of knowledge problem. Curr…
> doctors find it difficult to ensure that their recommendations are actually up-to-date with the latest clinical research
Doctors care about as much this as software engineers care about the latest computer science research. A few curious ones do. But the general attitude is they already did tough years of school so they don’t have to anymore.
Re: Why are cancer guidelines stuck in PDFs?
#39> With properly structured data, machines should be able to interpret the guidelines. Charting systems could automatically suggesting diagnostic tests for a patient. Alarm bells and "Are you sure?" modals could pop up when a course of treatment diverges from the guidelines. And when a doctor needs to review the guidelines, there should be a much faster and more natural way than finding PDFs
I have implemented this computerized process twice at two different startups over the past decade.
I would not want the NCCN to do it.
The NCCN guidelines are not stuck in PDFs, they are stuck in the heads of doctors.
Once the NCCN guidelines get put into computerized rules, they start to be guided by those computerized rules, a second influence that takes them away from the fundamental science.
So while I totally agree that there should be systemtticization of the rules, it should be entirely secondary and subservient to the best frontier knowledge about cancer, which changes extremely frequently. Annually after every ASCO (major pan-cancer conference) and every disease specific conference (e.g. the San Antonio breast cancer conference), and occasionally during the year when landmark clinical trials are published the doctors need to update their knowledge from the latest trials and their continuing medical education, which is entire body of knowledge that is complementary to the edges of what the NCCN publishes.
Having spanned both computer science and medicine for my entire career, I trust doctors to be able to update their rules far faster than the programmers and databases.
Please do not get the NCCN guidelines stuck in spaghetti code that a few programmers understand, rather than open in PDFs with lots of links that anybody can go and chase after.
Edit: though give me a week digesting this article and I may change my mind. Maybe the NCCN should be standardizing clinical variables enough such that the rules can trivially be turned into rules. That would require that the hypotheses that a clinical trial fits into those rules however, and that's why I need a week of digestion to see if it may even be possible...
Re: Why are cancer guidelines stuck in PDFs?
#40GraphViz has some useful graph schema languages that could be reused for something like this. There's DOT, a delightful DSL, and some kind of JSON format as well. You can then generate a bunch of different output formats and it will lay out the nodes for you.
Of all the challenges with this, graph layout is beyond trivial. It does not rank as a problem, intellectual challenge, or even that interesting.
The challenges are all about what goes in the nodes, how to define it, how to standardize it across different institutions, how to compare it to what was tested in two different clinical trials, etc. And if the computerized process goes into clinical practice, how is that node and its contents robustly defined so that a clinician sitting with a patient can instantly understand what is meant by it's yes/no/multiple choice question in terms that have been used in recent years at the clinician's conferences.
Addressing the challenges of constructing the graph requires deep understanding of the terms, deep knowledge of how 10 different people from different cultural backgrounds and training locations interpret highly technical terms with evolving meanings, and deep knowledge of how people could misunderstand language or logic.
These guidelines codify evolving scientific knowledge where new conceptions of the disease get invented at every conference. It's all at the edge of science where every month and year we have new technology to understand more than we ever understood before, and we have new clinical trials that are testing new hypotheses at the edge of it.
Getting a nice visual layout is necessary, but in no way sufficient for what needs to be done to put this into practice.