The author makes a great case for machine-interpretable standards but there is an enormous amount of work out there devoted to this, it’s been a topic of interest for decades. There’s so much in the field that a real problem is figuring out what solutions match the requirements of the various stakeholders, more than identifying the opportunities.
Why are cancer guidelines stuck in PDFs?
51–60 of 163 posts
Re: Why are cancer guidelines stuck in PDFs?
#52Earlier quoted context omitted.
> complex systems where lots of data exists Not a lot of high quality data exists for human health. Clinical guidelines for many diseases are built around surprisingly scant evidence many times. > even if they're so complex no human can understand them? That’ll be wonderful to explain in court when they figure out it was just data smuggling or whatever other bias.
In cancer there's an abundance of clinical trials with high quality data, but it is all very complex in terms of encoding what the clinical trial actually encoded. 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 ris…
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Re: Why are cancer guidelines stuck in PDFs?
#53Forgive me if I'm mistaken, but isn't this exactly what the FHIR standard is meant to address? Not only does it enable global inter-health communication using a standardized resource, but it's already adopted in several national health services, including (but not broadly), America. Is this not simply a reimplementation, but without the broad iterations of HL7?
Right, it would make more sense to use HL7 FHIR (possibly along with CQL) as a starting point instead of reinventing the wheel. Talk to the CodeX accelerator about writing an Implementation Guide in this area. The PlanDefinition resource type should be a good fit for modeling cancer guidelines. https://codex.hl7.org/ https://www.hl7.org/fhir/plandefinition.html
This is the comment I was looking for.
You would aim to use CQL expressions inside of a PlanDefinition, in my estimate. This is exactly what AHRQ's, part of HHS, CDS Connect project aims to create / has created. They publish freely accessible computable decision support artifacts here: https://cds.ahrq.gov/cdsconnect/repository
When they are fully computable, they are FHIR PlanDefinitions (+ other resources like Questionnaire, etc) and CQL.
Here's an example of a fully executable Alcohol Use Disorder Identification Test: https://cds.ahrq.gov/cdsconnect/artifact/alcohol-screening-u...
There's so much other infrastructure around the EHR here to understand (and take advantage of). I think there's a big opportunity in proving that multimodal LLM can reliably generate these artifacts from other sources. It's not the LLM actually being a decision support tool itself (though that may well be promising), but rather the ability to generate standardized CDS artifacts in a highly scalable, repeatable way.
Happy to talk to anyone about any of these ideas - I started exactly where OP was.
Re: Why are cancer guidelines stuck in PDFs?
#54Earlier quoted context omitted.
> complex systems where lots of data exists Not a lot of high quality data exists for human health. Clinical guidelines for many diseases are built around surprisingly scant evidence many times. > even if they're so complex no human can understand them? That’ll be wonderful to explain in court when they figure out it was just data smuggling or whatever other bias.
In cancer there's an abundance of clinical trials with high quality data, but it is all very complex in terms of encoding what the clinical trial actually encoded. 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 ris…
By smuggling and bias I meant in an ML model. Smuggling was a bit informal, but referring to models overfit on unintended features or artifacts.
Re: Why are cancer guidelines stuck in PDFs?
#55Earlier 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…
I mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?
Re: Why are cancer guidelines stuck in PDFs?
#56Earlier 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…
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.
Re: Why are cancer guidelines stuck in PDFs?
#57> With properly structured data, machines should be able to interpret the guidelines.
Yeah, right. And then say "Die". /s
The guidelines shall be structured properly. It is not rocket science.
Re: Why are cancer guidelines stuck in PDFs?
#58You might be interested in checking out the WHO SMART Guidelines. Nothing on cancer yet AFAIK, but it's evolving.
I was also thinking about FHIR and SMART guidelines.
But the whole system is mess. And the whole SMART guideline system is controlled by 2-3 gatekeepers who don’t listen to any ideas other than their own
Re: Why are cancer guidelines stuck in PDFs?
#59Earlier quoted context omitted.
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…
I mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?
How about fixing the format? Something that is obviously broken and resulting in patient deaths should really be considered a top priority. It's either malice or masskve incompetence. If these protocols were open there would definitely be volunteers willing to help fix it.
Re: Why are cancer guidelines stuck in PDFs?
#60Earlier quoted context omitted.
> 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.
I worked with oncologists and this isn’t true. Oncology has a rapidly changing treatment landscape and it’s common for oncologists to be discussing the latest paper that has come out. If you’re an oncologist and not keeping up with the literature you’re going to be out of date in your decisions in about 6 months from graduation.
Funny enough that last paragraph is also said of software engineers too. Neither are true.