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Why are cancer guidelines stuck in PDFs?

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Re: Why are cancer guidelines stuck in PDFs?

#101

Post by layer8 »

WitCanStain wrote: post #95
layer8 wrote: post #92

Earlier quoted context omitted.

If there is no ROI, investing further resources would be charity work. I don’t think it’s accurate to call a company not doing so malicious.

Not actively malicious perhaps, but prioritising profits over lives is evil. Either you take care to make sure the systems you sell lead to the best possible outcomes, or you get out of the sector.

The company not existing at all might be worse though? I think it’s too easy to make blanket judgments like that from the outside, and it would be the job of regulation to counteract adverse incentives in the field.

Re: Why are cancer guidelines stuck in PDFs?

#102

Post by ethbr1 »

righthand wrote: post #46
all2 wrote: post #35

Earlier quoted context omitted.

> 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?

Medical information system vendors only care about making a profit, not implementing actual solutions. The discrepancies between systems can lead to bad information which can cost people their life.

As an analogy, imagine if the consequence of Oracle doing Oracle-as-usual things was worse medical outcomes. But they did them anyway for profit.

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.

Re: Why are cancer guidelines stuck in PDFs?

#103

Post by ethbr1 »

prepend wrote: post #80
TheAceOfHearts wrote: post #59

Earlier quoted context omitted.

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.

I think there are more options than malice or incompetence. My theory is difficulty. 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.

Healthcare suffers from strict regulatory requirements, underinvestment in organic IT capabilities, and huge integration challenges (system-to-system).

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).

Re: Why are cancer guidelines stuck in PDFs?

#104

Post by caboteria »

ethbr1 wrote: post #102
righthand wrote: post #46

Earlier quoted context omitted.

Medical information system vendors only care about making a profit, not implementing actual solutions. The discrepancies between systems can lead to bad information which can cost people their life.

As an analogy, imagine if the consequence of Oracle doing Oracle-as-usual things was worse medical outcomes. But they did them anyway for profit. 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.

It's worse than that. VistA is a world-class open source EMR that the VA has been trying to kill for decades.

Re: Why are cancer guidelines stuck in PDFs?

#105

Post by joshuaissac »

fl0id wrote: post #72
zo1 wrote: post #61

Earlier quoted context omitted.

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".

For liability reasons alone, you cannot just have random people working on health/lab stuff and the requisite vendors have access to these standards.

According to what killjoywashere said, the vendors do not want to implement these standards. So if CAP wants the standards to be relevant, they should release them for random people to implement.

Re: Why are cancer guidelines stuck in PDFs?

#106

Post by epcoa »

londons_explore wrote: post #81
epcoa wrote: post #54

Earlier quoted context omitted.

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.

but we have well established ways to deal with those... test/validation sets, n-fold validation, etc. Even if there was some overfitting or data contamination that was undetected, the result would most probably still be better than a hand-made decision tree over the same data...

Ok, until you can sue the AI you need to find a doctor ok putting their license behind saying “I have no idea how this shiny thing works”. There are indeed some that will, but not a consensus.

Re: Why are cancer guidelines stuck in PDFs?

#107

Post by queuebert »

layer8 wrote: post #93
prepend wrote: post #4

I’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.

I agree. However, since the PDF format supports structured data, one could in principle have it both ways, within a single file.

^ This. See, e.g., https://lab6.com/ for some interesting tricks with the PDF format.

Re: Why are cancer guidelines stuck in PDFs?

#108

Post by queuebert »

As a cancer researcher myself, I'd point out that some branches of the decision trees in the NCCN guidelines are based on studies in which multiple options were not statistically significantly different, but all were better than the placebo. In those cases, the clinician is free to use other factors to decide which arm to take. A classic example of this is surgery vs radiation for prostate cancer. Both are roughly equally effective, but very different experiences.

Re: Why are cancer guidelines stuck in PDFs?

#109

Post by queuebert »

gcanyon wrote: post #91

The real question is: why is everything stuck in PDFs, and the more important meta-question is: why don't PDFs support meta-data (they do, somewhat). So much of what we do is essentially machine-to-machine, but trapped in a format designed entirely for human-to-human (also lump in a bit of machine-to-human). Adobe has had literally a third of a century to recognize this need and address it. I don't think they're payi…

PDFs are essentially compressed Postscript, which is Turing complete, so a PDF in theory can do anything you want.
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