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Why are cancer guidelines stuck in PDFs?

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Re: Why are cancer guidelines stuck in PDFs?

#151

Post by delfinom »

HPsquared wrote: post #145
grumbel wrote: post #62

Same reason why datasheets are still PDFs. It's a reliable, long lasting and portable format. And while it's kind of ridiculous that we are basically emulating paper, no other format fills that niche. It's the niche HTML should be able to fill, since that was its original purpose, but isn't, since all focus over the last 20 or so years has been on everything else, but making HTML a better format for information excha…

I really wish there was a standard way to package html with JavaScript for offline viewing, basically to treat it like a pdf but with fancy things like interactive controls.

This is how we end up with 300MB HTML files because companies offload datasheet creation to bootcampmill grads instead of technical writers.

Re: Why are cancer guidelines stuck in PDFs?

#152

Post by chpatrick »

jjmarr wrote: post #56
killjoywashere wrote: post #34

Earlier 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…

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.

The problem is that a bug could kill people.

Re: Why are cancer guidelines stuck in PDFs?

#153

Post by prepend »

jampekka wrote: post #141
prepend wrote: post #132

Earlier quoted context omitted.

I love open source EMRs, but has any major country adopted open source EMRs? 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.

If I understand correctly, Estonia made their own EMR/EHR from scratch. The government produced (and commissioned?) software is all open source. https://koodivaramu.eesti.ee/explore 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.

It’s a famous “should be easy” use case. I think this is wrong only because no one does it.

Re: Why are cancer guidelines stuck in PDFs?

#154

Post by prepend »

delfinom wrote: post #150
ethbr1 wrote: post #102

Earlier quoted context omitted.

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.

>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 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.

What explains most other democracies not doing it?

Is Sweden an oligarchy, too? Or France? Etc etc

Re: Why are cancer guidelines stuck in PDFs?

#155

Post by kmoser »

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.

Agree that most companies prioritize profits over lives in an unconscionable manner, but there's a point of diminishing returns where eventually you can save a few more lives, but at an astronomical cost. Auto manufacturers have the same dilemma: spend a few hundred million dollars adding safety features, or nix the features and hope to lose less than that in lawsuits?

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.

Re: Why are cancer guidelines stuck in PDFs?

#156

Post by jampekka »

prepend wrote: post #153
jampekka wrote: post #141

Earlier quoted context omitted.

If I understand correctly, Estonia made their own EMR/EHR from scratch. The government produced (and commissioned?) software is all open source. https://koodivaramu.eesti.ee/explore 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.

It’s a famous “should be easy” use case. I think this is wrong only because no one does it.

I'm sure there's a lot of work, but hundreds of millions per deployment is not justifiable. The Finnish EPIC deployment has cost almost a billion euros.

Estonia's from-scratch system was reportedly about 10 million euros.

Re: Why are cancer guidelines stuck in PDFs?

#157

Post by shiroiushi »

hyhconito wrote: post #140
shiroiushi wrote: post #133

Earlier quoted context omitted.

>Because JSON is fucking horrible for humans? It's better than XML at least.

JSON has never been better than XML. People are just terrible at XML and don't want to learn.

You could say the same thing about assembly language.

Re: Why are cancer guidelines stuck in PDFs?

#158

Post by liontwist »

refurb wrote: post #149
liontwist wrote: post #60

Earlier quoted context omitted.

Funny enough that last paragraph is also said of software engineers too. Neither are true.

Unlike oncologists, people won't die if you don't keep up on the latest programming techniques.

This sounds like it should be true but isn’t. Were oncologists killing people in 2010 because they lacked the research from the last 15 years? A career is only 25-35 years long.

And while we are here it’s always a good reminder that medical malpractice is the 3rd leading cause of death. So yes they are still killing people everyday.

doctors are not a special class of professional. They are guided by intuition, standards, a touch of research, and mostly experience. Most of the time that gets the job done.

Re: Why are cancer guidelines stuck in PDFs?

#159

Post by refurb »

liontwist wrote: post #158
refurb wrote: post #149

Earlier quoted context omitted.

Unlike oncologists, people won't die if you don't keep up on the latest programming techniques.

This sounds like it should be true but isn’t. Were oncologists killing people in 2010 because they lacked the research from the last 15 years? A career is only 25-35 years long. And while we are here it’s always a good reminder that medical malpractice is the 3rd leading cause of death. So yes they are still killing people everyday. doctors are not a special class of professional. They are guided by intuition, standa…

> This sounds like it should be true but isn’t.

It absolutely is true, I've seen it myself.

> Were oncologists killing people in 2010 because they lacked the research from the last 15 years? A career is only 25-35 years long.

100% absolutely they were.

Maybe you don't understand just how fast cancer treatments change? Cancers that had 20% 5 years survival rates 15 years ago, now have 60% survival rates.

Thus if a doctor today isn't aware of those new therapies, they are killing patients that would otherwise live.

> And while we are here it’s always a good reminder that medical malpractice is the 3rd leading cause of death. So yes they are still killing people everyday.

How is this relevant to the point?

> doctors are not a special class of professional

I'd say they absolutely are. Unlike most other jobs, their decisions don't directly have an impact on whether people live or die.

Which is why we treat their employment differently requiring not only education, but supervised work experience, standardized exams and licensing. If they don't fulfill those requirements, they don't work as doctors, period. That seems like a special class of professionals to me.

Re: Why are cancer guidelines stuck in PDFs?

#160

Post by liontwist »

refurb wrote: post #159
liontwist wrote: post #158

Earlier quoted context omitted.

This sounds like it should be true but isn’t. Were oncologists killing people in 2010 because they lacked the research from the last 15 years? A career is only 25-35 years long. And while we are here it’s always a good reminder that medical malpractice is the 3rd leading cause of death. So yes they are still killing people everyday. doctors are not a special class of professional. They are guided by intuition, standa…

> This sounds like it should be true but isn’t. It absolutely is true, I've seen it myself. > Were oncologists killing people in 2010 because they lacked the research from the last 15 years? A career is only 25-35 years long. 100% absolutely they were. Maybe you don't understand just how fast cancer treatments change? Cancers that had 20% 5 years survival rates 15 years ago, now have 60% survival rates. Thus if a doc…

> It absolutely is true, I've seen it myself.

Seen what? How frequently the average oncologist studies? How many treatments went poorly because of outdated knowledge? I don't think you have.

> 100% absolutely they were.

So does this mean we are currently killing people out of ignorance and we should wait for the real research? Or we finally figured it out this time?

I'm not claiming nobody is making progress. I'm claiming that most working Doctor's don't read it.

> How is this relevant to the point?

Doctors are making mistakes with imperfect and bad knowledge all the time. All the credentialing, etc doesn't stop this - because they are human beings working a job.

> their decisions don't directly have an impact on whether people live or die.

In every other country a medical doctor is a 4 year bachelor's degree. So why doesn't Europe treat life or death seriously?

The word you are looking for is liability protection - in combination with labor union protection.

> If they don't fulfill those requirements, they don't work as doctors

Every professional class has such requirements - accountants, lawyers, civil engineers, etc. And Doctors are no more serious or caring than any of those.

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