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.
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 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.
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.
VistA was useful in it's time but it's hardly world class anymore. There were fundamental problems with the platform stack and data model which made it effectively impossible to keep moving forward.
It wouldn't be appropriate for the federal government to push any particular product. They have certified open source EHRs. It's not at all clear that increased adoption of those would improve patient outcomes.
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.
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.
You seem to think that the default assumption is that fixing the format is easy/feasible, and I don't see why. Do you have domain knowledge pointing that way?
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.
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).
Incompetence at this level is intentional, it means someone doesn't think they'll see RoI from investing resources into improving it. Calling it malice is appropriate I feel.
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.
You're making a lot of unsupported assumptions. There's no reliable evidence that this is causing patient deaths, or that a different format would reduce the death rate.
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...