> is a little unnerving

Why so? You were lucky! You had a low probability for the diagnosis, but the doc made the right decision. That's to be celebrated.

> did not qualify for a study on heart attack risk because she was only 39.

Criteria for studies are designed to test a specific hypothesis. There are many possible reasons why your sister was not eligible, and not all of them bad.

Then the entire medical industry is failing at communicating that

The relatability of OP’s shared experience has us wanting to replace most medical professionals with genAI language models as soon as the regulations allow

Flip the issue to something less polarizing and it should appear this is a very separate scenario from what GP is talking about (even if perhaps you still don't agree it should be malpractice for some reason):

1) You go in after feeling confused and have a headache after falling from a skateboard with no helmet. The ER sends you home not having checked anything or any notes to watch out for because they think you're too young to have problems from a fall (despite many young people having problems after a fall each year). At home you die because of a brain bleed.

vs.

2) You go in after feeling confused and have a headache after falling from a skateboard with no helmet. The ER runs some tests, sees the problem, and prescribes the best course of treatment given this information. Despite this you still die or have lasting effects on your brain.

Despite the doctors not fully remedying your problem in both situations only situation 1 involves negligence for a malpractice claim because the problem isn't the outcome, it's the quality of treatment not meeting the minimum levels. Flip the scenario specifics back and what GP is saying is that it isn't considered negligence to say "you're under 40, you're fine, go home" instead of "you could seriously be having a problem. We should put you on a statin and talk over the risks/symptoms of a heart attack" because the standard of care (sort of one measurement for what's a negligent treatment action) says the calculator defines the appropriate treatment and the calculator doesn't even work for those <40. What GP is not implying is doctors are negligent just because you still had a heart attack anyways.

(separating this out)

I agree with you heavily here: "Also, I don't believe the claim that physicians don't care about CVD risk in patients <40yo including high blood pressure and high cholesterol."

Seems odd over all. My physician, unprompted, wanted to put me on a statin when I was very healthy and in my early 30s just to lower my risk as my cholesterol numbers were trending up at the time. Whether or not this calculator actually works for those under 40, physicians certainly still prescribe statins, evaluate heart health risks, and communicate on the dangers of poor heart health to individuals all the time anyways.

Almost all ailments can be mitigated to some extent by lifestyle choices. Is anyone that doesn't make the best possible choices for the particular ailment responsible for their situation?

No, typically a court would summon an expert on the topic for testimony. Such an expert, as most any doc, would understand the limits of guidelines/calculators/etc. and judge accordingly. A typical clinical presentation resulting in a missed diagnosis would not fly at all under this process. But an atypical presentation in a very low probability context (young patient, no risk factors) might get through. Also, contrary to popular belief docs absolutely do not cover for each other in court.

So, from the article, it sounds like this current UK system for liver transplant matchibg was developed to replace the previous regional systems. It's not clear if all of those used the same process to determine matches, but it would be possible for them to have developed different processes.

It's also likely that a cross-regional system existed, that may have been ad-hoc. If you had a patient with an exceptional need, you might ask the other regions to be on the look out for an exceptional liver that works just right for your patient. That sort of thing is harder to do in a national system where livers are allocated based on scores.

Another thing that's helpful with multiple systems is it encourages reviewing and comparing results.

For a single system, reviewing results is even more important, but comparing is harder. But you might look at things like demographics of patients who died from liver disease while on the list including how long they were on the list; how long the current people have been waiting; demographics of people who recieve a transplant and how long they waited.

If there's a bias against young people, you would likely see more young people with long wait times, etc.

Yes, in the US it might look like state level / hospital system level vs 1 singular national level matching system.

US has its problems, but sometimes the "laboratory of ideas" that is federated system of 50 states prevents bad outcomes like this.

Right, so there was a flawed implementation. Even if you had democratic consent to "implement a utilitarian organ matching mode", that would not prevent this failure mode.

So what is the governance and oversight framework for ensuring democratic consent from ideation to implementation to monitoring, and how does it differ from what the UK did? The article points out that there were multiple reviews of the algorithm that identified this bias all the way back in 2019. What is the process that connects that feedback with the democratic process to ensure that flawed implementations never deploy, or are adjusted quickly.

With FIFO the difficulty simply moves to whether you go on the list or not. What should the threshold be for being on the list. If you make it too high then people die without ever being given the opportunity for a liver, if you make it too low then too many people die waiting.

It also creates a weird scenario where all of the worst cases past some level will have no hope of getting a transplant. I.e. if the wait time is uniformly 3 years, then anyone with <3 years of expectancy has little hope despite being the ones who need it most, meanwhile everyone with >3 years expectancy can happily hang out on the list waiting for their transplant.

Simplified a little, but you get the idea. It’s arguably fairly obvious that livers should be assigned based on urgency in some form. I absolutely agree that this should be open and explainable though.

what’s your point?