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Comment by nradov | Hacker News Reader

Yes this is an argument against releasing data. You and most other patients lack the skills and context to interpret the data in a meaningful way. And no provider currently captures all of the confounding factors. In fact, for most serious conditions we haven't even done enough research to understand what all the confounding factors are.

If we go with your proposal then the inevitable outcome is that the best providers (particularly surgeons) will engage in metrics arbitrage by refusing to treat patients whose co-morbidities and complications aren't adequately captured by standardized coding systems and clinical guidelines. Is that really the outcome you want?

As for putting the burden on providers to convince patients to trust them, good luck with that. We currently have shortages of providers in many areas and specialties due to price fixing and supply constraints. So most patients have to take what they can get regardless of trust.

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What about, say a statistician? Good odds that a statistician or mathematician would have a better grasp of what the numbers imply than a medical practitioner.

Based on the doctors I know, the medical world does not have an especially profound understanding of how to deal with large amounts of data. Their specialities are diagnosis or specialist surgery, not data.

If the data is so scary we have to hide it then there are glaring problems that need to be addressed. Sure there are misleading edge cases; but believing that accurate data will be worse than word of mouth is, quite frankly, unwarrented.

I'm an epidemiologist that works on exactly this field, and I can tell you right now, with full access to the data, it's still hard to get a handle on.

Having statistical skills is helpful, but statistics only gives part of the picture. Patients often have bad outcomes despite providers adhering to the best current standard of care. And that doesn't just fall out of the noise because there are persistent differences in the patient populations between providers. We have no reliable way to identify and quantify all of those confounding factors. The data and the clinical research simply doesn't exist yet.

Your views on bodily autonomy seem bizarre. Patients own their own bodies and have the right to make fully informed decisions about what happens to them.

If a provider's or facility's (or entire speciality's) numbers look bad, that's important information for the consumer to possess. Hiding the numbers should not be an option.

Or do you think that car crash test results, and airplane crash data, and health department inspection findings should also be kept secret?

More problematically, if you can't articulate a quantifiable standard that will indicate a provider's quality level, then then entire concept seems ill-defined. I.e., when you refer to the "best providers", what does that even mean?

> Your views on bodily autonomy seem bizarre. Patients own their own bodies and have the right to make fully informed decisions about what happens to them

Their statement only seem bizarre when you view it from the perspective of individualism. Another way to look at it is - let me (ab)use Star Trek quote: "The needs of the many outweigh the needs of the few". You seem to make absolute statements that in fact are relative and rooted in one ideology you chose to follow.

> If a provider's or facility's (or entire speciality's) numbers look bad, that's important information for the consumer to possess. Hiding the numbers should not be an option.

Forgive me the harshness - I believe this is a simplistic way of looking at the problem. OP clearly showed systemic forces at play, and those are important to consider. You're saying "hiding the numbers", as if they were perfect numbers hidden away in a safe. Problem is there are not, and even when they might be very nuanced. A point raised by OP: "best providers (particularly surgeons) will engage in metrics arbitrage by refusing to treat patients" - I think it is a perfectly reasonable threat, which you chose to ignore.

> Or do you think that car crash test results, and airplane crash data, and health department inspection findings should also be kept secret?

Again going back to OP's example - doctor's might be incentivised not to treat patients which make their numbers look bad. None of your examples share similarity in this sense (and possibly in many more).

>doctor's might be incentivised not to treat patients which make their numbers look bad.

If your concern is with metrics arbitrage, then it is not necessary to use quantitative metrics to satisfy concerns about bodily autonomy. One might instead require providers to furnish anonymized records of all the adverse events their patients have experienced, along with any mitigating factors they think absolve them of responsibility.

I think the issue of quantification is actually a red herring. A simpler example will indicate whether or not there are differences in our ethical intuition. I am scheduled for a "routine" surgery, but yesterday's patient who was having the same surgery by the same doctor had a major artery sliced, bled out and died. All the staff are aware of what happened, but no one tells me. In fact, even if I ask, people are instructed to say nothing. If I possessed this information, I would almost certainly decide not to proceed. I go ahead with the procedure based on the understanding that death is a much more remote possibility than those treating me happen to believe. Is this or is this not a violation of my bodily autonomy?

You've got to be kidding. Providers are never going to do the extra work to anonymize data and compile the reports you're looking for. We already have a shortage of providers. Who exactly do you think is going to pay for that extra work? I've dealt with clinical records firsthand and in the general case it's simply impossible to automate anonymization. Plus coding all those qualifiers and mitigating factors takes a huge amount of time.

>Who exactly do you think is going to pay for that extra work?

If it puts out of business doctors and facilities (perhaps even specialties?) whose patients agree to care based on grossly inaccurate understandings of their track record, then it would more than pay for itself.

Then we're fortunate that you're not in charge of anything important.

Bodily autonomy is irrelevant here. As a sane adult patient you're always free to decline treatment. You're also welcome to ask your providers for any data they can legally release. But in reality most providers simply don't have the data you're looking for and have no incentive to give it to you even if they did have it. Then if you need care what are you going to do?

You have hit upon the core problem though. Outside of a few limited areas where we have clear evidence-based medicine guidelines there is no reliable quantifiable standard for measuring provider quality.

See: When Consumer Reports decided to rate the "Best Hospitals" based on their infection rates, while ignoring all kinds of other factors that meant some random rural clinics were awesome, while Mayo, Johns Hopkins, etc. got kicked in the teeth.

Yes that's part of the problem. But in fairness to Consumer Reports, some of the major teaching hospitals were actually terrible at adhering to EBM guidelines for preventing secondary infections. And this was simple stuff like washing hands and sterilizing treatment sites.

As someone working in one of "America's best hospitals" I can confirm that those consumer reports are a complete joke.

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