There’s a legal context here. Once the data is available, physicians are obligated to chasenit down even if they think it’s unimportsnt. Ignoring data loses malpractice suits; unnecessary and ultimately harmful diagnostics prompted by data does not.
I don't know the actual legality. But here's what I do know from attempting to implement multiple projects within the US for clinical care and for clinical research: most providers, hospitals, and pharmaceutical companies we have worked with have balked at the ability to have high resolution data fed into their medical record or research data systems. In most cases, they are worried that if they had the data, they would have to act on it were something to be concerning. And they do not want that responsibility.
Example: we were in talks to feed in near-realtime blood glucose, activity, and blood pressure measurements from patients on a clinical trial. Surely that would be useful for better sussing out the effects of a research drug than the current process (patient comes in every few months to get measured or have their log data entered or meter data downloaded)? Nope, multiple top 5 pharma companies didn't want the responsibility and liability of seeing their data that often, because what if a patient had super low or super high glucose and they later died? You had the ability to act on it but didn't.
They'd rather just not have it at all. It sounds ridiculous. And again, I don't know the actual legal/liability issues, but based on my experience with malpractice cases, I could see a viable case to be made. And there are certainly institutions out there who believe the benefit is worth the cost of that responsibility for certain use cases. But my experiences have definitely made me reconsider some of these things.
All that said, I am definitely in favor of collecting more health data (somehow), because until we have more data we won't know its utility. So far, in general it has been shown that more testing and more information often doesn't lead to better outcomes, but the cost of data is getting lower -- aside from aforementioned liability cost/fear.
That’s why we use them.
Isn't that a description of literally what every practicing doctors, that isn't involved in research, actually does?
And clinical trials are extremely expensive. Surely there's some utility in gathering data between the extremes of doctor-patient and clinical trial.
We use properly conducted clinical science to give us a framework for interpreting the data we see, comparing data we have to studies with appropriate external validity to allow that comparison.
And no, there isn’t, if an RCT is at all feasible. There was a great paper a few years back that reviewed various case-control studies for conditions that were ultimately explored using RCTs (eg, knee arthroscopy, internal mammary artery ligation). What they found was that the retrospective study consensus was basically a coin-flip with respect to the RCT consensus. They just don’t provide useful data - too many confounders, known and unknown, go unaddressed.
I am extremely skeptical that this is in fact an even approximate description of how medicine actually works. Maybe not what you're doing! But what almost all of the doctors I've ever seen? They're not keeping up with all of clinical science. And even if they were, lots of clinical science is not being properly conducted. Just listen to or read the gripes that the statisticians have!
My previous claim still stands; you wrote:
> I, as a lone doc, am not equipped to make heads or tails of un-randomized un-controlled piles of data.
An individual patient, provides "un-randomized un-controlled piles of data" to their doctor – or, rather, not even piles of data. There's the visual evidence available from looking at and watching a patient when they're visiting your office (or whatever). There are sounds, smells, touch too. Then there's the verbal evidence. Then there's the results of whatever tests it is you order. If that's not un-randomized and un-controlled data, I don't know what is.
There's no framework for interpreting all possible medical evidence, even for the smallest professional specialties. There are no RCT for medical expert systems; none that anyone could legally use instead of a licensed doctor.
And there are lots and lots of interventions that doctors perform that have never been adequately studied in the form of RCTs. Doctors, in the real world, exercise an incredible degree of latitude with regard to what interventions they can perform based on their own personal judgement.
I imagine getting something like this implemented at a state level in one or two key states could enable collection of large scale medical data for analysis on behalf of the public.
Edit: Question for you, given your experience do you think it might be possible to convince big pharmaceuticals to collect high fidelity data if said data was collected into wearable devices and only processed after the fact? As analogy to use a "black box" recorder approach rather than flight control systems. Though not sure how far to take that "black box" analogy.
(1) if I see something, I have to act on it, despite not actually having the knowledge of whether it means anything in this information-rich context. I just love things that -look- like information but that don’t actually tell me anything.
(2) we have a LOT of data suggesting that we do more harm than good when we try to intervene or investigate everything. For Pete’s sake, hospice patients outlive those who are actually pursuing life extension! Turns out every treatment has harms, and when you’re applying those harms to no benefit (because the patient is asymptomatic, or the anomalous event was never destined to progress to clinical disease), you just accrue harm that -looks- like care.
3) It is not likely to result in useful diagnosis, because catching shit pre-clinically offers little indication of what will or won’t become clinical. We see this in helical CT: a lot of people became “cancer patients” when helical CT came out, before we realized a LOT of growths recede forever without intervention - we just hadn’t seen them before, on the less sensitive tech.
If I see the data I have to act on it to cover my (American) ass, and I know I will do net harm to my patients. Thanks but no thanks. Do your due diligence: collect the data, analyze it, stick it in a properly randomized prospective study to see if you just trawled your way into an overfitted model, and prove that the intervention for it does more good than harm. THEN I’ll be delighted to use that specific data to pursue that specific intervention. Don’t just measure everything, throw it at my wall like hot spaghetti, and expect me to turn it into dinner.
-my blunt anonymous opinion, since it was asked for
So as someone that would be liable to act on this data, I understand and sympathize that receiving this data would be an unfair burden on you. But what about the rest of us? We're being treated by people that we are expected to trust that actively refuse to learn whether they're actually helping. That seems pretty unfair to the rest of us.
And no, we aren’t actively refusing to learn if we are helping. We want the data collected in a meaningfully structured way that actually answers the question of whether it’s helping. Garbage In/Garbage Out doesn’t answer that question.
You say it’s unfair, but go reread my post. My concern is that my arm gets twisted into doing things that are -bad for you-, not bad for -me-. Whether you like the reasoning or it’s conclusion, nothing in it is about being unfair to you. It’s about trying to do my absolute best to live up to my ethical responsibility to optimize your health outcomes. The only part of it that’s defensive is the part where I don’t ignore test results, because it will get me sued out of medical practice in the rare occasion they’re true positives. And I would like for that not to be the case, but there we are.
I don't disagree. I was claiming that both patients and doctors are caught in this trap, i.e. doctors are legally liable for not offering, or recommending, treatment that isn't warranted.