[baxtr]

A very close relative of mine passed away 2 weeks ago. She had cancer for 2 years and when she was first diagnosed the doctors would give her 8-10 “good years”. Well...

When she died, I was shocked to learn that very few data points of her sichkness and treatment history would be preserved for later analysis. Doctors work almost entirely on their gut feeling and probably some clinical studies with n being very small. I hate that she died, but it’s even worse to know that all her data died with her and won’t help any other patient. I think this is one of the rare cases where collecting more data would help protect people

[bane]

I get the impression that much of medicine is one of those strange practices that looks kinda like science, but really isn't. Medical practice appears to work more like a highly evolved guild system than any other kind of recognizable scientific activity. It's probably far beyond the point where its necessary to bring in actual scientific practices, so I can't say it's on the cusp of a sweeping change.

One of the problems that really prevents the change is that analysis of patient data is so highly protected that it's virtually impossible to do proper studies. We assume that people with such access are performing them, but I know from second-hand experience that actual time spent on real treatment studies is very small and most of the time is spent dealing with policy and patient privacy issues.

Large insurance and government-based (VA, CMS, etc.) providers have the most data, but either what they're looking for isn't exactly aligned with what patients need, or the organizations are so fubar (e.g. the VA) that real studies are unlikely to happen.

There really needs to be some kind of research exception/feedback loop on massive scale data analytics that allows some group of objective researchers to mine patient data and put in place actionable recommendations that work their way into medicine rapidly -- perhaps with some penalizing stick insurance providers can leverage against practitioners to make sure they adopt newer better practices.

[roenxi]

> I get the impression that much of medicine is one of those strange practices that looks kinda like science, but really isn't.

It is very hard to escape from the fact that there are patients who are so difficult to keep alive that the rational choice is probably to let them die. The exact circumstances will depend on your value structure, but once that is settled any scientific approach that optimises for greatest net good or quality of life will involve letting some patients go without really trying to save them.

There is a pretty substantial lobby (no particular affiliation) who just won't accept that attitude being out in public.

I watch the struggles of data science to take root in our medical system with great interest in light of this. Anyone using a statistical argument to justify inaction when confronted with a patient is running a risk of being pilloried. Pictures of ancient grandmas on the front page of a newspaper style stuff. And that is if they get the stats right - get something wrong and then you feel like a loser on top of running that risk.

Between that and the serious privacy concerns, I can believe that the medical world will be mysteriously disorganised and ad-hoc in their decision making no matter what statistics available. I don't see what the real incentive is to look at and use the numbers, without having a statesman like dedication to the greater good, come what may. Such persons combined with leadership and statistical knowhow are rare.

[taneq]

The simple fact that "evidence-based medicine" needs a special name to describe it, rather than all medicine being evidence-based, is still absolutely mindblowing to me.

[class4behavior]

Uh, you're confusing this with the distinction made between Western standard medicine and folk or alternative medicine practices.

[taneq]

No, this term was proposed as an "emerging new paradigm" in 1992 (!!) focusing on "the examination of evidence from clinical research" as our most reliable source of information.

"Western standard medicine" was still largely based on intuition and woo less than 30 years ago.

Source: https://jamanetwork.com/journals/jama/article-abstract/40095...

[tialaramex]

Yup. Doctors interested in the philosophy of science have moaned about this sort of thing before. A more typical example goes like this:

I'm a GP, and I see dozens of patients every year with cases of Foozle disease. I was taught in medical school to give them orange pills, but I follow developments in general medicine and I know the new purple pill has seen good results for Foozle too. Nobody has published even a small study about which is better.

The law says since a responsible doctor wouldn't know one is better I can choose either. I could give all my female Foozle patients the orange pills and prescribe the purple for everybody else, or I could just pick whichever is cheapest, or I could even pick randomly for each patient. All legal.

But, if I pick randomly AND record the results, thus doing science to find out which was best, that's an unauthorised medical experiment and I could lose my job or even go to jail.

[mcny]

» But, if I pick randomly AND record the results, thus doing science to find out which was best, that's an unauthorised medical experiment and I could lose my job or even go to jail.

Perhaps we can try to cut down the red tape a little but we can't eliminate the idea of informed consent. If you're doing a study on patients, they absolutely have a right to know and a right to refuse to be a part of your study without any repercussions.

I think informed consent is something we can't get rid of even if we do something drastic and eliminate medical licensing altogether.

[evandijk70]

As a researcher, this is absolutely true and incredibly frustrating.

I am trying to make the survival data of a clinical trial combined with sequencing data of the patients publicly available. Nearly all the patients have died by now, as the patients in this cohort patients have a very poor prognosis (median survival of about 24 months). It is still almost impossible to release clinical data (diagnosis, number and location of metastasis, age of patients, etc) combined with sequencing data without violating privacy laws.

In the meantime, there is almost no career incentive for me to make the data available. I do not have, and am unlikely to get a permanent contract. In my next job interview I will be judged by the number of publications on my CV.

[everdev]

Sorry for your loss.

When it's the other way around and someone survives 10 years on a "2 years left to live" diagnosis, we seem quick to credit their strength, determination, spirituality, etc., rather than looking at how inaccurate the original prediction might have been.

[baxtr]

Thanks. Absolutely. And of course, I’m aware that I’m quite emotional about this right now. But I think the other way around like you describe is better because you’re forced to say goodbye, and can enjoy whatever extra time comes afterwards. I have the feeling that I’ve missed that opportunity (which is of course my fault, but still)

[pavel_lishin]

I'm sorry to hear about your loss, but can you elaborate on what data was discarded after her passing?

[baxtr]

Thank you. Well, the way I understand it: her treatment history won’t be considered by any other doctor than her own. The reason for that is that she wasn’t part of a proper medical study.

However, I believe there is value in her data. The last days she was treated with an experimental drug. If there was an open database on all cases with treatment history I could have looked into that and get a feeling what to expect. These things often come with huge side effects, so you want to do it only if there is a slight chance.

Also, if this data was collected globally, the number of reference cases would be much larger.

[joshgel]

This is partially true. Her data can't be used willy nilly (sp?). Hospitals and doctors offices can use this data for their internal operations, to improve efficiency, quality, etc and (honestly) profit. They can also use this data in research, but only with IRB approval for exemption from consent. Her data should be protected!

Also, I would add that the data collected for routine patient care is often of significantly lesser quality than that collected as part of organized research studies. This is because in a research study, all patients get the same studies and tests whereas in clinical care, they only get what they need, so there is significant amounts of 'missing' data.

[chii]

> Her data should be protected!

but if it could be anonymized (i.e., the medical data such as blood tests, history of diseases etc disassociated with any names), then wouldn't it make sense to have this data be used for research?

[joshgel]

Definitely, still should require IRB approval and careful study design, limited access to only those who need it, etc

[louden]

Her consent would also be needed.