[HN Gopher] The illusion of evidence based medicine
       ___________________________________________________________________
        
       The illusion of evidence based medicine
        
       Author : pueblito
       Score  : 104 points
       Date   : 2022-03-24 17:59 UTC (5 hours ago)
        
 (HTM) web link (www.bmj.com)
 (TXT) w3m dump (www.bmj.com)
        
       | tensor wrote:
       | Drug company bias is definitely a well known issue. But there are
       | even bigger issues with science based medicine.
       | 
       | * MDs are not PhDs for one, though people often equate the two.
       | 
       | * Things like surgery is in fact hard to test. There are ethical
       | issues around it. E.g. are you really going to do a shame surgery
       | "for science" if you think there is a chance it might save the
       | patients life? On the flip side, surgery has a lot of risk, and
       | performing surgery that doesn't work exposes patients to
       | unnecessary risk.
       | 
       | * There are entire fields where pseudo-science is common. Notably
       | a lot of physical therapy and chiropracty is not science based.
        
         | willhinsa wrote:
         | On the difficulty of testing lifesaving treatments, there's a
         | great paper on this topic:
         | 
         | "Parachute use to prevent death and major trauma related to
         | gravitational challenge: systematic review of randomised
         | controlled trials" [0]
         | 
         | It has some great gems like:                 - No randomised
         | controlled trials of parachute use have been undertaken
         | - The basis for parachute use is purely observational, and its
         | apparent efficacy could potentially be explained by a "healthy
         | cohort" effect            - Individuals who insist that all
         | interventions need to be validated by a randomised controlled
         | trial need to come down to earth with a bump
         | 
         | [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300808/
        
       | slibhb wrote:
       | I think profit motive and regulatory capture are real problems
       | but I don't think they're the only problems and maybe not the
       | biggest.
       | 
       | For example, the FDA is generally agreed to have dropped the ball
       | by dragging its feet on approving covid tests. I don't think
       | profit motive or regulatory capture explain that. What does?
       | 
       | More transparency (as the authors recommend) sounds great but
       | giving more power to regulatory bodies is no panacea.
        
         | ouid wrote:
         | Big Pharma _derives_ its oligopoly from the barriers to entry
         | that the FDA imposes. Presumably they take every opportunity to
         | lobby for more rigorous extensive testing. Not because they
         | want to pay more to run tests, but because they want their
         | smaller competitors to pay more to run studies for drugs that
         | might compete.
         | 
         | This is, of course, not an explanation for _how_ they have
         | variously captured the components of the FDA, but it does
         | explain how such a capture is an explanation for foot-dragging.
        
         | mikekij wrote:
         | > For example, the FDA is generally agreed to have dropped the
         | ball by dragging its feet on approving covid tests. I don't
         | think profit motive or regulatory capture explain that. What
         | does?
         | 
         | I'm no fan of over-regulation, but the FDA finds itself in an
         | impossible situation: approve tests quickly to slow the spread
         | of Covid, only to later find that the tests don't work, or test
         | the products rigorously, while patients suffer.
         | 
         | It's a very difficult balance to strike, and I would argue
         | they've done as good a job as one could hope.
        
       | Terry_Roll wrote:
       | As someone who recently complained to the UK Royal College of
       | Veterinary Surgeons and got palmed off because the UK legislation
       | doesnt quantify "reasonable care", the whole system is one giant
       | authoritarian money making scam.
       | 
       | I dont know what professionals are being taught in med/vet/law
       | school now a days, but technology is increasingly demonstrating
       | that professionals could be out of date by the end of their
       | course!
       | 
       | So that problem of trying to stay current in IT is spreading out
       | into other professions and I dont see them tackling this problem
       | like the IT sector has/does.
        
       | yes_man wrote:
       | Another great argument I have heard against EBM (or maybe rather
       | against being religious about it) is that the studies and papers
       | held to highest regard are made in circumstances that do not
       | apply to most of healthcare: the studies might be done in the
       | best hospitals like Johns Hopkins, with practically limitless
       | human resources for the study, and very carefully selected
       | patient groups. In a normal hospital situation you won't have the
       | time or the resources to dedicate the same care for each patient,
       | and the patients might have other conditions (which would rule
       | you out of the big studies).
       | 
       | Still, as a layman who is not a doctor, evidence based medicine
       | sounds like a good idea, but as with everything, taking it to
       | extreme is probably harmful
        
       | medymed wrote:
       | Science marches on one funeral at a time, medicine marches on one
       | expired patent at a time.
        
       | tomohawk wrote:
       | It's not just corruption, it is an idea that seems very correct,
       | but which is subtly wrong.
       | 
       | Take a substance like chlorine. It is put into municipal drinking
       | water because it kills things - things that can kill us or harm
       | us. It is credited with making municipal water a lot safer.
       | 
       | It has been shown to be safe and effective for most people.
       | 
       | The key is most people. Some people, at the edges of the bell
       | curve, cannot tolerate chlorine. If they drink water with it, or
       | bathe in water with it, it harms them. I have family members who
       | have this sensitivity. Since moving to a place with well water,
       | their health has improved immensely.
       | 
       | If you were to be guided only by studies that show the safety and
       | effectiveness of the chlorine treatment, then you could overlook
       | the fact that some people are outliers.
       | 
       | Evidence based medicine will guide you to things that will work
       | for most people in a given situation. However, for a specific
       | patient, you may need to depart from that evidence.
       | 
       | Limiting doctors to only evidence based approaches prevents them
       | from treating specific patients.
        
         | Nuzzerino wrote:
         | > Take a substance like chlorine. It is put into municipal
         | drinking water because it kills things - things that can kill
         | us or harm us. It is credited with making municipal water a lot
         | safer.
         | 
         | > It has been shown to be safe and effective for most people.
         | 
         | And yet it wasn't until I was well into my 30s that I learned
         | that not cleaning your shower head often enough or thorough
         | enough can block the effects of the chlorine and spray
         | aerosolized bacteria everywhere.
         | 
         | It doesn't matter what kind of medicine you have when there are
         | plenty of problems that would be prevented if not for the
         | obscene asymmetry of information and poor cultural health
         | habits. But as long as big tech continues to believe that
         | steering people toward political propaganda is what's best for
         | society, that will be the narrative of the day rather than real
         | progress.
        
         | nonameiguess wrote:
         | The EPA guidelines limit chlorine content in potable water to 1
         | PPM. That is well below the level at which even the most
         | sensitive person is affected. The problem is this guideline has
         | no legal enforcement mechanism, so whether or not your
         | municipal water district follows it is up to them. If they're
         | not, they're not practicing evidence-based anything. They're
         | ignoring evidence-based guidelines for some other reason.
         | 
         | Whether any US water district is really doing this seems
         | debatable anyway. Maybe this is just a consequence of the poor
         | state of search engines, but every source I can find claiming
         | specific US water supplies contain unsafe levels of chlorine
         | seem to be exclusively limited to companies trying to sell you
         | expensive filtration systems you almost certainly do not need.
        
         | rscho wrote:
         | That some people are sensitive to chlorine should then be
         | scientifically studied, to expand the knowledge on that topic.
         | Counting on individual practitioners to cook up artisanal
         | individualized treatment on their own is both unscientific and
         | the antithesis of what you (and everyone) want.
        
           | tricky777 wrote:
           | Evidence is king.
           | 
           | But hyphoteticaly...
           | 
           | if I'm an outlier, and blind test is made on only me, and
           | reveals that I am sensitive to chlorated water.
           | 
           | ...I would count that as evidence based.
        
           | tomohawk wrote:
           | Where did I say a practitioner should "cook up artisanal
           | treatments"?
           | 
           | That's a strawman, for sure.
           | 
           | Doctors have a lot of education, and gain a lot of experience
           | over time.
           | 
           | What I pointed out is that the studies are not enough. Where
           | they leave off is where a doctor needs to be able to apply
           | their education, experience, and knowledge of the case to
           | make progress. Doctors are trained to apply scientific
           | approaches to bridge the gap between the broad science and
           | the individual patient. The big health co's do not like
           | doctors doing this because it takes time and is expensive.
           | So, they tie their hands because they only want the doctors
           | to focus on the easiest fixes that solve the most problems.
        
         | stonemetal12 wrote:
         | What do you think evidence based means? There is evidence that
         | some people are sensitive to chlorine. In an evidenced based
         | approach it would be considered a possible cause until there is
         | evidence to rule it out. If other issues present similar
         | symptoms and are more likely then they should be tested and
         | ruled out first.
        
           | obscur wrote:
           | Might be wrong, but I think they just mean that when you do
           | large scale trials you aggregate over the population, and
           | determine if the medication had a statistically significant
           | effect. You can get evidence that a subgroup does not react
           | well, but you might not, if that is not your focus.
           | 
           | A key concept and solution here is 'precision medicine',
           | tailoring medicine based on more precise information about
           | the individual.
        
         | dekhn wrote:
         | chloramine is replacing chlorine in municipal treatment.
         | 
         | I'd be amazed if somebody was really sensitive to chlorine, to
         | the point where typical municipal water caused rashes. After
         | all, all of us contain 80grams of it and consume 500mg/day.
        
         | auslegung wrote:
         | I think you're getting down-voted because yourcomment indicates
         | you think this article says that doctors should only be able to
         | use evidence-based approaches. That's not at all with this
         | article is about.
        
       | FabHK wrote:
       | Related: The delicious paper
       | 
       |  _Parachute use to prevent death and major trauma related to
       | gravitational challenge: systematic review of randomised
       | controlled trials_.
       | 
       | > the effectiveness of parachutes has not been subjected to
       | rigorous evaluation by using randomised controlled trials.
       | Advocates of evidence based medicine have criticised the adoption
       | of interventions evaluated by using only observational data. We
       | think that everyone might benefit if the most radical
       | protagonists of evidence based medicine organised and
       | participated in a double blind, randomised, placebo controlled,
       | crossover trial of the parachute.
       | 
       | https://pubmed.ncbi.nlm.nih.gov/14684649/
        
       | caycep wrote:
       | granted, there is the day-to-day human physician "bayesian"
       | evidence-based-medicine...for better or worse...
        
       | qnsi wrote:
       | Medical industry is corruption prone.
       | 
       | Another example: Industry sponsored conferences. Doctors are
       | invited to a 3 day 4 star hotel stay to attend a conference.
       | Technically, talks that are paid shilling are specially marked as
       | sponsored talks.
       | 
       | But are the other doctors, who are getting paid to speak there
       | 100% independent?
       | 
       | Will you be a 100% independent doctor after getting free
       | presents?
       | 
       | Maybe you will. But industry probably found its profitable if
       | they spent millions on these kinds of conferences.
       | 
       | Also lie repeated multiple times makes you believe in, there are
       | psychological studies. So when you spend hour listening how drug
       | X is gold, you might start believing its gold
        
         | sarchertech wrote:
         | My wife's a doctor and the "free presents" she's gotten from
         | conferences are laughable. A 128mb flash drive and a canvas bag
         | are about the best things I've seen.
         | 
         | She's also never gotten a free hotel stay at a conference
         | unless her group was paying for it.
         | 
         | She tells me there are strict (very small) limits on gifts from
         | drug companies.
        
         | Enginerrrd wrote:
         | >Will you be a 100% independent doctor after getting free
         | presents?
         | 
         | >Maybe you will. But industry probably found its profitable if
         | they spent millions on these kinds of conferences.
         | 
         | So... theoretically the industry putting on the conference is
         | also pushing the state of the art pharmaceutically and believe
         | that they have an improvement on the existing standard of care.
         | I don't think it's got anything to do with the presents as much
         | as the message.
        
           | obscur wrote:
           | Seems very unlikely to me that it would not be a combination.
           | We have both rational and irrational parts, conscious and
           | unconscious parts.
           | 
           | I'd venture one does not have to look far in the anthropology
           | literature to find good evidence that gifts just like other
           | favors serves a function in building reciprocal
           | relationships. Since it is likely so fundamental, I have a
           | hard time believing it would not have any effect on the
           | independence of the doctor.
        
           | pessimizer wrote:
           | Nah. Speakers fees are a way to launder direct contributions.
           | There was at least one famous case where the "conference" was
           | done in one of the speakers' living rooms. Imagine getting a
           | speaking fee for speaking extemporaneously in a Florida hotel
           | room with two pharma reps and one other doctor five minutes
           | before you all leave for golf.
        
             | nobody9999 wrote:
             | >Nah. Speakers fees are a way to launder direct
             | contributions
             | 
             | The comparison to money laundering is specious, IMHO.
             | 
             | In the US, at least, there is a database[0] of _any_ value
             | (including monetary and in-kind) exchange between doctors
             | and medical companies.
             | 
             | As such, there is no "laundering" at all. All moneys and
             | in-kind (hotel rooms, meals, swag, etc.) payments are
             | documented and detailed.
             | 
             | Is there an incentive for doctors to favor a particular
             | pharma or medical device company based on those payments?
             | Perhaps. But since (again, at least in the US) such
             | payments are documented and _publicly available_ , it isn't
             | some sort of secret set of payments designed to
             | _surreptitiously_ co-opt doctors.
             | 
             | Sure, some payments (my brother, a physician, received
             | ~US$20,000 in 2020, mostly (~$13,000) from a single
             | consulting fee.
             | 
             | Is my brother favoring the company who paid him $13,000 in
             | 2020? Maybe. But _if and only if_ their products /devices
             | have clear beneficial effects over other products/devices.
             | 
             | What's more, that $20,000 (aside from the consulting fee,
             | it was food/beverage and other in-kind stuff) is a small
             | fraction of his annual income and doesn't make a
             | significant difference in his quality of life.
             | 
             | As such, while there may certainly be doctors who are co-
             | opted/corrupted by medical companies, assuming that the
             | majority of doctors are swayed by such things is iffy at
             | best.
             | 
             | [0] https://openpaymentsdata.cms.gov/
        
         | drewcoo wrote:
         | > Medical industry is corruption prone.
         | 
         | Corruption is incentivized in any for-profit industry.
        
           | ipaddr wrote:
           | And non-for-profit industries
        
             | notriddle wrote:
             | And groups of people who are driven by ideology, rather
             | than profit.
        
       | TeeMassive wrote:
       | Here in Quebec the vaccine passport and the curfew was touted as
       | the pinnacle of "following the science"(tm). Anyone contradicting
       | their usefulness as effective sanitary measures were accused of
       | "spreading misinformation"(tm).
       | 
       | The curfew was implemented twice. The vaccine passport was only
       | recently removed.
       | 
       | Turns out, one FOIA request later, that they never consulted the
       | data scientists of the public health institute. They made it all
       | up.
        
       | cosmotic wrote:
       | This should not be considered evidence that other quack medicines
       | have any superiority over modern medicine.
        
         | trulyme wrote:
         | True. It is just evidence that _sometimes_ modern medicine
         | doesn 't have any superiority over quack medicines either.
        
       | [deleted]
        
       | tsoukase wrote:
       | EBM suggests that swimming in a heated swimming pool (controlled
       | studies) can be the same as swimming in open sea/ocean (applying
       | the result in any possible case)
        
         | FabHK wrote:
         | The distinction you allude to is _so_ well known and understood
         | that there are not only papers about it, but also special words
         | to distinguish them: efficacy (performance of an intervention
         | under ideal and controlled circumstances) and effectiveness
         | (performance under 'real-world ' conditions).
         | 
         | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726789/
         | 
         | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912314/
        
       | smohare wrote:
       | One of the issues I've seen with EBP is that it's often not
       | necessarily science based. That is to say, prior plausibility
       | derived from basic science isn't fully incorporated, ergo undo
       | weight is given to noise. You see with in almost any study of
       | pseudoscientific modalities, where actual efficacy would require
       | a drastic reformation of our fundamental, very well tested models
       | of the natural world. Why should a particularly strong one-off
       | result for my made up pain treatment be afforded the same stature
       | as that of an pharmacological agent with clear physiological
       | pathways?
        
         | rscho wrote:
         | Evidence-based medicine does incorporate prior evidence for
         | causal evaluation. Check out the "Bradford criteria". They're
         | the basis of causal evaluation in epidemiology.
        
       | sammalloy wrote:
       | One thing that has always stuck with me in regards to this topic
       | is the lack of medical research in areas that need it but don't
       | get it because there isn't any money in it. One area that comes
       | to mind is feline urinary tract disease. Many years ago, I had a
       | cat who kept coming down with this, and the vet(s) were at a
       | total loss as to how this kept happening. So I decided to open up
       | the literature and plough into it as a layman with no knowledge
       | about animal medicine. Within the space of a single hour I
       | quickly learned that many of the most common diseases facing
       | animals have very little research behind them and a lot of
       | unknowns. Which brings me back to one of the main points of the
       | author. If the neoliberal approach to research is only going to
       | focus on what is profitable to treat, then medical science as a
       | whole has backed itself into a dark corner.
        
       | rafaelero wrote:
       | There is one simple solution: replication. Stop complaining and
       | start replicating.
        
       | chicob wrote:
       | After reading this article I find only one problem with it, and
       | that is the title.
       | 
       | The problem the authors have so perfectly characterized has
       | nothing to do with the emphasis on evidence that medicine
       | requires, but on the distortion imposed on the system by large
       | pharmaceutical companies.
       | 
       | The reality of the obstacles standing in the way of rigorous
       | testing for drug or therapy effectiveness does not make evidence-
       | based medicine an illusion.
       | 
       | In fact, the authors actually make a strong argument in favor of
       | evidence-based medicine, by stating the need to acknowledge these
       | biases. And that the reason for all these biases is greed.
        
         | pmoriarty wrote:
         | The article shows how what passes for evidence based medicine
         | is an illusion.
         | 
         | The "evidence" is biased and corrupted by corporations, as are
         | many of the people who evaluate it, set the standards, and make
         | decisions.
        
         | xmprt wrote:
         | I think you're misunderstanding the title. It's not that
         | evidence based medicine has problems. It's that there are
         | problems with how evidence based medicine is currently
         | practiced which gives it the appearance of evidence based
         | medicine while actually not being anything close, that is, an
         | illusion.
        
         | ouid wrote:
         | Stop calling it greed. It's corruption and regulatory capture.
         | Both of these, unlike greed, are problems that can be solved.
        
           | verisimi wrote:
           | > It's corruption and regulatory capture.
           | 
           | Absolutely!
           | 
           | > Both of these, unlike greed, are problems that can be
           | solved.
           | 
           | Hmm... I don't see how. Pharmaceutical companies (and all
           | other corporations, for that matter) pay the lobbyists to
           | write the legislation that is then duly waved through. This
           | is to say the governance structure itself is captured.
           | 
           | In fact, I think it always was captured, but only that we
           | have laboured erroneously under the idea that it was there to
           | help us. And creating that illusion is the job of education
           | and corporate media.
           | 
           | Until we are disabused of the idea that government is
           | anything other than a parasitical, wealth extraction process,
           | that no one has the right to forcibly take another's money
           | (tax) and to do so means to be subjugated to a type of
           | slavery, that legislation has very little to do with
           | morality, that we are given our opinions first at school with
           | 18 years or so of indoctrination which is then topped up via
           | screens and newspapers - until we recognise that we are
           | sovereign beings that will stand up for what is right and
           | refuse what is wrong, we're not going to change much.
        
       | twofornone wrote:
       | >Scientific progress is thwarted by the ownership of data and
       | knowledge because industry suppresses negative trial results,
       | fails to report adverse events, and does not share raw data with
       | the academic research community.
       | 
       | Not to derail the thread but this nicely encapsulates my
       | reservations toward the COVID vaccines, and why I think mandates
       | are egregiously unethical. The raw clinical trial data is still
       | effectively a secret between pharma and the FDA, and both are
       | under immense financial/political pressure to release a "safe and
       | effective" product, not to mention the incestuous relationship
       | between the ostensibly independent FDA and big pharma.
        
         | sebmellen wrote:
         | I find it very discomfiting that anyone suspicious of the
         | COVID-19 vaccine _(by that I mean the COVID vaccine /spike
         | protein in particular)_ is branded as anti-vax. I say this as a
         | vaccinated person who caught a heavy bout of COVID. I suppose
         | I'm grateful for the vaccine, but mandates scare me.
        
           | tricky777 wrote:
           | as chistians say, "turn the other cheek". (labeling did not
           | made much harm, dont get too ivested in that)
           | 
           | reality is, that we can't have policy/public sentiment that
           | is nuanced. (I heard it breaks the timecontinuum)
           | 
           | Find the silver lining and move on. I'm just glad that, a lot
           | of people are in pro-vaccine side overall. While in your case
           | it is a bit of mob mentality (mostly appeal to authority +
           | optimism + jugde_dissagreeing_side), in the long run "pro
           | vaccines" is (even if only on average) leaps and bounds and
           | couple of parsecs better than "no vaccines".
        
           | [deleted]
        
           | specialist wrote:
           | Do you school-aged children? Pets?
        
         | simonh wrote:
         | To a point that's understandable, based just on trials it's
         | reasonable to be skeptical of the results. However once the
         | vaccines have been in mass distribution and there is copious
         | evidence of their efficacy and the extreme rarity of adverse
         | affects, I don't think it's reasonable anymore.
         | 
         | The mandates only came in once enough of the population had
         | been inoculated to make a requirement possible. At that point
         | the initial trials are a footnote compared to the results from
         | mass vaccinations. IMHO it's just not reasonable for that
         | objection to carry any weight. There may be other reasons, of
         | course.
        
           | cuspy wrote:
           | The problem with this line of reasoning is that there is a
           | huge difference between controlled trials (which are
           | obviously imperfect themselves) and post-hoc analyses of
           | uncontrolled real-world outcomes. There's a big leap of faith
           | in trusting our public health authorities' ability to
           | accurately measure and faithfully represent the real
           | situation.
           | 
           | Just to name one small issue, our only measurements of
           | vaccine efficacy are case counts, covid hospitalizations and
           | covid deaths. Each one of these measurements is confounded by
           | population-level differences in testing rate, testing polices
           | (ie routine testing on entrance to hospital), PCR cycle
           | count, and many other factors. There is no longer a monitored
           | control group, so we can't ever account for any group-level
           | differences or confounds. I've seen no attempt to address
           | these issues.
           | 
           | We also have no access to reliable data about confirmed
           | adverse effects. A year later, it is still very hard for a
           | person to quantitatively assess his/her own age-stratified
           | risk/benefit tradeoff, even with the confounded efficacy
           | measures.
           | 
           | So, given all that, why isn't skepticism reasonable anymore?
        
             | simonh wrote:
             | I really don't see why there is a huge leap of faith with
             | coronavirus vaccines, but not with the many safe, effective
             | vaccines and medications we all benefit from throughout our
             | lives.
             | 
             | Have you always felt this way about the medical profession?
             | Have you any specific reasons to doubt the medical
             | profession and it's institutions, across many nations and
             | accreditation agencies, now in particular?
        
             | fabian2k wrote:
             | The effect of vaccinations is huge here, especially if we
             | focus on deaths and hospitalisations in elderly people.
             | There are of course issues with using data that only
             | observed and not part of a strict randomized and blinded
             | trial. But the difference observed in many different
             | studies between unvaccinated and fully vaccinated is simply
             | so enormous that it doesn't really leave any room for
             | doubt.
             | 
             | The effect of the vaccines is so huge that you only have to
             | look at a Kaplan-Meier plot and will immediately see the
             | huge difference. And we don't have a single study here, we
             | have a lot of different ones that all indicate that the
             | vaccines are very effective and safe.
        
               | cuspy wrote:
               | I would trust sound data and transparent analyses showing
               | age-stratified risk analyses if they existed. With all
               | respect, what you just wrote is essentially hand-waving
               | and talking past what I wrote. High effectiveness for
               | elderly people (which I find plausible but also still
               | deeply confounded by testing rate differences) in no way
               | justifies mandates for people in their early 20s.
               | 
               | In some proportion of hospitals, when someone who is not
               | vaccinated goes to hospital for any reason, they are
               | tested for COVID-19. If found positive this is counted as
               | a COVID-19 hospitalization. We have no access to the
               | precise rate of these incidental hospitalizations. In
               | some of these hospitals, it is the policy that vaccinated
               | people who go to the hospital are NOT routinely tested
               | unless they have symptoms. If this is the policy at a
               | substantial number of hospitals, it could dramatically
               | change the "effect size" of the measurements that we are
               | talking about. The same issues essentially applies to
               | COVID-19 deaths and cases.
               | 
               | Large effect size alone generally isn't convincing when
               | you're using such fundamentally confounded sampling
               | procedures, merged age-groups with wildly different risk
               | profiles, and data aggregated across long time-windows
               | with different population sizes.
        
           | tricky777 wrote:
           | Even if this particular vaccine was ok (and I still feel fine
           | after the booster), the process seems shady if results are
           | kept secret (having good processes is very important.
           | remember "checks and balances")
        
             | simonh wrote:
             | Trial data is kept confidential due to the risk that access
             | to the data or information about it by research teams could
             | influence or bias the design or conduct of further trials.
             | This is routine in medical trials based on hard won lessons
             | from previous problems due to biased trials and conflicts
             | of interest.
             | 
             | It might seem shady if you don't know the reasons for it
             | (what are they hiding?). I understand that, but the fact is
             | this is standard practice and releasing the raw data would
             | be reckless and irresponsible.
        
           | twofornone wrote:
           | >and the extreme rarity of adverse affects, I don't think
           | it's reasonable anymore
           | 
           | There's a major caveat here, sudden and obvious adverse
           | effects are rare. The subtle and possibly long term ones are
           | still unknown. It took some 5-10 years before Thalidomide was
           | found to cause severe birth defects, for example.
        
             | simonh wrote:
             | Thalidomide isn't a vaccine so that hardly seems relevant.
             | We have extensive experience with many vaccines across huge
             | populations and no reason to expect these ones to be any
             | more dangerous than the others. Also it seems somewhat
             | unlikely that any possible side effects, if they were to
             | manifest, could possibly be as bad as millions of deaths
             | and tens of millions with long term complications .
             | 
             | The vast majority of people objecting to covid vaccines
             | have no history of vaccine denial, and no good reason to
             | suspect the covid vaccines are particularly dangerous
             | compared to the many vaccines they have accepted previously
             | without a thought or any interest in their history, testing
             | or method of action. It's politically motivated from start
             | to finish and has nothing to do with the medical facts.
        
             | fabian2k wrote:
             | It took 4 years for thalidomide until it was removed from
             | the market. And this is the text book case that triggered
             | more stringent regulation for drugs.
        
             | _jal wrote:
             | > The subtle and possibly long term ones are still unknown
             | 
             | So just say you won't take it and be done, because there is
             | no mechanism that can satisfy you.
        
         | fabian2k wrote:
         | The original clinical trials are essentially irrelevant now for
         | the vaccines, we have a lot more data from using the vaccines
         | in the real world now. Of course that data is not randomized
         | and double-blind, but because of the sheer numbers you can
         | still do very good science on this. The original trials are
         | also simply outdated because the virus changed, we're several
         | big variants later now.
         | 
         | There are also more agencies than just the FDA that approved
         | these vaccines, if you don't trust them specifically.
         | 
         | Publication bias is a real issue, and I'm annoyed that all
         | efforts to reduce it seem to be rather ineffective. The ideas
         | behind requiring registration of trials is good, but it doesn't
         | do much if you don't actually police the rules. But the COVID
         | vaccines got such enormous amounts of attention that it really
         | doesn't matter in this specific case.
        
           | twofornone wrote:
           | > Of course that data is not randomized and double-blind, but
           | because of the sheer numbers you can still do very good
           | science on this
           | 
           | But is the science being done "good" considering that the
           | political and social pressures around reporting of negative
           | results/adverse effects still exists? How do you get good
           | data on adverse events if vaccine recipients don't even think
           | to correlate strange symptoms x weeks or months post
           | vaccination with the vaccine? How would you detect an
           | autoimmune disorder with vague and nonspecific symptoms, for
           | example, when doctors also are unwilling or unable to collect
           | relevant data out of a combination of bias and ignorance?
           | 
           | It's a double whammy, because of the novelty we don't know
           | exactly what we're looking for, and because of
           | stigma/political pressure we are arguably not looking hard
           | enough. Being labeled an anti-vaxxer is effectively career
           | and social suicide, how many researchers are willing to stick
           | out their necks, especially when rigorous proof would take
           | years of research and funding to aggregate?
        
             | fabian2k wrote:
             | There was a very rare side effect in the Astra Zeneca
             | vaccine that was discovered quite quickly. Not in the
             | original trials as they are simply not powerful enough to
             | detect side effects that rare, but in later observations.
             | We also pretty quickly figured out that the risk is age-
             | related, and many regulating authorities reacted based on
             | that and adjusted the recommendations.
             | 
             | To me this is pretty good evidence that the existing
             | mechanisms for detecting rare side effects work in general.
             | One can argue about the details in this case on how exactly
             | the authorities responded, and I think also reasonably
             | disagree on how to weigh the risk/benefit in this
             | particular case for specific age groups. But those are much
             | more difficult questions based on inherently fuzzy data due
             | to the low frequency of this serious side effect. But the
             | detection itself worked well, and also produced very quick
             | reactions.
        
             | hgomersall wrote:
             | What? There was lots of work looking at side effects of the
             | vaccines. The AZ vaccine was paused in several places
             | whilst rare and unexplained blood clots were better
             | understood. It was only because the huge numbers of
             | recipients that such information was available. What point
             | are you trying make? That somehow scientists are not
             | willing to raise problems with the vaccines? That's
             | demonstrably not true.
             | 
             | What is also demonstrably true is that the death rate from
             | COVID is now negligible for those vaccinated. Might there
             | be some super rare interaction we don't know about? For
             | sure, but there's also as likely to be super rare
             | interactions with COVID itself, or whatever crank treatment
             | of choice replaces a vaccine.
        
       | rscho wrote:
       | Evidence-based medicine, more than the indeed important issues
       | raised in the article, is mostly impaired by the absolutely
       | abysmal average quality of clinical research papers. The
       | absolutism of higher-ups combined with their unrivalled (in the
       | scientific world) statistical ignorance is hurting science more
       | than anything else. And there's a reason to that: MDs are not
       | scientists. We're highly-skilled workers, and more of the blue-
       | collar kind.
        
         | dr_dshiv wrote:
         | Disagree. Think your standards are too high.
        
         | mananaysiempre wrote:
         | > We're highly-skilled workers, and more of the blue-collar
         | kind.
         | 
         | While it's a bit of a problem that sometime during the last
         | century a skilled profession got equated with a research one (I
         | remember hearing somewhere that a commercial pilot's education
         | costs about as much as a tenured professor's, and it seems
         | plausible to me), there's also the fact that the people you
         | call "workers" are more distanced from research than they used
         | to be; my impression is that this is even stronger among
         | engineers than it is among medical professionals, but I can
         | hardly claim any deep knowledge here.
         | 
         | MIT is originally an engineering college, so is the Ecole
         | polytechnique, and the Ecole normale is a school for
         | bureaucrats. Cauchy's seminal work on wave propagation was
         | presented at the French academy, had an epigraph from Virgil
         | ("how many waves / come rolling shoreward from the Ionian
         | sea"), and was signed by "Mr. Augustin-Louis Cauchy, road and
         | bridge engineer" (this being the title the Polytechnique
         | awarded him).
         | 
         | It used to be normal (AFAIK) for articles in medical journals
         | to be essentially "hey, look what a weird thing happened with
         | this recent patient of mine", and some of seminal (if not the
         | most high-brow) mathematics journals started as "hey, solve
         | this problem I have recently done / want to know the answer to
         | ... if you're not chicken to try".
         | 
         | What happened to all of this was, in a word, specialization--
         | necessitated in part by the exhaustion of low-hanging fruit and
         | raising of epistemic standards, so not entirely pointless, but
         | I have to admit the comparative conservatism of medicine in
         | this regard always looked more hopeful to me than the, at
         | times, raging anti-intellectualism of engineers or the fiddly,
         | illogical, invented world of law.
         | 
         | Certainly medicine is more engineering than science in that it
         | is driven more by immediate goals than by the pursuit of truth
         | alone (not the only possible definition of science, but a
         | useful distinction when it comes to the feeling of the field,
         | cf the 50s adage about physics and military physics being like
         | music and military music). And I certainly won't say you're
         | wrong. But I'm sad, and I can't help feeling the drive for
         | industrialization has done a disservice to us, scientists and
         | craftsmen both.
        
           | pmoriarty wrote:
           | _" raging anti-intellectualism of engineers"_
           | 
           | What makes you think engineers are anti-intellectual?
           | 
           | Engineering is an intellectual discipline, after all.
        
             | lazide wrote:
             | I suspect the poster is referring to anti the type of
             | Intellectualism which is pure theory (or similar) and not
             | application focused.
             | 
             | Which I'd agree with - most Engineers tend to hate that
             | kind of thing.
        
             | mananaysiempre wrote:
             | > What makes you think engineers are anti-intellectual?
             | 
             | FWIW, I've encountered the thing I call anti-
             | intellectualism here among experimental physicists as well,
             | and even in some theorists and mathematicians as well, to
             | varying degrees. I don't mean being stupid or not using
             | your brain for work; I'm sure some of the people I'm
             | thinking of here are much smarter than me and/or have
             | contributed much more to society than I ever will. I'm not
             | thinking of _all_ engineering or science people, either;
             | the maths teacher I had in high school is perhaps the
             | strongest opposite of this stereotype I know.
             | 
             | What I mean is a certain lack of wonder and ... suspension
             | of disbelief(?) when it comes to other kinds of
             | intellectual pursuits (sciences, arts, humanities,
             | philosophy, mathematics), like a feeling you're doing Real
             | Work while those other quacks do pointless things to amuse
             | themselves, and are not even particularly successful at
             | that. "Shut up and calculate", if brought out among people
             | who are past the basic level of understanding of the
             | subject in question, is a manifestation of this (even
             | though the originator of the saying in the context of
             | quantum mechanics, David Mermin, is now a proponent of the
             | "quantum Bayesianism" school of philosophical thought).
             | Lest it seem that I'm dunking on physicists here, the "Two
             | cultures" essay and Hardy's "Apology" also contain some of
             | this.
             | 
             | If you've read the book, the shortest definition is perhaps
             | to say that my "anti-intellectualism" is the opposite of
             | _The Glass Bead Game_ , even if Hesse intended it as his
             | anti-Enligtenment manifesto.
             | 
             | And I cannot say this sort of skepticism is _always_ wrong
             | --that way lies _Fashionable Nonsense_ and New Age
             | mysticism, and epistemic relativism scares me like little
             | else. We do owe some advances in quantum foundations to New
             | Age people, though, so sneering in that direction might not
             | be right either.
             | 
             | (If you think that this anti-intellectualism thing and the
             | complement of the hacker spirit seem remarkably similar,
             | you're right.)
        
               | pmoriarty wrote:
               | I'd call that intellectual snobbery and scientism rather
               | than anti-intellectualism.
               | 
               | This is especially evident towards fields one knows
               | little about, towards the so-called "soft sciences" and
               | the humanities.
        
             | kelseyfrog wrote:
             | It's easy to find them. Let us call them out using the
             | siren song.
             | 
             | Psychology and sociology are just as much sciences as
             | mathematics, computer science, physics, chemistry, and
             | biology.
        
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