You don't want to rely on studies in medical journals because their conclusion-drawing methodologies are haphazard.
I dispute none of this, but so far as I can tell or guess, the main thing powering the superior statistical strength of PatientsLikeMe is the fact that medical researchers have learned to game the system and use complicated ad-hoc frequentist statistics to get whatever answer they want or think they ought to get, and PatientsLikeMe has some standard statistical techniques that they use every time.
Also, I presume, PatientsLikeMe is Bayesian or Bayes-like in that they take all available evidence into account and update incrementally, while every medical experiment is a whole new tiny little frequentist universe.
This is not really an article about PatientsLikeMe being strong, it is an article about the standard statistical methods of academic science being weak and stupid.
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This is going to sound silly, but...could someone explain frequentist statistics to me?
Here's my current understanding of how it works:
We've got some hypothesis H, whose truth or falsity we'd like to determine. So we go out and gather some evidence E. But now, instead of trying to quantify our degree of belief in H (given E) as a conditional probability estimate using Bayes' Theorem (which would require us to know P(H), P(E|H), and P(E|~H)), what we do is simply calculate P(E|~H) (techniques for doing this being of course the principal concern of statistics texts), and then place H into one of two bins depending on whether P(E|~H) is below some threshold number ("p-value") that somebody decided was "low": if P(E|~H) is below that number, we put H into the "accepted" bin (or, as they say, we reject the null hypothesis ~H); otherwise, we put H into the "not accepted" bin (that is, we fail to reject ~H).
Now, if that is a fair summary, then this big controversy between frequentists and Bayesians must mean that there is a sizable collection of people who think that the above procedure is a better way of obtaining knowledge than performing Bayesian updates. But for the life of me, I can't see how anyone could possibly think that. I mean, not only is the "p-value" threshold arbitrary, not only are we depriving ourselves of valuable information by "accepting" or "not accepting" a hypothesis rather than quantifying our certainty level, but...what about P(E|H)?? (Not to mention P(H).) To me, it seems blatantly obvious that an epistemology (and that's what it is) like the above is a recipe for disaster -- specifically in the form of accumulated errors over time.
I know that statisticians are intelligent people, so this has to be a strawman or something. Or at least, there must be some decent-sounding arguments that I haven't heard -- and surely there are some frequentist contrarians reading this who know what those arguments are. So, in the spirit of Alicorn's "Deontology for Cosequentialists" or ciphergoth's survey of the anti-cryonics position, I'd like to suggest a "Frequentism for Bayesians" post -- or perhaps just a "Frequentism for Dummies", if that's what I'm being here.
Is that not precisely the problem? Often, the H you are interested in is so vague ("there is some kind of effect in a certain direction") that it is very difficult to estimate P(E / H) - or even to define it.
OTOH, P(E / ~H) is often very easy to compute from first principles, or to obtain through experiments (since conditions where "the effect" is not present are usually the most common).
Example: I have a coin. I want to know if it is "true" or "biased". I flip it 100 times, and get 78 tails.Now how do I estimate the probability of obtaining this many tails, knowing that the coin is "biased"? How do I even express that analytically? By contrast, it is very easy to compute the probability of this sequence (or any other) with a "non-biased" coin.
So there you have it. The whole concept of "null hypotheses" is not a logical axiom, it simply derives from real-world observation: in the real world, for most of the H we are interested in, estimating P(E / ~H) is easy, and estimating P(E / H) is either hard or impossible.
P(H) is silently set to .5. If you know P(E / ~H), this makes P(E / H) unnecessary to compute the real quantity of interest, P(H / E) / P(~H / E). I think.