This would make doctors’ lives a living hell and I don’t think it would be very good for patients either.
No matter how bad a drug is, there are always going to be people who get better by coincidence when they’re on it. No matter how good a drug is, there are always going to be people who weren’t even diagnosed with the right disease so of course the drug isn’t going to cure them. No matter how safe a drug is, there’s always going to be someone who coincidentally got a rash or a heart attack or something at the same time ey started the drug.
All of these people post on Internet forums, and people who have the most extreme and atypical experiences post on Internet forums the most. This is already a big problem for doctors—they prescribe Drug X, the patient goes home, looks it up on the Internet, and finds a page by some crank who had a heart attack when on Drug X and is now leading a campaign against it, and the doctor has to try to communicate that there have been big studies which show the drug has no greater heart attack rate than in the general population to people who may not be fully aware of the difference between scientific and anecdotal evidence.
Evaluating a drug on anything other than the results of randomized clinical trials, if such trials are available, is a bad idea and gets people killed. When no randomized clinical trials are available, I suppose anecdotal evidence can be useful, but only if you’re an exceptionally good rationalist who can filter out the chaff.
Also, I think there’s a big difference between anecdotes from people you know and anecdotes from strangers. People you know are a random sample: if you saw Uncle Jim start trying Wellbutrin, and you observed the effects, he’s essentially a scientific study with a sample of one. Getting anecdotes from people on the Internet self-selects for people who want to talk about their experience.
Maybe the people who get better on a certain drug become evangelists for it all over the Internet, while people who don’t get better on it just consider it one more failed drug out of dozens and never talk about it. Maybe people who get a side effect are enraged at the drug company and talk about it every chance they get while people who do fine don’t talk as much. Maybe people who are depressed don’t have the energy to post on health forums, so if you ask whether an antidepressant works you’re only going to get the people who aren’t depressed anymore, who are all going to say that it did. Maybe 100% of people on the forum who got an emergency heart attack treatment will say it works, because the rest of them are all dead.
The human tendency to trust a guy named pRoZaCuSeR331 they met on the Internet over the results of meticulously-crafted meta-analyses is an amazing thing, and I’d be wary of doing anything that might further encourage it.
The only cases in which I think this is useful are cases like erowid and nootropics, where something is so uncommon or illegal that no one’s bothered to do any formal investigations on it.
People you know are a random sample: if you saw Uncle Jim start trying Wellbutrin, and you observed the effects, he’s essentially a scientific study with a sample of one.
If he’s your blood-related uncle, he’s not just random, he’s better than random (when predicting the effects on you and not some arbitrary person).
That’s a very good point. People on the internet are not representative. (This is why I doubt that this can replace conventional medical science.)
But I don’t know how you can choose to go on a medication without getting some sense of what it does, from someone who isn’t your doctor. It seems like jumping into the abyss. Especially with new medications or medications for things that aren’t well understood (like the brain.)
This would make doctors’ lives a living hell and I don’t think it would be very good for patients either.
No matter how bad a drug is, there are always going to be people who get better by coincidence when they’re on it. No matter how good a drug is, there are always going to be people who weren’t even diagnosed with the right disease so of course the drug isn’t going to cure them. No matter how safe a drug is, there’s always going to be someone who coincidentally got a rash or a heart attack or something at the same time ey started the drug.
All of these people post on Internet forums, and people who have the most extreme and atypical experiences post on Internet forums the most. This is already a big problem for doctors—they prescribe Drug X, the patient goes home, looks it up on the Internet, and finds a page by some crank who had a heart attack when on Drug X and is now leading a campaign against it, and the doctor has to try to communicate that there have been big studies which show the drug has no greater heart attack rate than in the general population to people who may not be fully aware of the difference between scientific and anecdotal evidence.
Evaluating a drug on anything other than the results of randomized clinical trials, if such trials are available, is a bad idea and gets people killed. When no randomized clinical trials are available, I suppose anecdotal evidence can be useful, but only if you’re an exceptionally good rationalist who can filter out the chaff.
Also, I think there’s a big difference between anecdotes from people you know and anecdotes from strangers. People you know are a random sample: if you saw Uncle Jim start trying Wellbutrin, and you observed the effects, he’s essentially a scientific study with a sample of one. Getting anecdotes from people on the Internet self-selects for people who want to talk about their experience.
Maybe the people who get better on a certain drug become evangelists for it all over the Internet, while people who don’t get better on it just consider it one more failed drug out of dozens and never talk about it. Maybe people who get a side effect are enraged at the drug company and talk about it every chance they get while people who do fine don’t talk as much. Maybe people who are depressed don’t have the energy to post on health forums, so if you ask whether an antidepressant works you’re only going to get the people who aren’t depressed anymore, who are all going to say that it did. Maybe 100% of people on the forum who got an emergency heart attack treatment will say it works, because the rest of them are all dead.
The human tendency to trust a guy named pRoZaCuSeR331 they met on the Internet over the results of meticulously-crafted meta-analyses is an amazing thing, and I’d be wary of doing anything that might further encourage it.
The only cases in which I think this is useful are cases like erowid and nootropics, where something is so uncommon or illegal that no one’s bothered to do any formal investigations on it.
If he’s your blood-related uncle, he’s not just random, he’s better than random (when predicting the effects on you and not some arbitrary person).
That’s a very good point. People on the internet are not representative. (This is why I doubt that this can replace conventional medical science.)
But I don’t know how you can choose to go on a medication without getting some sense of what it does, from someone who isn’t your doctor. It seems like jumping into the abyss. Especially with new medications or medications for things that aren’t well understood (like the brain.)