Maybe this exists already; maybe it would be drastically illegal; but it would be awesome.
I want a forum where people compare their experiences with pharmaceuticals. You add an entry that includes: what condition you have, what drug you took, what the side effects were, how well the drug worked. Some of these are pull-down menus and ratings on a built-in scale, but there’s also room for your own commentary. The site runs stats on the drugs based on user data, and also provides a place to chat and vent about the success or failure of the medications.
I came to this idea from two perspectives. One, I’m a twenty-something woman. Everyone I know has a different experience with birth control; there are a variety of pills, and girls talk about a corresponding variety of side effects. But that’s all anecdotal. What your doctor will tell you is based on the side effects in the clinical trials (and is calculated to reassure you.) My doctor told me, for instance, that if you don’t get any side effects in the first three months, you never will—but this happens to run counter to direct experience. I wish I could aggregate all the personal stories about birth control and other drugs. (Medications for mental illness also seem to be common among people my age, and there’s a corresponding variety of stories about side effects and success rates, some very positive and some very negative. Wouldn’t it be really useful to compare experiences with lots of people before making a decision about that?)
The other perspective I come from here is as someone with a passing interest in statistics and science methodology. Pharmaceuticals are tested in scientifically controlled but small studies. It would be useful, as a sanity check, to see if really large quantities of unscientific internet data come up with roughly the same results. We now have the opportunity to do what I think of as “Big & Sloppy” science—it may be sloppy, but its very enormity might make it useful. Sergey Brin’s search for a Parkinson’s cure is based on self-reported internet data. It’s not the way medical researchers conduct tests, but it takes advantage of the vast amount of anecdotal information that so far medicine doesn’t have a great way to harness. People were experiencing health benefits from aspirin for decades before scientists observed a link to heart disease. I’m not as sure as Brin is that “Big & Sloppy” medical science can replace the traditional sort, but it certainly ought to generate insights and hypotheses.
I also suspect that the “Big & Sloppy” approach makes for good advice on choosing pharmaceuticals. In practice, a lot of us do make medical decisions at least partly based on anecdote (Uncle Jim tried Wellbutrin and it made him fat.) Anecdote, at least, has no agenda, compared to professional advice—“Uncle Jim” really did get fat. But logically, if you would consider anecdotes from people you know, you should be more willing to consider aggregated anecdotal information from tens of thousands of people.
So: does this already exist? Is it illegal? And, out of curiosity, what would one need to do to build it? (to create a forum section, user identities, surveys, and statistics.)
What I wish the internet had: pharmaceutical forum
Maybe this exists already; maybe it would be drastically illegal; but it would be awesome.
I want a forum where people compare their experiences with pharmaceuticals. You add an entry that includes: what condition you have, what drug you took, what the side effects were, how well the drug worked. Some of these are pull-down menus and ratings on a built-in scale, but there’s also room for your own commentary. The site runs stats on the drugs based on user data, and also provides a place to chat and vent about the success or failure of the medications.
I came to this idea from two perspectives. One, I’m a twenty-something woman. Everyone I know has a different experience with birth control; there are a variety of pills, and girls talk about a corresponding variety of side effects. But that’s all anecdotal. What your doctor will tell you is based on the side effects in the clinical trials (and is calculated to reassure you.) My doctor told me, for instance, that if you don’t get any side effects in the first three months, you never will—but this happens to run counter to direct experience. I wish I could aggregate all the personal stories about birth control and other drugs. (Medications for mental illness also seem to be common among people my age, and there’s a corresponding variety of stories about side effects and success rates, some very positive and some very negative. Wouldn’t it be really useful to compare experiences with lots of people before making a decision about that?)
The other perspective I come from here is as someone with a passing interest in statistics and science methodology. Pharmaceuticals are tested in scientifically controlled but small studies. It would be useful, as a sanity check, to see if really large quantities of unscientific internet data come up with roughly the same results. We now have the opportunity to do what I think of as “Big & Sloppy” science—it may be sloppy, but its very enormity might make it useful. Sergey Brin’s search for a Parkinson’s cure is based on self-reported internet data. It’s not the way medical researchers conduct tests, but it takes advantage of the vast amount of anecdotal information that so far medicine doesn’t have a great way to harness. People were experiencing health benefits from aspirin for decades before scientists observed a link to heart disease. I’m not as sure as Brin is that “Big & Sloppy” medical science can replace the traditional sort, but it certainly ought to generate insights and hypotheses.
I also suspect that the “Big & Sloppy” approach makes for good advice on choosing pharmaceuticals. In practice, a lot of us do make medical decisions at least partly based on anecdote (Uncle Jim tried Wellbutrin and it made him fat.) Anecdote, at least, has no agenda, compared to professional advice—“Uncle Jim” really did get fat. But logically, if you would consider anecdotes from people you know, you should be more willing to consider aggregated anecdotal information from tens of thousands of people.
So: does this already exist? Is it illegal? And, out of curiosity, what would one need to do to build it? (to create a forum section, user identities, surveys, and statistics.)