*Really* Stupid Social Health Site
The idea behind rateadrug.com is for users to rate drugs.
Our goal is to provide unique user-generated data on side effects and subtle side effects of medications. We want to know how these prescription drugs make you feel.
I’ve seen stupid applications of social media in healthcare, but this may take the cake as the dumbest I’ve seen in a good while.
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April 26th, 2009 at 3:16 am
Why do you hate Web 2.0 and Americans who take drugs?
April 26th, 2009 at 4:15 am
I think the issue is more that proper information on a drug comes through evidence based medicine rather than Web 2.0 internet sites. I would prefer a double blind controlled study to anonymous web postings – especially when it comes to drugs.
April 26th, 2009 at 4:18 am
Ian- Yes. Precisely.
April 26th, 2009 at 4:44 am
People have been using the internet to share personal health experiences since there was an internet. It didn't have the "socmed" or "2.0" name, but things like the alt.support newsgroups go back a really long way. This past year I've had to start taking prescription meds for chronic conditions for the first time and while as a medical librarian I did dutifully read the studies on the drugs I was on and others in the same class, I also did end up going onto disease-focused online user forums to find out from other people how to mitigate side effects – things my doctor either didn't know or didn't have time to discuss. I do think the rate-a-drug site is clumsy. For the meds I'm on, they have so few reports it's pretty much useless, and their metadata doesn't seem well controlled – I found duplicate entries for the same thing with different data. The site could probably have been much better done by a group with real data to hook into like USP or something like that. But I'm really not surprised a site like this has come along. I'm very curious as to who's really behind it and what the agenda and business plan are.
April 26th, 2009 at 5:50 am
While this site (and indeed the concept generally) may be imperfect that does not mean it lacks value. Every time a patient takes a drug that generates evidence. True, it may not be the 'traditional' form of evidence but it's still evidence. Obviously, the trick is how to capture this evidence to minimise bias. I remember years ago discussing a drug that clinicial trials had shown great promise. The general practitioner was wondering 'if this drug is evidence based, why are my patients not responding?'. Trial data is part of the picture, patient response in the real world is another.
April 26th, 2009 at 6:17 am
It wouldn't be necessarily bad if this site would indeed gather "unique user-generated data on side effects and subtle side effects of medications", because it is not easy to find evidence on HARM. However, all I can see at their homepage are "success stories" and these are quite meaningless (for the public), biased and perhaps untrue.
April 26th, 2009 at 2:50 pm
True, but what about finding possible side effects that could be looked for in a double blind controlled study? How do side effects of existing drugs get checked? Yes, this can get complicated and involve ethical issues as well as balancing effects verse side effects and who decides.
April 26th, 2009 at 6:34 pm
Jon, self-selecting users contributing feedback in an uncontrolled setting are not providing evidence. "Anecdotal evidence" is not evidence.
April 26th, 2009 at 6:49 pm
I never suggested self-selection was a good idea and I wasn't suggesting that 'rate a drug' had it right.
However, anecdotal evidence is clearly a form of evidence. However, I think you're indicating that it's not robust evidence (and I concur).
The point of my comment was as much to suggest that we could at least explore a mechanism to ensure user experience is captured in as least a biased way as possible.
April 26th, 2009 at 7:15 pm
And my point is that double blind studies ARE the best mechanism to ensure user experience is captured in the least biased way possible.
April 26th, 2009 at 7:31 pm
They are currently deemed as the best trial, but they are far from perfect. Therefore, to close our minds and not look for improvements is hardly in keeping with the history of science. Science is about exploration and to not explore an area because we (the current keepers of knowledge) feel it is unlikely to yield benefits is not something I'm comfortable with.
April 26th, 2009 at 8:06 pm
Science is about empirical evidence, not survey data. To call comments on drugs from self-selecting users in uncontrolled conditions "evidence" is like calling creationism "science" or calling homeopathy "medicine."
April 26th, 2009 at 8:57 pm
Frank, there are a lot of sites that let users look up side effects that are found to be statistically significant in studies.
April 27th, 2009 at 1:18 pm
Although the RateADrug website may not be the best way to do it, gathering patients' experiences on how treatments affect them can surely be valuable – alongside evidence-based medicine of course.
At Cases Network (http://casesnetwork.com) one of our aims is to publish case reports of side effects that may otherwise be unreported. Our case reports are written by doctors, but we encourage patients to include their own perspective in the article. All are peer reviewed before they are published, and are included in our forthcoming Cases Database, which will let doctors (and patients) search to find reports of side effects linked to a drug they are taking.
PatientsLikeMe (http://www.patientslikeme.com) also collects day by day reports from patients with chronic illnesses, including feedback on their treatments.
There are certainly problems with RateADrug.com, but with the right approach to gathering the data, patients' feedback on drug treatments can provide valuable information to complement evidence-based medicine – but of course should not be used in place of EBM.
April 27th, 2009 at 5:26 pm
Laika, right – I mean, the files containing the adverse reactions reported to the FDA aren't exactly accessible/user friendly. If this allowed better access to info on the adverse effects people experience (or think they experience) from various drugs, that would be useful. Do they specifically call it EBM anywhere?