Comments on: *Really* Stupid Social Health Site http://davidrothman.net/2009/04/25/really-stupid-social-health-site/ Health Information | Geekery Wed, 01 Feb 2012 21:49:12 -0700 http://wordpress.org/?v=2.8.6 hourly 1 By: Rachel http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201057 Rachel Mon, 27 Apr 2009 17:26:58 +0000 http://davidrothman.net/?p=2510#comment-201057 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? 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?

]]> By: Elizabeth Slade http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201054 Elizabeth Slade Mon, 27 Apr 2009 13:18:26 +0000 http://davidrothman.net/?p=2510#comment-201054 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 (<a href="http://casesnetwork.com)" target="_blank">http://casesnetwork.com)</a> 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 (<a href="http://www.patientslikeme.com)" target="_blank">http://www.patientslikeme.com)</a> 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. 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.

]]> By: David Rothman http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201050 David Rothman Mon, 27 Apr 2009 01:57:11 +0000 http://davidrothman.net/?p=2510#comment-201050 Frank, there are a lot of sites that let users look up side effects that are found to be statistically significant in studies. Frank, there are a lot of sites that let users look up side effects that are found to be statistically significant in studies.

]]> By: David Rothman http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201049 David Rothman Sun, 26 Apr 2009 20:06:53 +0000 http://davidrothman.net/?p=2510#comment-201049 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." 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."

]]> By: Frank Wong http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201044 Frank Wong Sun, 26 Apr 2009 19:50:25 +0000 http://davidrothman.net/?p=2510#comment-201044 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. 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.

]]> By: Jon Brassey http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201048 Jon Brassey Sun, 26 Apr 2009 19:31:16 +0000 http://davidrothman.net/?p=2510#comment-201048 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. 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.

]]> By: David Rothman http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201047 David Rothman Sun, 26 Apr 2009 19:15:15 +0000 http://davidrothman.net/?p=2510#comment-201047 And my point is that double blind studies ARE the best mechanism to ensure user experience is captured in the least biased way possible. And my point is that double blind studies ARE the best mechanism to ensure user experience is captured in the least biased way possible.

]]> By: Jon Brassey http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201046 Jon Brassey Sun, 26 Apr 2009 18:49:55 +0000 http://davidrothman.net/?p=2510#comment-201046 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. 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.

]]> By: David Rothman http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201045 David Rothman Sun, 26 Apr 2009 18:34:35 +0000 http://davidrothman.net/?p=2510#comment-201045 Jon, self-selecting users contributing feedback in an uncontrolled setting are not providing evidence. "Anecdotal evidence" is not evidence. Jon, self-selecting users contributing feedback in an uncontrolled setting are not providing evidence. "Anecdotal evidence" is not evidence.

]]> By: Laika Spoetnik http://davidrothman.net/2009/04/25/really-stupid-social-health-site/comment-page-1/#comment-201042 Laika Spoetnik Sun, 26 Apr 2009 06:17:18 +0000 http://davidrothman.net/?p=2510#comment-201042 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. 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.

]]>