Researchers published a very interesting study recently in The American Journal of Clinical Dermatology to gauge how accurate data from crowdsourcing is when it comes to the efficacy of acne treatments. The researchers asked 662 online acne patients to tell them how well their treatments were working and then compared this to results from clinical studies. I found a few interesting things.
Responses from the crowd seemed to vary quite widely with clinical studies. For instance, only 46% of respondents from the crowd reported any improvement from tretinoin (Retin-A) compared with 80% of subjects in clinical trials. 64% of the crowd reported improvement from Accutane (isotretinoin) compared with upwards of 90% of subjects in clinical trials. 41% of the crowd reported improvement from tetracycline oral antibiotic therapy compared with 57% of subjects in a clinical trial. 38% reported improvement from doxycycline oral antibiotic compared with 50% of subjects in a clinical trial.
You may be noticing a trend here. As the authors of this particular study note, “For most…treatments, medication with high efficacy in clinical trials did not produce high effectiveness ratings based on the crowdsourced online data.” Why might this be? Could it be due to the inaccuracy in respondent responses outside the parameters of a clinical setting? Or could it be because the people funding the vast majority of clinical trials are the companies who make the products? Lest I get too high on my high horse, I do not think it is always the case that data is skewed in favor of corporations and profits. For instance, over the past 20 years, hundreds of thousands of pieces of input from people here at Acne.org show Accutane (isotretinoin) producing improvement for way more than 64% of people.
Something I very often find disturbing from results of acne medications, whether the data comes from the crowd or clinical trials, is the poor efficacy of the medications themselves. Who wants to use a medication which only helps 50% of people improve, and only improve somewhat? This is why I want the world to know about The Regimen here at Acne.org. It reliably gets almost everyone completely clear. That’s the kind of results people want.
So where do we go from here? I firmly believe that the future of pretty much everything is in crowdsourcing, and medicine is no exception. We know from Wikipedia that when enough people get together to share their knowledge, crowdsourcing can be incredibly accurate and valuable. I think the same can be true for medical information as long as we achieve a critical mass of people inputting their data. That’s one of the big goals of Acne.org and I hope we see more of this in the future across the medical spectrum. Join Acne.org if you haven’t already and add your voice!
- Armstrong A, et al. “Harnessing the power of crowds: crowdsourcing as a novel research method for evaluation of acne treatments.” The American Journal of Clinical Dermatology. 2012; 13(6): 405-16.