Crowdsourcing for research data collection in rosacea
- Author(s): Armstrong, April W
- Harskamp, Caitlin T
- Cheeney, Safia
- Schupp, Clayton W
- et al.
Letter: Crowdsourcing for research data collection in rosacea1. Department of Dermatology, University of California Davis Health System, Sacramento, California
April W Armstrong MD MPH1, Caitlin T Harskamp BA1, Safia Cheeney MS2, Clayton W Schupp PhD1
Dermatology Online Journal 18 (3): 15
2. University of Arizona, College of Medicine, Tucson, Arizona
Several medical crowdsourcing sites are available to patients online, but few studies in the literature have compared crowdsourced data to clinical trials. Herein, we compare data from rosacea patients from a major medical crowdsourcing site with those from randomized controlled trials.
Crowdsourcing in medical research is the process of outsourcing health-related data collection to groups of people or communities. Crowdsourced data have the potential to inform clinicians on treatment effectiveness in real-world patient populations. Although several medical crowdsourcing sites are available to patients online, few studies in the literature have compared crowdsourced data to clinical trials [1, 2]. In this study, we examined how data from rosacea patients from a major medical crowdsourcing site, CureTogether (curetogether.com), compare those from randomized controlled trials.
These responses were compared to results from published literature, which we obtained through medline search for systematic reviews and meta-analyses examining treatments published between July 15, 2008 and July 15, 2011, on rosacea.
The top treatments used by online rosacea patients were topical or oral antibiotics (10/19 reported improvement) and sunscreen (5/14 reported improvement). Avoiding alcohol and keeping skin most were both the third most common treatments used by online rosacea patients, with 6/13 users reporting improvement with each treatment (Table 2).
Systemic therapies are used for certain subtypes of rosacea, especially papulopustular rosacea subtype . Tetracycline, doxycycline, and minocycline are oral antibiotics prescribed to treat the inflammatory aspects of rosacea . One out of five of online patients reported improvement with doxycycline and 52.6 percent (10/19) of online patients reported improvement with use of an unspecified antibiotic. In the literature, doxycycline is the only tetracycline FDA-approved for long-term use in rosacea. In two Phase III trials comparing doxycycline to placebo, an Investigator Global Assessment improvement was observed in 45.7 percent of doxycycline-treated patients and 25.8 percent of placebo-treated patients after 16 weeks . In a randomized controlled trial comparing combination doxycycline + metronidazole with metronidazole + placebo, the doxycycline + metronidazole group achieved a greater reduction in inflammatory lesions (-15) compared to the metronidazole + placebo group (-7) at week 12. This improvement was maintained at week 16. The reduction in lesion count was maintained after patients discontinued metronidazole and continued doxycycline treatment [5, 6].
Few rosacea patients from the crowdsourcing site reported using metronidazole and azelaic acid. Three out of four online patients reported improvement with azelaic acid. In comparison, three out of six online patients reported improvement with metronidazole. In the published literature, split-face comparison trial of azelaic acid 20 percent and metronidazole 0.75 percent observed that both treatments were equally effective [7, 8]. Another trial comparing azelaic acid 15 percent gel to metronidazole 0.75 percent gel showed that azelaic acid was superior in reducing inflammatory lesions (72.7% vs. 55.8%) and erythema (56% vs. 42%) [9, 10].
Sodium sulfacetamide is a topical, antibacterial treatment frequently used for rosacea. One out of four online patients reported improvement with topical sulfur treatment, specifically with sulfur lotion. In a double-blind trial comparing sodium sulfacetamide to placebo, 78 percent of patients using sulfacetamide experienced a reduction in inflammatory lesions compared to 36 percent of patients in the placebo group. In addition, 83 percent of patients using sulfacetamide experienced improvement in facial erythema compared to 31 percent of placebo patients (Table 2) [10, 11].
Whereas limitations of the currently available crowdsourced data include low numbers of patient responses, unspecified medication dosages and duration, and unknown medication adherence rates, improvements in crowdsourcing over time will likely enable collection of high-volume, high-quality data that reflect real-world patient experiences. Furthermore, different outcomes measures used on the crowdsourcing site from those in the clinical trials inhibit direct comparison of the treatment responses. For example, whereas lesion count or Investigator Global Assessment was used in the clinical trials, Likert scale was used on the crowdsourcing site. Thus, innovations in deploying validated measures for crowdsourcing – although still enticing the online users – will be key to collect high-quality crowdsourced data. In summary, crowdsourcing has the potential to yield high-volume data from diverse patient populations. With future improvements in the standardization of data collection, crowdsourcing could provide valuable insight into real-world treatment effectiveness.
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