Online crowdsourced data on psoriasis and psoriatic arthritis were not equivalent to data in peer-reviewed published literature, according to a recent study.
Researchers collected data from the online health site Cure Together, which uses crowdsourced patient information, from August 2008 to June 2011. They compared data from 127 patients with psoriasis and 33 patients with psoriatic arthritis (PsA) with results from systematic reviews, meta-analyses and clinical trials. Crowdsourcing in medical research was defined as “the act of sourcing data collection to patients or community through an open call.”
Patients with psoriasis completed 313 online responses on symptoms and 276 responses to treatments; patients with PsA completed 91 responses on symptoms and 79 to treatments. The most-reported psoriasis symptoms online (10 or more responses) included red patches of skin (15.7%), itching (15.3%) and dry, cracked skin (13.1%). PsA symptoms reported online included joint inflammation (15.4%), joint pain (15.4%) and swelling of the fingers (12.1%).
Researchers compared the crowdsourced data with published literature on topical treatments, phototherapy and systemic treatments for psoriasis and PsA. With a focus on vitamin D analogues, equivalency testing of online responses compared with published data showed that equivalency could not be reached. Other topical and systemic treatments also revealed different response rates when comparing crowdsourced and published data.
Researchers noted that only indirect comparisons of treatment efficacy could be made, since crowdsourcing and clinical trials used different outcome measures. Clinical trials used validated outcome instruments such as the Psoriasis Area and Severity Index and the American College of Rheumatology scale response, while the crowdsourcing site used Likert scales, which have not been validated.
“Differences existed in assessment of treatment effectiveness between crowdsourced data and those published in the literature,” the researchers concluded. “With improvements in the collection of crowdsourced data, crowsdsourcing can be a valuable tool for collecting patient data in real-world settings for psoriasis and PsA.”
Disclosure: April W. Armstrong, MD, MPH, has received research grants and/or consultant honoraria from Abbott, Amgen and Janssen.