Department of Dermatology, University of California Davis Health System, Sacramento, California 95816, USA.
J Am Acad Dermatol. 2012 Dec;67(6):1273-1281.e9. doi: 10.1016/j.jaad.2012.05.013. Epub 2012 Jul 19.
Crowdsourcing is a novel method of collecting research data from diverse patient populations. The quality of research data obtained through crowdsourcing is unknown.
The primary aim of this pilot study was to examine how data collected from an online crowdsourcing World Wide Web site compare with those from published literature in psoriasis and psoriatic arthritis (PsA).
Crowdsourced data were collected from a health crowdsourcing site from August 23, 2008, to June 27, 2011. The crowdsourced data were compared with findings from systematic reviews, meta-analyses, and clinical trials.
A total of 160 online patients with psoriasis or PsA were included in the analysis. Among them, 127 patients with psoriasis provided 313 complete responses on psoriasis symptoms and 276 complete responses to psoriasis treatments; 33 patients with PsA provided 91 complete responses on PsA symptoms and 79 responses to PsA treatments. We compared topical treatments, phototherapy, and systemic treatments for psoriasis and PsA from crowdsourced data with the published literature. For the treatment with the largest response rates, equivalency testing was performed comparing crowdsourced data and the published literature. Overall, crowdsourced data were not equivalent to those published in the medical literature.
Crowdsourcing sites used different outcomes measures from those reported in clinical trials.
Differences existed in assessment of treatment effectiveness between crowdsourced data and those published in the literature. With improvements in the collection of crowdsourced data, crowdsourcing can be a valuable tool for collecting patient data in real-world settings for psoriasis and PsA.
众包是一种从不同患者群体中收集研究数据的新方法。通过众包获得的研究数据的质量尚不清楚。
本初步研究的主要目的是检查从在线众包万维网网站收集的数据如何与银屑病和银屑病关节炎（PsA）的文献数据进行比较。
众包数据于 2008 年 8 月 23 日至 2011 年 6 月 27 日从一个健康众包网站收集。将众包数据与系统评价、荟萃分析和临床试验的结果进行比较。
共有 160 名在线银屑病或 PsA 患者纳入分析。其中，127 名银屑病患者对银屑病症状提供了 313 次完整回复，对银屑病治疗提供了 276 次完整回复；33 名 PsA 患者对 PsA 症状提供了 91 次完整回复，对 PsA 治疗提供了 79 次回复。我们比较了众包数据与已发表文献中治疗银屑病和 PsA 的局部治疗、光疗和系统治疗。对于应答率最大的治疗方法，进行等效性检验，比较众包数据和已发表文献。总体而言，众包数据与发表在医学文献中的数据并不等效。
众包网站使用的结果衡量标准与临床试验报告的不同。
众包数据与文献中报告的数据在治疗效果评估方面存在差异。随着众包数据收集的改进，众包可以成为在现实环境中收集银屑病和 PsA 患者数据的有价值工具。
