Insight into the patient experience of eczema through a crowdsourcing approach

Health care professional (HCP) and researcher assessment of the severity of eczema (also called atopic eczema or atopic dermatitis) and its impact on quality of life is often poorly correlated with patient-reported outcomes.1-3 With the increased use of social media to share and discuss medical conditions, crowdsourcing is a potential means to better understand the patient disease experience.4 We conducted a study to determine the feasibility of using social media to study the patient perspective of living with eczema. Social media sites included Twitter (San Francisco, Calif), where users share 140-character messages known as “tweets,” and Facebook (Menlo Park, Calif), where users link their account to known “friends” and share links and messages, Tumblr (New York City, NY), a microblog networking service that allows users to post multimedia and blogs, and Instagram (San Francisco, Calif), a mobile photo/video-sharing service. Social media has the potential to yield genuine and illustrative insight into the experience of living with eczema compared with other methods of patient-oriented research such as qualitative interviews, focus groups, or surveys. [...]despite its limitations, unsolicited crowdsourcing via social media can be a useful research technique. References 1 R.W. van Valburg, M.G. Willemsen, P.C. Dirven-Meijer, A.P. Oranje, J.C. van der Wouden, H. Moed, Quality of life measurement and its relationship to disease severity in children with atopic dermatitis in general practice, Acta Derm Venereol, Vol. 91, 2011, 147-151 2 C.Y. Zhao, A.Q. Tran, J.P. Lazo-Dizon, J. Kim, B.S. Daniel, S.S. Venugopal, A pilot comparison study of four clinician-rated atopic dermatitis...