Patient Research Partners: Lessons Learned from OMERACT Applied to Dermatology

Abstract

Across medicine, vocal, educated patients are collaborating with researchers to generate clinical trial outcome measures that matter to the patient yet remain scientifically sound. Medical literature refers to these people as “patient research partners,” “patient experts,” “patient representatives,” or “patient stakeholders.” Spearheaded by the rheumatology-based Outcome Measures in Rheumatology group, the medical community has learned the value of allowing patients to be involved actively in outcome measure creation. This paper discusses the history, education, utilization, recruitment, and expanding role of patient experts in dermatology. This information was collected through literature searches and the meetings of outcome measure groups such as Harmonizing Outcome Measures for Eczema, Acne Core Research Network, and International Dermatology Outcome Measures. It was found that over the past several years, patient experts have been helping develop dermatology outcome measures through these groups, leading to major trial design changes.