Conducting research in psoriatic arthritis: the emerging role of patient research partners. (11th March 2020)

• Record Type: Journal Article
• Authors: Goel, Niti
• Is Part Of: Rheumatology. Volume 59(2020)Supplement 1
• Page Start: i47
• Page End: i55
• Publication Date: 2020-03-11
• Subjects: psoriatic arthritis -- clinical trials and methods -- patient attitude to health -- attitude of health professionals -- outcome measures; Rheumatism -- Periodicals; Rheumatology -- Periodicals; 616.723005
• DOI: 10.1093/rheumatology/kez338
• Languages: English
• ISSNs: 1462-0324

Abstract

Abstract: Since 2003, patients have become increasingly involved in research endeavours related to psoriatic arthritis (PsA), progressing into a patient research partner (PRP) role. This paper reviews the general considerations related to PRP involvement in research endeavours and more specifically, the evolution of PRP contributions related to PsA research. The addition of the perspective from individuals with lived experience of PsA can bring unique insights to the research process, and increase the likelihood that the results of research are meaningful and relevant to PsA patients. There are also potential issues to address when incorporating PRPs, such as the need for additional time and effort to identify, train, and collaborate with PRPs as members of a research team. Overall, while there are challenges to overcome, and the opportunities to include PRPs are sometimes overlooked, efforts to include PRPs in PsA research should offer significant benefits to patients, researchers, and trials.