Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Rheumatology (Oxford). 2020 Mar 1;59(Suppl 1):i47-i55. doi: 10.1093/rheumatology/kez338.
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.
自 2003 年以来，患者越来越多地参与到与银屑病关节炎（PsA）相关的研究中，逐渐扮演起患者研究伙伴（PRP）的角色。本文回顾了 PRP 参与研究的一般考虑因素，更具体地说，还回顾了 PRP 在 PsA 研究方面的贡献演变。将具有 PsA 患病经验的个体观点纳入研究过程中，可以为研究带来独特的见解，并增加研究结果对 PsA 患者有意义和相关的可能性。在纳入 PRP 时，还需要考虑一些潜在问题，例如需要额外的时间和精力来确定、培训和与 PRP 合作，让他们作为研究团队的成员。总的来说，虽然存在需要克服的挑战，并且有时会忽略纳入 PRP 的机会，但努力将 PRP 纳入 PsA 研究应该会给患者、研究人员和试验带来重大利益。
