Section of Health Care Research and Rehabilitation Research, Faculty of Medicine and Medical Centre, University of Freiburg, Hugstetter Str. 49, 79106, Freiburg, Germany.
Division of General Practice/Family Medicine, Faculty of Medicine and Medical Centre, University of Freiburg, Freiburg, Germany.
Z Rheumatol. 2021 Mar;80(2):132-139. doi: 10.1007/s00393-020-00839-7.
Despite widespread recommendations for involving patient research partners (PRPs), there is little information about how patients have been involved in research. Our aim was to describe and assess the contributions of four PRPs in a project on communication-skills training funded by Deutsche Rheuma-Liga Bundesverband e. V. (German League Against Rheumatism [GLR] is a patient organisation for people with rheumatic and musculoskeletal diseases). The PRPs' participation was beneficial with regards to content and organisation. Thanks to their participation, we could enlarge our sample by over a third, and they contributed their own ideas to the training. Four PRPs added their perspective of various regional organisations. Outside this project, they were also very active within GLR and experienced in managing their rheumatic disease. To achieve more representativeness, future studies might also employ strategies to engage individuals with less experience in dealing with their disease, e.g. newly diagnosed patients. While the collaboration between PRPs and researchers proved very successful, more regular discussions about tasks and responsibilities would be worthwhile.
尽管广泛建议让患者研究伙伴（PRP）参与，但关于患者如何参与研究的信息却很少。我们的目的是描述并评估四位 PRP 在一个由德国风湿病联盟联邦协会（GLR，一个风湿和肌肉骨骼疾病患者组织）资助的关于沟通技巧培训项目中的贡献。PRP 的参与对于内容和组织都很有帮助。由于他们的参与，我们可以将样本扩大三分之一以上，他们还为培训贡献了自己的想法。四位 PRP 从各自所在的多个地区组织的角度提供了意见。在这个项目之外，他们在 GLR 内部也非常活跃，并且在管理他们的风湿性疾病方面经验丰富。为了实现更高的代表性，未来的研究可能还需要采用一些策略来让那些在处理疾病方面经验较少的个人参与进来，例如新诊断的患者。虽然 PRP 和研究人员之间的合作非常成功，但更有必要定期讨论任务和责任。
