Taylor Jane, Dekker Sjouke, Jurg Diny, Skandsen Jon, Grossman Maureen, Marijnissen Anne-Karien, Ladel Christoph, Mobasheri Ali, Larkin Jon, Weinans Harrie, Kanter-Schlifke Irene
The APPROACH Patient Council, Utrecht, The Netherlands.
Rheumatology & Clinical Immunology, University Medical Center Utrecht, Heidelberglaan 100, Utrecht, 3584 CX, The Netherlands.
Res Involv Engagem. 2021 May 10;7(1):24. doi: 10.1186/s40900-021-00267-0.
APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis to enable future differential diagnosis and treatment. During a 2-year clinical study images, biomarkers and clinical data are collected from people living with knee osteoarthritis and data are analyzed to confirm patterns that can indicate such different subgroups. A Patient Council (PC) has been set up at project initiation and consists of five people from Norway, The Netherlands and UK. Initially, this group of individuals had to learn how to effectively work with each other and with the researchers. Today, the PC is a strong team that is fully integrated in the consortium and acknowledged by researchers as an important sounding board. The article describes this journey looking at formal processes of involvement - organizational structure, budget, meetings - and more informal processes such as building relationships and changing researcher perceptions. It describes how the PC helped improve the experience and engagement of study participants by providing input to the clinical protocol and ensuring effective communication (e.g. through direct interactions with participants and newsletters). Furthermore, the PC is helping with dissemination of results and project advocacy, and overall provides the patient perspective to researchers. Additionally, the authors experienced and describe the intangible benefits such as a shift in researcher attitudes and a sense of community and purpose for PC members. Importantly, learnings reported in this article also include the challenges, such as effective integration of the PC with researchers' work in the early phase of the project. TRIAL REGISTRATION: US National Library of Medicine, NCT03883568 , retrospectively registered 21 March 2019.
APPROACH是一个全欧盟范围的研究联盟，目标是识别膝关节骨关节炎的不同亚组，以实现未来的鉴别诊断和治疗。在一项为期两年的临床研究中，收集了膝关节骨关节炎患者的图像、生物标志物和临床数据，并对数据进行分析，以确认能够指示这些不同亚组的模式。在项目启动时成立了一个患者委员会（PC），由来自挪威、荷兰和英国的五人组成。最初，这群人必须学习如何彼此之间以及与研究人员有效地合作。如今，患者委员会是一个强大的团队，已完全融入联盟，并被研究人员认可为一个重要的咨询机构。本文描述了这段历程，审视了参与的正式流程——组织结构、预算、会议——以及更非正式的流程，如建立关系和改变研究人员的看法。它描述了患者委员会如何通过为临床方案提供意见并确保有效沟通（例如通过与参与者的直接互动和时事通讯）来帮助改善研究参与者的体验和参与度。此外，患者委员会正在协助结果传播和项目宣传，并总体上为研究人员提供患者视角。此外，作者体验并描述了一些无形的益处，如研究人员态度的转变以及患者委员会成员的社区感和使命感。重要的是，本文报告的经验教训还包括一些挑战，比如在项目早期患者委员会与研究人员工作的有效整合。试验注册：美国国立医学图书馆，NCT03883568，于2019年3月21日追溯注册。
