Jinks Clare, Carter Pam, Rhodes Carol, Taylor Robert, Beech Roger, Dziedzic Krysia, Blackburn Steven, Hughes Rhian, Ong Bie Nio
Research Institute for Primary Care and Health Sciences, Keele University, Keele, ST5 5BG England.
Department of Health Sciences, College of Medicine, Biological Sciences and Psychology, University of Leicester, 22-28 Princess Road West, Leicester, LE1 6TP England.
Res Involv Engagem. 2016 Jan 14;2:1. doi: 10.1186/s40900-016-0015-1. eCollection 2016.
The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects.
This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes.
We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships.
The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.
国际上关于患者及公众参与(PPI)研究的文献涵盖了广泛的问题,包括在整个研究周期中让非专业人员积极参与;患者/公众可以发挥的作用;评估PPI的影响以及关于良好PPI实践的建议。一个较少得到发展的调查领域是PPI在参与限时研究项目之外的可持续性和影响。
本文聚焦于可持续性问题、机构领导的重要性以及创建强大基础设施,以便在研究战略和项目中实现长期且广泛的PPI。
我们以一个初级保健研究中心为例,对该中心PPI的演变进行历史叙述,并确定了一些关于基础设施、资源分配、工作方法、角色和关系的关键概念性问题。
本文总结了该中心模式对于研究中PPI长期可持续性的更广泛适用性。