Nissen Signe, Karlsson Anne Wettergren, Nørgaard Birgitte
Hospital Lillebaelt, Region of Southern Denmark, Vejle, Denmark.
Center for Research with Patients and Relatives, OPEN, Odense University Hospital, Odense, Denmark.
Patient. 2025 Sep 5. doi: 10.1007/s40271-025-00765-3.
Patient and public involvement (PPI) is crucial for aligning research with public needs, reducing research waste, and enhancing the relevance and quality of evidence. Evaluating PPI is necessary to ensure its effectiveness. However, despite its recognised importance, researchers have reported a lack of robust tools for evaluating PPI systematically. To clarify which tools are used to evaluate PPI in health research, we conducted a scoping review.
We aimed to identify and map evaluation tools that have been used in empirical health research studies to assess PPI, and to describe reported outcomes related to PPI.
A scoping review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. A comprehensive search was undertaken in MEDLINE, Embase, CINAHL and Scopus to identify studies published between 2021 and 2024 describing evaluation tools for PPI in health research contexts. Studies evaluating PPI were included, irrespectively of tool validation. Study selection and data charting were guided by principles from structured extraction frameworks and results were synthesised descriptively and narratively.
Thirty studies were included. Positive personal outcomes for PPI partners were reported, including increased well-being and skill development. Despite the existence of robust validated evaluation tools, many were adapted or developed de novo. An 'us vs them' dynamic was noted, reflecting differing engagement levels between PPI partners and researchers during evaluations. The need for additional training for both PPI partners and researchers to enhance collaboration was a recurring theme.
Patient and public involvement evaluation tools are often developed or adapted to fit specific contexts, with multiple methods used for assessment. Challenges include low researcher response rates in evaluations and the need for better researcher preparedness for PPI.
患者及公众参与（PPI）对于使研究与公众需求保持一致、减少研究浪费以及提高证据的相关性和质量至关重要。评估PPI对于确保其有效性是必要的。然而，尽管其重要性已得到认可，但研究人员报告称缺乏用于系统评估PPI的有力工具。为了明确在健康研究中使用哪些工具来评估PPI，我们进行了一项范围综述。
我们旨在识别并梳理在实证健康研究中用于评估PPI的评估工具，并描述与PPI相关的报告结果。
根据系统评价和Meta分析扩展版的首选报告项目：范围综述（PRISMA-ScR）指南进行范围综述。在MEDLINE、Embase、CINAHL和Scopus中进行全面检索，以识别2021年至2024年期间发表的描述健康研究背景下PPI评估工具的研究。纳入评估PPI的研究，无论工具是否经过验证。研究选择和数据制表以结构化提取框架中的原则为指导，结果采用描述性和叙述性方式进行综合。
纳入了30项研究。报告了PPI伙伴的积极个人成果，包括幸福感增强和技能发展。尽管存在经过充分验证的评估工具，但许多工具是改编的或重新开发的。注意到一种“我们与他们”的动态关系，反映了PPI伙伴和研究人员在评估过程中的不同参与程度。为PPI伙伴和研究人员提供额外培训以加强合作的需求是一个反复出现的主题。
患者及公众参与评估工具通常是为适应特定背景而开发或改编的，采用多种方法进行评估。挑战包括评估中研究人员的低回应率以及研究人员对PPI的准备不足。
