Johnson Eugenie Evelynne, Gill Sean, Still Madeleine, Trenchard Daisy, Smith Debbie, Harmston Rebecca, McDermott Jane, Pearson Fiona
NIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
Health Expect. 2025 Oct;28(5):e70425. doi: 10.1111/hex.70425.
The United Kingdom National Institute for Health and Care Research (NIHR) allocates funding and provides infrastructure, training and capacity building for research. NIHR expects that patient and public involvement (PPI) is embedded within research it supports. There is a need to understand more about what guidance is offered to researchers across PPI frameworks. This rapid scoping review aimed to identify and clarify PPI frameworks for health and care research.
To identify and explore the scope and key features of frameworks for PPI in health and social care research.
We undertook a rapid scoping review, conducing searches on MEDLINE, CINAHL and PsycInfo for relevant records indexed from 2013 to August 2024. After piloting to refine eligibility and ensure consistent decision-making, a single reviewer screened titles and abstracts and then full-texts, with another checking a proportion for accuracy. A data charting form was piloted. Two reviewers charted all eligible frameworks, and a third checked accuracy. We synthesised data using graphs and tables and provided a narrative of results.
We included 53 frameworks from 55 reports. Most suggested they were applicable across types of health or social care research (N = 30), influencing different stages of the research process (N = 39). Most were developed in the UK (N = 28). Most frameworks did not specify how to find patients or members of the public (N = 36), whether PPI should be one-time or continuous (N = 34), or how direct any interaction between patients and the public and researchers should be (N = 33). Eighteen frameworks suggested that patients and the public could have different levels of control over research. Most frameworks (N = 49) suggested ways to meet one or more of the UK Standards for Public Involvement. Few suggested ways in which equity or diversity could be considered in PPI, according to PROGRESS-Plus domains.
Future frameworks should provide clear, practical guidance to researchers on how to involve people in different types of health and social care research, including how to approach different groups and consider equity and inclusivity within PPI.
英国国家卫生与保健研究所（NIHR）为研究分配资金，并提供基础设施、培训和能力建设。NIHR期望患者和公众参与（PPI）融入其支持的研究中。有必要更多地了解在PPI框架下为研究人员提供了哪些指导。这项快速范围审查旨在识别和阐明卫生与保健研究的PPI框架。
识别和探索卫生与社会保健研究中PPI框架的范围和关键特征。
我们进行了一项快速范围审查，在MEDLINE、CINAHL和PsycInfo上搜索2013年至2024年8月索引的相关记录。在进行试点以完善纳入标准并确保决策一致后，由一名评审员筛选标题和摘要，然后筛选全文，另一名评审员检查部分内容的准确性。试用了一份数据图表表格。两名评审员绘制所有符合条件的框架，第三名评审员检查准确性。我们使用图表和表格综合数据，并提供结果叙述。
我们纳入了5份报告中的53个框架。大多数框架表明它们适用于各类卫生或社会保健研究（N = 30），影响研究过程的不同阶段（N = 39）。大多数框架是在英国制定的（N = 28）。大多数框架未具体说明如何寻找患者或公众成员（N = 36），PPI应该是一次性的还是持续的（N = 34），或者患者和公众与研究人员之间的互动应该有多直接（N = 33）。18个框架表明患者和公众对研究可以有不同程度的控制权。大多数框架（N = 49）提出了满足英国公众参与标准中一项或多项标准的方法。根据PROGRESS-Plus领域，很少有框架提出在PPI中考虑公平或多样性的方法。
未来的框架应就如何让人们参与不同类型的卫生和社会保健研究，包括如何接触不同群体以及在PPI中考虑公平和包容性，为研究人员提供清晰、实用的指导。
