Mah Heather, Dobson Ruth, Thomson Alison
Centre for Preventive Neurology, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Health Expect. 2025 Apr;28(2):e70205. doi: 10.1111/hex.70205.
Recently, patient and public involvement (PPI) in research has gained significant attention, particularly within the United Kingdom. Although there has been a growing focus on the impact of PPI on research outcomes, there remains an important gap in understanding its effects on the individuals involved and the value they gain from their participation.
This scoping review aims to critically examine how PPI benefits both people with lived experience and researchers, shedding light on the value of their involvement in shaping research.
We searched MEDLINE, PsycINFO, EMBASE, Cochrane and Web of Science for full-text articles published in English after 1996. Grey literature searches reviewed policies from international research funders and patient organisations. Two reviewers independently carried out the abstract, title and full-text article screening stages. Data abstraction was performed by one reviewer and verified by a second reviewer. Thematic analysis synthesised the findings.
After searching 3024 citations, 107 published articles and nine unpublished resources were included in the review. Most of the studies were conducted in the United Kingdom in the last 10 years. Thematic analysis of the value of PPI revealed four main themes: (1) value from contributing to research, (2) importance of relationships, (3) attitudes and support for PPI and (4) emotional labour of involvement.
This scoping review reveals the significant contributions alongside systemic challenges of PPI in health research. Being valued was framed as an impact of PPI to both PPI advisors and researchers. It emphasises the importance of social capital in developing relationships between researchers and people with lived experience yet highlights barriers that can hinder effective collaboration. This can lead to experiential knowledge being undervalued as a crucial perspective to inform research. Despite people being chosen to take part on account of their knowledge, skills and lived experience, these resources were not always used to their full potential due to researchers' expectations and restrictive research and institutional processes. The review calls for coordinated efforts to improve how PPI is valued and practised beyond a process or method to ensure PPI is done thoughtfully and effectively.
近年来，患者及公众参与（PPI）研究受到了广泛关注，尤其是在英国。尽管人们越来越关注PPI对研究结果的影响，但在理解其对参与者个人的影响以及他们从参与中获得的价值方面，仍存在重大差距。
本范围综述旨在批判性地审视PPI如何使有实际经验的人和研究人员都受益，阐明他们参与塑造研究的价值。
我们检索了MEDLINE、PsycINFO、EMBASE、Cochrane和科学网，查找1996年以后发表的英文全文文章。灰色文献检索回顾了国际研究资助者和患者组织的政策。两名评审员独立进行摘要、标题和全文文章筛选阶段。数据提取由一名评审员进行，并由另一名评审员核实。主题分析综合了研究结果。
在检索3024条引文后，107篇已发表文章和9篇未发表资源被纳入综述。大多数研究是在过去10年内在英国进行的。对PPI价值的主题分析揭示了四个主要主题：（1）对研究做出贡献的价值，（2）关系的重要性，（3）对PPI的态度和支持，以及（4）参与的情感劳动。
本范围综述揭示了PPI在健康研究中的重大贡献以及系统性挑战。被重视被视为PPI对PPI顾问和研究人员的一种影响。它强调了社会资本在发展研究人员与有实际经验的人之间关系中的重要性，但也突出了可能阻碍有效合作的障碍。这可能导致经验知识作为为研究提供信息的关键视角而被低估。尽管人们因其知识、技能和实际经验而被选中参与，但由于研究人员的期望以及严格的研究和机构流程，这些资源并未总是得到充分利用。该综述呼吁做出协调努力，以改进PPI的价值评估和实践方式，使其超越一个过程或方法，确保PPI能够经过深思熟虑并有效地进行。
