The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research

IF 3.2 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2025-03-26 DOI:10.1111/hex.70205

Heather Mah, Ruth Dobson, Alison Thomson

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Abstract

Background

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.

Objective

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.

Methods

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.

Results

After searching 3024 citations, 107 published articles and nine unpublished resources were included in the review.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.

Discussion

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.

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生活经验的重要性：对病人和公众参与健康研究的价值的范围审查

最近，研究中的患者和公众参与（PPI）得到了极大的关注，特别是在英国。尽管人们越来越关注个人PPI对研究结果的影响，但在理解其对相关个人的影响以及他们从参与中获得的价值方面，仍存在重要差距。目的：本综述旨在批判性地研究PPI如何使有生活经验的人和研究人员受益，揭示他们参与塑造研究的价值。方法检索MEDLINE、PsycINFO、EMBASE、Cochrane、Web of Science等网站1996年以后发表的英文论文全文。灰色文献检索回顾了国际研究资助者和患者组织的政策。两名审稿人独立进行摘要、标题和全文文章筛选阶段。数据抽象由一名审阅者执行，并由另一名审阅者进行验证。专题分析综合了这些发现。结果检索文献3024篇，共纳入已发表文献107篇，未发表文献9篇。大多数研究是在过去10年里在英国进行的。PPI价值的专题分析揭示了四个主题：(1)对研究贡献的价值；(2)关系的重要性；(3)对PPI的态度和支持；(4)参与的情绪劳动。这一范围综述揭示了PPI在健康研究中的重大贡献和系统性挑战。被重视被定义为个人健康指数对个人健康指数顾问和研究者的影响。它强调了社会资本在发展研究人员和有实际经验的人之间的关系中的重要性，但也强调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被低估。尽管人们因其知识、技能和生活经验而被选中参与，但由于研究人员的期望以及限制性的研究和机构程序，这些资源并不总是被充分利用。该综述呼吁协调努力，改进PPI的价值和实践方式，而不仅仅是一个过程或方法，以确保PPI被深思熟虑和有效地完成。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.