Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review.

IF 3.1 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Patient-Patient Centered Outcomes Research Pub Date : 2025-09-05 DOI:10.1007/s40271-025-00765-3

Signe Nissen, Anne Wettergren Karlsson, Birgitte Nørgaard

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引用次数: 0

Abstract

Background: 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.

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

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健康研究中患者和公众参与（PPI）的评估工具：范围综述。

背景：患者和公众参与（PPI）对于使研究符合公众需求、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是必要的，以确保其有效性。然而，尽管其重要性得到公认，但研究人员报告缺乏系统评估PPI的可靠工具。为了明确在健康研究中使用哪些工具来评估PPI，我们进行了范围综述。目的：我们旨在识别和绘制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。方法：根据系统评价首选报告项目和荟萃分析扩展范围评价（PRISMA-ScR）指南进行范围评价。在MEDLINE、Embase、CINAHL和Scopus中进行了全面检索，以确定在2021年至2024年间发表的描述健康研究背景下PPI评估工具的研究。评估PPI的研究被纳入，与工具验证无关。研究选择和数据图表由结构化提取框架的原则指导，结果以描述性和叙述性的方式综合。结果：纳入30项研究。据报道，PPI合作伙伴的积极个人结果，包括幸福感和技能发展的增加。尽管存在强大的经过验证的评估工具，但许多工具都是重新调整或开发的。我们注意到“我们vs他们”的动态，反映了PPI合作伙伴和研究人员在评估期间的不同参与水平。为加强合作伙伴和研究人员提供额外培训的必要性是一个反复出现的主题。结论：患者和公众参与评估工具经常被开发或调整以适应特定的情况，使用多种方法进行评估。挑战包括研究人员在评估中的低反应率和需要更好的研究人员对PPI的准备。

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

Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-

CiteScore

6.60

自引率

8.30%

发文量

审稿时长

>12 weeks

期刊介绍： The Patient provides a venue for scientifically rigorous, timely, and relevant research to promote the development, evaluation and implementation of therapies, technologies, and innovations that will enhance the patient experience. It is an international forum for research that advances and/or applies qualitative or quantitative methods to promote the generation, synthesis, or interpretation of evidence. The journal has specific interest in receiving original research, reviews and commentaries related to qualitative and mixed methods research, stated-preference methods, patient reported outcomes, and shared decision making. Advances in regulatory science, patient-focused drug development, patient-centered benefit-risk and health technology assessment will also be considered. Additional digital features (including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations) can be published with articles; these are designed to increase the visibility, readership and educational value of the journal’s content. In addition, articles published in The Patient may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand important medical advances. All manuscripts are subject to peer review by international experts.