Werner Anne, Lauberger Julia, Steckelberg Anke, Meyer Gabriele
Institute of Health and Nursing Science, Medical Faculty of Martin Luther University Halle- Wittenberg, University Medicine Halle, Magdeburger Straße 8, 06112, Halle (Saale), Germany.
BMC Psychiatry. 2025 Mar 25;25(1):283. doi: 10.1186/s12888-025-06608-7.
Patient and public involvement (PPI) in health research has become established as an essential component of international health research. Particularly, patients and stakeholders' commitment to psychiatric research faces various challenges. This scoping review aimed to examine the existing literature to identify the aims, methods, barriers, and facilitators of PPI in clinical and basic psychiatric research.
This scoping review's methods were guided by the framework proposed by Arksey and O'Malley. The literature search was conducted between October and November 2023 on six databases (MEDLINE, Web of Science, EMBASE, PsycInfo, PubPsych, and the Cochrane Library). We included reviews that summarized the results of primary studies describing methods for PPI in psychiatric scientific research, regardless of their subjects' underlying psychiatric conditions and the primary research context (clinical or preclinical). The inclusion criteria included a description of the methods, components, and characteristics of participation in psychiatric research. We included reviews published between 2008 and 2023 regardless of participants' language, country, or age.
Twenty reviews comprising 429 studies were included. They revealed that PPI was used to pursue various objectives (e.g., prioritizing research questions). Common methods included focus groups, advisory boards, workshops and interviews. Only one review reported financial compensation for those involved. PPI ranged from tokenism to involvement in data analysis and the dissemination of findings. Facilitators and barriers were identified in relationship and communication factors, organizational and practical factors, and in (co-) researchers training. The most frequently mentioned facilitators of successful PPI were trust and strong relationships. The most frequently mentioned barrier was the power imbalance between the participants and researchers. We identified positive and potential negative effects of PPI.
Golden rules for practice (clinical and basic research) derived from the results are as follows: (I) Foster a culture of collaboration and mutual respect between researchers and PPI participants. (II) Provide adequate resources and support for PPI activities, including funding and training programs. (III) Develop clear guidelines and standards for PPI to ensure consistency and quality. (IV) Develop a willingness to integrate PPI into all phases of research, from planning to the dissemination of results. SCOPING REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/7YS5C .
患者及公众参与（PPI）健康研究已成为国际健康研究的重要组成部分。特别是，患者和利益相关者对精神科研究的参与面临各种挑战。本范围综述旨在审视现有文献，以确定临床和基础精神科研究中PPI的目标、方法、障碍和促进因素。
本范围综述的方法以阿克西和奥马利提出的框架为指导。于2023年10月至11月在六个数据库（MEDLINE、科学网、EMBASE、PsycInfo、PubPsych和考克兰图书馆）进行文献检索。我们纳入了总结描述精神科科研中PPI方法的原始研究结果的综述，无论其研究对象的潜在精神疾病状况以及主要研究背景（临床或临床前）如何。纳入标准包括对精神科研究参与方法、组成部分和特征的描述。我们纳入了2008年至2023年发表的综述，无论参与者的语言、国家或年龄如何。
纳入了20篇综述，包含429项研究。这些研究表明，PPI被用于追求各种目标（如确定研究问题的优先级）。常见方法包括焦点小组、咨询委员会、研讨会和访谈。只有一篇综述报告了对参与者的经济补偿。PPI的程度从形式主义到参与数据分析和研究结果传播不等。在关系和沟通因素、组织和实践因素以及（共同）研究人员培训方面确定了促进因素和障碍。成功的PPI最常被提及的促进因素是信任和牢固的关系。最常被提及的障碍是参与者与研究人员之间的权力不平衡。我们确定了PPI的积极和潜在负面影响。
从结果得出的实践（临床和基础研究）黄金法则如下：（I）培养研究人员与PPI参与者之间的合作与相互尊重文化。（II）为PPI活动提供充足的资源和支持，包括资金和培训项目。（III）制定明确的PPI指南和标准，以确保一致性和质量。（IV）培养将PPI纳入研究各阶段（从规划到结果传播）的意愿。范围综述注册：https://doi.org/10.17605/OSF.IO/7YS5C 。
