Department of Community Mental Health and Law, National Institute of Mental Health, National Center of Neurology and Psychiatry, Kodaira, Tokyo, Japan.
Department of Psychiatric Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo, Tokyo, Japan.
Health Expect. 2022 Aug;25(4):1844-1860. doi: 10.1111/hex.13529. Epub 2022 Jun 3.
Patient and public involvement (PPI) has become essential in health research. However, little is known about multiple stakeholders' perspectives on the implementation of PPI in community mental health research settings. The present study aimed to qualitatively analyse multiple stakeholders' views on PPI, including potential concerns, barriers and approaches.
This study involved conducting focus group interviews and collecting qualitative data from 37 participants in multiple stakeholder groups (patients = 6, caregivers = 5, service providers = 7, government staff = 5 and researchers = 14) in the community mental health field. The data were qualitatively analysed using a data-driven approach that derived domains, themes and subthemes related to perspectives on PPI and to specific challenges and approaches for implementing PPI.
The qualitative analysis identified four domains. The 'Positive views and expectations regarding PPI' domain consisted of themes related to supportive views of PPI in a mental health service research setting and improvements in the quality of research and service. The 'General concerns about PPI' domain included themes concerning the need for non-PPI research and tokenism, excessive expectations concerning social changes and use of evidence from PPI research, and heavy burdens resulting from PPI. The 'Specific issues regarding the implementation of PPI' domain consisted of four themes, including academic systems, selection methods (e.g., representativeness and conflict of interest issues), relationship building, and ambiguous PPI criteria. In particular, all stakeholder groups expressed concerns about relational equality during PPI implementation in Japan. The 'Approaches to PPI implementation' domain included themes such as facilitating mutual understanding, creating a tolerant atmosphere, establishing PPI support systems (e.g., training, ethics and human resource matching) and empowering patient organizations.
The study replicated most of the barriers and approaches to PPI reported by qualitative research in Western counties. However, utilization of evidence produced by PPI research and partnership in the PPI process may be particularly serious issues in Japan. Future PPI studies should carefully address solutions that fit each culture.
A patient-researcher was involved in all stages of this project, from development of the research topic and the protocol to manuscript preparation.
患者和公众参与（PPI）已成为健康研究的重要组成部分。然而，对于社区心理健康研究环境中 PPI 实施的多利益相关者的观点，我们知之甚少。本研究旨在定性分析多利益相关者对 PPI 的看法，包括潜在的关注点、障碍和方法。
本研究对来自社区心理健康领域的多个利益相关者群体（患者=6、照顾者=5、服务提供者=7、政府工作人员=5 和研究人员=14）的 37 名参与者进行了焦点小组访谈和收集定性数据。使用数据驱动的方法对数据进行了定性分析，该方法得出了与 PPI 观点以及实施 PPI 的具体挑战和方法相关的领域、主题和子主题。
定性分析确定了四个领域。“对 PPI 的积极看法和期望”领域包含了在精神卫生服务研究环境中支持 PPI 的主题以及改善研究和服务质量的主题。“对 PPI 的一般关注”领域包括对非 PPI 研究的必要性和象征性、对社会变革和使用 PPI 研究证据的过高期望以及 PPI 带来的沉重负担的主题。“实施 PPI 的具体问题”领域包含四个主题，包括学术体系、选择方法（代表性和利益冲突问题）、关系建立以及 PPI 标准不明确。特别是，所有利益相关者群体都对在日本实施 PPI 期间的关系平等表示关注。“实施 PPI 的方法”领域包含促进相互理解、营造宽容氛围、建立 PPI 支持系统（培训、伦理和人力资源匹配）以及赋予患者组织权力等主题。
本研究复制了在西方国家的定性研究报告的 PPI 的大多数障碍和方法。然而，在日本，利用 PPI 研究产生的证据以及在 PPI 过程中的合作可能是特别严重的问题。未来的 PPI 研究应认真解决适合每种文化的解决方案。
一位患者研究员参与了该项目的所有阶段，从研究课题和方案的开发到手稿的准备。
