‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory

BackgroundPatient and public involvement (PPI) is a requirement for UK health and social care research funding. Evidence for how best to implement PPI in research programmes, such as National Institute for Health Research (NIHR) Collaborations for Applied Health Research and Care (CLAHRCs), remains limited. This paper reports findings from an action research (AR) project called IMPRESS, which aims to strengthen PPI within CLAHRC East of England (EoE). IMPRESS combines AR with Normalisation Process Theory (NPT) to explore PPI within diverse case study projects, identifying actions to implement, test and refine to further embed PPI.MethodsWe purposively selected CLAHRC EoE case study projects for in-depth analysis of PPI using NPT. Data were generated from project PPI documentation, semi-structured qualitative interviews with researchers and PPI contributors and focus groups. Transcripts and documents were subjected to abductive thematic analysis and triangulation within case. Systematic across case comparison of themes was undertaken with findings and implications refined through stakeholder consultation.ResultsWe interviewed 24 researchers and 13 PPI contributors and analysed 28 documents from 10 case studies. Three focus groups were held: two with researchers (n = 4 and n = 6) and one with PPI contributors (n = 5). Findings detail to what extent projects made sense of PPI, bought in to PPI, operationalised PPI and appraised it, thus identifying barriers and enablers to fully embedded PPI.ConclusionCombining NPT with AR allows us to assess the embeddedness of PPI within projects and programme, to inform specific local action and report broader conceptual lessons for PPI knowledge and practice informing the development of an action framework for embedding PPI in research programmes. To embed PPI within similar programmes teams, professionals, disciplines and institutions should be recognised as variably networked into existing PPI support. Further focus and research is needed on sharing PPI learning and supporting innovation in PPI.

背景：患者与公众参与（Patient and public involvement, PPI）是英国卫生与社会护理研究资助的必备要求。目前，针对如何在英国国家卫生与保健研究所（National Institute for Health Research, NIHR）的应用卫生研究与护理合作中心（Collaborations for Applied Health Research and Care, CLAHRCS）这类研究项目中最优实施患者与公众参与的相关证据仍较为匮乏。本文报告了名为IMPRESS的行动研究（Action Research, AR）项目的研究成果，该项目旨在强化英格兰东部应用卫生研究与护理合作中心（CLAHRC East of England, EoE）内的患者与公众参与工作。IMPRESS将行动研究与正常化过程理论（Normalisation Process Theory, NPT）相结合，针对多类多样化的案例研究项目开展患者与公众参与相关探索，并明确可用于实施、测试与优化以进一步嵌入患者与公众参与的相关举措。
研究方法：我们采用目的性抽样法选取英格兰东部应用卫生研究与护理合作中心的案例研究项目，运用正常化过程理论对患者与公众参与工作开展深入分析。研究数据来源于项目的患者与公众参与相关文档、针对研究人员与患者与公众参与贡献者的半结构化质性访谈，以及焦点小组讨论。转录文本与文档均采用溯因主题分析法，并在案例内部进行三角验证。随后开展跨案例的系统性主题比较，并通过利益相关者咨询对研究结果与启示进行优化。
研究结果：我们共访谈了24名研究人员与13名患者与公众参与贡献者，分析了来自10个案例研究的28份文档。共开展3次焦点小组讨论：2次面向研究人员（参与人数分别为4人和6人），1次面向患者与公众参与贡献者（参与人数为5人）。研究结果详细阐述了各案例项目对患者与公众参与的认知程度、接纳程度、落地实施情况与评估情况，由此明确了实现完全嵌入患者与公众参与的阻碍因素与促进因素。
研究结论：将正常化过程理论与行动研究相结合，能够帮助我们评估患者与公众参与在项目及整体项目框架内的嵌入程度，为针对性的本地实践提供参考，并为患者与公众参与的知识体系与实践发展提炼更广泛的概念性经验，进而形成用于在研究项目中嵌入患者与公众参与的行动框架。若要在类似项目中嵌入患者与公众参与，需认识到团队、专业人员、不同学科与机构以差异化方式接入现有患者与公众参与支持体系。此外，还需进一步聚焦并开展相关研究，以分享患者与公众参与的实践经验，并支持该领域的创新发展。