Department of Psychiatry, University of Cambridge, Douglas House, 18B Trumpington Road, Cambridge, CB2 8AH, UK.
Department of Psychiatry, University of Oxford, Oxford, UK.
Syst Rev. 2024 Aug 6;13(1):212. doi: 10.1186/s13643-024-02601-5.
Involving the public in evidence synthesis research is challenging due to the highly analytic nature of the projects, so it is important that involvement processes are documented, reflected upon, and shared to devise best practices. There is a literature gap on the involvement of the public in individual participant data meta-analyses, particularly in public health projects. We aimed to document and reflect on our collective experiences of involving and being involved as public stakeholders at all stages of a systematic review and individual participant data meta-analysis project.
We formed a stakeholder group made of four members of the public at the beginning of our evidence synthesis project comprising a systematic review, an aggregate data meta-analysis, and an individual participant data meta-analysis of mindfulness-based programmes for mental health promotion in non-clinical adults. Following each group meeting, members and participating researchers completed written reflections; one group member collected and collated these. At the end of the project, a reflective writing workshop was held before all members completed their final reflections. Everyone completed an adapted, open-ended questionnaire which asked about what did and did not work well, the overall experience, what could be improved, and the felt impact the stakeholder group had on the research.
Overall, the stakeholders and researchers reported a positive experience of working together. Positives from the stakeholders' point of view included learning new skills, experiencing research, and making new friends. For the researchers, stakeholders helped them focus on what matters to the public and were reinvigorating research partners. The challenges stakeholders experienced included having long gaps between meetings and feeling overwhelmed. The researchers found it challenging to strike the balance between asking stakeholders to be involved and for them to learn research-related skills without overburdening them and making sure that the learning was engaging. When looking back at their experience, stakeholders described seeing their impact on the project in hindsight but that this was not felt while the project was being carried out.
Successfully involving the public in complex evidence synthesis projects is possible and valuable from the points of view of the researchers and the stakeholders. However, it requires a significant time, skill, and resource investment that needs to be factored in from project inception. Further guidance and stakeholder training materials would be helpful. Specific suggestions are provided.
由于项目具有高度分析性，因此让公众参与证据综合研究具有挑战性，因此记录、反思和分享参与过程以制定最佳实践非常重要。关于公众参与个体参与者数据荟萃分析的文献存在差距，特别是在公共卫生项目中。我们旨在记录和反思我们作为公众利益相关者在系统评价和个体参与者数据荟萃分析项目的所有阶段的参与和被参与的集体经验。
我们在证据综合项目开始时成立了一个由四名公众成员组成的利益相关者小组，该项目包括系统评价、汇总数据荟萃分析和针对非临床成年人心理健康促进的基于正念的计划的个体参与者数据荟萃分析。每次小组会议后，成员和参与研究人员完成书面反思；一名小组成员收集和整理这些反思。在项目结束时，在所有成员完成最终反思之前，举行了一次反思写作研讨会。每个人都完成了一份经过修改的开放式问卷，询问哪些方面运作良好，哪些方面运作不佳，整体体验如何，哪些方面可以改进，以及利益相关者小组对研究的影响。
总体而言，利益相关者和研究人员报告说他们共同合作的经历是积极的。从利益相关者的角度来看，积极的方面包括学习新技能、体验研究和结交新朋友。对于研究人员来说，利益相关者帮助他们关注公众关注的问题，并为他们提供了新的研究伙伴。利益相关者面临的挑战包括会议之间的时间间隔较长，以及感到不知所措。研究人员发现，在要求利益相关者参与并让他们学习与研究相关的技能而不使他们负担过重并确保学习具有吸引力之间取得平衡具有挑战性。当回顾他们的经验时，利益相关者描述了他们在项目中的影响，但在项目进行时并没有感觉到这一点。
从研究人员和利益相关者的角度来看，成功地让公众参与复杂的证据综合项目是可能且有价值的。然而，这需要从项目开始就投入大量的时间、技能和资源，这需要从项目开始就考虑到。进一步的指导和利益相关者培训材料将是有帮助的。提供了具体建议。
