McVey Lynn, Frost Tina, Issa Basma, Davison Eva, Abdulkader Jamil, Randell Rebecca, Alvarado Natasha, Zaman Hadar, Hardiker Nicholas, Cheong V-Lin, Woodcock David
Faculty of Health Studies, University of Bradford, Bradford, UK.
Wolfson Centre for Applied Health Research, Bradford, UK.
Res Involv Engagem. 2023 Mar 25;9(1):14. doi: 10.1186/s40900-023-00427-4.
The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, and this paper responds by reporting how professional and lay researchers collaborated on a research study about falls prevention among older patients in English acute hospitals. It focuses on how they worked together in ways that valued all contributions, as envisaged in the UK standards for public involvement for better health and social care research.
The paper is itself an example of working together, having been written by a team of lay and professional researchers. It draws on empirical evidence from evaluations they carried out about the extent to which the study took patient and public perspectives into account, as well as reflective statements they produced as co-authors, which, in turn, contributed to the end-of-project evaluation.
Lay contributors' deep involvement in the research had a positive effect on the project and the individuals involved, but there were also difficulties. Positive impacts included lay contributors focusing the project on areas that matter most to patients and their families, improving the quality and relevance of outcomes by contributing to data analysis, and feeling they were 'honouring' their personal experience of the subject of study. Negative impacts included the potential for lay people to feel overwhelmed by the challenges involved in achieving the societal or organisational changes necessary to address research issues, which can cause them to question their rationale for public involvement.
The paper concludes with practical recommendations for working together effectively in research. These cover the need to discuss the potential emotional impacts of such work with lay candidates during recruitment and induction and to support lay people with these impacts throughout projects; finding ways to address power imbalances and practical challenges; and tips on facilitating processes within lay groups, especially relational processes like the development of mutual trust.
公众参与研究的开发、实施和传播的重要性日益得到认可。人们呼吁分享如何做到这一点的实例，本文通过报告专业研究人员和非专业研究人员如何就英国急症医院老年患者预防跌倒的研究进行合作来作出回应。它着重于他们如何以重视所有贡献的方式共同开展工作，这正如英国改善健康和社会护理研究的公众参与标准所设想的那样。
本文本身就是合作的一个实例，由一组非专业研究人员和专业研究人员共同撰写。它借鉴了他们对该研究在多大程度上考虑了患者和公众观点所进行的评估的实证证据，以及他们作为共同作者所撰写的反思性陈述，这些反思性陈述反过来又为项目结束时的评估做出了贡献。
非专业贡献者深度参与研究对项目和相关个人产生了积极影响，但也存在困难。积极影响包括非专业贡献者使项目聚焦于对患者及其家庭最重要的领域，通过参与数据分析提高结果的质量和相关性，以及感觉自己在“尊重”他们对研究主题的个人经历。负面影响包括非专业人员可能会因实现解决研究问题所需的社会或组织变革所涉及的挑战而感到不堪重负，这可能导致他们质疑自己参与公众参与的理由。
本文最后提出了在研究中有效合作的实际建议。这些建议包括在招募和入职期间与非专业候选人讨论此类工作可能产生的情感影响，并在整个项目中为受这些影响的非专业人员提供支持；找到解决权力不平衡和实际挑战的方法；以及关于促进非专业群体内部流程的提示，特别是像建立相互信任这样的关系流程。
