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可行性和试点随机对照试验的共同生产:社区合作伙伴、服务使用者和研究团队的学习成果

Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team.

作者信息

McConnell Tracey, Best Paul, Davidson Gavin, McEneaney Tom, Cantrell Cherry, Tully Mark

机构信息

1School of Social Science, Education and Social Work, Queen's University Belfast, Belfast, Northern Ireland.

AWARE NI, Belfast, Northern Ireland.

出版信息

Res Involv Engagem. 2018 Oct 8;4:32. doi: 10.1186/s40900-018-0116-0. eCollection 2018.

DOI:10.1186/s40900-018-0116-0
PMID:30338129
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6174568/
Abstract

PLAIN ENGLISH SUMMARY

Co-producing research with members of the public is increasingly recognised as a valuable process. Yet, despite these good intentions, the literature on coproduction has struggled to keep pace with the coproduction 'movement'. There is a lack of clarity regarding acceptable levels of involvement and attempts at standardising approaches appear generic and lack detail. Moreover, relatively little research has captured the views of all the parties involved (academics, service providers and service users).We conducted interviews with all those involved in developing a new online service for depression in Northern Ireland. Our main questions related to how these three very different groups of people worked together over a two-year period to design, develop and deliver the service (e.g. what were the benefits? What would they do differently?)We found that early involvement was a key factor as this promoted equal ownership. There was also a need to be flexible and recognise other workload pressures. Interestingly, service providers and service users were keen to become more involved in data analysis - this is one of the most under-researched and reported areas within the coproduction literature. Finally, we considered how user involvement worked within complex research designs and how this could be improved. Based on this learning, the paper concludes with a simple 3-step framework that others may wish to follow in order to improve coproduction outcomes within interventions.

ABSTRACT

Co-production, involving members of the public in research, is increasingly encouraged by research funders. However, reports detailing involvement of the public in the entire research process from design, delivery, analysis and dissemination of findings are lacking. Furthermore, little is known about the lessons learnt from the perspective of the public researchers; or more specifically lessons learnt when coproducing specific types of research projects, such as feasibility/pilot studies incorporating a randomised controlled trial (RCT) design. This paper aims to provide a more rounded picture of co-production based on the learning outcomes of researchers, their community partners and service users involved in a feasibility/pilot RCT study developing and evaluating an E-health Service for adults with depression. Qualitative research incorporating 11 semi-structured interviews with academic team members ( = 4), community partners ( = 3) and service users with depression ( = 4) Data were analysed using thematic analysis. Key factors for successful coproduction include - (1) early involvement at the pre-development stage, including contributing to the scientific grant application; (2) early identification of team strengths and expertise from the outset; (3) regular team meetings and contact (formal or informal) among coproduction partners; (4) a flexible and pragmatic approach to research design (particularly within RCTs); (5) shared decision making and responsibility and (6) recognition of 'other' pressures and providing support to each other. Findings also suggested further scope for involving community partners in data analysis and dissemination through co-authored papers. Those seeking to coproduce interventions or utilise RCT designs should consider tensions between data quality and intervention implementation and ethical issues regarding control groups. This paper confirms previous research confirming the benefits of coproduction. However, it also highlights a number of barriers, particularly when using complex research design, such as RCTs. Learning points are summarised in an implementation model for coproducing research. This model may provide a useful guide for considering activities associated with meaningful coproduction. We urge others to test this proposed model more widely in different areas of coproduced research.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/515c/6174568/67f05bd9f865/40900_2018_116_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/515c/6174568/67f05bd9f865/40900_2018_116_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/515c/6174568/67f05bd9f865/40900_2018_116_Fig1_HTML.jpg
摘要

通俗易懂的总结

与公众共同开展研究越来越被视为一个有价值的过程。然而,尽管有这些良好的意愿,关于共同生产的文献却难以跟上共同生产的“潮流”。对于可接受的参与程度缺乏明确性,标准化方法的尝试显得笼统且缺乏细节。此外,相对较少的研究涵盖了所有相关方(学者、服务提供者和服务使用者)的观点。我们对参与开发北爱尔兰一项新的抑郁症在线服务的所有人员进行了访谈。我们的主要问题涉及这三个截然不同的群体在两年时间里如何共同设计、开发和提供该服务(例如,有哪些好处?他们会有哪些不同做法?)我们发现早期参与是一个关键因素,因为这促进了平等的所有权。还需要保持灵活性并认识到其他工作负担压力。有趣的是,服务提供者和服务使用者渴望更多地参与数据分析——这是共同生产文献中研究和报道最少的领域之一。最后,我们思考了用户参与在复杂研究设计中的运作方式以及如何改进。基于这些经验教训,本文以一个简单的三步框架作为结论,其他人可能希望遵循该框架以改善干预措施中的共同生产成果。

摘要

研究资助者越来越鼓励共同生产,即让公众参与研究。然而,缺乏详细描述公众从研究设计、实施、分析到结果传播整个过程参与情况的报告。此外,从公众——研究人员的角度吸取的经验教训,或者更具体地说,在共同开展特定类型的研究项目(如纳入随机对照试验(RCT)设计的可行性/试点研究)时吸取的经验教训,人们了解得很少。本文旨在基于参与一项为患有抑郁症的成年人开发和评估电子健康服务的可行性/试点随机对照试验研究的研究人员、他们的社区合作伙伴和服务使用者的学习成果,更全面地呈现共同生产的情况。采用定性研究方法,对学术团队成员(n = 4)、社区合作伙伴(n = 3)和患有抑郁症的服务使用者(n = 4)进行了11次半结构化访谈。使用主题分析法对数据进行分析。成功的共同生产的关键因素包括:(1)在开发前阶段的早期参与,包括为科研基金申请做出贡献;(2)从一开始就尽早识别团队优势和专业知识;(3)共同生产伙伴之间定期的团队会议和联系(正式或非正式);(4)对研究设计采取灵活务实的方法(特别是在随机对照试验中);(5)共同决策和分担责任;(6)认识到“其他”压力并相互支持。研究结果还表明,通过共同撰写论文让社区合作伙伴参与数据分析和传播还有进一步的空间。那些寻求共同开展干预措施或使用随机对照试验设计的人应该考虑数据质量与干预实施之间的紧张关系以及与对照组相关的伦理问题。本文证实了先前关于共同生产益处的研究。然而,它也突出了一些障碍,特别是在使用复杂研究设计(如随机对照试验)时。学习要点总结在一个共同开展研究的实施模型中。该模型可能为考虑与有意义的共同生产相关的活动提供有用的指导。我们敦促其他人在不同的共同生产研究领域更广泛地测试这个提议的模型。

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