Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team.
Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team.
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DOI：
10.1186/s40900-018-0116-0
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发表时间：
2018
影响因子：
--
通讯作者：
Tully M
中科院分区：
文献类型：
--
作者：
McConnell T;Best P;Davidson G;McEneaney T;Cantrell C;Tully M
与公众共同开展研究越来越被认为是一个有价值的过程。然而，尽管有这些良好的愿望，有关联合制作的文献仍然难以跟上联合制作“运动”的步伐。关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而缺乏细节。此外，很少有研究能够涵盖所有相关方（学术界、服务提供商和服务用户）的观点。我们采访了所有参与北爱尔兰抑郁症在线服务开发的人员。我们的主要问题涉及这三个截然不同的群体如何在两年的时间内一起工作来设计、开发和提供服务（例如，有什么好处？他们会采取什么不同的做法？）我们发现早期参与是一个关键因素，因为这促进了平等所有权。还需要保持灵活性并认识到其他工作压力。有趣的是，服务提供商和服务用户渴望更多地参与数据分析——这是联合制作文献中研究和报道最多的领域之一。最后，我们考虑了用户参与如何在复杂的研究设计中发挥作用以及如何改进。基于这一认识，本文得出了一个简单的三步框架，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结果。 背景 研究资助者越来越鼓励公众参与研究的联合生产。然而，缺乏详细说明公众参与从设计、交付、分析到传播结果的整个研究过程的报告。此外，人们对从公众和研究人员的角度吸取的教训知之甚少；或者更具体地说，在共同开展特定类型的研究项目时吸取的经验教训，例如纳入随机对照试验（RCT）设计的可行性/试点研究。本文旨在根据参与可行性/试点 RCT 研究的研究人员、社区合作伙伴和服务用户的学习成果，提供更全面的联合生产图景，该研究为成人抑郁症患者开发和评估电子医疗服务。 方法 采用定性研究，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 11 次半结构化访谈，使用主题分析对数据进行分析。 结果 成功联合生产的关键因素包括： (1) 早期参与预开发阶段，包括为科学资助申请做出贡献； (2) 从一开始就尽早识别团队的优势和专业知识； (3) 合拍伙伴之间定期举行团队会议和联系（正式或非正式）； (4) 灵活务实的研究设计方法（特别是随机对照试验）； (5) 共同决策和承担责任；(6) 认识到“其他”压力并相互提供支持。调查结果还表明，通过共同撰写的论文，可以进一步让社区合作伙伴参与数据分析和传播。那些寻求共同制定干预措施或利用随机对照试验设计的人应该考虑数据质量和干预措施实施之间的紧张关系以及有关对照组的道德问题。 结论 本文证实了先前的研究，证实了联合生产的好处。然而，它也凸显了一些障碍，特别是在使用复杂的研究设计（例如随机对照试验）时。学习要点总结在联合生产研究的实施模型中。该模型可以为考虑与有意义的合作生产相关的活动提供有用的指导。我们敦促其他人在联合研究的不同领域更广泛地测试这个提出的模型。本文的在线版本 (10.1186/s40900-018-0116-0) 包含补充材料，可供授权用户使用。
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. Background 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 and 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. Methods Qualitative research incorporating 11 semi-structured interviews with academic team members (n = 4), community partners (n = 3) and service users with depression (n = 4) Data were analysed using thematic analysis. Results 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. Conclusion 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. The online version of this article (10.1186/s40900-018-0116-0) contains supplementary material, which is available to authorized users.