Mitchell C, Burke K, Halford N, Rothwell K, Darley S, Woodward-Nutt K, Bowen A, Patchwood E
1Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Patient and Carer Public Involvement (PCPI) contributors: lay members of the OSCARSS Carer Research User Group, Manchester, UK.
Res Involv Engagem. 2020 May 8;6:21. doi: 10.1186/s40900-020-00193-7. eCollection 2020.
Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation.
A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors. The PCPI activity involved regular meetings and preparatory work, from the initial conceptualisation of the study through to dissemination. Written reports, structured group discussions and individual interviews were carried out with the RUG and researchers to capture the added value and learning. This paper was co-authored by two of the RUG members with contributions from the wider RUG and researchers.
The core six members of the caregiver RUG attended the majority of the meetings alongside three researchers, one of whom was the co-chief investigator. PCPI was instrumental in changing many aspects of the research protocol, design and delivery and contributed to dissemination and sharing of good practice. There were challenges due to the emotional toll when PCPI members shared their stories and the extensive time commitment. Positive experiences of learning and fulfilment were reported by the individual researchers and PCPI members. Wider organisational administrative and financial support facilitated the PCPI. The researchers' existing positive regard for PCPI and the clear focus of the group were key to the successful co-design of this research.
The value and learning from the PCPI collaborative work with the researchers was of benefit to the study and the individuals involved. Specific PCPI influences were a challenge to pinpoint as successful co-design meant the researchers' and carers' contributions were intertwined and decision-making shared.
患者、护理人员及公众参与（PCPI）应融入医疗保健研究。开展PCPI可能具有挑战性，但即便开展了PCPI，其报告也很少，从而失去了学习机会。本文旨在描述OSCARSS研究中的PCPI，这是一项实用型整群随机对照试验，并嵌入了经济和过程评估。
一个护理人员研究用户组（RUG）共同开发了OSCARSS，以评估如何最好地为中风幸存者的护理人员提供支持。PCPI活动包括定期会议和筹备工作，从研究的最初概念化到传播阶段。与RUG成员和研究人员进行了书面报告、结构化小组讨论和个人访谈，以获取附加值和经验教训。本文由两名RUG成员共同撰写，更广泛的RUG成员和研究人员也做出了贡献。
护理人员RUG的核心六名成员与三名研究人员一起参加了大部分会议，其中一名研究人员是共同首席研究员。PCPI在改变研究方案、设计和实施的许多方面发挥了重要作用，并有助于传播和分享良好实践。由于PCPI成员分享他们的故事时造成的情感代价以及大量的时间投入，存在一些挑战。个别研究人员和PCPI成员报告了学习和成就感等积极体验。更广泛的组织行政和财政支持促进了PCPI。研究人员对PCPI现有的积极态度以及该小组明确的重点是这项研究成功共同设计的关键。
与研究人员开展PCPI合作工作所产生的价值和经验教训对研究及相关个人有益。由于成功的共同设计意味着研究人员和护理人员的贡献相互交织且共同决策，因此很难确定PCPI的具体影响。
