Small Nicola, Ong Bie Nio, Lewis Annmarie, Allen Dawn, Bagshaw Nigel, Nahar Papreen, Sanders Caroline
NIHR School for Primary Care Research, University of Manchester, Manchester, UK.
Patient and Public Involvement and Engagement Contributor, Manchester, UK.
Res Involv Engagem. 2021 Nov 27;7(1):85. doi: 10.1186/s40900-021-00329-3.
The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data.
Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data.
PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study.
Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).
我们收集和使用患者体验数据的方式对于优化医疗服务的质量和安全性至关重要。然而，由于数据收集、分析和呈现方式有限，一些患者和护理人员并未提供反馈。在本研究中，我们与研究人员、工作人员、患者及护理人员参与者以及患者和公众参与及介入（PPIE）贡献者合作，共同设计用于在多种医疗环境中收集和使用患者体验数据的新工具。本文概述了PPIE和研究活动的范围如何促成了用于收集患者体验数据的新工具的共同设计。
八名公众贡献者代表了专科服务中一系列相关的患者和护理人员经历，他们具有不同程度的PPIE经验，并且来自两家全科诊所的患者与参与小组（PPG）的十一名成员在研究开始时组成了我们的PPIE小组。使用幻灯片集引发与工作人员、患者及护理人员研究参与者以及PPIE贡献者的共同设计讨论。结合研究数据中的主题，呈现了PPIE贡献者的反馈以及工作人员、患者及护理人员研究参与者的逐字引用。
来自四个主题的PPIE见解：收集体验数据；采用数字或非数字工具；确保隐私和保密性；以及共同设计一套带有指南的新工具，为工具的塑造以及如何实施这些工具提供了明智的联合决策。我们的PPIE贡献者在新工具的共同设计和测试过程中扮演了不同角色，这支持了该研究的共同生产。
我们为这项复杂研究开展多个PPIE工作组成部分的经验表明，使PPIE适应不同环境并最大化个人优势和能力非常重要。我们的研究展示了汇聚不同经验、将患者和护理人员置于改善国民保健服务核心位置以及采用共同方法管理共同设计参与度的价值，其效果通过研究过程、结果和伙伴关系得以体现。我们反思了在出现意外挑战（如突然丧亲）时我们如何共同努力营造一个支持性环境。
