Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors. The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study. Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes. The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors’ final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.

中文翻译：

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英格兰东部地区工作：使用英国公众参与国家标准

在英国 (UK) 的健康研究中，建议让患者和公众参与来帮助塑造和开展研究。有许多患者和公众参与 (PPI) 团体的区域网络，它们支持研究人员、患者和公众成员之间的合作。我们是一组研究人员、患者和公众成员，他们通过英格兰东部的 PPI 区域网络聚集在一起，就研究人员对 PPI 贡献者的反馈程度进行合作研究。本文的目的是使用最近制定的英国公众参与国家标准来构建我们对在我们最近完成的研究中哪些行之有效，哪些行之有效的思考。我们相信这篇论文是最早使用国家标准在研究中构建对 PPI 的回顾性反思的论文之一。我们的研究结果表明，区域工作有很多好处，包括更容易接触到公共成员，以及将研究人员、公共成员和 PPI 小组的运营者聚集在一起进行研究合作。主要挑战包括在资助研究之前让人们参与，以及在具有不同支付流程的组织之间开展工作。公众参与的国家标准提供了一个有用的框架来考虑如何最好地让患者和公众参与研究，并且可能是一个有用的结构来反映单个项目的成功和挑战以及 PPI 的区域、国家或国际比较在研究中。背景 患者和公众参与 (PPI) 组织的区域网络，包括学术机构、健康和社会护理服务、慈善机构、患者和公共团体和个人，可以在开展健康研究中发挥重要作用。在英国，国家卫生研究院 (NIHR) 的建议鼓励使用具有共享资源和培训的区域协作网络。方法 在最近完成的一项研究中，新制定的英国公众参与国家标准被用作回顾性反映 PPI 的框架，该研究侧重于研究人员对 PPI 贡献者的反馈。PPI 贡献者，那些运行 PPI 小组（PPI 领导）和参与研究的研究人员通过在整个研究过程中完成评估表以及会议记录和共同作者的最终反思，为这一反思做出了贡献。结果 结果显示，区域网络在汇集 PPI 贡献者、领导 PPI 小组和研究人员方面特别有用，取得了许多成功。该区域网络帮助研究人员与患者和公众取得联系。挑战包括在该地区的不同组织之间工作时，在获得资金之前涉及人员以及官僚和财务障碍。以灵活、非正式的方式合作的重要性是关键，对 PPI 贡献者的持续支持对于继续参与至关重要，包括情感支持，而不仅仅是金钱。包容性机会、合作、支持、学习和交流的前四项国家标准对于构建我们的反思特别有用。结论 据我们所知，这是最早使用英国公众参与国家标准作为框架来确定哪些方法行之有效以及 PPI 流程面临的挑战的研究之一。建议随着更多反思性论文的发表和英国更广泛地使用国家标准，可以吸取和分享许多经验教训，以提高我们在研究中的患者和公众参与度。诸如此类的评估或反思可以进一步增强我们对 PPI 的理解，并对区域、