University of the West of England (UWE), Bristol, UK.
Health Soc Care Community. 2021 Jan;29(1):18-27. doi: 10.1111/hsc.13111. Epub 2020 Jul 23.
The Innovative Medicines Initiative (IMI) is making great strides in promoting patient and public involvement (PPI) in health research across Europe, supporting patient organisations to be involved in the projects that it funds. Despite this, the literature around PPI in health services and research originating from European countries appears less than from the United Kingdom (UK), where PPI is well established. Therefore, we conducted a systematic review to explore the attitudes and approaches to PPI across Europe. Eight scientific databases were systematically searched and data extracted. Data quality was assessed using a checklist based on the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) (Staniszewska et al., Research, Involvement and Engagement, 3, 13, 2017) and the critical appraisal guidelines developed by Wright et al. (Health Expectations, 13, 359, 2010). We included all studies reporting PPI activity in both public and private health services and research institutions in the World Health Organization European region, excluding the UK, published in the English language from 1996 to 2018. Forty studies in total were included in the analysis. The studies imply a growing interest and support for the idea of PPI in health services and, to a lesser extent, in health research. There seems to be a convergence of conceptualisations of PPI across Europe, with internationally significant areas of innovative work taking place in countries such as the Netherlands and the Scandinavian countries. However, the implementation of PPI is highly uneven, and PPI is not yet firmly embedded or adequately formalised in European healthcare systems and research, possibly due to a lack of infrastructure, guidance and support. In order to try to get a better understanding of what is happening on the ground, we are carrying out a survey with potential follow-up interviews as the next part of this research project. This work is currently on hold due to the COVID-19 pandemic.
创新药物倡议（IMI）在促进欧洲健康研究中的患者和公众参与（PPI）方面取得了重大进展，支持患者组织参与其资助的项目。尽管如此，来自欧洲国家的关于健康服务和研究中的 PPI 的文献似乎不如英国（UK）多，在英国，PPI 已经得到很好的建立。因此，我们进行了一项系统综述，以探索欧洲各地对 PPI 的态度和方法。系统地搜索了八个科学数据库并提取了数据。使用基于患者和公众参与指南（GRIPP2）（Staniszewska 等人，研究、参与和参与，第 3 卷，第 13 页，2017 年）和 Wright 等人制定的批判性评估指南（健康期望，第 13 卷，第 359 页，2010 年）检查表评估数据质量。我们纳入了世界卫生组织欧洲区域内所有报告公共和私人卫生服务和研究机构中 PPI 活动的研究，不包括英国，这些研究均以英文发表，时间从 1996 年至 2018 年。总共纳入了 40 项研究进行分析。这些研究表明，人们对健康服务中的 PPI 越来越感兴趣和支持，而对健康研究中的 PPI 的兴趣和支持则较少。欧洲各地似乎对 PPI 的概念有趋同的认识，荷兰和斯堪的纳维亚国家等国家正在开展具有国际意义的创新工作。然而，PPI 的实施非常不均衡，PPI 尚未在欧洲医疗保健系统和研究中牢固地扎根或充分正式化，这可能是由于缺乏基础设施、指导和支持。为了更好地了解实际情况，我们正在进行一项调查，并可能在该研究项目的下一部分进行后续访谈。由于 COVID-19 大流行，这项工作目前暂停。
