Kovacs Burns Katharina, Bellows Mandy, Eigenseher Carol, Gallivan Jennifer
Health Sciences Council and Interdisciplinary Health Research Academy, 3-389 Edmonton Clinic Health Academy, University of Alberta, 11405 - 87 Avenue, Edmonton T6G 1C9, Alberta, Canada.
BMC Health Serv Res. 2014 Apr 15;14:175. doi: 10.1186/1472-6963-14-175.
Extensive literature exists on public involvement or engagement, but what actual tools or guides exist that are practical, tested and easy to use specifically for initiating and implementing patient and family engagement, is uncertain. No comprehensive review and synthesis of general international published or grey literature on this specific topic was found. A systematic scoping review of published and grey literature is, therefore, appropriate for searching through the vast general engagement literature to identify 'patient/family engagement' tools and guides applicable in health organization decision-making, such as within Alberta Health Services in Alberta, Canada. This latter organization requested this search and review to inform the contents of a patient engagement resource kit for patients, providers and leaders.
Search terms related to 'patient engagement', tools, guides, education and infrastructure or resources, were applied to published literature databases and grey literature search engines. Grey literature also included United States, Australia and Europe where most known public engagement practices exist, and Canada as the location for this study. Inclusion and exclusion criteria were set, and include: English documents referencing 'patient engagement' with specific criteria, and published between 1995 and 2011. For document analysis and synthesis, document analysis worksheets were used by three reviewers for the selected 224 published and 193 grey literature documents. Inter-rater reliability was ensured for the final reviews and syntheses of 76 published and 193 grey documents.
Seven key themes emerged from the literature synthesis analysis, and were identified for patient, provider and/or leader groups. Articles/items within each theme were clustered under main topic areas of 'tools', 'education' and 'infrastructure'. The synthesis and findings in the literature include 15 different terms and definitions for 'patient engagement', 17 different engagement models, numerous barriers and benefits, and 34 toolkits for various patient engagement and evaluation initiatives.
Patient engagement is very complex. This scoping review for patient/family engagement tools and guides is a good start for a resource inventory and can guide the content development of a patient engagement resource kit to be used by patients/families, healthcare providers and administrators.
关于公众参与已有大量文献，但对于专门用于启动和实施患者及家属参与且实用、经过测试且易于使用的实际工具或指南，目前尚不确定。未发现对该特定主题的国际已发表或灰色文献进行全面的综述和综合。因此，对已发表和灰色文献进行系统的范围综述，适合在大量的一般参与文献中进行搜索，以识别适用于卫生组织决策（如加拿大艾伯塔省的艾伯塔卫生服务局）的“患者/家属参与”工具和指南。后一个组织要求进行此次搜索和综述，以为面向患者、提供者和领导者的患者参与资源工具包的内容提供信息。
将与“患者参与”、工具、指南、教育以及基础设施或资源相关的搜索词应用于已发表文献数据库和灰色文献搜索引擎。灰色文献还包括存在大多数知名公众参与实践的美国、澳大利亚和欧洲，以及作为本研究地点的加拿大。设定了纳入和排除标准，包括：1995年至2011年期间发表的、以特定标准引用“患者参与”的英文文献。对于文献分析和综合，三位评审员使用文献分析工作表对选定的224篇已发表文献和193篇灰色文献进行分析。在对76篇已发表文献和193篇灰色文献进行最终评审和综合时，确保了评分者间的可靠性。
文献综合分析得出七个关键主题，并针对患者、提供者和/或领导者群体进行了识别。每个主题下的文章/条目归为“工具”、“教育”和“基础设施”等主要主题领域。文献中的综合内容和研究结果包括“患者参与”的15种不同术语和定义、17种不同的参与模式、众多障碍和益处，以及34个针对各种患者参与和评估举措的工具包。
患者参与非常复杂。此次对患者/家属参与工具和指南的范围综述是资源清查的良好开端，可指导患者/家属、医疗保健提供者和管理人员使用的患者参与资源工具包的内容开发。
