Moore Gaye, Wilding Helen, Gray Kathleen, Castle David
Mental Health Executive Services, St Vincent's Hospital, Melbourne, Fitzroy, Australia.
Department of Nursing, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Australia.
J Particip Med. 2019 Feb 22;11(1):e11474. doi: 10.2196/11474.
When health service providers (HSP) plan to develop electronic health (eHealth) resources for health service users (HSU), the latter's involvement is essential. Typically, however, HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the eHealth context. Furthermore, it can be difficult to identify an established method to use, or determine how to work stepwise through any particular process.
We sought to summarize the evidence about participatory methods and frameworks used to engage HSU in the development of eHealth resources from the beginning of the design process.
We searched for studies reporting participatory processes in initial development of eHealth resources from 2006 to 2016 in 9 bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycINFO, Emcare, Cochrane Library, Web of Science, ACM Guide to Computing Literature, and IEEE Xplore. From 15,117 records initially screened on title and abstract for relevance to eHealth and early participatory design, 603 studies were assessed for eligibility on full text. The remaining 90 studies were rated by 2 reviewers using the Mixed Methods Appraisal Tool Version 2011 (Pluye et al; MMAT) and analyzed with respect to health area, purpose, technology type, and country of study. The 30 studies scoring 90% or higher on MMAT were included in a detailed qualitative synthesis.
Of the 90 MMAT-rated studies, the highest reported (1) health areas were cancer and mental disorders, (2) eHealth technologies were websites and mobile apps, (3) targeted populations were youth and women, and (4) countries of study were the United States, the United Kingdom, and the Netherlands. Of the top 30 studies the highest reported participatory frameworks were User-Centered Design, Participatory Action Research Framework, and the Center for eHealth Research and Disease Management (CeHRes) Roadmap, and the highest reported model underpinning development and engagement was Social Cognitive Theory. Of the 30 studies, 4 reported on all the 5 stages of the CeHRes Roadmap.
The top 30 studies yielded 24 participatory frameworks. Many studies referred to using participatory design methods without reference to a framework. The application of a structured framework such as the CeHRes Roadmap and a model such as Social Cognitive Theory creates a foundation for a well-designed eHealth initiative that ensures clarity and enables replication across participatory design projects. The framework and model need to be clearly articulated and address issues that include resource availability, responsiveness to change, and the criteria for good practice. This review creates an information resource for future eHealth developers, to guide the design of their eHealth resource with a framework that can support further evaluation and development.
PROSPERO CRD42017053838; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=53838.
当医疗服务提供者（HSP）计划为医疗服务使用者（HSU）开发电子健康（eHealth）资源时，后者的参与至关重要。然而，通常情况下，参与资源制作的HSP、HSU和技术开发者缺乏适合电子健康背景的参与式设计方法方面的专业知识。此外，可能难以确定一种既定的方法来使用，或者难以确定如何逐步完成任何特定流程。
我们试图总结关于在设计过程开始时让HSU参与电子健康资源开发所使用的参与式方法和框架的证据。
我们在9个文献数据库中搜索了2006年至2016年期间报告电子健康资源初始开发中参与式过程的研究：医学索引数据库（MEDLINE）、荷兰医学文摘数据库（EMBASE）、护理学与健康领域数据库（CINAHL）、心理学文摘数据库（PsycINFO）、循证医学数据库（Emcare）、考科蓝图书馆（Cochrane Library）、科学引文索引（Web of Science）、美国计算机协会计算文献指南（ACM Guide to Computing Literature）和电气与电子工程师协会数据库（IEEE Xplore）。从最初根据标题和摘要筛选出的15117条与电子健康和早期参与式设计相关的记录中，对603项研究进行了全文资格评估。其余90项研究由2名评审员使用2011年版混合方法评估工具（Pluye等人；MMAT）进行评分，并就健康领域、目的、技术类型和研究国家进行分析。在MMAT上得分90%或更高的30项研究被纳入详细的定性综合分析。
在90项经MMAT评分的研究中，报告最多的（1）健康领域是癌症和精神障碍，（2）电子健康技术是网站和移动应用程序，（3）目标人群是青年和女性，（4）研究国家是美国、英国和荷兰。在排名前30的研究中，报告最多的参与式框架是用户中心设计、参与式行动研究框架和电子健康研究与疾病管理中心（CeHRes）路线图，报告最多的支撑开发和参与的模型是社会认知理论。在这30项研究中，有4项报告了CeHRes路线图的所有5个阶段。
排名前30的研究产生了24个参与式框架。许多研究提到使用参与式设计方法，但未提及框架。应用诸如CeHRes路线图这样的结构化框架和诸如社会认知理论这样的模型为精心设计的电子健康计划奠定了基础，该计划确保清晰性并能够在参与式设计项目中进行复制。该框架和模型需要清晰阐述，并解决包括资源可用性、对变化的响应能力以及良好实践标准等问题。本综述为未来的电子健康开发者创建了一个信息资源，以指导他们使用能够支持进一步评估和开发的框架来设计电子健康资源。
国际系统评价注册库（PROSPERO）CRD42017053838；https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=53838 。
