Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: PROSPERO CRD42017053838; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=53838