Generative Participatory Design Methodology to Develop Electronic Health Interventions: Systematic Literature Review

BACKGROUND: Generative participatory design (PD) may help in developing electronic health (eHealth) interventions. PD is characterized by the involvement of all stakeholders in creative activities. This is different from the traditional user-centered design, where users are less involved. When looking at PD from a research through design perspective, it is important to summarize the reasons for choosing a certain form of generative PD to further develop its methodology. However, the scientific literature is currently unclear about which forms of PD are used to develop eHealth and which arguments are used to substantiate the decision to use a certain form of generative PD. OBJECTIVE: This study aimed to explore the reporting and substantiation of generative PD methodologies in empirical eHealth studies published in scientific journals to further develop PD methodology in the field of eHealth. METHODS: A systematic literature review following the Cochrane guidelines was conducted in several databases (EMBASE, MEDLINE Ovid, Web of Science, and CINAHL EBSCOhost). Data were extracted on the recruitment and management of stakeholders, the use of tools, and the use of outcome measures. RESULTS: Of the 3131 studies initially identified, 69 were selected for qualitative synthesis. The reporting was very variable, depending to a large extent on whether the study stated that reporting on the PD process was a major aim. The different levels of reporting and substantiation of the choices of a recruitment strategy, stakeholder management, and tools and outcome measures are presented. Only a few authors explicitly used arguments directly related to PD guiding principles such as democratic, mutual learning, tacit and latent knowledge, and collective creativity. Even though PD principles were not always explicitly discussed in the method descriptions of the studies, they were implicitly present, mostly in the descriptions of the use of PD tools. The arguments used to substantiate the choices made in stakeholder management, PD tools, and the type of outcome measures adopted point to the involvement of PD principles. CONCLUSIONS: Studies that have used a PD research methodology to develop eHealth primarily substantiate the choice of tools made and much less the use of stakeholders and outcome measures.