Defining participatory health informatics – a scoping review

Healthcare has been shifting toward individuals participating in decision-making and empowered to be active in their treatment, and health monitoring. The term “participatory health informatics” (PHI) started to appear in literature. A clear definition of PHI is missing, and facets of PHI still have to be shaped. The objective of this paper is to offer a definition of PHI considering themes and technologies that make healthcare participatory. We searched Pubmed, ACM Digital Library, IEEE Xplore, EMBASE, and conference proceedings for articles that reported about use of information technology or informatics in the context of PHI. We performed qualitative synthesis and reported summary statistics. 39 studies were eligible after screening 382 titles and abstracts and reviewing 82 full texts. The top 5 person-centered key themes related to PHI included empowerment, decision-making, informed patient, collaboration, and disease management. Finally, we propose to define PHI as multidisciplinary field that uses information technology as provided through the web, smartphones, or wearables to increase participation of individuals in their care process and to enable them in self-care and shared decision-making. Goals to be achieved through PHI include maintaining health and well-being; improving the healthcare system and health outcomes; sharing experiences; achieving life goals; and self-education.