Consumer Health Informatics Research: A Scoping Review of Informatics, Information Science and Engineering Literature (Preprint)

BACKGROUND Informatics tools for consumers and patients are important vehicles for facilitating engagement, and the field of consumer health informatics is an key space for exploring the potential of these tools. To understand research findings in this complex and heterogeneous field, a scoping review can help not only to identify, but to bridge, the array of diverse disciplines and publication venues involved. OBJECTIVE The goal of this systematic scoping review was to characterize the extent; range; and nature of research activity in consumer health informatics, focusing on the contributing disciplines of informatics; information science; and engineering. METHODS Four electronic databases (Compendex, LISTA, Library Literature, and INSPEC) were searched for published studies dating from January 1, 2008, to June 1, 2015. Our inclusion criteria specified that they be English-language articles describing empirical studies focusing on consumers; relate to human health; and feature technologies designed to interact directly with consumers. Clinical applications and technologies regulated by the FDA, as well as digital tools that do not provide individualized information, were excluded. RESULTS We identified 271 studies in 63 unique journals and 22 unique conference proceedings. Sixty-five percent of these studies were found in health informatics journals; 23% in information science and library science; 15% in computer science; 4% in medicine; and 5% in other fields, ranging from engineering to education. A single journal, the Journal of Medical Internet Research, was home to 36% of the studies. Sixty-two percent of these studies relied on quantitative methods, 55% on qualitative methods, and 17% were mixed-method studies. Seventy percent of studies used no specific theoretical framework; of those that did, Social Cognitive Theory appeared the most frequently, in 16 studies. Fifty-two studies identified problems with technology adoption, acceptance, or use, 38% of these barriers being machine-centered (for example, content or computer-based), and 62% user-centered, the most frequently mentioned being attitude and motivation toward technology. One hundred and twenty-six interventional studies investigated disparities or heterogeneity in treatment effects in specific populations. The most frequent disparity investigated was gender (13 studies), followed closely by race/ethnicity (11). Half the studies focused on a specific diagnosis, most commonly diabetes and cancer; 30% focused on a health behavior, usually information-seeking. Gaps were found in reporting of study design, with only 46% of studies reporting on specific methodological details. Missing details were response rates, since 59% of survey studies did not provide them; and participant retention rates, since 53% of interventional studies did not provide this information. Participant demographics were usually not reported beyond gender and age. Only 17% studies informed the reader of their theoretical basis, and only 4 studies focused on theory at the group, network, organizational or ecological levels—the majority being either health behavior or interpersonal theories. Finally, of the 131 studies describing the design of a new technology, 81% did not involve either patients or consumers in their design. In fact, while consumer and patient were necessarily core concepts in this literature, these terms were often used interchangeably. The research literature of consumer health informatics at present is scattered across research fields; only 49% of studies from these disciplines is indexed by MEDLINE and studies in computer science are siloed in a user interface that makes exploration of that literature difficult. CONCLUSIONS Few studies analyzed in this scoping review were based in theory, and very little was presented in this literature about the life context, motives for technology use, and personal characteristics of study participants.