JMIR Publications

ABSTRACT

Background:

Digital innovations are expected to continue shaping health and healthcare. As technology socially penetrates multiple domains of daily living, the lives of healthcare consumers are transformed into a key source of health information, commonly referred to as patient-generated health data (PGHD). With chronic disease prevalence signaling the need for a re-focus on primary prevention, electronic PGHD might play an important role towards a much-needed strengthening of pro-active and person-centered healthcare.

Objective:

This study aims to review and synthesize existing literature on the utilization and implications of electronic PGHD for primary prevention and health promotion purposes.

Methods:

Our methodology was guided by a widely used and well-accepted methodological framework for scoping studies. We applied a sensitive search strategy to Medline, CINAHL, PsycInfo, Scopus, Web of Science, EMBASE and IEEE Digital Library. We hand-searched five electronic journals and four grey literature sources, additionally conducted web engine searches, screened relevant webpages, manually screened reference lists and consulted authors. Using pre-defined eligibility criteria, two reviewers independently conducted title and abstract as well as full-text screening. Data extraction and synthesis where guided by an adapted PGHD-flow framework. Beyond initial quantitative synthesis, the majority of data were reported narratively, based on an iterative thematic approach, coding and clustering.

Results:

Eligibility criteria were fulfilled by 183 methodologically and thematically heterogeneous studies, applying electronic PGHD to prevent disease by targeting knowledge, behavior, structural change and surveillance. The majority of literature (68%) targeted weight reduction, physical activity and nutrition, applying a range of electronic tools, from mobile phones to medical devices. Most studies included participants that generated their data actively (55%) or partially actively (34%), resulting in textual-numerical, photographic, audiovisual and wave-form PGHD types. About 11% of the literature entailed passive PGHD collection, primarily in form of wave and signal data. The majority of studies (94%) combined PGHD with informative/reflective, motivational, educational and guiding intervention components, while 60% explored automatized interventions. 26% of the studies provided indications on the potential impact of PGHD on (1) vitals and body composition measures, (2) behavioral change and (3) knowledge outcomes, with overall positive trends being suggested for the first. Potential equity implications were often addressed (45%) but remained largely unexplored. Barriers and facilitators of electronic PGHD use clustered around data collection and use, technical and design considerations, ethics, user characteristics as well as intervention context and content.

Conclusions:

The large, heterogeneous volume of PGHD-literature underlines the topic’s emerging nature. Utilizing electronic PGHD to prevent disease and promote health is a complex matter, arising from mostly being integrated within automatized and multicomponent interventions. This underlines a trend towards stronger digitalization and less provider involvement. Ensuring effectiveness, we require practice that is sensitive to identified barriers, facilitators, consumer roles and equity considerations.