Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review.

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing.

Patient-generated data in the management of HIV: a scoping review.

OBJECTIVES: Patient-generated data (PGData) are an emergent research area and may improve HIV care. The objectives of this scoping review were to synthesise, evaluate and make recommendations based on the available literature regarding PGData use in HIV care. DESIGN: Scoping review. DATA SOURCES: Embase, Medline, CINAHL Plus, Web of Science, Scopus, PsycINFO and Emcare databases. ELIGIBILITY CRITERIA: Studies involving PGData use within HIV care for people living with HIV and/or healthcare professionals (HCPs) published before February 2021. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a table and the Mixed Methods Appraisal Tool was used to assess empirical rigour. We used thematic analysis to evaluate content. RESULTS: 11 articles met the eligibility criteria. Studies were observational, predominantly concerned hypothetical or novel digital platforms, mainly conducted in high-income settings, and had small sample sizes (range=10-160). There were multiple definitions of PGData. In the majority of studies (n=9), participants were people living with HIV, with a few studies including HCPs, informatics specialists or mixed participant groups. Participants living with HIV were aged 23-78 years, mostly men, of diverse ethnicities, and had low educational, health literacy and income levels.We identified four key themes: (1) Perceptions of PGData and associated digital platforms; (2) Opportunities; (3) Anticipated barriers and (4) Potential impact on patient-HCP relationships. CONCLUSIONS: Use of PGData within HIV care warrants further study, especially with regard to digital inequalities, data privacy and security. There is a need for longitudinal data on use within HIV in a variety of settings with a broad range of users, including impact on clinical outcomes. This will allow greater understanding of the role of PGData use in improving the health and well-being of people living with HIV, which is increasingly pertinent as digital healthcare becomes more widespread as a result of COVID-19.