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

Hewitt, C; Lloyd, KC; Tariq, S; Durrant, A; Claisse, C; Kasadha, B; Gibbs, J; (2021) Patient-generated data in the management of HIV: a scoping review. BMJ Open , 11 (5) , Article e046393. 10.1136/bmjopen-2020-046393. Green open access

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Abstract

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.

Type: Article
Title: Patient-generated data in the management of HIV: a scoping review
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjopen-2020-046393
Publisher version: http://doi.org/10.1136/bmjopen-2020-046393
Language: English
Additional information: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute for Global Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute for Global Health > Infection and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/10128513
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