Article Text

Original research
Patient-generated data in the management of HIV: a scoping review
  1. Clara Hewitt1,
  2. Karen C Lloyd1,
  3. Shema Tariq1,
  4. Abigail Durrant2,
  5. Caroline Claisse2,
  6. Bakita Kasadha3,
  7. Jo Gibbs1
  1. 1Institute for Global Health, University College London, London, UK
  2. 2Open Lab, School of Computing, Newcastle University, Newcastle upon Tyne, UK
  3. 3Terrence Higgins Trust, London, UK
  1. Correspondence to Dr Karen C Lloyd; k.lloyd{at}


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.

  • HIV & AIDS
  • telemedicine
  • genitourinary medicine

Data availability statement

All data relevant to the study are included in the article or uploaded as supplemental information. This manuscript reports on a scoping review. All articles included in the sample are included in the article and/or as supplemental material.

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplemental information. This manuscript reports on a scoping review. All articles included in the sample are included in the article and/or as supplemental material.

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  • Twitter @KarenCLloyd, @savoy__truffle, @abigail_durrant, @CarolineClaisse, @BakitaKK, @jogibbs76

  • Collaborators Not applicable.

  • Contributors CH, KCL, ST, AD, CC, BK and JG contributed to the conception and/or design of the study. CH led, and KCL and JG contributed to the establishment of the search strategy and method of analysis. Article reviewing and data analysis were led by CH with contribution from KCL and JG. CH drafted the original manuscript with supervision and guidance from JG, KCL and ST. All authors (CC, KCL, ST, AD, CC, BK and JG) have made contributions to the drafting and revising of the article, and have approved the final version.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. All authors (with the exception of CH) receive research funding from the INTUIT (Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV) research project, which is funded by the Engineering and Physical Sciences Research Council (EP/R033900/1).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.