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

Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV

Resulting from treatment advances, the Human Immunodeficiency Virus (HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their attitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. They indicated willingness to share digital identity attributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. These findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions

Trust, Identity, Privacy, and Security Considerations For Designing a Peer Data Sharing Platform Between People Living With HIV

Resulting from treatment advances, the Human Immunodeficiency Virus(HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their atitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. Tey indicated willingness to share digital identity atributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. Tese findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions

Study protocol: the ILANA study - exploring optimal implementation strategies for long-acting antiretroviral therapy to ensure equity in clinical care and policy for women, racially minoritised people and older people living with HIV in the UK - a qualitative multiphase longitudinal study design.

INTRODUCTION: Cabotegravir and rilpivirine (CAB+RPV long-acting (LA)) is recommended as a treatment for HIV-1 allowing people living with HIV to receive 2 monthly injectable treatment, rather than daily pills. Providing injectable therapy in a system designed to provide and manage study participants on oral treatments poses logistical challenges namely how resources are used to accommodate patient preference within constrained health economies with capacity limitations. In this pragmatic multicentre study, we aim to understand the implementation of CAB-RPV-LA administration in two settings via mixed methods to explore perspectives of participants and the clinical team delivering CAB+RPV LA. METHODS AND ANALYSIS: Women, racially minoritised people and older people are chronically under-represented in HIV clinical trials so the ILANA trial has set recruitment caps to ensure recruitment of 50% women, 50% ethnically diverse people and 30% over 50 years of age to include a more representative study population. Using a mixed-methods approach, the primary objective is to identify and evaluate the critical implementation strategies for CAB+RPV LA in both hospital and community settings. Secondary objectives include evaluating feasibility and acceptability of CAB+RPV LA administration at UK clinics and community settings from the perspective of HIV care providers, nurses and representatives at community sites, evaluating barriers to implementation, the utility of implementation strategies and adherence. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Health Research Authority Research Ethics Committee (REC reference: 22/PR/0318). The dissemination strategy has been formulated with the SHARE Collaborative Community Advisory Board to maximise the impact of this work on clinical care and policy. This strategy draws on and leverages existing resources within the participating organisations, such as their academic infrastructure, professional relationships and community networks. The strategy will leverage the Public Engagement Team and press office to support dissemination of findings. TRIAL REGISTRATION NUMBER: NCT05294159

Reducing the risk of stroke: looking beyond lifestyle changes

Public health campaigns have led to more widespread awareness of the signs of stroke, but what can be done to raise awareness of stroke prevention interventions? Bakita Kasadha explores the actions that can be taken beyond individual lifestyle changes, and discusses the extent to which risk factors can be ‘modifiable’