The challenges and opportunities of personal health data tracking and sharing amongst people living with HIV in the United Kingdom and their specialist healthcare providers.

OBJECTIVE

There has been an increase in digital tools and wearable devices that can be used by individuals to collect, track and share their personal health data (PHD). Collecting PHD could be particularly useful for those living with long-term conditions such as HIV. We explored attitudes to and experiences of tracking and sharing PHD in order to identify the challenges and opportunities within HIV care in the United Kingdom.

METHODS

We conducted a qualitative study comprising 24 semi-structured interviews with service users (SUs) (n = 10) and healthcare professionals (HCPs) (n = 14) between February and November 2020. Transcripts were analysed collaboratively using Thematic Analysis.

RESULTS

There was wide variation in the extent and types of PHD tracked and shared, and how this was done. Key themes included the use of PHD to enhance empowerment and self-knowledge about health, PHD enabling better clinical care, PHD impacting clinical consultations and SU-HCP relationships, the burden of PHD tracking, and privacy and data security concerns.

CONCLUSIONS

Our findings highlight the opportunities and challenges of tracking and sharing PHD in the context of HIV, especially in view of increasing remote and digital clinical care throughout the National Health Service. Opportunities included enhanced autonomy and control over health and facilitating improved relationships and communication between SUs and HCPs. However, these opportunities must be considered in the context of constraints of service delivery and potential burden to SUs and HCPs, as well as key challenges regarding privacy.