Exploring the data-sharing ecosystem in HIV care: Healthcare professionals' beliefs and practices

ABSTRACT

Background: Understanding data-sharing in HIV care is timely given the shift to remote consultations during COVID-19 and increasing expectations for self-management. We describe the 'data-sharing ecosystem' in HIV care by analysing HIV healthcare professional (HCP) beliefs and practices around sharing diverse types of service user and clinic-generated data across multiple contexts. Method: During February-October 2020, we conducted 14 semi-structured interviews with HCPs working in a large UK HIV outpatient service. Participants engaged in a card sorting task, sorting 33 data types routinely shared in HIV care into categories (comfortable/not comfortable/ not sure) across three data-sharing contexts (a) from service users to HCPs in consultations;(b) HCPs to GPs;and (c) HCPs to non-HIV HCPs. Data were analysed thematically. Results: Over half (57%) of participants were female;57% were doctors. Participants had worked in HIV for 12 years on average. HCPs were comfortable with a wide range of data being shared with them by service users. Across all sharing contexts, HCPs were uncomfortable with sharing of service user photographs, perceiving them as not routinely shared, unnecessary, and potentially risking inadvertent sharing of inappropriate content. HCPs were comfortable sharing data with GPs and other non-HIV HCPs in two broad categories (a) demographic data (e.g. age) and (b) non-sensitive data related to general health (e.g. sleep). HCPs were less comfortable sharing sensitive information about HIV status, sexual health, behaviour and identity, perceiving them as not relevant to care provided by other HCPs or as risking stigmatisation. Service user consent and relevance of data to sharing context were key determinants of data-sharing comfort. Conclusion: With a growing emphasis on self-management of HIV and on remote care provision, understanding the context of data-sharing in HIV care is increasingly important, particularly given the perceived durability of some current service changes as a result of COVID-19. We demonstrate the complex interplay of data types, relationship dynamics, and contexts of care provision that shape the data-sharing ecosystem in HIV care. Developing guidance on the sharing of service user and clinic-generated data in HIV care must account for these complexities.