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.
ABSTRACT
Background Understanding data-sharing in HIV care is timely given the shift to remote consultations during COVID-19. We describe the 'data-sharing ecosystem' in HIV care by analysingHIV healthcare professional (HCP) beliefs and practices around sharing diverse types of service user and clinic-generated data across multiple contexts. Methods 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) service users to HCPs in consultations;(b) HCPs to GPs;(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. Service user consent and relevance of data to sharing context were key determinants of data-sharing comfort. Conclusion Understanding the context of data-sharing in HIV care is increasingly important given the shift to remote consultations and expectations for self-management. 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.
ABSTRACT
The impacts of COVID-19 are not evenly distributed in society. Understanding demographic and occupational differences in personal experiences and information seeking and how these shape perceptions of COVID-19 related risk may help to improve the effectiveness of public health strategies in the future. We surveyed a nationally representative sample of 496 participants during the first UK lockdown, in May 2020. We recorded data to assess people’s experiences of the pandemic, examining how they varied with demographic factors such as age, gender, occupational status, and key worker status. We also recorded data on COVID-19 related information seeking, and how experiences and information seeking behaviours were related to perceptions of COVID-19 related risk. We found that key workers reported greater exposure to COVID-19 and more extensive experience of the virus within their social circles. Those key workers who perceived their personal protective equipment to be more effective felt that the virus was less of a threat to their lives. Trust in COVID-19 information was highest in information from the UK Government and NHS, and lowest in information from social media. We also found that men reported lower levels of perceived threat to life from the virus than women–a difference that mirrors the gender difference in occupational risk within our sample. Among those in employment, lower occupational class was also associated with higher levels of perceived risk of infection and perceived threat to life. Key workers who feel that they are insufficiently protected by their PPE experience increased levels of perceived threat, which may lead to negative health behaviours. This highlights the need for employers to ensure that key workers feel they are adequately protected from COVID-19. Our findings highlight some of the inequalities in the distribution of risk across society and discuss demographic differences in perceptions of risk. © 2021 Informa UK Limited, trading as Taylor & Francis Group.