Empowerment or exclusion? Exploring perspectives on health data sharing through the lens of marginalisation and...

There has been growing emphasis on the need to enable and make use of electronic healthcare records for research and to improve health services. Alongside this, there has been raised awareness of digital (and broader) health inequalities in the UK context. This paper explores perspectives towards health data sharing amongst marginalised groups, addressing a research gap in which previous research has not been inclusive of such groups. There is a lack of theoretically informed research exploring perspectives of such communities, which negates underlying inequities and institutional disadvantage to be un-earthed analytically. We present findings from a co-produced qualitative research project with marginalised groups in the Greater Manchester (UK) region. We explore the perspectives of 58 individuals regarding different contexts for health data sharing, including data shared in relation to direct personal healthcare, and where shared for research purposes. We use a critical approach to explore how intersectional disadvantage shapes views towards data sharing. The findings indicate that participant perspectives reflect embedded structural and institutionalised power dynamics as part of existing inequalities in health and care. Perspectives were nuanced and complex in framing data sharing as potentially empowering or disempowering depending on the context and purpose of data sharing and in relation to intersectional disadvantage. The critical approach drawn on here makes visible a contextualised understanding of perspectives towards health data sharing which illustrate (via lived experience) that socially situated vulnerabilities risk compounding institutionalised inequalities and multiple forms of disadvantage.