Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing

Mulrine, Stephanie, Blell, Mwenza and Murtagh, Madeleine (2021) Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing. Medicine Access @ Point of Care, 5. p. 239920262110484. ISSN 2399-2026

23992026211048421.pdf - Published Version
Available under License Creative Commons Attribution 4.0.

Download (188kB) | Preview
Official URL:


Background: The point of care in many health systems is increasingly a point of health data generation, data which may be shared and used in a variety of ways by a range of different actors. Aim: We set out to gather data about the perspectives on health data-sharing of people living in North East England who have been underrepresented within other public engagement activities and who are marginalized in society. Methods: Multi-site ethnographic fieldwork was carried out in the Teesside region of England over a 6-month period in 2019 as part of a large-scale health data innovation program called Connected Health Cities. Organizations working with marginalized groups were contacted to recruit staff, volunteers, and beneficiaries for participation in qualitative research. The data gathered were analyzed thematically and vignettes constructed to illustrate findings. Results: Previous encounters with health and social care professionals and the broader socio-political contexts of people’s lives shape the perspectives of people from marginalized groups about sharing of data from their health records. While many would welcome improved care, the risks to people with socially produced vulnerabilities must be appreciated by those advocating systems that share data for personalized medicine or other forms of data-driven care. Conclusion: Forms of innovation in medicine which rely on greater data-sharing may present risks to groups and individuals with existing vulnerabilities, and advocates of these innovations should address the lack of trustworthiness of those receiving data before asking that people trust new systems to provide health benefits.

Item Type: Article
Additional Information: Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by funding from the UK Department of Health (RES/0150/7943/202) and MB’s Rutherford Fellowship affiliated with Health Data Research—UK and her Newcastle University Academic Track Fellowship. It was also supported by EUCAN-Connect, A federated FAIR platform enabling largescale analysis of high-value cohort data connecting Europe and Canada in personalized health. EUCAN-Connect was funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement No 824989.
Uncontrolled Keywords: Data, data-sharing, underrepresented groups, qualitative methods
Subjects: B900 Others in Subjects allied to Medicine
L900 Others in Social studies
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: John Coen
Date Deposited: 04 Oct 2021 10:56
Last Modified: 04 Oct 2021 11:05

Actions (login required)

View Item View Item


Downloads per month over past year

View more statistics