“Data makes the story come to life:” understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom—a qualitative study

UK-REACH Study Collaborative Group

    Research output: Contribution to journalArticlepeer-review


    The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research.

    Original languageEnglish
    Article number136
    JournalBMC Medical Ethics
    Issue number1
    Publication statusPublished - Dec 2022

    Bibliographical note

    Funding Information:
    This study is supported by a grant (MR/V027549/1) to the University of Leicester from the Medical Research Council (MRC)-UK Research and Innovation (UKRI), and National Institute for Health Research (NIHR) rapid response panel to tackle COVID-19, and by core funding provided by NIHR Leicester Biomedical Research Centre, a partnership between the University of Leicester and University Hospitals of Leicester NHS Trust. This work is carried out with the support of BREATHE—The Health Data Research Hub for Respiratory Health [MC_PC_19004] funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK. MP is funded by a NIHR Development and Skills Enhancement Award. For the purpose of open access, the authors have applied a Creative Commons Attribution (CC BY) licence to any Author Accepted Manuscript version arising from this submission.

    Funding Information:
    The authors thank the peer reviewers for their helpful comments, each of the interview participants for their generous time and effort in contributing to this qualitative research project, and Prof Graeme Laurie for his insightful comments on a previous draft of this article. Manish Pareek2*, Edward Dove1*, Laura Gray3, Laura B Nellums4, Anna L Guyatt3, Catherine Johns3, I Chris McManus5, Katherine Woolf5, Ibrahim Abubakar6, Amit Gupta7, Keith R Abrams8, Martin D Tobin3, Louise Wain3, Sue Carr9, Kamlesh Khunti10, David Ford11, Robert Free12Affiliations:1School of Law, University of Edinburgh, Edinburgh, UK;2Department of Respiratory Sciences, University of Leicester, UK; Department of Infection and HIV Medicine, University Hospitals of Leicester NHS Trust, UK;3Department of Health Sciences, University of Leicester, UK;4Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, UK;5University College London Medical School, UK;6Faculty of Population Health Sciences, University College London, UK;7Oxford University Hospitals NHS Foundation Trust, UK,8Centre for Health Economics, University of York, UK;9General Medical Council, UK;10Diabetes Research Centre, University of Leicester, UK;11Population Data Science, Swansea University Medical School, Swansea, UK;12Department of Respiratory Sciences, University of Leicester, Leicester, UK; NIHR Leicester Biomedical Research Centre, University of Leicester, Leicester, UK*Dove and Pareek have authorship status.

    Publisher Copyright:
    © 2022, The Author(s).


    • Big Data
    • COVID-19
    • Ethics
    • Ethnic minorities
    • Healthcare workers
    • Public health
    • United Kingdom


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