“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
Abstract 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 th...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2022-12-01
|
| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-022-00875-9 |
| _version_ | 1811198503743913984 |
|---|---|
| author | Edward S. Dove Ruby Reed-Berendt Manish Pareek UK-REACH Study Collaborative Group |
| author_facet | Edward S. Dove Ruby Reed-Berendt Manish Pareek UK-REACH Study Collaborative Group |
| author_sort | Edward S. Dove |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-04-12T01:31:36Z |
| format | Article |
| id | doaj.art-35fe8063f2d24327b9534e5bfbd2ce53 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-04-12T01:31:36Z |
| publishDate | 2022-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-35fe8063f2d24327b9534e5bfbd2ce532022-12-22T03:53:27ZengBMCBMC Medical Ethics1472-69392022-12-0123111410.1186/s12910-022-00875-9“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 studyEdward S. Dove0Ruby Reed-Berendt1Manish Pareek2UK-REACH Study Collaborative GroupEdinburgh Law School, University of EdinburghEdinburgh Law School, University of EdinburghDepartment of Respiratory Sciences, University of LeicesterAbstract 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.https://doi.org/10.1186/s12910-022-00875-9Big DataCOVID-19EthicsEthnic minoritiesHealthcare workersPublic health |
| spellingShingle | Edward S. Dove Ruby Reed-Berendt Manish Pareek UK-REACH Study Collaborative Group “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 BMC Medical Ethics Big Data COVID-19 Ethics Ethnic minorities Healthcare workers Public health |
| title | “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 |
| title_full | “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 |
| title_fullStr | “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 |
| title_full_unstemmed | “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 |
| title_short | “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 |
| title_sort | 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 |
| topic | Big Data COVID-19 Ethics Ethnic minorities Healthcare workers Public health |
| url | https://doi.org/10.1186/s12910-022-00875-9 |
| work_keys_str_mv | AT edwardsdove datamakesthestorycometolifeunderstandingtheethicalandlegalimplicationsofbigdataresearchinvolvingethnicminorityhealthcareworkersintheunitedkingdomaqualitativestudy AT rubyreedberendt datamakesthestorycometolifeunderstandingtheethicalandlegalimplicationsofbigdataresearchinvolvingethnicminorityhealthcareworkersintheunitedkingdomaqualitativestudy AT manishpareek datamakesthestorycometolifeunderstandingtheethicalandlegalimplicationsofbigdataresearchinvolvingethnicminorityhealthcareworkersintheunitedkingdomaqualitativestudy AT ukreachstudycollaborativegroup datamakesthestorycometolifeunderstandingtheethicalandlegalimplicationsofbigdataresearchinvolvingethnicminorityhealthcareworkersintheunitedkingdomaqualitativestudy |