Sharing health data for immigration control affects marginalised communities

Waterman, Lauren Z; Pillay, Mishka; Katona, Cornelius

doi:10.1136/bmj.n1042

Cited by 3 publications

(2 citation statements)

References 2 publications

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“…They took issue with the current policy landscape, accusing the UK government of purposefully subjecting refugees and asylum seekers to increasingly stringent policies of deterrence. These policies, DOTW workers explained, form a key part of the hostile environment policy against illegal migration (Grierson, 2018;Griffiths & Yeo, 2021;Kirkaldy, 2019;Kronick et al, 2021;Mulvey, 2010;Rawlinson & Gentleman, 2019;Walsh, 2019;. Similar arguments have been made by organisations such as DocsNotCops, MedAct and Migrants Organise as part of their "PatientsNotPassports" initiative demanding that healthcare should not be policed (see for instance https://www.pa tientsnotpassports.co.uk/learn/key-arguments.html and https://www.…”

Section: Discussionmentioning

confidence: 99%

“…UK, 2019). This is a hangover from the now out-dated 2017 policy when the Home Office released its 'access to NHS patient records policy' that permitted the viewing of patient home addresses and GP details (Papageorgiou et al, 2020;Waterman et al, 2021). This data-sharing agreement was designed to track down 'illegal' immigrants residing in the UK and has been described as creating an 'atmosphere of fear' where most undocumented migrants were too scared to register with a GP or access emergency treatment for fear of being found and detained by the Home Office (Bartlett, 2018;DOTW, 2017).…”

Section: The Nexus Between Migration and Healthmentioning

confidence: 99%

See 1 more Smart Citation

Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK

Asif

Kienzler

2022

SSM - Mental Health

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Section: Discussionmentioning

confidence: 99%

Section: The Nexus Between Migration and Healthmentioning

confidence: 99%

Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK

Asif

Kienzler

2022

SSM - Mental Health

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Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study

Yusuf,

Dixon,

Sharp

et al. 2024

J Med Internet Res

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Background Although many people are supportive of their deidentified health care data being used for research, concerns about privacy, safety, and security of health care data remain. There is low awareness about how data are used for research and related governance. Transparency about how health data are used for research is crucial for building public trust. One proposed solution is to ensure that affected communities are notified, particularly marginalized communities where there has previously been a lack of engagement and mistrust. Objective This study aims to explore patient and public perspectives on the use of deidentified data from electronic health records for musculoskeletal research and to explore ways to build and sustain public trust in health data sharing for a research program (known as “the Data Jigsaw”) piloting new ways of using and analyzing electronic health data. Views and perspectives about how best to engage with local communities informed the development of a public notification campaign about the research. Methods Qualitative methods data were generated from 20 semistructured interviews and 8 focus groups, comprising 48 participants in total with musculoskeletal conditions or symptoms, including 3 carers. A presentation about the use of health data for research and examples from the specific research projects within the program were used to trigger discussion. We worked in partnership with a patient and public involvement group throughout the research and cofacilitated wider community engagement. Results Respondents were supportive of their health care data being shared for research purposes, but there was low awareness about how electronic health records are used for research. Security and governance concerns about data sharing were noted, including collaborations with external companies and accessing social care records. Project examples from the Data Jigsaw program were viewed positively after respondents knew more about how their data were being used to improve patient care. A range of different methods to build and sustain trust were deemed necessary by participants. Information was requested about: data management; individuals with access to the data (including any collaboration with external companies); the National Health Service’s national data opt-out; and research outcomes. It was considered important to enable in-person dialogue with affected communities in addition to other forms of information. Conclusions The findings have emphasized the need for transparency and awareness about health data sharing for research, and the value of tailoring this to reflect current and local research where residents might feel more invested in the focus of research and the use of local records. Thus, the provision for targeted information within affected communities with accessible messages and community-based dialogue could help to build and sustain public trust. These findings can also be extrapolated to other conditions beyond musculoskeletal conditions, making the findings relevant to a much wider community.

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Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study (Preprint)

Yusuf,

Dixon,

Sharp

et al. 2023

Preprint

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BACKGROUND Although many people are supportive of their deidentified health care data being used for research, concerns about privacy, safety, and security of health care data remain. There is low awareness about how data are used for research and related governance. Transparency about how health data are used for research is crucial for building public trust. One proposed solution is to ensure that affected communities are notified, particularly marginalized communities where there has previously been a lack of engagement and mistrust. OBJECTIVE This study aims to explore patient and public perspectives on the use of deidentified data from electronic health records for musculoskeletal research and to explore ways to build and sustain public trust in health data sharing for a research program (known as “the Data Jigsaw”) piloting new ways of using and analyzing electronic health data. Views and perspectives about how best to engage with local communities informed the development of a public notification campaign about the research. METHODS Qualitative methods data were generated from 20 semistructured interviews and 8 focus groups, comprising 48 participants in total with musculoskeletal conditions or symptoms, including 3 carers. A presentation about the use of health data for research and examples from the specific research projects within the program were used to trigger discussion. We worked in partnership with a patient and public involvement group throughout the research and cofacilitated wider community engagement. RESULTS Respondents were supportive of their health care data being shared for research purposes, but there was low awareness about how electronic health records are used for research. Security and governance concerns about data sharing were noted, including collaborations with external companies and accessing social care records. Project examples from the Data Jigsaw program were viewed positively after respondents knew more about how their data were being used to improve patient care. A range of different methods to build and sustain trust were deemed necessary by participants. Information was requested about: data management; individuals with access to the data (including any collaboration with external companies); the National Health Service’s national data opt-out; and research outcomes. It was considered important to enable in-person dialogue with affected communities in addition to other forms of information. CONCLUSIONS The findings have emphasized the need for transparency and awareness about health data sharing for research, and the value of tailoring this to reflect current and local research where residents might feel more invested in the focus of research and the use of local records. Thus, the provision for targeted information within affected communities with accessible messages and community-based dialogue could help to build and sustain public trust. These findings can also be extrapolated to other conditions beyond musculoskeletal conditions, making the findings relevant to a much wider community.

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Sharing health data for immigration control affects marginalised communities

Cited by 3 publications

References 2 publications

Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK

Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK

Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study

Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study (Preprint)

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