The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing
The COVID-19 pandemic response in the UK, as in other countries, drew heavily on health and social care data, making its utility extremely visible as necessary for timely government decision-making and planning. The urgency created by the crisis, however, meant that additional data collection and sh...
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2024-12-01
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| Series: | Big Data & Society |
| Online Access: | https://doi.org/10.1177/20539517241299729 |
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| _version_ | 1846116807153287168 |
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| author | Louise Laverty Elisa Jones Niels Peek Malcolm Oswald Kyle Bozentko Sarah Atwood Sabine van der Veer |
| author_facet | Louise Laverty Elisa Jones Niels Peek Malcolm Oswald Kyle Bozentko Sarah Atwood Sabine van der Veer |
| author_sort | Louise Laverty |
| collection | DOAJ |
| description | The COVID-19 pandemic response in the UK, as in other countries, drew heavily on health and social care data, making its utility extremely visible as necessary for timely government decision-making and planning. The urgency created by the crisis, however, meant that additional data collection and sharing under emergency legislation was implemented with minimal public consultation. To understand the public perception of these new data measures and initiatives, three citizens’ juries took place in the spring of 2021. This article reports on qualitative observations of the small group deliberations from these juries. The analysis shows that jurors frequently drew on normative discourses of transparency and trust in discussions, and the different roles they were assumed to fulfil. Transparency was expected to offer greater visibility into the organisations involved in health and social care data sharing, but this was made difficult by the increased complexity of the health data economy. Transparency into the political justifications for additional health data collection was important for jurors. The utilitarian narratives used by the government were considered problematic, restricting opportunities for individuals to express concerns and leading to cynicism. The findings will be situated with the critical literature on visibility practices to highlight the need to unpick what the promise of transparency and trust offers to the public and how it links to power and control. Lastly, it will examine what the deliberations around transparency mean for wider policy on health and social care data-sharing. |
| format | Article |
| id | doaj-art-44e729a30a1f4ba1a72054777e75a7d3 |
| institution | Kabale University |
| issn | 2053-9517 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Big Data & Society |
| spelling | doaj-art-44e729a30a1f4ba1a72054777e75a7d32024-12-18T14:03:40ZengSAGE PublishingBig Data & Society2053-95172024-12-011110.1177/20539517241299729The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharingLouise Laverty0Elisa Jones1Niels Peek2Malcolm Oswald3Kyle Bozentko4Sarah Atwood5Sabine van der Veer6 National Institute for Health and Care Research Applied Research Collaboration Greater Manchester (ARC-GM), Manchester, UK Department of Primary Care and Mental Health, , Liverpool, UK The Healthcare Improvement Studies Institute, , Cambridge, UK Citizens’ Juries CIC, Manchester, UK Center for New Democratic Processes, Minnesota, Minnesota, USA Center for New Democratic Processes, Minnesota, Minnesota, USA National Institute for Health and Care Research Applied Research Collaboration Greater Manchester (ARC-GM), Manchester, UKThe COVID-19 pandemic response in the UK, as in other countries, drew heavily on health and social care data, making its utility extremely visible as necessary for timely government decision-making and planning. The urgency created by the crisis, however, meant that additional data collection and sharing under emergency legislation was implemented with minimal public consultation. To understand the public perception of these new data measures and initiatives, three citizens’ juries took place in the spring of 2021. This article reports on qualitative observations of the small group deliberations from these juries. The analysis shows that jurors frequently drew on normative discourses of transparency and trust in discussions, and the different roles they were assumed to fulfil. Transparency was expected to offer greater visibility into the organisations involved in health and social care data sharing, but this was made difficult by the increased complexity of the health data economy. Transparency into the political justifications for additional health data collection was important for jurors. The utilitarian narratives used by the government were considered problematic, restricting opportunities for individuals to express concerns and leading to cynicism. The findings will be situated with the critical literature on visibility practices to highlight the need to unpick what the promise of transparency and trust offers to the public and how it links to power and control. Lastly, it will examine what the deliberations around transparency mean for wider policy on health and social care data-sharing.https://doi.org/10.1177/20539517241299729 |
| spellingShingle | Louise Laverty Elisa Jones Niels Peek Malcolm Oswald Kyle Bozentko Sarah Atwood Sabine van der Veer The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing Big Data & Society |
| title | The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing |
| title_full | The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing |
| title_fullStr | The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing |
| title_full_unstemmed | The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing |
| title_short | The power and promise of transparency: Perspectives from citizens’ juries of pandemic health data sharing |
| title_sort | power and promise of transparency perspectives from citizens juries of pandemic health data sharing |
| url | https://doi.org/10.1177/20539517241299729 |
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