In safe hands: child health data storage, linkage and consent for use
While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of childr...
| Main Authors: | , , , |
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| Format: | Journal article |
| Language: | English |
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Oxford University Press
2023
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| _version_ | 1797111807247122432 |
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| author | Wild, CEK Rawiri, NT Taiapa, K Anderson, YC |
| author_facet | Wild, CEK Rawiri, NT Taiapa, K Anderson, YC |
| author_sort | Wild, CEK |
| collection | OXFORD |
| description | While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Māori and non-Māori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Māori and non-Māori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust. |
| first_indexed | 2024-03-07T08:14:03Z |
| format | Journal article |
| id | oxford-uuid:6310de4b-4821-4490-beac-cc68de6d4c2c |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T08:14:03Z |
| publishDate | 2023 |
| publisher | Oxford University Press |
| record_format | dspace |
| spelling | oxford-uuid:6310de4b-4821-4490-beac-cc68de6d4c2c2023-12-18T12:10:53ZIn safe hands: child health data storage, linkage and consent for useJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:6310de4b-4821-4490-beac-cc68de6d4c2cEnglishSymplectic ElementsOxford University Press2023Wild, CEKRawiri, NTTaiapa, KAnderson, YCWhile there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Māori and non-Māori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Māori and non-Māori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust. |
| spellingShingle | Wild, CEK Rawiri, NT Taiapa, K Anderson, YC In safe hands: child health data storage, linkage and consent for use |
| title | In safe hands: child health data storage, linkage and consent for use |
| title_full | In safe hands: child health data storage, linkage and consent for use |
| title_fullStr | In safe hands: child health data storage, linkage and consent for use |
| title_full_unstemmed | In safe hands: child health data storage, linkage and consent for use |
| title_short | In safe hands: child health data storage, linkage and consent for use |
| title_sort | in safe hands child health data storage linkage and consent for use |
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