Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions Article Swipe
Ngozi Nwebonyi
,
Susana Silva
,
Cláudia de Freitas
·
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.3389/fpubh.2022.852971
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.3389/fpubh.2022.852971
Background Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Involving the public in health data governance can help to address this problem by imbuing data processing frameworks with societal values. This study assesses public views about involvement in individual-level decisions concerned with health data and their association with trust in science and other institutions. Methods Cross-sectional study with 162 patients and 489 informal carers followed at two reference centers for rare diseases in an academic hospital in Portugal (June 2019–March 2020). Participants rated the importance of involvement in decision-making concerning health data sharing, access, use, and reuse from “not important” to “very important”. Its association with sociodemographic characteristics, interpersonal trust, trust in national and international institutions, and the importance of trust in research teams and host institutions was tested. Results Most participants perceived involvement in decision-making about data sharing (85.1%), access (87.1%), use (85%) and reuse (79.9%) to be important or very important. Participants who ascribed a high degree of importance to trust in research host institutions were significantly more likely to value involvement in such decisions. A similar position was expressed by participants who valued trust in research teams for data sharing, access, and use. Participants with low levels of trust in national and international institutions and with lower levels of education attributed less importance to being involved in decisions about data use. Conclusion The high value attributed by participants to involvement in individual-level data governance stresses the need to broaden opportunities for public participation in health data decision-making, namely by introducing a meta consent approach. The important role played by trust in science and in other institutions in shaping participants' views about involvement highlights the relevance of pairing such a meta consent approach with the provision of transparent information about the implications of data sharing, the resources needed to make informed choices and the development of harm mitigation tools and redress.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.3389/fpubh.2022.852971
- https://www.frontiersin.org/articles/10.3389/fpubh.2022.852971/pdf
- OA Status
- gold
- Cited By
- 17
- References
- 66
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4229456416
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4229456416Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.3389/fpubh.2022.852971Digital Object Identifier
- Title
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Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other InstitutionsWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2022Year of publication
- Publication date
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2022-05-10Full publication date if available
- Authors
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Ngozi Nwebonyi, Susana Silva, Cláudia de FreitasList of authors in order
- Landing page
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https://doi.org/10.3389/fpubh.2022.852971Publisher landing page
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https://www.frontiersin.org/articles/10.3389/fpubh.2022.852971/pdfDirect link to full text PDF
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YesWhether a free full text is available
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goldOpen access status per OpenAlex
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https://www.frontiersin.org/articles/10.3389/fpubh.2022.852971/pdfDirect OA link when available
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Data sharing, Public relations, Business, Corporate governance, Public health, Internet privacy, Medicine, Political science, Nursing, Computer science, Pathology, Alternative medicine, FinanceTop concepts (fields/topics) attached by OpenAlex
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17Total citation count in OpenAlex
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2025: 4, 2024: 8, 2023: 4, 2022: 1Per-year citation counts (last 5 years)
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66Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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