Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis
Abstract Healthcare delivery is under strain, and the reusing of routinely collected data promises improved outcomes. Still, concerns remain about the public’s willingness to share their health data. This study examines worldwide willingness to share health data for secondary purposes. Five electron...
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| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Nature Portfolio
2025-08-01
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| Series: | npj Digital Medicine |
| Online Access: | https://doi.org/10.1038/s41746-025-01868-9 |
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| _version_ | 1849225924769218560 |
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| author | Quita Olsen Amalie Dyda Leanna Woods Elton Lobo Rebekah Eden Michelle A. Krahe Bernadette Richards Nalini Pather Lesley McGee Clair Sullivan Jason D. Pole |
| author_facet | Quita Olsen Amalie Dyda Leanna Woods Elton Lobo Rebekah Eden Michelle A. Krahe Bernadette Richards Nalini Pather Lesley McGee Clair Sullivan Jason D. Pole |
| author_sort | Quita Olsen |
| collection | DOAJ |
| description | Abstract Healthcare delivery is under strain, and the reusing of routinely collected data promises improved outcomes. Still, concerns remain about the public’s willingness to share their health data. This study examines worldwide willingness to share health data for secondary purposes. Five electronic databases were searched for eligible studies published since January 2020. Articles were included if they quantitatively examined the primary outcome; the public’s willingness to share health data for secondary use, while secondary outcomes included demographic and perception measures associated with willingness to share. Sixty-five articles reported a wide range (24–100%) of public willingness to share resulting in a pooled estimate of 77% (95% CI: 71–82%) among predominantly high-income countries. Participants remain concerned about privacy, consent, and transparency. Future work should consider public education, assessing diverse populations and developing and deploying a validated tool measuring willingness to share data. |
| format | Article |
| id | doaj-art-8b7ed9242bea477ca2d24a2b0a112df2 |
| institution | Kabale University |
| issn | 2398-6352 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | Nature Portfolio |
| record_format | Article |
| series | npj Digital Medicine |
| spelling | doaj-art-8b7ed9242bea477ca2d24a2b0a112df22025-08-24T11:52:05ZengNature Portfolionpj Digital Medicine2398-63522025-08-018111310.1038/s41746-025-01868-9Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysisQuita Olsen0Amalie Dyda1Leanna Woods2Elton Lobo3Rebekah Eden4Michelle A. Krahe5Bernadette Richards6Nalini Pather7Lesley McGeeClair Sullivan8Jason D. Pole9Queensland Digital Health Centre, Centre for Health Services Research, The University of QueenslandSchool of Public Health, The University of QueenslandQueensland Digital Health Centre, Centre for Health Services Research, The University of QueenslandQueensland Digital Health Centre, Centre for Health Services Research, The University of QueenslandSchool of Business, The University of QueenslandCollege of Medicine and Dentistry, James Cook UniversityAcademy for Medical Education, Medical School, The University of QueenslandAcademy for Medical Education, Medical School, The University of QueenslandQueensland Digital Health Centre, Centre for Health Services Research, The University of QueenslandQueensland Digital Health Centre, Centre for Health Services Research, The University of QueenslandAbstract Healthcare delivery is under strain, and the reusing of routinely collected data promises improved outcomes. Still, concerns remain about the public’s willingness to share their health data. This study examines worldwide willingness to share health data for secondary purposes. Five electronic databases were searched for eligible studies published since January 2020. Articles were included if they quantitatively examined the primary outcome; the public’s willingness to share health data for secondary use, while secondary outcomes included demographic and perception measures associated with willingness to share. Sixty-five articles reported a wide range (24–100%) of public willingness to share resulting in a pooled estimate of 77% (95% CI: 71–82%) among predominantly high-income countries. Participants remain concerned about privacy, consent, and transparency. Future work should consider public education, assessing diverse populations and developing and deploying a validated tool measuring willingness to share data.https://doi.org/10.1038/s41746-025-01868-9 |
| spellingShingle | Quita Olsen Amalie Dyda Leanna Woods Elton Lobo Rebekah Eden Michelle A. Krahe Bernadette Richards Nalini Pather Lesley McGee Clair Sullivan Jason D. Pole Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis npj Digital Medicine |
| title | Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis |
| title_full | Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis |
| title_fullStr | Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis |
| title_full_unstemmed | Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis |
| title_short | Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis |
| title_sort | worldwide willingness to share health data high but privacy consent and transparency paramount a meta analysis |
| url | https://doi.org/10.1038/s41746-025-01868-9 |
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