Multiple modes of data sharing can facilitate secondary use of sensitive health data for research
Evidence-based healthcare relies on health data from diverse sources to inform decision-making across different domains, including disease prevention, aetiology, diagnostics, therapeutics and prognosis. Increasing volumes of highly granular data provide opportunities to leverage the evidence base, w...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-10-01
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| Series: | BMJ Global Health |
| Online Access: | https://gh.bmj.com/content/8/10/e013092.full |
| _version_ | 1797628068970364928 |
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| author | Nicki Tiffin Themba Mutemaringa Tsaone Tamuhla Eddie T Lulamba |
| author_facet | Nicki Tiffin Themba Mutemaringa Tsaone Tamuhla Eddie T Lulamba |
| author_sort | Nicki Tiffin |
| collection | DOAJ |
| description | Evidence-based healthcare relies on health data from diverse sources to inform decision-making across different domains, including disease prevention, aetiology, diagnostics, therapeutics and prognosis. Increasing volumes of highly granular data provide opportunities to leverage the evidence base, with growing recognition that health data are highly sensitive and onward research use may create privacy issues for individuals providing data. Concerns are heightened for data without explicit informed consent for secondary research use. Additionally, researchers—especially from under-resourced environments and the global South—may wish to participate in onward analysis of resources they collected or retain oversight of onward use to ensure ethical constraints are respected. Different data-sharing approaches may be adopted according to data sensitivity and secondary use restrictions, moving beyond the traditional Open Access model of unidirectional data transfer from generator to secondary user. We describe collaborative data sharing, facilitating research by combining datasets and undertaking meta-analysis involving collaborating partners; federated data analysis, where partners undertake synchronous, harmonised analyses on their independent datasets and then combine their results in a coauthored report, and trusted research environments where data are analysed in a controlled environment and only aggregate results are exported. We review how deidentification and anonymisation methods, including data perturbation, can reduce risks specifically associated with health data secondary use. In addition, we present an innovative modularised approach for building data sharing agreements incorporating a more nuanced approach to data sharing to protect privacy, and provide a framework for building the agreements for each of these data-sharing scenarios. |
| first_indexed | 2024-03-11T10:33:19Z |
| format | Article |
| id | doaj.art-1d067fd0624f4f328c93060725db7dbb |
| institution | Directory Open Access Journal |
| issn | 2059-7908 |
| language | English |
| last_indexed | 2024-03-11T10:33:19Z |
| publishDate | 2023-10-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Global Health |
| spelling | doaj.art-1d067fd0624f4f328c93060725db7dbb2023-11-14T12:35:07ZengBMJ Publishing GroupBMJ Global Health2059-79082023-10-0181010.1136/bmjgh-2023-013092Multiple modes of data sharing can facilitate secondary use of sensitive health data for researchNicki Tiffin0Themba Mutemaringa1Tsaone Tamuhla2Eddie T Lulamba3South African National Bioinformatics Institute, University of the Western Cape, Bellville, South AfricaProvincial Health Data Centre, Health Intelligence Directorate, Western Cape Department of Health and Wellness, Cape Town, Western Cape, South AfricaSouth African National Bioinformatics Institute, University of the Western Cape, Bellville, South AfricaSouth African National Bioinformatics Institute, University of the Western Cape, Bellville, South AfricaEvidence-based healthcare relies on health data from diverse sources to inform decision-making across different domains, including disease prevention, aetiology, diagnostics, therapeutics and prognosis. Increasing volumes of highly granular data provide opportunities to leverage the evidence base, with growing recognition that health data are highly sensitive and onward research use may create privacy issues for individuals providing data. Concerns are heightened for data without explicit informed consent for secondary research use. Additionally, researchers—especially from under-resourced environments and the global South—may wish to participate in onward analysis of resources they collected or retain oversight of onward use to ensure ethical constraints are respected. Different data-sharing approaches may be adopted according to data sensitivity and secondary use restrictions, moving beyond the traditional Open Access model of unidirectional data transfer from generator to secondary user. We describe collaborative data sharing, facilitating research by combining datasets and undertaking meta-analysis involving collaborating partners; federated data analysis, where partners undertake synchronous, harmonised analyses on their independent datasets and then combine their results in a coauthored report, and trusted research environments where data are analysed in a controlled environment and only aggregate results are exported. We review how deidentification and anonymisation methods, including data perturbation, can reduce risks specifically associated with health data secondary use. In addition, we present an innovative modularised approach for building data sharing agreements incorporating a more nuanced approach to data sharing to protect privacy, and provide a framework for building the agreements for each of these data-sharing scenarios.https://gh.bmj.com/content/8/10/e013092.full |
| spellingShingle | Nicki Tiffin Themba Mutemaringa Tsaone Tamuhla Eddie T Lulamba Multiple modes of data sharing can facilitate secondary use of sensitive health data for research BMJ Global Health |
| title | Multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| title_full | Multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| title_fullStr | Multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| title_full_unstemmed | Multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| title_short | Multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| title_sort | multiple modes of data sharing can facilitate secondary use of sensitive health data for research |
| url | https://gh.bmj.com/content/8/10/e013092.full |
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