Sharing individual-level health research data: Experiences, challenges and a research agenda.
Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit (MORU) has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing inf...
| Main Authors: | , , , |
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| Format: | Journal article |
| Language: | English |
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Springer
2017
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| _version_ | 1797050733705560064 |
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| author | Cheah, P Day, N Parker, M Bull, S |
| author_facet | Cheah, P Day, N Parker, M Bull, S |
| author_sort | Cheah, P |
| collection | OXFORD |
| description | Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit (MORU) has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers. |
| first_indexed | 2024-03-06T18:09:34Z |
| format | Journal article |
| id | oxford-uuid:028bb40a-a26a-454e-9966-4275d74fcbed |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-06T18:09:34Z |
| publishDate | 2017 |
| publisher | Springer |
| record_format | dspace |
| spelling | oxford-uuid:028bb40a-a26a-454e-9966-4275d74fcbed2022-03-26T08:41:20ZSharing individual-level health research data: Experiences, challenges and a research agenda.Journal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:028bb40a-a26a-454e-9966-4275d74fcbedEnglishSymplectic Elements at OxfordSpringer2017Cheah, PDay, NParker, MBull, SSince January 2016, the Mahidol Oxford Tropical Medicine Research Unit (MORU) has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers. |
| spellingShingle | Cheah, P Day, N Parker, M Bull, S Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title | Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title_full | Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title_fullStr | Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title_full_unstemmed | Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title_short | Sharing individual-level health research data: Experiences, challenges and a research agenda. |
| title_sort | sharing individual level health research data experiences challenges and a research agenda |
| work_keys_str_mv | AT cheahp sharingindividuallevelhealthresearchdataexperienceschallengesandaresearchagenda AT dayn sharingindividuallevelhealthresearchdataexperienceschallengesandaresearchagenda AT parkerm sharingindividuallevelhealthresearchdataexperienceschallengesandaresearchagenda AT bulls sharingindividuallevelhealthresearchdataexperienceschallengesandaresearchagenda |