Infrastructure and operating processes of PIONEER, the HDR-UK Data Hub in Acute Care and the workings of the Data Trust Committee: a protocol paper
| Autor: | John Attwood, Benjamin L Crosby, Hina Pandya, Bob Ruane, Rima Doal, Clark Crawford, Georgios V. Gkoutos, Eliot Marston, Suzy Gallier, Stephen Perks, Andrew Rosser, Kevin W Dunn, Shekha Modhwadia, Hilary Fanning, Martin Levermore, Laura Forty, Gillian McCarmack, Elizabeth Sapey, Gary Price, Ralph Evans, Catherine Atkin, Richard Dormer, Chris James |
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| Rok vydání: | 2021 |
| Předmět: |
Information management
medicine.medical_specialty Critical Care Databases Factual 020205 medical informatics Computer applications to medicine. Medical informatics education R858-859.7 0211 other engineering and technologies Health Informatics 02 engineering and technology information systems Health informatics State Medicine Health Information Management Acute care Health care Protocol 0202 electrical engineering electronic engineering information engineering Emergency medical services medicine medical informatics Humans Confidentiality Data hub health care economics and organizations 021110 strategic defence & security studies business.industry information management Public relations health care humanities United Kingdom Computer Science Applications Data access Research Design record systems business |
| Zdroj: | BMJ Health & Care Informatics BMJ Health & Care Informatics, Vol 28, Iss 1 (2021) |
| ISSN: | 2632-1009 |
| DOI: | 10.1136/bmjhci-2020-100294 |
| Popis: | IntroductionHealth Data Research UK designated seven UK-based Hubs to facilitate health data use for research. PIONEER is the Hub in Acute Care. PIONEER delivered workshops where patients/public citizens agreed key principles to guide access to unconsented, anonymised, routinely collected health data. These were used to inform the protocol.MethodsThis paper describes the PIONEER infrastructure and data access processes. PIONEER is a research database and analytical environment that links routinely collected health data across community, ambulance and hospital healthcare providers. PIONEER aims ultimately to improve patient health and care, by making health data discoverable and accessible for research by National Health Service, academic and commercial organisations. The PIONEER protocol incorporates principles identified in the public/patient workshops. This includes all data access requests being reviewed by the Data Trust Committee, a group of public citizens who advise on whether requests should be supported prior to licensed access.Ethics and disseminationEast Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk |
| Databáze: | OpenAIRE |
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