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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
- Source :
- BMJ Health & Care Informatics, BMJ Health & Care Informatics, Vol 28, Iss 1 (2021)
- Publication Year :
- 2021
- Publisher :
- BMJ, 2021.
-
Abstract
- 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
- Subjects :
- 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
Subjects
Details
- ISSN :
- 26321009
- Volume :
- 28
- Database :
- OpenAIRE
- Journal :
- BMJ Health & Care Informatics
- Accession number :
- edsair.doi.dedup.....a51bf2a326dfd37054c7141399d045e0