RT Journal Article
SR Electronic
T1 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
JF BMJ Health & Care Informatics
JO BMJ Health Care Inform
FD BMJ Publishing Group Ltd
SP e100294
DO 10.1136/bmjhci-2020-100294
VO 28
IS 1
A1 Suzy Gallier
A1 Gary Price
A1 Hina Pandya
A1 Gillian McCarmack
A1 Chris James
A1 Bob Ruane
A1 Laura Forty
A1 Benjamin L Crosby
A1 Catherine Atkin
A1 Ralph Evans
A1 Kevin W Dunn
A1 Eliot Marston
A1 Clark Crawford
A1 Martin Levermore
A1 Shekha Modhwadia
A1 John Attwood
A1 Stephen Perks
A1 Rima Doal
A1 Georgios Gkoutos
A1 Richard Dormer
A1 Andy Rosser
A1 Hilary Fanning
A1 Elizabeth Sapey
YR 2021
UL http://informatics.bmj.com/content/28/1/e100294.abstract
AB Introduction Health 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.Methods This 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 dissemination East Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk