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

Suzy Gallier, Gary Price, Hina Pandya, Gillian McCarmack, Chris James, Bob Ruane, Laura Forty, Benjamin L Crosby, Catherine Atkin, Ralph Evans, Kevin W Dunn, Eliot Marston, Clark Crawford, Martin Levermore, Shekha Modhwadia, John Attwood, Stephen Perks, Rima Doal, Georgios Gkoutos, Richard DormerAndy Rosser, Hilary Fanning, Elizabeth Sapey

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Abstract

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.

Original languageEnglish
Article numbere100294
Number of pages9
JournalBMJ health & care informatics
Volume28
Issue number1
DOIs
Publication statusPublished - 13 Apr 2021

Bibliographical note

Funding Information:
Funding PIONEER, the Health Data Research Hub in acute care, is funded by Health Data Research UK (HDR-UK). HDR-UK is an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities.

Funding Information:
Competing interests SG, GP, HP, GMC, CJ, BR, LF, BLC, CA, KWD, EM, CC, ML, SM, SP, JA, RDoal, RDormer, AR and HF have no conflicts of interest. GG reports funding from HDR-UK. ES reports funding from the Wellcome Trust, MRC, HDR-UK, Alpha 1 Foundation (A1F), British Lung Foundation and NIHR.

Publisher Copyright:
© 2021 Author(s).

Keywords

  • health care
  • information management
  • information systems
  • medical informatics
  • record systems

ASJC Scopus subject areas

  • Computer Science Applications
  • Health Informatics
  • Health Information Management

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