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.

Gallier, Suzy, Price, Gary, Pandya, Hina, McCarmack, Gillian, James, Chris, Ruane, Bob, Forty, Laura, Crosby, Benjamin L, Atkin, Catherine, Evans, Ralph, Dunn, Kevin W, Marston, Eliot, Crawford, Clark, Levermore, Martin, Modhwadia, Shekha, Attwood, John, Perks, Stephen, Doal, Rima, Gkoutos, Georgios, Dormer, Richard, Rosser, Andy, Fanning, Hilary and Sapey, Elizabeth (2021) 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. BMJ health & care informatics, 28 (1). ISSN 2632-1009.

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Official URL: https://informatics.bmj.com/content/28/1/e100294

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.

Item Type: Article
Subjects: WB Practice of medicine
Divisions: Emergency Services > Acute Medicine and AMU
Related URLs:
Depositing User: Mrs Caroline Tranter
Date Deposited: 23 Apr 2021 10:41
Last Modified: 23 Apr 2021 10:41
URI: http://www.repository.uhblibrary.co.uk/id/eprint/4237

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