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 Dormer; Andy Rosser; Hilary Fanning; Elizabeth Sapey

doi:10.1136/bmjhci-2020-100294

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 language	English
Article number	e100294
Number of pages	9
Journal	BMJ health & care informatics
Volume	28
Issue number	1
DOIs	https://doi.org/10.1136/bmjhci-2020-100294
Publication status	Published - 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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10.1136/bmjhci-2020-100294Licence: Creative Commons: Attribution (CC BY)

GallierS2021InfrastructureFinal published version, 936 KBLicence: Creative Commons: Attribution (CC BY)

Does hospitalisation of older patients with severe community acquired pneumonia and sepsis lead to long term
Sapey, E. (Co-Investigator), Thickett, D. (Principal Investigator), Richter, A. (Co-Investigator), Patel, J. (Co-Investigator), Mitchell, T. (Co-Investigator) & Scott, A. (Co-Investigator)
Medical Research Council
1/07/19 → 30/06/23
Project: Research Councils

Cite this

Gallier, S., Price, G., Pandya, H., McCarmack, G., James, C., Ruane, B., Forty, L., Crosby, B. L., Atkin, C., Evans, R., Dunn, K. W., Marston, E., Crawford, C., Levermore, M., Modhwadia, S., Attwood, J., Perks, S., Doal, R., Gkoutos, G., ... Sapey, E. (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), Article e100294. https://doi.org/10.1136/bmjhci-2020-100294

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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.",

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

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: {\textcopyright} 2021 Author(s).",

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Gallier, S, Price, G, Pandya, H, McCarmack, G, James, C, Ruane, B, Forty, L, Crosby, BL, Atkin, C, Evans, R, Dunn, KW, Marston, E, Crawford, C, Levermore, M, Modhwadia, S, Attwood, J, Perks, S, Doal, R, Gkoutos, G, Dormer, R, Rosser, A, Fanning, H & Sapey, E 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, vol. 28, no. 1, e100294. https://doi.org/10.1136/bmjhci-2020-100294

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T2 - a protocol paper

AU - Gallier, Suzy

AU - Price, Gary

AU - Pandya, Hina

AU - McCarmack, Gillian

AU - James, Chris

AU - Ruane, Bob

AU - Forty, Laura

AU - Crosby, Benjamin L

AU - Atkin, Catherine

AU - Evans, Ralph

AU - Dunn, Kevin W

AU - Marston, Eliot

AU - Crawford, Clark

AU - Levermore, Martin

AU - Modhwadia, Shekha

AU - Attwood, John

AU - Perks, Stephen

AU - Doal, Rima

AU - Gkoutos, Georgios

AU - Dormer, Richard

AU - Rosser, Andy

AU - Fanning, Hilary

AU - Sapey, Elizabeth

N1 - 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).

PY - 2021/4/13

Y1 - 2021/4/13

N2 - 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.

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.

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KW - information management

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KW - record systems

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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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

Access to Document

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Projects

Does hospitalisation of older patients with severe community acquired pneumonia and sepsis lead to long term

Cite this