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 Inform
; 28(1)2021 Apr.
Article
em En
| MEDLINE
| ID: mdl-33849921
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.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Medicina Estatal
/
Bases de Dados Factuais
/
Cuidados Críticos
Tipo de estudo:
Prognostic_studies
Limite:
Humans
País/Região como assunto:
Europa
Idioma:
En
Revista:
BMJ Health Care Inform
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Reino Unido