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

IntroductionHealth 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.MethodsThis 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 disseminationEast Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk

Impact of ethnicity on the accuracy of measurements of oxygen saturations: A retrospective observational cohort study

“…This data study was supported by PIONEER, 21 a Health Data Research Hub in Acute Care, with ethical approval provided by the East Midlands – Derby REC (reference: 20/EM/0158) and the requirement of informed consent waived. The findings are reported as per the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines.…”

Variability and performance of NHS England’s ‘reason to reside’ criteria in predicting hospital discharge in acute hospitals in England: a retrospective, observational cohort study

“…The research question and topic were agreed following patient/public discussion groups about NHSE discharge policies. Patients/public reviewed the data fields included in the study, with the PIONEER Data Trust Committee providing support for the project (a group of patient/public members who review studies using health data 9 ). A patient/public group has reviewed the results and has written a lay summary for study dissemination to patient groups.…”

Building trust in real-world data: lessons from INSIGHT, the UK's health data research hub for eye health and oculomics

“…The profile of NHS users is therefore highly representative of the whole, diverse UK population. Second, alongside other similar initiatives in the UK [22 ▪ ], it is based on routinely collected healthcare data and is approved to be undertaken on an ‘opt out’ basis. Numerous studies have shown that the majority of the UK population supports the use of their health data for research [23,24 ▪▪ ], with fewer than 6% of the UK population having opted out after considerable media coverage of the issue and public awareness [25].…”