CUREd Research Database: How to access data or collaborate

Background

There is increased demand on emergency departments (ED) across the UK. The services are becoming stretched and as a result, waiting times are increasing and patient care is suffering. By linking together patient data from different hospitals and services across Yorkshire, researchers are able to build a more complete picture of how emergency and urgent care (UEC) services in the region function.

This picture will help researchers understand the flow of patients through EUC services, understand what the most common health issues are and better plan community services in the future. The anonymous data can help scientists understand EUC services across an entire region and suggest improvements in a much more synchronised way.

Aims

The CUREd Research Database collates routine NHS data from a number of UEC service providers in Yorkshire and the Humber region from 2011-2017 including the Yorkshire Ambulance Service (YAS), NHS111 and acute NHS trusts, in addition to other health service providers.

Individual patient records have been linked to form this large unique research database, containing over 15 million patient episodes. This rich data source allows the EUC services to be viewed as a whole system, enabling demand on the system by patients to be analysed as well as the flow of patients through the system. 

Progress

The patient identifiable data has been obtained from the UEC service providers, checked and cleaned. Data linkage has been completed and validated.  The project team are also working with a number of stakeholders to develop further research questions that may be answered using the CUREd Research Database. These include

• University of York
• Sheffield Teaching Hospitals NHS Trust
• Bradford Institute for Health Research

External researchers can request data extracts from the CUREd Research Database to be used in research studies focusing on urgent and emergency care within the UK. Researchers will need to go through an application process to obtain data and if successful, will only be supplied with data that does not contain patient identifiers. Strict processes are in place to ensure all project data released is governed correctly and will be used for research purposes only.

Information about the CUREd Research Database including data processing, data governance and how to apply for data extracts is found under How to access CUREd data.

Funding

The CUREd Research Database is managed by The University of Sheffield. It was developed with funding from Connected Yorkshire – part of the Connected Health Cities (CHC) programme which ended in December 2019. The NIHR Applied Research Collaboration in Yorkshire and Humber is providing on-going support to the CUREd Research Database.

Ethical review and legal permissions

The “Connected Health Cities: Data linkage of urgent care data” study (known as the “CUREd research database”) has approval from the NHS Research and Ethics Committee (REC), overseen by the NHS Health Research Authority’s Research Ethics Service, and from the NHS Health Research Authority (HRA), directly, to receive health and social care data without patient consent for patients of emergency and urgent care services in Yorkshire and Humber.

The Leeds East REC granted approval (18/YH/0234) and, subsequent to receiving a recommendation to approve from the Confidentiality Advisory Group (18/CAG/0126, previously 17/CAG/0024), the NHS HRA provided approval for English health and care providers to supply identifiable patient data to the study.

The study complies with the common law of duty of confidentiality owed by health professionals in regard to information provided by patients in the course of clinical care; the General Data Protection Regulation as enacted in the UK by the Data Protection Act 2018; and, where applicable, the Statistics and Registration Service Act 2007.

The NHS HRA’s approval additionally provides the study with the authority to afford other researchers access to anonymised data subject to approval by the study’s Data Release Committee.

A release register of all data extracts provided to external researchers is available here.

How to access CUREd data 

The CUREd Research Database is a large and unique linked research database meaning we receive many requests to use CUREd data.

Before you contact us, please make sure you have read our Guidance for Collaborators and you have obtained the appropriate ethical approval for the use of secondary data. 

The CUREd Data Release Committee (DRC) review proposals on a quarterly basis and will endeavour to respond to your request as soon as possible. You can find out about the different datasets which are available in the Data Dictionaries (link below). If you are unsure if we have the data that you need please contact cured@sheffield.ac.uk

Once you have formulated your request please complete the ‘Data Access Request’ (DAR) form. If you experience difficulties completing the online form, please contact The UOS team and a paper version (Word format) can be sent.

If your request is approved we will ask you to sign a data sharing agreement prior to the transfer of any CUREd data.

Please note, we make charges to cover the costs of managing your application, processing data and providing access. Students may be exempt, please contact The UOS team to discuss.

Further information and related documentation on how to access the CUREd data are available below.

CUREd Data Release Committee

The CUREd Data Release Committee (DRC) is the group which reviews all requests for data extracts from the CUREd Research Database.

Controls and procedures are essential to ensure the highest standards are maintained in relation to transparency, accountability, quality and consistency in the management of the CUREd Research Database and its data extracts. The purpose of the CUREd DRC is to provide stewardship to help maintain these standards, as well as providing a voice for stakeholders and the public.

The CUREd DRC also makes general recommendations or observations about project processes, policies, procedures, and documentation.

More information about the CUREd DRC and the review process is provided below.

CUREd DRC membership

The CUREd DRC is made up of a panel of specialists and lay members. 

Find out more about our members

Meeting minutes

The minutes from each CHC DRC meeting are published within a week of the following CUREd DRC meeting. If you have any questions, please contact The UOS Team.

2022

30^th June

2021

16^th September

2020

27th February 

21st July

24^th November

2019

24th April

11th July

Contacts

Chief investigator: Professor Suzanne Mason
Study manager/ Researcher: Maxine Kuczawski
Data manager: Tony Stone

Contact email: cured@sheffield.ac.uk

Team

Research and academic staff

• Professor Suzanne Mason, Professor of Emergency Medicine and Chief Investigator
• Maxine Kuczawski, Study Manager and Researcher
• Dr Rosemarie Gough, Researcher

Clinical (primary and secondary care)

• Dr Brad Wilson, Emergency Medicine Consultant, Bradford Teaching Hospitals
• Dr Susan Croft, Emergency Medicine Consultant, Sheffield Teaching Hospitals

Technical staff

• Tony Stone, Systems Architect and Data Manager
• Annabel Crum, Data Specialist

Statistical staff

• Dr Richard Jacques, Lecturer in Medical Statistics
• Dr Rebecca Simpson, Lecturer in Medical Statistics
• Dr Jen Lewis, Medical Statistician

Externally, The UOS team also works closely with other partners and organisations in the Yorkshire and Humber region, including

• Bradford Institute for Health Research
• Bradford Teaching Hospitals NHS Foundation Trust
• Leeds Teaching Hospitals NHS Foundation Trust
• Sheffield Emergency Care Forum (PPI group)
• Sheffield Teaching Hospitals NHS Foundation Trust
• University of Leeds
• University of York
• Yorkshire Ambulance Service

Further information

Further information and documentation about the CUREd Research Database can be found below. Alternatively, please contact The UOS team via cured@sheffield.ac.uk

Information about the NIHR ARC Yorkshire and Humber, which is providing support and funding for the research database can be found here.

Information on unlocking data - an introduction to care metadata can be found here.

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