CUREd Research Database: Participant Information
The CUREd Research Database contains routine NHS data from a number of urgent and emergency care (UEC) service providers in Yorkshire and the Humber region including the Yorkshire Ambulance Service (YAS), NHS111 and acute NHS trusts, in addition to other health service providers.
Individual patient records have been linked together enabling researchers to view the patient journey through the whole UEC system. The research database contains over 23 million episodes of patient care between 2011 and 2017. The depth and breadth of the information collected means researchers are able to analyse demand on the UEC system by patients as well as the flow of patients through the system.
The University Of Sheffield (UOS) team are responsible for ensuring the information obtained as part of this research database is kept and handled securely and confidentially. It is also our duty to make sure the research carried out is ethical; protecting the rights, safety, dignity and wellbeing of patients.
The research database has approval (IRAS no. 215818; REC Ref. 18/YH/0234; CAG ref. 18/CAG/0024) to collect patient data without individual patient consent, however if you would prefer for your information not to be included in the research database you have the right to withdraw without giving a reason up to the point of data linkage.
We take data security very seriously and adhere fully to The University Of Sheffield (UOS) and the School of Health and Related Research (ScHARR) data security policy and procedures. The UOS is the Data Controller, and is responsible for ensuring that all data are securely stored, handled and used in accordance with the Data Protection Act 2018 and the General Data Protection Regulation. ScHARR’s data policies and procedures for storing and handling data have been approved by the NHS Information Governance. The Project Lead of the CUREd Research Database remains the Data Custodian and, on a day to day basis, oversees the way in which the UOS team looks after patients’ data.
All patient identifiable information, such as names, addresses and dates of birth of patients’, is stored on a virtual machine that is isolated from all other computer systems and is protected by digital access control and other security systems, so that the risk of unauthorised access to this information by anyone is extremely low. This system is also physically locked down and is only accessible by authorised personnel.
Patient identifiable information will only be kept for the minimum amount of time possible until data linkage and validation of data linkage has taken place, expected to be completed by the end of March 2020. Following this stage, personal identifiable information will be removed from the CUREd Research Database and replaced by a unique identifying number.
Researchers outside of The UOS team will only be provided with data following an application process and review by the CUREd Data Release Committee (DRC). If approval is given to receive data, researchers will be required to sign an agreement outlining required security practices and procedures. The data MUST only be used for research purposes that align with the aims of the research database (i.e. used for research in urgent and emergency care).
If you would prefer for your information not to be included in the CUREd Research Database we can delete this information, you do not need to give a reason and your rights will not be affected. Importantly, removing information will limit our ability to conduct research.
Please note, you must notify The UOS team before March 2020 if you wish for your information to be removed as it is not possible for us to remove your information if data linkage has already taken place and patient identifiable information has already been deleted.
If you have any questions or concerns, please contact The UOS team using the following methods:-
Maxine Kuczawski, Study manager
Telephone: 0114 222 2981
Address: CURE, School of Health and Related Research, University of Sheffield, 30 Regent Street, Sheffield S1 4DA