Part of the AIRWAYS-2 study is looking to link data collected during the study (study data) to routinely collected NHS data (routine data). This will provide the AIRWAYS-2 study with more information on patients care and survival following their cardiac arrest. You can find more information on study data in the Patients tab. The routine data will include information relating to any hospital admissions, outpatient appointments, Accident and Emergency department attendances and deaths.
The process of data linkage is managed by a Data Controller. The AIRWAYS-2 study has three data controllers with joint responsibility; the study Sponsor, South Western Ambulance Service NHS Foundation Trust, University Hospitals Bristol NHS Foundation Trust and the University of Oxford. If you wish, you can contact the Data Protection Officer at each of these organisations;
South Western Ambulance Service NHS Foundation Trust: DPO-DPAS@Protonmail.com
University Hospitals Bristol NHS Foundation Trust: InformationGovernance@UHBristol.nhs.uk
University of Oxford: email@example.com
Study data has been collected from hospital records and will be sent from the AIRWAYS-2 team at University Hospitals Bristol NHS Foundation Trust to NHS Digital, who are the holders of the routine data. In order to link the study data to the routine data, some identifying patient data will be sent to NHS Digital (date of birth, full name, NHS number, gender and postcode). The transfer of identifiable data will be secure and only necessary data will be shared with NHS Digital. NHS Digital will link the relevant routine data to the study data and return it to the AIRWAYS-2 study team at University Hospitals Bristol NHS Foundation Trust. This linked data will include identifying patient data (date of birth, full name, NHS number, gender and postcode). The AIRWAYS-2 study team in Bristol will undertake some data cleaning and then pseudonymise the data (all identifying patient data will be removed but the unique study ID will be included). This pseudonymised data will be sent to the University of Oxford where the AIRWAYS-2 health economists will analyse the data. This team will look at the value for money of the two treatments being compared. At no point will your data be transferred to any third countries or international organisations. The linked data will be securely stored for 5 years from the end of the study, as is required in clinical trials. This period is from August 2018 to August 2023.
Your data is being processed under General Data Protection Regulation Article 6(1)(e), processing for a task in the public interest, and Article 9(2)(j), processing for scientific research purposes.
The General Data Protection Regulation provides rights for individuals which we need to make you aware of; the right to be informed, the right of access, the right to rectification, the right to erasure, the right to restrict processing, the right to data portability, the right to object to processing and rights in relation to automated decision making and profiling. There is no automated decision making (making a decision solely by automated means without any human involvement) or profiling (automated processing of personal data to evaluate certain things about an individual) involved in this study. The rights available to you depend on the reasons why we are processing your data. In certain circumstances, you have the right to request the restriction of the processing of your personal data. This means that you can limit the way that an organisation involved in this study uses your data. You may contest the accuracy of your personal data, you may feel that your data has been unlawfully processed, you may wish for an organisation to keep your data for a longer period in relation to a legal claim, or you may object to the articles under which an organisation has processed your data. These requests can be made in writing or verbally. You can contact the Project Manager via email at firstname.lastname@example.org or via telephone 0117 342 2526.
If you wish to opt-out of this data sharing, you can do so at any time, without giving a reason, by contacting the Project Manager via email at email@example.com or via telephone 0117 342 2526.
If you have concerns about how an organisation has handled your information, you have the right to lodge a complaint to the Information Commissioner’s Office. Their helpline number is 0303 123 1113. You can also contact the Project Manager or relevant Data Protection Officer in the first instance (contact details above).