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Data protection

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How we store and process UKCCS data

In-line with the NHS Information Governance Toolkit, which helps organisations check that they are storing data in the best and safest way possible, all UKCCS data are held in a secure database. Only researchers at the University of York, who follow strict data protection principles can access the data, and all processes and procedures comply with General Data Protection Regulations (GDPR), introduced in May 2018.
 

Where does information on people’s health come from and what is it used for?

Information on health, and healthcare use, is routinely collected by the National Health Service (NHS) across England, Scotland and Wales; this includes inpatient stays and outpatient appointments. Separate national systems also compile information on births, deaths and cancers. These data are used to inform policy and improve care.
 

How is this information accessed within the UKCCS?

When the UKCCS was set-up, all children whose families were identified as potential participants were assigned a unique study specific serial number, and their NHS numbers and dates of birth were retained. These details were sent to the national authorities who link routinely collected health data together; currently these include NHS Digital in England, the Information and Statistics Division (ISD) in Scotland, and NHS Wales. Using the study specific serial number, the linked data were then returned to the UKCCS research team for analysis.
 

Can I be identified from the UKCCS data?

No. The NHS numbers used in the 1990s had a different format to those used now, and the UKCCS has not updated them. This means that no-one from the UKCCS research team can identify any individual who is part of the study.
 

I do not want to share my information – what should I do?

UKCCS researchers are unable to identify any individual person within the study from the information currently held. Identifiable information has either been removed, or is in a format no longer used. If you are certain you do not wish your data to be used within this study, you may find information about the national data opt-out helpful. This can be accessed here: https://www.nhs.uk/your-nhs-data-matters/.