The UK Clinical Cohorts (UK CliC) Trusted Research Environment (TRE) is a secure system that helps researchers answer important questions about heart and circulatory diseases. It brings together information from long-term health studies and NHS records, so scientists can learn more about how these conditions develop, how they can be prevented, and how care can be improved.
If you take part in one of the cohorts using UK CliC, please read our Participant Notification Sheet.
About the UK CliC TRE
Why does the UK CliC TRE matter?
Millions of people in the UK are affected by heart disease, stroke, cancer and other serious health conditions. By securely combining cohort study data with other health data, the UK CliC TRE helps researchers make discoveries that can improve people’s lives. This research can help to:
- Identify people at higher risk of heart disease earlier
- Find out which treatments work best for different groups of people
- Improve NHS planning and services using real-world evidence
- Spot early warning signs of disease
- Understand how lifestyle factors such as diet, exercise, and stress affect heart health over time
How are people’s data kept safe?
Protecting participants’ privacy is a top priority.
Research takes place in a secure environment provided the SAIL Databank, run by Swansea University. This environment meets the recognised security standards including ISO 27001 certification and UK Statistics Authority accreditation.
Key safeguards include:
- Researchers can only access anonymised data
- Names, addresses and other identifying information are not shared with researchers
- Only researchers affiliated to a recognised research organisation and who have completed safe researcher training can access the TRE, and only for approved projects
- Research outputs are checked before release to ensure no individual can be identified
The SAIL Databank and the UK CliC TRE follow the internationally recognised Five Safes Framework: safe people, safe projects, safe settings, safe data, safe outputs
Who decides which research projects are approved?
Every research project must show a clear public benefit.
Applications are independently reviewed by the Information Governance Review Panel (IGRP). This panel includes public representatives and experts, so public views are part of the decision-making process.
Find out more about applying to work with data in the SAIL Databank.
Have patients and the public been involved in developing the UK CliC TRE?
Yes.
The BHF Data Science Centre’s Patient and Public Involvement and Engagement (PPIE) group has been involved throughout the development of the UK CliC TRE. The group meets regularly and provides feedback on its aims, processes and development.
SAIL also has its own PPIE group, which helps shape the development of the SAIL infrastructure.
Have cohort participants given permission for their data to be used?
Yes.
All cohorts included in the UK CliC TRE have obtained permission from participants for their data to be linked with NHS records and other relevant datasets. Participants have also agreed that their data can be used by approved researchers to answer important health research questions.
Further information on cohorts and TREs
What is a cohort?
A cohort is a group of people who take part in a research study, often over a long period of time. Researchers collect information from participants to better understand health conditions and improve healthcare.
The information is stored securely and can be linked with other datasets to support further research.
To link, store and manage data securely, researchers use a Trusted Research Environment (TRE).
What is a Trusted Research Environment?
A Trusted Research Environments (TRE) is a safe and secure digital environment where researchers can access data for research that benefits the public.
TREs:
- Protect sensitive data
- Operate under strict governance and approval processes
- Allow researchers to work together securely with data
- Provide the tools and software needed to carry out the research
Find out more about TREs here: What is a TRE? – SAIL Databank
Will my data be sold to external companies for profit?
No.
Data held in the UK CliC TRE can only be used for approved research that delivers a public benefit.
There are costs involved in maintaining the TRE and providing secure access to data. Researchers and organisations using the service are charged to cover these costs, based on the resources they use.