News & Stories
Spring 2026 Participant Newsletter
A safer, more effective way to use Generations Study data for research
We are planning an important step to help make the most of the Generations Study, while continuing to protect your privacy.
Over more than 20 years, the study has collected uniquely valuable information. To increase its impact, we are improving how researchers can access and use these data. This is also a requirement from our funders, Breast Cancer Now.
At the moment, we share data by sending de-identified datasets to approved researchers. This works, but it can be slow, harder to monitor, and limits how many studies we can support.
We are now planning to move to a more secure system called a Trusted Research Environment (TRE). In this model, researchers do not receive copies of the data. Instead, they access them remotely within a highly secure system. The data stay protected at all times, and only checked, summary results can be taken out. This approach is widely used by the NHS, government and universities to handle sensitive data safely. We plan to join the UK Longitudinal Linkage Collaboration (UK LLC) TRE for this purpose.
Who is UK LLC?
UK LLC is the national TRE for bringing together and sharing data from longitudinal population studies (like the Generations Study). It is run by the Universities of Bristol and Edinburgh, in collaboration with University College London, Swansea University, the University of Leicester and City St George’s, University of London.
The platform brings together data collected by studies, along with linked information (such as health records), to create a richer resource for research.
UK-LLC follows strict safeguards known as the “Five Safes”, which ensure that:
only approved researchers can access data
projects are appropriate and approved
data are protected and de-identified
access takes place in secure systems
results are checked before release
UK-LLC website for more information: https://ukllc.ac.uk
What will change and what will stay the same?
Most importantly, how your data are protected and governed will not change.
We will continue to:
control who can use the data and for what purpose
require strict approval processes for all research
ensure data used by researchers are de-identified
ensure all research stays within the scope of your consent
What will change is how the data are accessed and linked:
Researchers will access data securely within the UK LLC TRE, rather than receiving copies
Data will remain in the secure system at all times
Health data linkage will be coordinated by a trusted NHS Wales service
Currently, we send personal data directly to NHS organisations (such as NHS England or NHS Scotland) to carry out linkage. Under the new model, NHS Wales will act as a trusted broker, coordinating the linkage, removing identifying details, and providing only de-identified data for research.
How will approved researchers access my data?
Researchers will access and analyse the data within the UK LLC TRE. No data on individuals can leave the system—only aggregated results (such as tables or graphs) can be exported.
Can I refuse to have my data used in this way?
You have the right to withdraw your consent for data linkage, or to withdraw from the study altogether if you wish.
To find out more about your options, please read the information on withdrawal options.
If you have further questions, please contact the Generations Study team.
Participant Feedback
We discussed these plans with our participant panel, who were supportive and raised no major concerns. We will continue to keep you informed and welcome your feedback.