Our Promises to Study Participants

As a participant of one of the studies taking part in UK Longitudinal Linkage Collaboration (UK LLC), you have kindly shared data about yourself with your study to help improve health and wellbeing.

UK Longitudinal Linkage Collaboration has developed this set of promises to participants of partner Longitudinal Population Studies.

These have been created in partnership with UK LLC public contributors, some of whom are study participants.

The data we talk about here is held in UK LLC’s Trusted Research Environment (TRE). This is a secure computer system where approved researchers can study and analyse data. Find out more about how TRE’s work.

You can look at our list of partner studies to find out if your study is part of UK LLC. 

All longitudinal population studies have an existing set of agreements with their participants about how their data is used. UK LLC is designed to respect these agreements. UK LLC’s Promises to Study Participants aim to provide answers to questions that are important to study participants.

We promise to involve study participants and members of the public across our operations, from important decisions about how we work, to the research we approve and how we communicate with the public. 

We promise to work to high standards. This means being transparent in our methods, securing accreditations from independent ethics committees and auditors, and working to the Five Safes framework to enable data to be used for public good research in the UK. 

We promise that our Trusted Research Environment:

  • Does not hold any personal identifiers. For example, there are no names or full dates of birth. This means it is highly unlikely any one individual can be identified.
  • Does not allow removal of data for analysis. The data stays within the TRE, which is based in the UK and may only be accessed by UK-based researchers.

We promise not to sell data, ever. In future, we may need to cover the costs of running the service by asking researchers to pay a minimal fee to access the TRE.

We promise to always respect the relationships between our partner studies and their participants and provide a resource that is tailored to the needs of longitudinal population studies.