For Study Participants

We recognise that everyone who volunteers as a study participant is contributing something very special for the benefit of the public, now and for the future.

Without you, researchers wouldn’t be able to analyse data and study the patterns that emerge about many aspects of our daily lives, our health and wellbeing and how the decisions we make can have a lasting impact. Without you, longitudinal research in the UK wouldn’t be the world-leader that it is today.

Participant Notification Sheet

We have produced a document that contains information for participants from studies that are contributing data into the UK Longitudinal Linkage Collaboration’s Trusted Research Environment (TRE). This is a secure computer system which allows researchers to study and analyse data from within the environment.

This document contains:

  • The background and purpose of the UK Longitudinal Linkage Collaboration (UK LLC)
  • Who runs the UK LLC
  • How the UK LLC ensures you won’t be identified by the data
  • What to expect as a participant in a collaborating study
  • How you will know if your data is being held and used in the UK LLC’s Trusted Research Environment.
  • Guidance on opting out.
  • A data flow diagram to show you we link to health records
  • Who will be able to access the data
  • Where the data is stored
  • How the data is being used
  • Who the researchers work for
  • Legal & GDPR information:
    • Who controls the use of the data
    • The legal basis for using the data:-
      • For using confidential health (NHS) information
      • For using confidential administrative information
      • For using study data
  • Your rights