Data sharing

Statement for study participants of the studies taking part in the UK LLC about the use of your data and NHS data for research

As a study member of one of the studies taking part in the UK Longitudinal Linkage Collaboration (UK LLC), you have kindly shared data about yourself with your study to help improve health and wellbeing. Linking the data you give your study with your NHS health records (such as those held by your GP or by the hospital) is important. During the pandemic, your study has used this data to understand why some people are at higher risk of COVID-19, what factors influence recovery and who is missing out on healthcare.

New national plans about a new GP database have raised concerns about data privacy and use.

We want to be clear – the data you share with us, and any links we make with health records, are not part of these NHS plans. We work with the NHS to access copies of your records but do not give study data to the NHS. This may include access to the planned GP database, but only after the ongoing consultation and once any necessary changes have been made.

Our commitment to you:

  • We never use personal identifiers such as your name or address in any of our research.
  • We only use personal identifiers such as your NHS number to link the information you give your study to your health records.
  • This de-personalised data is used solely for research in a secure, confidential space, called a “Trusted Research Environment”. Results cannot leave the environment until an independent checker has confirmed that no individual can be identified.
  • Approved researchers can only access the trusted research environment once they and their research question have been checked and approved.
  • No data is shared for profit making purposes. We do not sell your data, and we never will. Any researcher using your data signs up to this commitment.
  • As a community of studies and data scientists we manage your data ourselves. We do not outsource to private companies.
  • Our ways of working are reviewed by independent ethics committees and volunteer study members.