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#BeeWell joins forces with the UK Longitudinal Linkage Collaboration to power new insights into young people’s wellbeing

Since #BeeWell began, nearly 200,000 young people have shared their voices to help us understand and improve their wellbeing. Now, we are taking an exciting new step to make sure the data is put to work even harder in their interests.

After consulting with the #BeeWell Youth Steering Group, we are partnering with the UK Longitudinal Linkage Collaboration (UK LLC), who host the national Trusted Research Environment (TRE; a highly secure digital lockbox) for data linkage in longitudinal research. We will be placing a de-identified copy of our #BeeWell survey data into the UK LLC’s TRE. “De-identified” means that all direct personal details (e.g., names, dates of birth) are completely removed before any researcher can see it.

Approved researchers will be able to analyse these de-identified data alongside other information such as such as health, education, employment and/or place-based data. By linking these together, researchers can produce major new insights for the public good. 

Young people’s data, highly protected

  • Privacy first: No direct identifiers are shared with researchers. They only ever see data that cannot identify individuals.
  • Strict control: Only vetted, ethical research projects being conducted for the public good are granted access.
  • Supporting choice: Participation remains entirely voluntary. If parent/carers or children wish to opt out of this specific UK LLC data linkage, they can do so at any time without giving a reason.

Who is UK LLC?

UK LLC is a national collaboration of UK longitudinal cohort studies, universities, the NHS and UK statistical authorities. It is a unique resource that enables cross-sector research and supports research responses to immediate situations and future policy needs. UK LLC receives funding from UK Research and Innovation (UKRI) through the Medical Research Council (MRC) and Economic and Social Research Council (ESRC).

Data linkage

UK LLC has agreements with the NHS and other organisations that enable linkage to a variety of data sources.  Below we provide information about linkage to NHS/health data as an example to illustrate how the linkage process will happen, how children’s data will be managed in a safe and secure way, and what this means for parents/carers and young people. If you have any further questions, please contact us (details provided at the end of this notice).

Who will manage the linkage between children’s #BeeWell data and their NHS health record data? How is UK LLC involved?

Linkage to children’s medical records

Linkage to children’s medical records will be managed through the NHS (by NHS Digital Health and Care Wales). The NHS will work with UK LLC to link their health record data to their #BeeWell survey data, and make it available for research in a safe and secure way:

  • The NHS will remove identifying personal information (such as the child’s name) from their health records.
  • The NHS will transfer the child’s pseudonymised health information to the UK Secure eResearch Platform, or SeRP. No identifiable information will leave the NHS.
  • Within the SeRP, the child’s pseudonymised health information will be linked with their #BeeWell survey data. Any information that could be used to identify the child will be removed.
  • The child’s de-identified, linked data will be made available as part of the #BeeWell dataset to approved researchers via the SeRP Trusted Research Environment (TRE).
  • Data in the TRE will not include the child’s name, postcode, or date of birth, any real world ID numbers (like NHS ID), or the names or IDs of hospitals or other service providers.
  • Researchers will never be able to identify a child from their linked #BeeWell and health record data.

Who can apply to have access to these data?

Access to the anonymised linked data within UK LLC is very strictly controlled. Only UK-based researchers who have been approved by the Office for National Statistics (ONS), the UK LLC review panel and the #BeeWell study team will be permitted to access it to conduct research.

Researchers who wish to undertake any analysis on study data are required to go through a strict data access process and will need to be approved by the study team and data access committee. Only research in the public interest will be approved.

How will approved researchers access the data?

Researchers will access and analyse the linked data within the UK LLC Trusted Research Environment (TRE). No data on individuals will be able to leave the TRE: only aggregated data (such as graphs or tables) may be extracted.

I am a participating young person or their parent/carer. What if I object?

If you are a young person or parent/carer, you the right to object to this data linkage, or to withdraw your child from the study altogether if you wish. To do so, contact our data managers, Lawrence.wo@manchester.ac.uk or joao.santos@manchester.ac.uk, or beewellprogramme@manchester.ac.uk.

Please note however that if you have previously opted your child out of the #BeeWell study, their data has already been deleted and you do not need to contact us again.

If you have any further queries, please contact neil.humphrey@manchester.ac.uk

Updated privacy notice

The main #BeeWell study privacy notice is available here.

In the interest of fair processing, we are publishing an additional privacy notice pertaining specifically to data deposit and linkage processes being undertaken with the UK Longitudinal Linkage Collaboration (UK LLC).

You can access this updated privacy notice here.