Research Institutions

Deepening participant engagement at UK Biobank

UK Biobank
6 months

UK Biobank is a large-scale biomedical database and research resource containing genetic, lifestyle and health information from half a million UK participants. UK Biobank’s database, which includes blood samples, heart and brain scans and genetic data of the 500,000 volunteer participants, is globally accessible to approved researchers who are undertaking health-related research that’s in the public interest.

UK Biobank commissioned Involve to help them understand how they might deepen their engagement with Biobank participants. 

To enable us to make recommendations for the future, Involve:

  • Undertook desk based research to understand Biobank’s role, reputation and governance
  • Interviewed internal and external stakeholders to understand the current participant engagement, appetite for change, and risks and benefits that might bring
  • Undertook further research about how other cohort studies involve participants
  • Designed a workshop for these stakeholders where the findings from the desk research and interviews were presented and attendees then discussed potential ways forward. 

Our final report made a series of recommendations for UK Biobank to better understand their participants and move to including them more in decision making processes. 

Photo by Louis Reed on Unsplash.