Our participants are at the heart of our organisation and, in many cases, know best how we can get things right. Participants have influenced our work in a range of important ways over the past 20 years.
Our broad aims
- Participant involvement is embedded in UK Biobank culture –participant involvement is a normal and expected part of our work.
- Participant involvement at UK Biobank meets the highest standards – our approach is meaningful, respectful, inclusive and transparent.
- Participants and staff are supported to collaborate with each other – we provide the information and opportunities that participants and staff need to be able to work together effectively.
You can download our participant involvement strategy below:
Involvement activities
We use different activities to make sure we are having in-depth discussions as well as reaching a wide range of participants.
- Participant Advisory Group: this group plays a central role in ensuring we hear and act upon the views and opinions of UK Biobank participants.
- Ethics Advisory Committee: two members of this committee are participants, and they help provide ethical advice to the UK Biobank Board and the Access Committee.
- Workshops and focus groups: we regularly bring participants, patients and members of the public together to discuss the issues and dilemmas we are facing. Examples include:
- Brain Health Study workshops
- Communicating with participants workshop
- Ethics of accessing biological samples focus groups
- Participant feedback surveys: we use surveys to consult large numbers of participants. In 2024, we asked all participants to tell us how they would like UK Biobank to communicate with them.
- Participant events: these happen throughout the year for participants in different regions. Watch recordings of past events.
Get involved
We are always looking for participants who are willing to get involved and provide their views on UK Biobank’s work.
You do not need to have any prior knowledge of health research. In fact, we would like to encourage participants who have had other personal and professional experiences to get in touch. We would love to hear from you.
Please contact us on [email protected] to express your interest and we will be in touch.
“Being a member of the Participant Advisory Group is both interesting and a responsibility. The members have a wealth of knowledge and experience which is freely offered in discussion.”
Carrol, Participant Advisory Group member
Participant events
We hold regular events for participants, both online and in person. We don’t have any events planned at the moment but you can catch up with past events on our YouTube channel.