UK Biobank participants come together to give their views
UK Biobank participants come together to give their views
UK Biobank participants have been meeting at focus groups all over the UK to discuss their views on two important issues.
Accessing biological samples
Over the past year, 12 focus groups have taken place to explore what participants think about UK Biobank accessing samples of their blood and tissue that are stored by the NHS for clinical care.
Preliminary findings suggest that focus group participants are content for UK Biobank to access biological samples that are stored as part of clinical care, and that they consider them to be a part of their medical record. All participants provided consent for UK Biobank to access to their medical record when they joined the study.
Nearly 100 participants took part in the focus groups, which were organised across Scotland, Wales and England and online by researchers working with UK Biobank’s Ethics Advisory Committee. The full findings will be written up and published in an academic journal.
Communication
A further group of 22 participants met in August to provide feedback on the way UK Biobank communicates with its participants.
Participants looked at the materials used to invite participants to take part in UK Biobank’s imaging study and the information we provide about what to expect. They also considered other ways that UK Biobank communicates with participants, such as the website and the annual participant newsletter.
We were pleased to hear the participants are mostly happy with how we are doing things, but they had some suggestions for improvement. For example, they would like clearer information about what would rule someone out of taking part in the imaging study.
A strong message that came through from all the focus groups was that participants like to receive information about the research that UK Biobank is enabling and its impact. They also like to hear about the experiences of other participants and enjoy coming together at these types of events.
We are very grateful to all the participants who took part in the focus groups. Over the next few months, we will be considering how we can implement their valuable feedback and suggestions.
Participant Advisory Group
There will be more opportunities for participants to get involved in discussions like these in future.
We are currently setting up a Participant Advisory Group to help us develop a new strategy for involving and engaging participants in our work.
More information about what’s involved and how to apply is available here: https://www.ukbiobank.ac.uk/explore-your-participation/contribute-further/uk-biobank-participant-advisory-group