University of Exeter
Exeter 10,000 is a gateway to research involvement. The project aims to engage 10% of the adult population of Exeter and surrounding areas in research participation and to develop a long term relationship between these individuals and the research community using NIHR Exeter Clinical Research Facility. Physical participation in research helps the public to understand what research is all about and encourages deeper engagement, involvement and further participation. The team run public engagement stalls with NHS, community and workplace settings to recruit volunteers to join the Exeter 10,000 database and biobank. This 30 minute appointment gives the public a taste of research and pre-screens them for other studies run by the NIHR Exeter Clinical Research Facility (CRF). The portfolio of studies run by the CRF and access to Exeter 10,000 is managed by a steering committee of lay representatives who listen to scientists and help them to improve their protocols and patient facing materials, so that research is more acceptable to the public. Over half of all volunteers participating in Exeter 10,000 have done so following recommendation from a friend who has been involved with the research. Virtually all volunteers who have joined Exeter 10,000 have participated in at least one other study and feedback surveys suggest that all volunteers who have undertaken Exeter 10,000 would participate in further research.
The project has recruited over 7,000 participants so far and provided pre-screened volunteers for 51 ethically approved studies and over 30,000 samples to 26 biomarker studies. Participants are also involved in the design of research studies, for example improving readability of information sheets and ensuring that protocols are in line with public expectation. Participants have written to thank the team for inviting them into Exeter 10,000 as their time with on the project has heightened their awareness of their own health and in some circumstances allowed them to make changes to improve their health. Many groups, such as the Women's Institute have invited the team as guest speakers to improve their understanding of healthcare and healthcare research. The lay representatives on the steering panel report that they were stimulated by their participation. As a result of having good ongoing relationships between research-ready volunteers, clinicians and scientists, a number of collaborative projects have been developed.
The outreach work moved outside of the usual arenas for research recruitment, and included places of work, football stadiums, car boot stalls, fetes, pubs and other community spaces. Quizzes and games were used to engage people in experimental medicine research and talks were tailored to audiences using analogies that each group would be comfortable with.
The team already had considerable experience in managing clinical research projects. They knew what had worked well in the past and knew that public involvement would be needed to ensure success. Prior to writing the protocol for the project, the team attended a hospital open day where they presented the vision for the project and asked for input and feedback from the public. The first members of the steering committee were recruited at this event and have met monthly since to guide the development of the project. The role of the steering committee has developed far beyond expectation. In the beginning it was envisaged that there would be a steering committee with lay representation as well as scientists and clinicians. What has developed is a committee which is led by the lay members and the scientists providing advice as required.