What does this mean?

It means that we have Patient and Public Representatives (PPR) involved in all stages of our research projects. This can start from the very beginning of a project, with individuals invited to share their life and healthcare experiences to help develop the important research questions and make sure they are relevant and important to patients and/or their families.

Once the research question has been decided, PPR involvement continues into the project development stage, with active involvement in discussions around feasibility (can it be done!) and making sure all the paperwork involved (information sheets, project summaries, publicity materials) are informative and understandable to all members of the general public. Evidence of this public involvement in project development has now become important to funding bodies (the organisations that supply the money to run projects) and is becoming an essential component of successful funding applications.

This ongoing involvement helps improve our health focused research and also leads to opportunities for members of the public to either take part in studies that they have helped develop and are interested in, or to become members of the research team to help support the project through to its completion.

As all research results should be made public, we also invite our patient and public representatives to be involved in making sure study results are presented in clear and understandable formats, this could also include personally presenting results at local patient/public forums if this was of interest to them.

NIHR Exeter BRC and CRF PPIE Strategy

How can I get involved?

We are always keen to hear from anyone who would like to join us. We offer several ways to become involved:

Exeter 10,000 / Peninsula Research Bank

You could volunteer to join our key research resource, open to anyone over the age of 16 either with or without health problems which acts as a gateway to further studies. The Exeter 10,000 (EXTEND) was originally set up to collect genetic, biological, clinical and lifestyle information on at least 10,000 adult individuals in the Exeter region, with all  the information and samples to be collected and stored securely in the Peninsula Research Bank (PRB).

The PRB now holds samples and health information on over 11,000 individuals, many of whom are happy to hear about further research.  People can be selected by researchers on the basis of the information they provided, and then be invited to take part in more detailed studies aiming to understand more about the processes involved in common diseases such as diabetes and ischaemic heart disease, or projects looking at how things work in health and how they change with age.

Access to PRB volunteers/samples/information is controlled and monitored by the PRB Steering Committee. Researchers apply to the committee, providing detailed information on their study, what they hope to achieve, and what they need from the PRB for this to happen. These applications are reviewed by both scientific and public (lay) members of the committee.

Anyone who has signed up to EXTEND or has donated samples/health information to the PRB at the end of other projects, has the opportunity to become a member of this PRB Steering Committee to work with researchers to ensure the quality of research supported by the Exeter CRF and to ‘self-govern’ the use of their samples and data.

To become a lay member of the PRB Steering Committee you do not need to have any particular medical condition or special qualifications. We are keen to enrol a wide range of people from different backgrounds and experiences. Everyone has valuable opinions on what research is relevant and input into ensuring the feasibility of our studies.

At present, we have a monthly meeting at lunchtime – see the dates listed.  To be able to listen effectively, we invite a maximum of 6 lay members to attend these meetings but all lay members are invited to respond to agenda items by email, letter or telephone in advance of these meetings, so the opinions of the wider group can be considered at all meetings.  You will be asked to sign up to attend 2-3 meetings per year. There is no obligation to respond to all materials sent by email/post, and we are happy for members to “dip in and out” to fit in with their other commitments.

If you would like to hear more about Exeter 10,000 and becoming a member of the steering committee then please email: crf@exeter.ac.uk or phone: (01392) 408181.