Invitation to take part in a survey
You are being invited to participate in a survey about your experiences of involving patients and public involvement (PPI) within NIHR funded Experimental Centre’s (i.e., Biomedical Research Centres (BRCs), Clinical Research Facilities (CRFs) and Experimental Cancer Medicine Centres (ECMCs)).
Why are we undertaking this survey?
The survey is part of a PhD study by Jenny Preston (who is also the Patient and Public Involvement Policy Manager at the University of Liverpool, and Senior PPIE Manager at the NIHR Alder Hey CRF). The study is being undertaken at the University of Liverpool to develop a ‘Best-Practice Participation Framework with and for children and young people involved in the design and conduct of paediatric experimental medicine research’ (called the PREPARE study for short https://bit.ly/41lFqNU).
Your Centre might not involve children and young people directly, but your responses will give us a better insight into how patients and the public are involved at an organisational level in each of the Centres.
We are using the NIHR’s definition of involvement to mean:
“an active partnership between patients and the public and researchers in the research process, rather than the use of people as ‘subjects of research.”
Who should complete the survey?
The survey is aimed at individuals (Directors, Co-Directors, Operational Managers, Industry Managers, PPI Facilitators, patients, and the public, etc) within each of the Centres. The focus of the surveys is not on the evaluation of any single involvement activity but to understand how involvement is supported and carried out more broadly within each Centre.
What will happen to the survey results?
A summary of the findings will be produced and shared with respondents if requested. Results from the survey may identify pockets of good practice, and challenges faced by Centres which can inform how we meaningfully involve patients and the public in experimental medicine research in the future. Survey findings may also inform the Participation Framework alongside findings from focus groups (with children and young people) and semi-structured interviews (with researchers, research staff, and adult public contributors). Results may be used in publications and form part of the student’s thesis.
Links to surveys
Further information about the purpose of the surveys can be found in the survey links below.
For researchers and research staff in each of the centres’, please click here
I would also like to hear directly from any patient’s or public contributors you work with about their experiences of being involved. Therefore, I would greatly appreciate it if you could share the following links with them:
For adult patient/public contributors: click here
For children and young people:
10–15 years: click here
16-24 years: click here
If you have any questions relating to the research or this survey, please contact Jenny Preston on jennifer.preston@liverpool.ac.uk
Jenny Preston 
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