Patient and Public Involvement (PPI) is key to the design and conduct of research within the Primary Care Unit.
Public involvement in research is when the research is carried out with or by members of the public rather than ‘to’, ‘about’, or ‘for’ them.
PPI can be used throughout the life of the project from concept to dissemination:
- involvement in identifying research priorities and suggesting ideas for specific research projects
- as joint grant holders or co-applicants on a research project – or to review funding applications
- as members of a project advisory or steering group
- commenting and developing patient information leaflets or other research materials
- to suggest recruitment methods and avenues (and advise on strategy if recruitment stalls)
- undertaking interviews with research participants or assisting in focus groups
- help plan dissemination of research to lay audience
- co-author journal articles and lay media
- present at conferences
PPI and secondary data science
PPI can also have a role to play when research does not involve new data collection. Setting research priorities and questions, and planning dissemination activities can involve lay members.
We do not have our own panel of PPI members at PCU for our research work, but lay members contribute and work within all of our research programmes. We work with other local agencies that can provide the necessary support and training for PPI members. They also provide advice to researchers who wish to learn more about PPI within their research.
PPI RESOURCES FOR HEALTH RESEARCHERS IN CAMBRIDGE AREA
These notes are regularly updated with new resources and tools for researchers.
University of Cambridge
Sophie Wheeler, Public Engagement Coordinator, School of Clinical Medicine
Telephone: +44 (0)1223 3 35658
Sophie is developing a PPI and public engagement strategy with a network for the Clinical School and can provide tailored advice for bids and projects.
Cambridge Biomedical Research Centre
Amanda Stranks and Anna Ellis – Addenbrookes public panel
Anna and Amanda will meet with individual researchers (and groups) to discuss PPI needs and strategy, and have a panel of around 80 members of the public that are happy to provide feedback to researchers on various aspects of their projects. They do this via two main streams currently:
- Document review: where we send researcher documents (for example, funding proposals, lay summaries, project outlines, patient information sheets etc) to our panel and they provide their feedback and opinions. Generally we ask researchers to allow for 2 – 3 weeks to receive their feedback summaries, and to provide a small response to the feedback for the panel
- Focus groups: For projects/ideas/document collections requiring or benefiting from more interactive feedback directly to the researcher we also offer focus groups
For more information: https://cambridgebrc.nihr.ac.uk/public/
NB: The panel is made up of volunteers from the local area and are ‘lay’ in the sense that they are not professional researchers. However, it should be noted that (in common with many facilities in Cambridge) they are probably not representative of the Cambridge ‘public’ as a whole. We have participants from a variety of backgrounds/ages etc, but retired professionals do make up a greater proportion of the panel than you would expect to see from a truly random sample of Cambridge society. In many cases this is a distinct advantage as they have a wealth of non-research expertise to offer, and they are extremely articulate and very insightful, but it’s worth bearing in mind nevertheless.
Addenbrookes Young People panel
The Addenbrookes PPI team in Cambridge has now launched a ‘Young People in Research Programme’ to complement the regular PPI panel. It is comprised of 20 1st year 6th former’s from 6 local schools (mix of state and private). They will be able to review documents and meet with researchers to discuss projects or hold focus groups, the latter will require flexibility from researchers as they will only have specific times slots available each week.
This group will be running until June 2018 with the current cohort. The coordinator, Anna Ellis, is happy for this resource to be available throughout the region, so if you have any projects which focus on young people, please contact: email@example.com to discuss ways in which the panel can help.
For more information please visit: https://cambridgebrc.nihr.ac.uk/public/young-people-research-programme/
Citizen’s senate in the Eastern region
This is an experienced group of people in the Eastern region, supported by the Eastern Academic Health Sciences Network, aiming to influence regional health and care strategy by presenting patient, carer, and family perspectives: https://www.eahsn.org/our-work/improving-health-and-care/east-england-citizens-senate/
NIHR School for Primary Care Research
The School has put together an information hub about PPI which includes signposts, case studies and resources.
Cambridgeshire and Peterborough NHS Foundation Trust
Iliana Rokkou, PPI Lead for CPFT; firstname.lastname@example.org
See this public presentation, from December 2017, on service user and involvement at the Trust, by Iliana
NIHR CLAHRC East of England
Lorna Jacobs, Senior Programme Manager at NIHR CLAHRC East of England: Lorna.Jacobs@cpft.nhs.uk
This May 2018 guide, Guidance for Researchers: Feedback, is a new tool providing researchers with advice on the best ways to ensure patients, carers, service users and members of public contributing to their work are kept informed of research progress and their input is formally acknowledged. From NIHR CLAHRC East of England with Involve and the NIHR Research Design Service.
More helpful PPI resources at NIHR CLAHRC EoE
INVOLVE – supports active public involvement in NHS, public health and social care research
This NIHR-funded national advisory group brings together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated. Provides a wealth of resources, briefing notes and training for researchers: http://www.invo.org.uk
INVOLVE and the Health Research Authority (HRA) have released their third report that explores the extent of public involvement reported in applications to the HRA Research Ethics Service (RES). Please see the report for further information.
Page last updated 05/06/2018 by Lucy Lloyd, Unit Communications Manager