Patients and the public are key to the design, conduct and dissemination of our research, whether we are exploring better ways to help people stop smoking, become more physically active or take their tablets as prescribed, to diagnose cancer, type 2 diabetes and atrial fibrillation earlier, or to help people at the end of life make decisions about their treatment.
Patients and the public connect with our research from concept to dissemination. Involvement in the design and conduct of the research is often known as Patient and Public Involvement (PPI), while dissemination and discussion of findings and implications is sometimes seen separately as Public Engagement. Here are some examples of the range of activities we do with public groups:
- public involvement in identifying research priorities and suggesting ideas for specific research projects
- lay members as joint grant holders or co-applicants on a research project – or to review funding applications
- lay members on project advisory or steering groups
- public/patient/carer/practitioner commenting and developing patient information leaflets or other research materials
- advice on recruitment methods and avenues (and advise on strategy if recruitment stalls)
- community members undertaking interviews with research participants or assisting in focus groups
- individuals often help plan dissemination of research to lay audience
- lay members of advisory groups/steering committees sometimes co-author journal articles and discuss the work in the media
- they may present the research at conferences and events
National resources for researchers
These two national agencies have a great range of resources for researchers who wish to learn more about connecting with the public, or specific patient groups.
INVOLVE – national expert agency to support 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
National Co-ordinating Centre for Public Engagement (NCPPE)
This organisation is specifically to help universities and researchers engage with the public. Resources include guidance on engagement methods, funding sources and evaluation, plus case studies. http://www.publicengagement.ac.uk/
Key resources for Cambridge health researchers
Our researchers frequently take part in University or Cambridge Biomedical Campus activities with the public. They may also work with agencies that recruit, support and train patients and members of the public, and with specialist groups with particular experience of caring, or of specific conditions, for example. Here are some connections that may be useful if you are looking to get started:
University of Cambridge
There is a wealth of public engagement events and festivals organised by the University that researchers can use if looking for opportunities to discuss research with members of the public: Cambridge Science Festival, the Festival of Ideas, Pint of Science and much, much more.
Cambridge Biomedical Research Centre
Addenbrookes public panel
Individual researchers and groups can request access to this 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: researcher documents, such as funding proposals, lay summaries, project outlines, patient information sheets can be sent to the panel for feedback and opinions.
- Focus groups: may be available, to offer a more interactive look at projects/ideas/documents
For more information: https://cambridgebrc.nihr.ac.uk/public/
Addenbrookes Young People panel
The Addenbrookes PPI team also runs a ‘Young People in Research’ panel. It consists of 20 1st year 6th formers 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.
Contact: firstname.lastname@example.org to discuss this panel.
For more information: 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, including examples from research at the Primary Care Unit.
NIHR CLAHRC East of England
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.
Lorna Jacobs, Senior Programme Manager at NIHR CLAHRC East of England: Lorna.Jacobs@cpft.nhs.uk
More helpful PPI resources at NIHR CLAHRC EoE
Cambridgeshire and Peterborough NHS Foundation Trust
Iliana Rokkou, PPI Lead for CPFT; email@example.com
See this public presentation, from December 2017, on service user and involvement at CPFT, by Iliana
Page last updated 18/02/2019 by Lucy Lloyd, Unit Communications Manager