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
Key resources for Cambridge health researchers in 2019
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.
Dr Diogo Gomes is the Clinical School’s PPE coordinator. Contact him with any questions or for updates on University resources, training and vehicles available to support your PPI and E.
This Institute published a review on public involvement in August 2019 called Involving patients and the public in research. The report authors conducted a rapid review of the literature on this topic and conducted interviews with experts in this field to throw light on the field, what works and what the challenges and unknowns are.
CUH PPI Panel: Cambridge Biomedical Research Centre.
Individual researchers and research groups can request access to this panel of around 80 members of the public to get dialogue and feedback on various aspects of their research projects. This service is focused on public involvement and is well organised and streamlined. Available to researchers on the Biomedical Campus regardless of funding source.
The service is divided into two main streams:
- 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: to offer a more interactive look at projects/ideas/documents.
Researchers are welcome to contact Treena Becker if they would like to involve the CUH PPI panel in their work and have questions about the process. If researchers would like to discuss their projects in order to develop a PPI plan, contact Dr Amanda Stranks for advice or to request access to the panel.
For more information: https://cambridgebrc.nihr.ac.uk/public/
NIHR School for Primary Care Research
The School has put together an information hub about PPI and E which includes signposts, case studies and resources, including examples from research at the Primary Care Unit. The School’s PPI and E coordinator is Dr Esther van Vliet.
NIHR CLAHRC East of England
This May 2018 guide, Guidance for Researchers: Feedback, is a 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.
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/
Page last updated 20/08/2019 by Lucy Lloyd, Unit Communications Manager