Public Involvement Resources
Researchers applying for SPCR funding are required to detail their public involvement and engagement plans as part of their application.
We encourage researchers interested in applying for SPCR funding to review the below sections to help develop their plans for public involvement and engagement before applying for funding. You may also wish to review our public involvement and engagement training page for upcoming training events and online training modules to support you to plan and develop your public involvement plans.
All SPCR Funded projects are expected to work towards meeting the UK Standards for Public Involvement. The standards are a description of what good public involvement looks like and encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other. We recommend that researchers familiarise themselves with the standards before commencing planning of their involvement activities.
Several organisations, including the NIHR, have also developed comprehensive guidance documents and tools to help researchers plan for, and facilitate, public involvement in their research. Some of these are listed below:
From NIHR:
From SPCR Members:
- University of Oxford, Medical Sciences Division – Researchers’ Public Involvement Guidance
- University of Bristol, Centre for Academic Primary Care – Information for Researchers
- University of Exeter, Exeter Collaboration for Academic Primary Care (APEx) – Information for Researchers
- University of Manchester – Resources for Researchers
From charities:
- Cancer Research UK - Public involvement toolkit for researchers
- Arthritis UK - Patient and Public Involvement: A researchers guide
Who to involve?
Who you choose to involve will depend on the population on which your research is based and the purpose of your involvement plans. You should think through what knowledge and experiences would be most helpful for your research and which individuals or groups are mostly likely to bring these.
Although it is not possible for you to represent your whole target population for public involvement purposes, ensuring you involve individuals or groups from a variety of different backgrounds and with a diversity of experiences is critical. The greater the diversity of people you involve, the greater diversity of insights you will get in return to inform your research.
Involving diverse perspectives in research:
Involving communities in research:
- Community engagement toolkit (NIHR Research Design Service, 2022)
- Inclusive approaches to involvement of community groups in health research: the co‑produced CHICO guidance (Jameson et al., 2023)
Children and young people:
Involving people with mental health problems:
- Influence and participation toolkit (Mind, 2023)
People living with disabilities:
- A Guide for Service Providers and Practitioners Organising Involvement Activities with Disabled People (Shaping our Lives, 2017)
WHERE TO FIND PEOPLE TO INVOLVE?
- Through your local SPCR Public Involvement Leads - most Departments have access to a database of people interested in being involved in Primary Care Research
- Previous or current public contributors - You can consult your current or past public contributors whether the know people or organisations in their network who might be interested in becoming involved in your research.
- Third sector and community organisations - Think about who your research is trying to serve and reach out to relevant local organisations. Note, time is needed to build relationships and trust with these groups before asking them to be involved in your research.
- People in Research - This NIHR affiliated website allows researchers to advertise opportunities for involvement to the public. Its reach is UK-wide but tends to be used by members of the public who are more experienced in public involvement
- GenerationR - Involvement of children and young people
- VOICE Global - online platform for public involvement and engagement
- Charities – Many have their own patient networks
- Social media - sharing flyers for your involvement opportunities on Twitter, Instagram, Facebook
How and when to involve the public?
Members of the public should be involved across the who lifecycle of the research process. The image below developed by Louise Ting (Public Contributor) at ARC West, outlines the different ways the public might be involved across the research cycle.
Involving people in Advisory Groups:
- Working with a patient advisory group (Cancer Research UK)
- How to set up and organise a Young Person’s Advisory Group (GenerationR and eYPAGnet)
Involving people on Trial Steering Committees:
Involving people in virtual activities:
- How do I hold a PPI meeting using virtual tools? (NIHR SPCR, 2020)
- Virtual Patient and Public Involvement: A guide to video calling (NIHR, 2020)
- How to host an accessible online meeting (AbilityNet, 2020)
- How to Make Your Virtual Meetings and Events Accessible to the Disability Community (Rooted in Rights, 2020)
- How to Run Accessible Online Meetings for disabled people working and studying from home (AbilityNet, 2020)
Involving people as co-applicants:
- Public co-applicants in research – guide to roles and responsibilities (NIHR, 2021)
Involving people as peer researchers:
- Ten principles of peer research (The Young Foundation)
- Peer Research Training Resource (Patient Experience Research Centre, 2022)
Involving people in co-design activities:
- EBCD: Experience-based co-design toolkit (The Point of Care Foundation)
Co-producing research:
- Guidance on co-producing a research project (NIHR, 2021)
- A map of resources for co-producing research in health and social care (NIHR ARC West, 2020)
- Public involvement vs co-production: what’s the difference? (NIHR Research Design Service, 2021)
Participatory approaches to research:
- Participatory Action Research: A Toolkit (University of Reading, 2023)
- Participatory Research: Why and How to Involve People in Research (Sage Research Methods, 2020)
The way people are involved may also differ depending on the type of research being conducted and further guidance has been developed
Involving the public in Health Data Research
- Involving people and communities in digital services (NHSx)
- Building trust in data access through public involvement in governance (HDRUK, 2021)
Involving the public in Systematic Reviews & Evidence Synthesis
- Patient and public involvement in systematic reviews (Guidelines International Network, 2021)
For more methodological inspiration and practical guidance of how to involve people. You can visit the Action Catalogue (an online decision support tool developed as part of the Engage2020 project)
It is important to evaluate your public involvement activities to understand the impact of involvement on both your research and the people involved. It will also help you to learn from your involvement activities which can inform your next project and be shared with others.
Developing a plan on how you will evaluate involvement across your project should be done early. You should think about:
- what you are aiming to achieve through the involvement of patients and the public
- what success might look like (you may wish to refer to the UK Standards for Public Involvement when thinking about this)
- how impact will be measured (both positive and negative - on the research project and on those involved)
At a minimum we recommend keeping notes from relevant meetings and conversations with the public, which you can collate in this template developed by the School for Primary Care Research. However, there are a number of tools to help researchers with the evaluation of their involvement activities:
- Public Involvement in Research Impact Toolkit (PIRIT; developed by Marie Curie Research Centre, Cardiff University)
- Public Involvement Impact Assessment Framework (PiiAF)
Funders also will ask you to report on your public involvement and the impacts that it has had on your research, and on those involved. These reports can also be used to share best practices wider within the research community. The following tools have been developed to support researchers to report on their involvement activities.
Further Guidance:
- Things to consider if you are capturing the impact of involvement in research (Charities Research Involvement Group)
- Why impact matters in involvement (NPC)
There are numerous guidance documents and helpful websites that can provide practical support in planning and executing your involvement and engagement activities.
Your local PPI lead is your first point of contact and can signpost you to local guidance and advise you further.
Payments for public involvement
It is best practice to pay people for their time involved in research as well as covering reasonable expenses incurred through their involvement.
Payments for time are considered ‘honorarium’ payments, and are a form of recognition offered for contributions made to each activity, and not an hourly rate. This does not mean that contributors have a contract of employment with your department or organisation. The fee should cover the preparation for, attendance at meetings, and any post-activity feedback.
We recommend that researchers refer to the NIHR payment guidance for paying public contributors and when budgeting for public involvement in grant applications.
Guidance is also available for members of the public about receiving payment for involvement activities, with specific information about how involvement payments might affect benefits.
Read SPCR PPI Payment Statement
Accessibility
When organising any activity you should always keep the accessibility in mind. Patients might have several conditions and some disabilities are invisible, though would still require adjustments to your activity. You may wish to refer to the following guidance to help you think about your own activities, events and communications.
- Use our Accessible Events Checklist | Shape Arts
- Making events and meetings accessible | SCIE
- Advice for making events and presentations accessible - Accessibility in government (blog.gov.uk)
- Creating accessible information and communication resources for health and social care | RNIB
- Dyslexia friendly style guide - British Dyslexia Association (bdadyslexia.org.uk)