Planning for involvement

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:

• Reaching Out: A practical guide to being inclusive in public involvement in health research – Lessons learnt from the Reaching Out Programme (NIHR, 2021)

• Equality, Diversity and Inclusion Toolkit - Public Involvement (NIHR, 2022) 

• Being Inclusive in Public Involvement in Health and Care Research (NIHR, 2021)

• A framework for considering who might be involved in research  (NIHR, 2021)

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 children and young people as advisors in research (NIHR, 2021)

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:

• Good practice guidelines on the recruitment and involvement of public members on Trial Steering Committees (TSCs) / Study Steering Committees (SSCs) (NIHR, 2021) 

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)