Resources and Support

Cancer Research UK: Patient Involvement Toolkit for Researchers (2018)

Healthcare Quality Improvement Partnership: Patient and public involvement in quality improvement (2017)

Imperial College London: A Rough Guide to Patient & Public Involvement (2020)

NIHR Research Design Service: Patient and Public Involvement Handbook (2018) 

Sense about Science: Public engagement: a practical guide (2017)

University of the West of England: Practical Guide for Patient and public involvement in antimicrobial medicines development research (2018)

Health and Care Research Wales, UK Standards for Public Involvement one-hour training package (2021)

INCLUSIVE OPPORTUNITIES

Model: Public involvement in setting research priorities and questions (James Lind Alliance, 2021)

Toolkit: Increasing participation of Black Asian and Minority Ethnic (BAME) groups in health and social care research (NIHR Applied Research Collaboration East Midlands, 2018)

Toolkit: Increasing participation of Black Asian and Minority Ethnic (BAME) groups in health and social care research (Centre for BME Health)

Toolkit: INCLUDE - Better Healthcare Through More Inclusive Research (NIHR, 2020)

Resource: Involving children and young people in research: Top tips and essential key issues for researchers (NIHR, 2021)

Resource: PPI - top tips leaflets and podcasts for engaging with various communities (East Midlands Academic Health Science Network, 2017)

Resource: Tips for researchers involving unpaid carers in health and care research (NIHR, 2023)

Resource: Tips for carers to get and stay involved in health and care research (NIHR, 2023)

Example: Different volunteering and involvement opportunities (MIND, 2021)

Guidance: Accessibility Checklist (Scottish Health Council, 2014)

Guidance: Different experiences: A framework for considering who might be involved in research (NIHR, 2021)

Guidance: Being inclusive in public involvement in health and care research (NIHR, 2021)

Guidance: Government guidelines on writing about ethnicity (UK Government, 2018)

SUPPORT AND LEARNING

Guidance: Payment guidance for researchers and professionals, (NIHR, 2021)

Guidance: Budgeting for Participation (NHS England, 2015)

Example: Video ‘how to communicate effectively on an advisory panel’ (Consumers United for Evidence , 2018)

Resource: Learning for Involvement (NIHR)

Network: NHS Public Engagement Practitioners' Network (NHS England)

Training: Public Involvement Training (Imperial College London)

Article: Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme (2017)

WORKING TOGETHER

Guidance: Co-producing a Research Project (NIHR, 2021)

Guidance: Considerations for planning, pages 12, 13, and 14, NIHR Research Design Service Patient and Public Involvement Handbook (NIHR Research Design Service, 2018)

Resource: Co-production in action: number one (NIHR, 2021)

Resource: Co-production in action: number two (NIHR, 2019)

Resource: Co-production in action: number three (NIHR, 2021)

Resource: 4Pi National Involvement Standards (National Survivor User Network)

Example: The Consumer’s Role in Cochrane and associated leaflet (Cochrane Consumer Network)

COMMUNICATIONS

Guidance and resources: Writing plain English summaries, NIHR (2021)

Guidance: Accessible Information Standard, NHS England (2017)

Guidance: The 7 Graphic design principles of public health infographic design (Improve Academy)

Guidance: Do’s and don’ts for approaching accessibility from a design perspective, Home Office Digital (2016)

Guidance: Public engagement: a practical guide (involving the public in communicating research findings), Sense about Science (2017)

Example: Writing a Communications Strategy, Presentation, Victoria Pearson, Senior Communications Planning Manager, Oxford University (2016)

Guidance: Feedback from researchers to Patient and Public Involvement contributors, Collaboration for Leadership in Applied Research and Care, East of England (2018)

GOVERNANCE

Example: Patient and Public Involvement and Engagement (PPIE) Strategy 2018-2022, Manchester Biomedical Research Centre and NIHR Manchester Clinical Research Facility

Example: Patient and Public Participation Policy, NHS England (2017) 

Example: NIHR Committee Role Description (NIHR, 2020)

Example: Public Co-Chair Role Description and Person Specification (NIHR, 2021)

Guidance: Governance for Participation, NHS England (2015) 

IMPACT

Guidance: Guidance on evaluating public involvement in research (People in Health West England, 2018)

Guidance: Capturing the impact of involvement in research: Some things to consider (Shared Learning Group on Involvement)

Example: Framework for mapping and evaluating patient and public involvement experiences in research  (Open Access, 2017)

Example: Impact Report that includes patient stories  (Cancer Research UK, 2017) 

Resource: Public Impact Assessment Framework (2014)  

Reporting checklist: GRIPP2 to improve reporting of patient and public involvement in research checklists (2017) 

Toolkit:  Public Involvement in Research Impact Toolkit (PIRIT) (2023)