Standards for Public Involvement:
It is recommended that all research incorporates the 6 UK Standards for Public Involvement as a core framework. Designed to improve quality of public involvement work, the standards describe what good public involvement looks like and encourage approaches and behaviours such as flexibility, sharing and learning and respect for each other.
NIHR guidance
NIHR stands for the National Institute for Health and Care Research and is the health and social care research arm of Britain. They fund, enable, and deliver research to improve health and wellbeing.
NIHR Guidance to involving public members (including guidance on reimbursing public members)
Additional Resources
For communities and public members
Find opportunities to get involved in research: View Opportunities – People in Research
Summary of types of health and care research from the NHS: What is health and care research – Be Part of Research
‘A research handbook for patient and public involvement researchers’ written and produced by fellow PPIE members.
Detailed advice on receiving PPIE payments: Payment
Roles and Responsibilities of being a co-applicant: co-applicant roles and responsibilities
Training for reviewing health and social care research: An interactive course for new and experienced patient public reviewers of health and social care research
For researchers
Local resources for KCL staff
Within King’s College London, our Impact and Engagement team also has various resources for involvement and engagement: Resources – KERN
If you are a KCL Staff member, you can use the following link to access internal resources on topics such as reimbursement processes: KERN – Home
For more information about whether your PPIE or research activity will need ethical approval: Patient and Public Involvement (PPI) and Ethical Clearance
Find Local Support at KCL: Local advice and support | King’s College London
Collections of Resources
- NIHR Learning for Involvement
- Collection of Involvement Resources (ARC South London)
- Co-production Collective
PPIE Funding
- KHP Patient and Public Involvement/Engagement Pre-grant Support Fund
- King’s/MRC Public Partnership Fund
- NIHR Research Support Service
- Academy of Medical Sciences – Starter grant funding
Support for developing your PPIE plans
- Health Research Authority payment policies and guidance
- NIHR Academy
- NIHR ARC SL Public Research Panel (meets monthly)
- NCCPE
Payment Guidance
EDI
- NIHR Equality, Diversity and Inclusion – Research inclusion | NIHR
- NIHR ARC East Midlands Increasing Participation of Black, Asian and Minority Ethnic Groups in Health and Social Care Research – Increasing Participation
- NIHR is also committed to involving communities from low- and middle-income countries – Community engagement and involvement | NIHR
- NIHR INCLUDE Project Resources – Guidance from INCLUDE project | NIHR
- The INCLUDE Ethnicity Framework
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review | Research Involvement and Engagement | Springer Nature Link
Impact
- Patient and Public Involvement Impact Log (NIHR ARC West)
- Researcher Feedback Form (NIHR ARC East of England)
- Guide to Disseminating Research framework [GuiDiR] (NIHR ARC East of England)
- Guidance for Reporting Involvement of Patients and the Public in Research [GRIPP2] (EQUATOR Network)
- Evaluation Framework for Patient and Public Engagement in Research (CEPPP)
- Public Involvement Impact Assessment Framework [PiiAF] (PiiAF Study Group)
- Logic Model Template (National Coordinating Centre for Public Engagement) Support to create a logic model for involvement activities
- Public Involvement in Research Impact Toolkit [PIRIT] (Marie Curie Research Centre and the Wales Cancer Research Centre) A resource developed by Marie Curie Research Centre at Cardiff University. PIRIT is a set of pragmatic tools which aim to support researchers working with public contributors to plan and integrate public involvement in research, track public contributions and the difference they make to the research, and report impact against the UK Standards for Public Involvement. The toolkit comprises a Planning Tool and a Tracking Tool which can be used separately or together, and in conjunction with other published public involvement assessment frameworks and reporting tools.
- 4Pi-based questionnaire to evaluate their experiences of involvement (KCL)
- CRIG – Things to consider if you are capturing the impact of involvement in research (Charities Research Involvement Group) Includes a series of suggestions of things to consider when measuring the impact of PPI
- Public and Patient Engagement Evaluation Tool (PPEET) (McMaster University Faculty of Health Sciences) A series of three questionnaires to evaluate public and patient engagement. The tool was developed primarily for use within health systems but has also been used to evaluate engagement within other contexts (e.g., health research).
- Patient Engagement in Research Scale (PEIRS) (Arthritis Research Canada) This tool measures the degree of meaningful patient engagement in research projects from a patient perspective. It is designed to be completed by patients and family caregivers who work together with researchers on research projects.
- Russell, J., Fudge, N. & Greenhalgh, T. The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?. Res Involv Engagem 6, 63 (2020). https://doi.org/10.1186/s40900-020-00239-w
- Staniszewska, S., Brett, J., Simera, I. et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem 3, 13 (2017). https://doi.org/10.1186/s40900-017-0062-2
Case Studies
Reaching out to the public
Other than this website, you can also share opportunities for public members to get involved in research through the following website: People in Research
Public members sitting around a table at a poetry workshop ‘Playing with Words’.
Photo Credits: Joseph Lockley