Guidance and tools for public involvement

Published: 7 December 2022

This page contains links to publicly available guidance documents, toolkits, training and other resources to help improve the quality, inclusivity, accessibility and impact of patient and public involvement in funding research and charity governance. The resources have been split into sections for ease of navigation:

Starting public involvement
Standards for involvement
Public involvement training
Reaching out
Types of involvement
Payment for public involvement
Public involvement in basic research and industry
Diverse involvement
Impact and evaluation

If you have a query, or would like to recommend a resource, please contact our policy team at [email protected].

Starting public involvement

A set of general guides and toolkits aimed at various stakeholders within public involvement, which introduce the basic concepts; what, who, why, and how.

NIHR – Learning For Involvement: Learning for Involvement is a hub for public involvement information, training and resources for researchers, lay people and organisations. The website's content includes guidance, videos, articles and blogs, and is suitable for people with different levels of experience in public involvement, but whether you’re an expert or completely new to the topic, you should be able to find something that can help you develop your skills!
PFMD - Patient Engagement Management Suite (PEM): A set of tools developed by Patient Focused Medicines Development (PFMD) in partnership with patients to plan, assess and execute any patient engagement initiative.

Guidance for researchers

Cancer Research – UK Patient Involvement Toolkit for Researchers: A comprehensive public involvement toolkit designed to help researchers plan and carry out involvement activities, step-by-step from setting a research question through to disseminating outputs.

Parkinson’s UK – PPI Guidance for Researchers: An introduction to public involvement with information and guidance for how to involve lay people in both basic science and clinical research.

Versus Arthritis – Patient and Public Involvement: A researcher’s guide: A guide produced by Versus Arthritis (formerly Arthritis Research UK) to provide researchers with an introduction on why and how to involve the public in research. The guide also has separate chapters for both basic and clinical research, as well as general advice, further resources, and case study examples.

Imperial College London – A Rough Guide to Public Involvement: A guidance document produced by Imperial College London's Patient Experience Research Centre. It covers why and how you can start public involvement; who to involve; choosing an involvement approach; and how to support, evaluate and report on involvement.

NIHR – Public involvement in NHS, health and social care research: A series of briefing notes from NIHR suitable for both researchers who are new to public involvement, and experienced researchers who want to refresh their skills and knowledge. Each section also contains links to further reading and more in-depth guidance.

Guidance for lay people

NIHR – How and why to get involved in research: A concise guide to public involvement for lay people who may be considering getting involved in research, with an eye-catching accompanying infographic.

NIHR – How to get involved in NHS, public health and social care research: A more detailed introductory guide to public involvement, which includes explanations of various involvement activities, available training and support, what to expect at a first meeting, and case studies of involvement from lay contributors.

Guidance for charities

CRIG and HRCI – Developing a PPI strategy: Guidance from the Charities Research Involvement Group and Health Research Charities Ireland on how to develop an organisational strategy for using public involvement in research covering: a vision for public involvement; defining it; who to involve and how; what activities to conduct; supporting, rewarding and respecting contributors; measuring impact; and budgeting.
Polly Kerr, Nuffield Department of Primary Care - Public Involvement Skills Competency Framework: A competencies framework that outlines the skills and capabilities needed for roles in public involvement. The framework aims to recognise the PPI workforce career and suggest opportunities for development and progression. The pdf includes a colour version, as well as a black and white version of the framework.

AMRC – Patient voice in medical and healthcare research: This briefing outlines how the patient voice can be used across the research lifecycle, sharing examples from AMRC charities.

AMRC – The value of the patient voice: This briefing explains what is meant by patient voice and why and how charities use it in their research.

AMRC – Patient voice and regulators: This briefing explores the work of regulators in incorporating patient voice into formal structures and processes.

Standards for involvement

National standards to aim for when involving patients and the public in research.

UK Standards for Public Involvement: A set of standards developed by a UK-wide partnership of professional and public representatives, describing what good public involvement looks like and encouraging approaches and behaviours that are the hallmark of good public involvement.

4Pi Standards Framework: A framework for the involvement of service users and carers to deliver standards for good practice, and to monitor and evaluate involvement. The framework establishes some basic principles to encourage people to think of involvement in terms of principles, purpose, presence, process and impact (4Pi).

Public involvement training

Training resources for different public involvement stakeholders.

Training for anyone

Imperial College London – Public Involvement in Research (Coursera): A free module on public involvement in research, suitable for any background including patients, members of the public, healthcare professionals and researchers. The module is 17 hours and part of a larger qualification on participatory methods in health research. The module covers public involvement vs co-production; involvement and co-production at each stage of the research cycle; and evaluating involvement.

Training for lay people

Crohn’s and Colitis UK – Training for involvement in health data research: A beginners guide to public involvement. Module 2 is particularly useful for projects using patient data. The training covers an intro to public involvement; data and privacy; case studies, practice scenarios and practical advice. A small number of the slides are specific to Crohn's and Colitis UK.

NIHR – An interactive course for reviewers of health and social care research: An interactive course for new and experienced reviewers of health and social care research, produced by a team of public reviewers and public involvement professionals with the National Institute for Health and Care Research.

Reaching out

Guidance relating to how to start, maintain, support and end the relationship with your patient and public contributors.

HRCI – Making a start: A toolkit for research charities: A toolkit from Health Research Charities Ireland to help charities start pubic involvement in their research. It introduces the basic concepts of public involvement, benefits, who to engage with and how (including the do's and don'ts of building a long-term relationship with contributors), how to run a public involvement workshop, and next steps.
HCRW - Guidance on ineligible public involvement in research: Guidance from Health and Care Research Wales on ineligible public involvement, when public contributors' lived experience, knowledge or skills do not match the requirements for the involvement activity at hand. This document is for research teams, public involvement leads and public contributors who have encountered ineligible involvement, and gives examples of both how it may be spotted and how it may be addressed.
CRIG – Stopping Involvement: Shared learning from the Charities Research Involvement Group on how to approach ending a public involvement relationship in a sensitive manner covering ending a project, unacceptable behaviour, and safeguarding issues.

Types of involvement

Guidance and resources on specific types of involvement activity.

Co-application

NHS R&D Forum, HRA and INVOLVE – Public Co-Applicants in Research: guidance on roles and responsibilities: Guidance for researchers wanting to include public co-applicants in a study, public contributors wanting to become a co-applicant, research staff who coordinate public involvement activities or advise on funding applications, and those working in or with research organisations to review or process research applications.

NIHR – Inclusion of public co-applicants: An animation produced by the NIHR Research Design Service to help build a shared understanding of the role of lay co-applicants in research.

Co-production

INVOLVE – Guidance on co-producing a research project: Guidance from the now-disbanded NIHR INVOLVE group explaining the key principles and features of co-production in research, suggesting ways to realise these, and outlining challenges which may need to be addressed.

Resources

Engage 2020 – Action Catalogue: An online tool intended to help researchers wanting to conduct inclusive research and find the best method for their project needs. The catalogue is easily searchable with 57 different methods of involvement and engagement, and 32 different filter criteria which can each be weighted by importance.
PEDRI - Involvement in Data Science Hub: The Public Engagement in Data Research Initiative (PEDRI) is a sector-wide partnership of organisations working with data and statistics. Their hub includes a wide range of tools, guidance and information to support meaningful public involvement and engagement with data and statistics.

Payment for public involvement

Guidance for researchers on who and how to pay for involvement in research; for lay people on what to expect and how to navigate obstacles such as the benefits system; and guidance specific to the devolved nations of the UK.

AMRC has summarised current best practice and guidance in payment for involvement here.

Payment guidance for researchers

NIHR – Involvement Cost Calculator: A calculator produced by NIHR INVOLVE to help researchers work out what the total cost of public involvement in a project is, including expenses, the involvement activity, involvement staffing and other costs.

Payment guidance for funding organisations

NIHR – Payment for Public Involvement in Health and Care Research: This guidance from the NIHR Centre for Engagement and Dissemination is aimed at organisations and research staff that pay public contributors for involvement in research they fund. HMRC, HR and Finance professionals, public involvement leads, policy leads and members of the public with experience in this area were consulted during its development.
NIHR - Payment for public involvement in health and care research: a guide for organisations on employment status and tax: This guidance aims to give direction to those managing and administering payment arrangements to navigate employment status and tax regulations in an appropriate way, providing information and links to appropriate HMRC guidance in order to inform decisions on payments to public contributors. It was co-developed by NIHR, HRA, Health and Care Research Wales and a public contributor from Wales. The guidance is aimed at funding organisations engaging in public involvement activities, but may also be useful to researchers and research staff.

Payment guidance for lay people

NIHR – Payment guidance for members of the public considering involvement in research: This guide is for patients, carers and members of the public thinking about getting involved in research. It includes information on what activities are commonly reimbursed, in what forms and at what rates, as well as implications and considerations for those who receive state benefits or a pension, and questions they may wish to ask the organisation involving them in research.

Devolved guidance

Health Research Wales – Public involvement guidance on payment: Guidance specific to researchers in Wales on what activities people getting involved in research should be reimbursed or paid for.

Department of Health, Northern Ireland – Reimbursement of Expenses for Service Users, Carers and Laypeople: Guidance specific to researchers in Northern Ireland on what activities people getting involved in research should be reimbursed or paid for.

Public involvement in basic research and industry

Guidance on involving patients and the public in basic research, translational research, or research in partnership with the pharmaceutical industry.

Parkinson’s UK, Alzheimer’s Society and NIHR – A practical guide to patient and public involvement in lab-based research: A comprehensive guide to involving lay people in lab-based (basic) research, from planning through to follow-up. It includes case studies, useful resources and further reading.
CRIG and HRCI – Supporting PPI in industry-led research: guidance for charities: Guidance produced jointly by the Charities Research Involvement Group and Health Research Charities Ireland for charities who fund research, on how to support public involvement in industry-led research. It covers laying foundations, first steps, planning involvement activity, and follow-up and feedback.
AMRC – Patient voice and industry: This briefing highlights the opportunity for charities and industry to collaborate to embed patient voice in research and development.

Diverse involvement

Guidance on how to make your pool of involved people more diverse, with specific information on involving ethnic minorities and young people.

Diversifying public involvement

CRIG and Egality – Talking about involvement in research: Shared learning from the Charities Research Involvement Group and community engagement agency Egality looking at how to make research involvement more accessible and inclusive.

NIHR Research Design Service – EDI Toolkit: Public Involvement: This toolkit was developed by NIHR in collaboration with public contributors from the NIHR Research Design Service, with the aim of helping researchers make public involvement in their studies as diverse, inclusive, supportive and empowering as possible.

Ethnic minorities in public involvement

East Midlands Centre for BME Health – How to engage seldom-heard groups

Young people in public involvement

Roundhouse and Arts Council England – Guided by Young Voices: A guide on how to include young people on an organisation's board and in its governance processes.

NIHR – Involving children and young people as advisors in research: This guidance provides a short overview of the key issues on involving children and young people in NHS, public health and social care research, developed, reviewed and updated with contribution from several Young People Advisory Groups.

Barnardo’s – Young Researchers Guidance: This provides guidance and accompanying tools to use when supporting children and young people from a diverse range of backgrounds to be young researchers.
Generation R Alliance and eYPAGnet – Toolkit on involving young people in research: A guide to how to set up a Young People’s Advisory Group, developed in partnership by the UK and European YPAG networks. It covers understanding what public involvement is and why it is important; how to get started setting up a YPAG; how to deliver a YPAG meeting; and evaluation and the potential impact of a YPAG for an organisation.

Evaluation and feedback

Resources to help you evaluate the impact of involvement on your work and provide feedback to the people who were involved.

Measuring impact

CRIG – Things to consider if you are capturing the impact of involvement in research: A document produced by the Charities Research Involvement Group with a series of suggestions of things to consider when measuring the impact of PPI.
Marie Curie Research Centre - Public Involvement in Research Impact Toolkit (PIRIT): 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.
McMaster University Faculty of Health Sciences - Public and Patient Engagement Evaluation Tool (PPEET): 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).
Arthritis Research Canada - Patient Engagement in Research Scale (PEIRS): 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.
NCCPE - Logic Model Template: A template produced by the National Coordinating Centre for Public Engagement to help you create a logic model for involvement activities.

Providing feedback

CRIPACC – Feedback from Researchers to PPI Contributors: Guidance from the Centre for Research in Public Health and Community Care at the University of Hertfordshire, providing practical tips for researchers on the who, why, when, what and how of improving feedback to public involvement contributors.