Published: 7 December 2022

To find out more about public involvement in research, click here.

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 your charity’s research and governance. The resources have been split into sections for ease of navigation:

  1. Starting public involvement
  2. Standards for involvement
  3. Public involvement training
  4. Reaching out
  5. Types of involvement
  6. Payment for public involvement
  7. Public involvement in basic research and industry
  8. Diverse involvement
  9. Impact and evaluation

If you have a query, or would like to recommend a resource or provide a suggestion for how we can improve the accessibility and usability of this page, please contact our policy officer, Simon.


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.

Guidance for researchers

  • 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.

Guidance for lay people

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.

Standards for involvement

Standard 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 staff

Training for lay people


Reaching out

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

Recruiting for public involvement

Establishing a public involvement

  • 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.

Ending a public involvement relationship

  • 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.

Resources

  • VOICE Network: This platform was set up by Newcastle University to capture the public’s experience, ideas, opinions and expectations about research and innovation. It now has over 10,000 members of a range of ages and backgrounds. Researchers interested in using the VOICE platform to inform their research can enquire via the following link.

  • 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.


Types of involvement

Guidance and resources on specific types of involvement activity.

Co-application

Co-production

  • SCIE – Barriers to co-production: A webpage created by the Social Care Institute for Excellence summarising the output of a webinar exploring potential barriers to the co-production process. It is intended for the involvement of the public in provision of social care services, but can also be applied to co-production in research.

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.

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.

Payment guidance for researchers

  • Co:Create – Paying participants in co-production: A guide to payment specifically for people involved in co-production of research. It provides summaries of commonly-used guidelines on payment, FAQs, and a selection of alternatives.
  • 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.

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


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.

Basic research

Public in industry partnerships

 


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

Ethnic minorities in public involvement

Young people in public involvement

  • 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

  • NPC – Why impact matters in involvement: Produced by NPC, a social sector consultancy and thinktank, this paper explains what user involvement aims to achieve, and better efforts to evidence the difference it can make. It’s aimed at any charities or funders that want to improve their public involvement.

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.