This section is for researchers looking for information and guidance on how to conduct public involvement in research in line with our best practice principles, and the UK standards for Public Involvement.
The links in this section explain why public involvement is important, how to get started, how to find the right people and how to make sure that the impact of the involvement is evaluated and that the people involved are kept up to date about how their involvement has made an impact.
Contents
- Alternative formats
- Standards and policies
- Getting started
- Training
- Planning your involvement
- How to ensure your involvement is meaningful and inclusive
- Finding people with relevant experience
- Payment for public involvement
- Evaluating Public Involvement
- Preparing for a Research Ethics Committee Meeting
- Case studies
Alternative Formats
If you would like a printable copy of this document with the full URL’s, please contact our public involvement team by email on public.involvement@hra.nhs.uk or call us on 0207 104 8161
Standards and policies
The UK Policy Framework for Health and Social Care describes what researchers’, sponsors’ and funders’ responsibilities are in terms of public involvement
The UK standards for public involvement in research provide benchmarks for effective public involvement and indicators against which improvement can be measured - using them will help you follow our principles for best practice in public involvement
Getting started
Learning for Involvement website developed by the National Institute for Health and Care Research (NIHR) brings public involvement information, resources (such as guidance, websites, videos, articles and blogs) and training together in one place. The content on the website is uploaded by the public involvement community 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!
A guide produced by Versus Arthritis 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.
Training
Getting started with involving people. The NIHR have collected some of the important resources you might want to look at when you are planning how to involve patients, carers and the public. This includes NIHR public involvement guidance, information on how to reimburse people for involvement, and examples of patient and public involvement.
The NIHR starting out guide is for members of the public new to involvement in health and care research wanting to find out more about why and how to get involved.
A course for reviewers of health and social care research. This is an interactive course for new and experienced reviewers of health and social care research, which has been produced by a team of public reviewers and patient and public involvement professionals with the NIHR.
Planning your involvement
The Public Involvement in Research impact Toolkit (PIRIT) is a set of 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
- report impact against the UK Standards for Public Involvement.
Briefing notes for researchers - public involvement in NHS, health and social care research. This NIHR guidance is for researchers new to public involvement in research and just starting to consider how best to involve members of the public in their work. This is comprehensive guidance which covers the following topics:
- Introduction
- What is Public Involvement in Research
- Why involve members of the public in research?
- Why Members of the public get involved in research?
- How to involve members of the public in research
- Who should I involve and how to find people?
- Approaches to public involvement in research
- Ways that people can be involved in different stages of the research cycle
- What to do when things go wrong
How to ensure your involvement is meaningful and inclusive
There are lots of resources and guidance for researchers created by charities and research organisations to support meaningful and inclusive involvement:
- Dementia Enquirers has developed a gold standard for involving people with dementia in the design, planning and delivery of research.
- Research Abilities supports researchers across the UK to discuss their research ideas and plans with a group of people with learning disabilities
- Frameworks developed with Trial Forge aims to help researchers think carefully about which groups should be included in their trial for its results to be widely applicable, and what challenges there may be to making this possible.
- The GenerationR Alliance consists of Young People’s Advisory Groups around the UK which collaborate with researchers to involve children, young people, and families throughout the research process. Their resources also include a guide to how to set up a Young People’s Advisory Group
- Voices of Young People in Care in collaboration with Queen’s University Belfast have created a guide to co-producing peer research with young people
- AbilityNet has created a webinar which focuses on the key things to think about to ensure that disabled people can access and participate in online meetings.
- The UK Research and Innovation (UKRI) ‘good research resource hub’ has great examples of good practice for researchers
- Patient Focused Medicines Development (PFMD) has produced a practical how-to guides for patient engagement (and involvement)
- The Involvement in laboratory based research website is specifically aimed at researchers who work mainly in a laboratory, with very little or no contact with people affected by the condition they are studying. It offers practical guidance about how to involve patients and the public in laboratory based research. It has been co-produced by staff, patients, public and researchers from Parkinsons UK, Alzheimer’s Society and the NIHR UCL Biomedical Research Centre,
- The NIHR Newcastle Biomedical Research Centre has developed a patient and public involvement and engagement planner which is developed in alignment with the UK Standards for Public Involvement
Finding people with relevant experience
The People in Research website allows patients and members of the public to search for opportunities to be involved in research, and for researchers to advertise opportunities for involvement.
In Wales, researchers can request public involvement support through the Health and Care Research Wales public involvement team.
The NHS Scotland Chief Scientist Office Patient and Public Involvement Guidance and Training webpage contains information for patients and professionals on how to get the most out of working with the public, as well as links to training courses for those looking to get involved in running PPI groups.
Within Northern Ireland, organisations have a statutory duty to involve service users, carers and the public in the commissioning, planning and delivery of all Health and Social Care. They provide training and support to researchers who want to know more about public involvement in research and have also produced an Involvement Resource Library for researchers.
Shaping Our Lives is a non-profit organisation specialising in inclusive involvement, ensuring the voices of those facing the biggest barriers are heard. They work with people and organisations to make sure people with lived experience are listened to.
The NIHR Patient Engagement in Clinical Development Service helps life science companies to connect and collaborate with patients and the public to design participant-friendly clinical trials
Payment for public involvement
We’ve created a payment for public involvement guide for organisations on employment status and tax. The guide provides a clear framework for organisations to develop simple and timely payment policies. It includes guidance on employment status, tax and the impact on welfare benefits. It was produced jointly with the NIHR, and Health and Care Research Wales for organisations that pay public contributors as part of their involvement in research.
We’ve also published a lay version of this employment and tax guidance, and an easy read version is available on the Learning for Involvement website
For members of the public who get involved in the work of the HRA we’ve created a policy for payments arising from the involvement of the public in our work.
You can also find further support from the following organisations:
- Health and Care Research Wales, Public Involvement Guidance on payment. specific to researchers in Wales
- Department of Health, Northern Ireland – Reimbursement of Expenses for Service Users, Carers and Laypeople guidance specific to researchers in Northern Ireland
- Scottish Government guidance specific to Scotland on paying participant expenses and time
- The NIHR has produced guidance for members of the public considering involvement in research. This guide is for patients, carers and members of the public thinking about getting actively involved in research and are being offered expenses and/ or payment for your involvement. It offers answers to some frequently asked questions and suggests where to get advice about particular circumstances
- NIHR have produced some guidance and a letter addressed to Jobcentre Plus staff for people who are in receipt of welfare benefits and are considering paid involvement. Please contact our Public Involvement team on public.involvement@hra.nhs.uk if this might apply to your involvement with us
Evaluating Public Involvement
The Public Involvement in Research impact Toolkit (PIRIT) is a set of 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
- report impact against the UK Standards for Public Involvement.
4Pi is a simple framework on which to base standards for good practice, and to monitor and evaluate involvement. The framework builds on the work on many people: mental health service users and carers and others who have lived and breathed involvement and shared their experiences in various ways, both written and unwritten.
Guidance for Reporting Involvement of Patients and the Public (GRIPP) describes two versions of guidance, a short version which can be used when reporting public involvement in any study, and a long version to use when the study is mainly about public involvement in research. The aim in developing this guidance is to promote good quality reporting of public involvement, to inform good practice and create effective public involvement.
Preparing an application for a Research Ethics Committee Meeting
We've produced a checklist which talks about the ways you can involve the public in your research. Research Ethics Committees (RECs) find it helpful if one of the people who worked with you in designing the study can attend the meeting with you to help explain to the REC how and why the study design is likely to be important, relevant and acceptable to the potential participants.
Please ensure that you show any patients or members of the public who attend with you the guidance for attending a REC meeting and that you give them the opportunity to discuss with you any questions they may have about their attendance.
Case studies
The following sites have links to detailed examples of different types of research and the public involvement which benefited it:
- The UK Standards for Public Involvement website has a library of examples of good practice
- COUCH Health is a global agency, with the mission to make clinical research more diverse, inclusive, and accessible. Their website has a library of involvement case studies from across the world.
- The NIHR Oxford Biomedical Research Centre has a selection of case studies where patient, carer and public involvement have improved and informed research.
- Parkinson's UK guide for researchers on patient and public involvement is a general guide that includes good case studies all based on the involvement of people affected by Parkinson’s disease.