Public involvement is important, expected and possible in all types of health and social care research.
The UK Policy Framework for Health and Social Care Research sets up responsibilities for public involvement:
Chief Investigators are responsible for making sure that a research project makes effective use of patient, service user and public involvement where appropriate.
Sponsors have overall responsibility for ensuring the research proposals and protocols make appropriate use of patient, service user and public involvement.
Funders are responsible for involving patients, service users and the public where appropriate in funding decisions.
Public involvement should be thought about from the very beginning of your study.
Our best practice principles for public involvement
We’ve developed 4 best practice principles for public involvement, which you should follow when planning research. They are:
- Involve the right people
- Involve enough people
- Involve those people enough
- Describe how it helps
Find out more about each principle and how to meet these principles.
Contents
- Public involvement in research - where to start
- Is HRA ethical approval required to involve the public in research?
- Public involvement when developing participant information
- I’m submitting research for ethics review, what do I do?
- I’m submitting a CAG application, what do I do?
- Is there a legal requirement to involve the public?
- Should I offer payment for public involvement?
- How do I know if my public involvement is effective?
Public involvement in research - where to start
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:
- 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
Public involvement can benefit different types of health and social care research. Choosing the right type of involvement will depend on the research itself. You can find a range of resources and training for public involvement in research in NIHR’s Learning for Involvement.
Is HRA ethical approval required to involve the public in research?
No, you do not need to apply to the HRA for ethical approval to involve the public in the planning or the design stage of research, even when those people are NHS patients.
Public involvement when developing participant information in studies
We require research teams to involve members of the public in designing participant facing materials .
Our quality standards and design and review principles set out our expectations. RECs will assess your participant information against the design and review principles.
Participant information developed without public involvement appropriate to the study and study population will not normally receive a favourable opinion from an NHS REC.
If the public involvement described in the Integrated Research Application System (IRAS) application does not meet our best practice principles for public involvement, we will normally request further involvement before a study is given a favourable opinion.
I’m submitting an application for Research Ethics Committee review, what do I do?
We expect applicants for Research Ethics Committee (REC) review to involve relevant people well in the design, conduct and dissemination of their studies.
RECs consider whether applications for for ethics review have involved the the public in how the research is designed, carried out and shared.
Read our public involvement checklist to find out what you need to submit to a REC.
This page also includes frequently asked questions (FAQs) about public involvement information for ethics reviews.
If you are unsure which reviews your project needs, please use our tool.
I’m submitting a Confidentiality Advisory Group application, what do I do?
The Confidentiality Advisory Group (CAG) expects to see evidence of public involvement that specifically tests the public acceptability of using confidential patient information without consent for the purpose of your application.
Visit the CAG guidance page for more information.
Is there a legal requirement to carry out public involvement as part of my research?
There is not currently a legal requirement to carry out public involvement. However, public involvement is a crucial part of research and our RECs will expect to see evidence of public involvement.
Should I offer payment for public involvement?
It is good practice for organisations to offer payment for involvement in research. Paying people for their involvement in research helps to support more equal partnerships between researchers and members of the public. It helps to support the inclusion of people who might not otherwise be able to get involved, whether for financial or other reasons relating to access. The NIHR have produced a guidance document for researchers and professionals on payment for involvement.
How do I know if my public involvement is effective?
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.
You can find a range of impact assessment tools from the Learning for Involvement website.
Further information or advice
If your question isn’t answered here, you may wish to get in touch with our team so that we can direct you to the correct guidance by emailing Public.Involvement@hra.nhs.uk
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