What is public involvement in research?
Public involvement in research means research that is done ‘with’ or ‘by’ the public, not 'to', 'for' or 'about' them. It means that patients or other people with relevant experience contribute to how research is designed, conducted and disseminated.
It does not refer to research participants taking part in a study.
Public involvement is also different from public engagement, which is when information and knowledge about research is shared with the public. Read about our Transparency Agenda for further information about why this is important.
We are committed to supporting and encouraging researchers to involve patients and the public in their work at the earliest opportunity.
Research teams which involve patients and the public run better studies because:
- they are more relevant to participants
- they are designed in a way which is acceptable to participants
- they have participant information which is understandable to participants
- they provide a better experience of research
- they have better communication of results to participants at the end of the study.
Four principles for meaningful involvement of patients and the public in health and social care research:
- Principle 1: Involve the right people
- Principle 2: Involve enough people
- Principle 3: Involve those people enough
- Principle 4: Describe how it helps
Why does it matter?
The Health Research Authority protects and promotes the interests of patients and the public in health and social care research. Involving people with relevant lived experience in the design and development of research can improve its quality and relevance.
The Health Research Authority and the National Institute of Health and Care Research have published a briefing on the evidence for how public involvement can have an impact on research. It explains how public involvement in research, especially at the design stage, can support the ethical review process by helping to:
- make research more relevant – so that the research results are more likely to benefit patients and the public
- define what is likely to be acceptable to participants – particularly in controversial or sensitive research
- improve the informed consent process – making it easier for prospective participants to understand the research and its potential risks and benefits
- improve the experience of participating in research – checking that the practical arrangements for participants are appropriate and a respectful use of people’s time
- improve the communication of findings to participants and the wider public – providing information on the progress of the research as well as the final results.
Good public involvement is worth investing in. It can lead to the development of higher quality research and make it easier to recruit and retain participants. This is because the research is more likely to be designed and conducted in a way which is acceptable to them. Involving the right people well can help to produce research which respects the rights, safety, dignity and wellbeing of participants, which in turn may help to address issues which the Research Ethics Committees (RECs) consider in their reviews. This can contribute positively to the ethical review process, such as by making it less likely that there will be revisions needed to participant information sheets or other documents.
The HRA involves the public in our own work. Please contact our Public Involvement Team at public.involvement@hra.nhs.uk if you would like to find out more.