Public involvement in research refers to the public being involved in the research process so that the work (or elements of it) is done with or by the public and not “to”, “about” or “for” them. Public involvement does not refer to taking part in research as a research participant or as a research subject.
The HRA has set out its commitment to improving the level and quality of public involvement in research in the HRA Public Involvement Strategy [internal link].
Note: when we refer to the “public” in this page we are including patients, potential patients or members of the public, including those with known genetic dispositions, carers and people who use health and social care services as well as people from organisations that represent the people that use services.
Benefits of public involvement in research:
The involvement of the public in research may lead to the following benefits:
- Making research more relevant – so that the research results are more likely to be useful and of benefit patients and the public
- Helping to define what is acceptable to research participants – particularly in controversial or sensitive research
- Improving the process of informed consent – making it easier for prospective participants to understand the research and potential risks.
- Improving the experience of participating in research – checking that the practical arrangements for participants are appropriate and a respectful use of their time
- Improving the communication of findings to research participants and the wider public – providing information on the progress of the research as well as the final results.
Examples of public involvement:
Public involvement in research may take a variety of forms, including involving the public in:
- Identifying and prioritising research topics
- Being part of research advisory groups and steering groups
- Identifying outcome measures, which are meaningful and relevant to patients
- Commenting on or developing participant information sheets and other documents which are used to communicate with research participants and potential research participants
- Commenting on the feasibility of the research design, including the burden placed on research participants and the levels of risk/distress that they might be exposed to
- Undertaking research projects
- Commenting on, or helping to develop, end of study information sheets for research participants and lay summaries of research findings.
Key documents, further reading and links:
HRA/INVOLVE joint publications:
- Impact of public involvement on the ethical aspects of research [pdf; May 2016] [link to document] – evidences how public involvement can help to make research more ethical and produce better outcomes
- Public involvement in research and research ethics committee review [pdf; May 2016] [link to document] – offers guidance on public involvement within ethical review
- HRA website patient and public webpages [internal link]
- INVOLVE website [external link]
- HRA guidance on consent and participant information sheets [internal link]
- People in Research website [external link] – a website for the public to search for opportunities to be involved in research and for researchers to advertise opportunities for the public to be involved in their research.
[Page last updated 23 May 2016]