Reviewed: 7 December 2022
We believe public involvement is important to high quality research. A focus on the priorities of patients is one of the vital roles of charities and therefore involvement is fundamental. As a condition of membership, we require all our member charities to support our statement on the importance of involvement in medical research.
Public involvement is an active partnership in which patients and the public meaningfully contribute to and collaborate in all aspects, types, and stages of research. Involvement - where people work with research organisations and are actively involved in research - is different from simply taking part in a research study as a participant.
We use the term ‘the public’ to include patients, services users, carers and loved ones, donors of tissue, cells and data and other interested members of the public. Also included are people with lived experience of one or more health conditions, whether they are current patients or not.
Public involvement is an essential part of health and social care research. As well as adding value to the research, it also benefits the researchers, the funders, the people who get involved, patients and the wider public. It is also a moral imperative that the voice of patients and the public has an impact on the research that will affect them.
Researchers, clinicians and funders may not have first-hand experience of the illness, disease or service that they wish to research. Public involvement representatives can provide researchers and funders with insights into what it’s like to live with a particular illness, what is important to them and what it’s like to use a treatment or service. These insights can inform strategy, funding decisions and research to help make health research more relevant to the needs of patients, service users, carers and loved ones leading to healthcare solutions that better meet their needs.
Public involvement has been shown to improve research quality and impact, for example leading to better design, conduct and dissemination, which can reduce research waste. Other benefits include increased clarity of information, improved participant enrolment and retention, validation of findings and more useful outputs for clinicians and patients. Involving patients and the public can also motivate researchers, bringing enthusiasm and a keenness to see results.
Charities have much to gain from public involvement; it can inform their research strategy and research priority setting, ensure more relevant funding decisions, aid transparency and accountability, promote increased recognition, and support fundraising.
Public contributors also report the involvement being valuable, from contributing to a cause close to their hearts, meeting new people who share their passion to developing or enhancing skills (e.g., public speaking, teamwork and IT), and increasing understanding of research and research processes.