This glossary provides descriptions of key Public Involvement terms.
Acknowledgement – Several of these definitions are taken from the following sources:
Advisory Group (Steering Group)
Many research projects have an advisory group (or steering group). The group helps to develop, support, advise and monitor the project. The group often includes people who use services, carers, researchers and other health and social care professionals, who can provide relevant advice.
Commissioning Board/Commissioning Panel
A Commissioning Board is a group of people who oversee the commissioning process. It is made up of research funders, researchers, health and/or social care professionals and often includes people who use services and carers.
A focus group is a small group of people brought together to talk. The purpose is to listen and gather information. It is a good way to find out how people feel or think about an issue, or to come up with possible solutions to problems.
Researchers must provide a patient information sheet to everyone they invite to take part in a research study, to ensure people can make an informed decision about this. The sheet explains what taking part will involve and should include details about:
- Why the research is being done, how long it will last, and what methods will be used.
- The possible risks and benefits.
- What taking part will practically involve e.g. extra visits to a hospital or a researcher coming to interview someone at home.
- What interventions are being tested, or what topics an interview will cover.
- How the researchers will keep participants information confidential.
- What compensation is available to people if they are harmed as a result of taking part in the research.
- Who to contact for further information.
- How the results will be shared with others.
In research, an interview is a conversation between two or more people, where a researcher asks questions to obtain information from the person (or people) being interviewed. Interviews can be carried out in person (face-to-face) or over the phone.
Having an active influence on some or all parts of the research process.
Lay (lay person)
The term lay means non-professional. In research, it refers to the people who are neither academic researchers nor health or social care professionals.
Becoming involved through life experience rather than any specialist, professional, academic or practical training. Lay people may include service users, informal carers and family members, patients, clients, citizens (etc) or may represent service users.
Research in which power is shared so that it is carried out with and by lay people rather than on them. This may employ a variety of methods.
Peer reviewing is where a research proposal or a report of research is read and commented on by people with similar interests and expertise to those who wrote the proposal or report. Peer reviewers might be members of the public, researchers, or other professionals. Peer review helps to check the quality of a report or research proposal. Members of the public who act as peer reviewers may choose to comment on:
- Whether the research addresses an important and relevant question.
- The methods used by researchers.
- The quality of public involvement in the research.
Research Ethics Committee
NHS Research Ethics Committees (RECs) have been established throughout the UK for many years with the purpose of safeguarding the rights, dignity and welfare of people participating in research in the NHS. There are currently around 185 NHS RECs in the UK, and they are overseen by The Central Office for Research Ethics Committees (COREC).
The research process involves several stages, from the idea, to planning and doing the research to sharing the research results with others (dissemination). Members of the public can be involved in any and all stages of the research process, from identifying research topics to sharing the results of research at the end.
This is usually an application form or set of papers that researchers have to complete to say what research they want to do and how they want to do it. It will also cover the aim of the research, what the research questions are, who will be involved (both as participants and in carrying out the research), the timescale and the cost.
A research protocol sets out exactly how the research will be done.
Systematic reviews aim to bring together the results of all studies addressing a particular research question that have been carried out around the world. Systematic reviews are used to bring the results of a number of similar trials together, to piece together and assess the quality of all of the evidence. Combining the results from a number of trials may give a clearer picture.
User led research
User led research is where service users are in charge of finding out about things that affect them.
For greater detail, please see: What User Controlled Research means, and what it can do. (This is an easy read summary of the report User Controlled Research: its meaning and potential by Michael Turner and Peter Beresford, 2005.)