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 made up of research funders, researchers, health and/or social care professionals and often includes people who use services and carers.
Its role is to oversee the research commissioning process which can involve:
- identifying funding for a piece of research
- preparing a research brief
- advertising the research topic
- selecting a shortlist of researchers who apply to undertake the research
- arranging for proposals to be peer reviewed
- making a decision about which researchers are going to be awarded the funding
- agreeing a contract.
A focus group is a research method which generates research data through discussion.
In a focus group a small group of people is brought together to discuss a particular topic. They are typically semi-structured which means that a researcher will be present to guide the discussion and ask questions pertaining to the topic(s) being discussed.
Discussions are normally recorded and then later transcribed for analysis by the researchers.
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 participant’s 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.
The information obtained during the interview is then analysed by the researcher in order to create data which can be subsequently used to inform the research project.
Interviews can be carried out in person (face-to-face) or over the phone.
Involvement in research refers to active involvement between people who use services, carers and researchers, rather than the use of people as participants in research (or as research ‘subjects’). Many people describe involvement as doing research with or by people who use services rather than to, about or for them.
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.
A lay summary is a brief summary of a research project or a research proposal that has been written for members of the public, rather than researchers or professionals.
This is a type of research where researchers and people who use services or carers are partners in a research project; power is shared and the research is carried out with and/or 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.
Perspectives / user perspectives
A user perspective is often what people with experience of using health or social services are asked to bring when they get involved in research. They are asked to provide ideas, comments and suggestions based on the unique insight they have from their knowledge and experience of life with a health condition. They cannot be representative of everyone who uses a particular service, but they can offer their own perspective, and often that of other people.
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. For more info go to the Health Research Authority website.
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.
Service user or user
A service user is someone who uses or has used health and/or social care services because of illness or disability.
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.)