This jargon buster or glossary of words contains the definitions of some of the terms commonly used in public involvement in research. It is not a complete list of all the words you might come across. The definitions were developed for INVOLVE by TwoCan Associates working in consultation with a panel of researchers and a panel of people who use services.
The jargon buster can be searched by clicking on one of the letters below or browsing all terms.
A participant is someone who takes part in a research project. Sometimes research participants are referred to as research ‘subjects’.
This is a type of research where researchers and people who use services or carers are partners in a research project. The research addresses an issue of importance to service users or carers, who are involved in the design and conduct of the research, and the way the findings are made available. The aim of the research is to improve people’s lives. This isn’t a research method – it’s an approach to research, a philosophy.
Patient information leaflet / patient information sheet
Researchers must provide a patient information leaflet leaflet to everyone they invite to take part in a research study, to ensure people can make an informed decision about this. The leaflet 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, for example 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.
Peer interviewing is where people are interviewed by others who have a similar experience to them – their peers. For example, in a project to find out about children’s experiences of after school care, children with experience of using after school care may act as peer interviewers, asking other children about their experience. Some researchers believe that this kind of interviewing enables people to talk more freely about their experience.
Peer review / refereeing
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.
A placebo is a fake or dummy treatment that is designed to be harmless and to have no effect. It allows researchers to test for the ‘placebo effect’. The placebo effect is a psychological response where people feel better because they have received a treatment, and not because the treatment has a specific effect on their condition. By comparing people’s responses to the placebo and to the treatment being tested, researchers can tell whether the treatment is having any real benefit.
Protocol / research protocol
A protocol is the plan for a piece of research. It usually research protocol includes information about:
• what question the research is asking and its importance/relevance
• the background and context of the research, including what other research has been done before
• how many people will be involved
• who can take part
• the research method
• what will happen to the results and how they will be publicised.
A protocol describes in great detail what the researchers will do during the research. Usually, it cannot be changed without going back to a research ethics committee for approval.
Public health research
Public health is concerned with promoting good health, preventing disease and protecting people from hazards, rather than treating illnesses. It covers topics like the control of infectious diseases, vaccinations, and helping people to adopt healthy lifestyles.
Public health research involves finding out new knowledge (or testing out existing ideas) to do with public health – so it might address questions about:
• the best ways to help people stop smoking
• how Bird Flu spreads.