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 original definitions were developed for INVOLVE by TwoCan Associates working in consultation with a panel of researchers and a panel of people who use services, and we add to them continually.
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’.
Organisations which refer potential participants to a research team at another organisation, but do not conduct trial related activity themselves. If activities such as consent take place, then the site would not be classed as a PIC.
A document explaining all relevant study information to assist the potential subject in understanding the expectations and requirements of participation in a clinical trial.
Taking part in a research study, for example people being recruited to take part in a clinical trial or another kind of research study, joining in a focus group or completing a questionnaire.
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.
An active partnership between patients and the public and researchers in the research process, rather than the use of people as ‘subjects’ of research.
Patient and public involvement in research is often defined as doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them. This would include, for example, involvement in the choice of research topics, assisting in the design, advising on the research project or in carrying out the research.
Researchers must provide a patient information 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.
Patient/Participant Consent Form
Primary Care Research Network
Primary Care Trust
Product Development Awards
Programme Development Grants
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.
A reviewing process for checking the quality and importance of reports of research. An article submitted for publication in a peer-reviewed journal is reviewed by other experts in the area.
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.
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.
Programme Grants for Applied Research Programme
The science relating to the detection, assessment, understanding and prevention of the adverse effects of medicines.
The phases of a clinical trial can generally be categorised in the following terms:
Further description of each can be found in Table 1 of the ICH E8: General Considerations for Clinical Trials (PDF, 225 KB).
Public Health Research, one of the NETS programmes. The PHR Programme evaluates interventions taking place outside of the NHS that aim to improve public health.