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.
UK Cochrane Centre
UK Cochrane Review Groups
United Kingdom Clinical Research Collaboration
UK Clinical Research Network
UK Clinical Trials Gateway
UK Trade and Investment
For CTIMPs: An adverse reaction, the nature or severity of which is not consistent with the applicable product information (e.g. Investigator’s brochure for an unauthorised investigational product or summary of product characteristics (SmPC) for an authorised product).
An appropriate measure required to be taken in order to protect the subjects of a clinical trial against any immediate hazard to their health or safety.
Please refer to the Urgent Safety Measures station for more information.
User controlled research is research that is actively controlled, directed and managed by service users and their service user organisations. Service users decide on the issues and questions to be looked at, as well as the way the research is designed, planned and written up. The service users will run the research advisory or steering group and may also decide to carry out the research.
Some service users make no distinction between the term user controlled and user led research, others feel that user led research has a different, vaguer meaning.
They see user led research as research which is meant to be led and shaped by service users but is not necessarily controlled by them. Control in user led research in this case will rest with some other group of non-service users who also have an interest in the research, such as the commissioners of the research, the researchers or people who provide services.
A user researcher is someone who uses or has used health and/or social care services because of illness or disability, who is also a researcher. Not all researchers who use health or social care services call themselves user researchers. Calling yourself a user researcher is making a statement about your identity as a service user as well as a researcher.