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.
Experimental Cancer Medicine Centre
Experimental Cancer Medicine Centres
Comparison of the relationship between costs and outcomes of alternative healthcare interventions.
A generic term for the estimate of treatment effect for a study.
The extent to which an intervention produces a beneficial result under ideal conditions. Clinical trials that assess efficacy are sometimes called explanatory trials.
The key standards that people who want to participate in a clinical study must meet or the characteristics that they must have. These include inclusion criteria and exclusion criteria. For example, a study might only accept participants who are above or below certain ages.
The European Medicines Agency: A body of the European Union which has responsibility for the protection and promotion of public health through the evaluation and supervision of medicines for human use
With emancipatory research, people who use services, rather than professional researchers, have control of the whole research process. They plan and undertake the research, and interpret the findings. The main aim is always to empower people and improve people’s lives. ‘Professional’ researchers may be brought in as advisers or have specified roles within the project.
Efficacy and Mechanism Evaluation, one of the NETS programmes. The EME Programme funds research which aims to establish definitive proof of clinical efficacy. Studies may also include embedded mechanistic studies which will add to our understanding of biological or behavioural mechanisms.
This is the process by which people who use services equip themselves with the knowledge, skills and resources they need to be able to take control over decisions and resources. It often involves people building confidence in their own strengths and abilities. It does not always mean people take control over all decisions or all resources.
In clinical studies where endpoints are complex to assess and/or include subjective components or the study cannot be blinded, an Endpoint Adjudication Committee, consisting of clinical experts in a specific clinical area, might be set up to harmonise and standardise endpoint assessment and to determine whether the endpoints meet protocol-specified criteria. In order to allow for an unbiased endpoint assessment the members of such a committee should be blinded to treatment assignment. Endpoint Adjudication Committees are, for example, widely used in the assessment of radiological endpoints.
Where information and knowledge about research is provided and disseminated, for example science festivals, open days, media coverage.
Enabling Research in Care Homes
The act of admitting a participant into a trial. Participants should be enrolled only after study personnel have confirmed that all the eligibility criteria have been met.
Formal enrolment must occur before randomised assignment.
Bowel Function Healthcare Technology Cooperative
The study of population and community health, not just individuals.
Enhancing the Quality and Transparency of Health Research Network
A state of uncertainty where a person believes it is equally likely that either of two treatment options is better.