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.
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. Some people do not like this term because they feel it has negative connotations.
Social care research
Social care refers to a range of services provided across different settings, usually in the community. These include:
• home care, day care and residential care for older people
• residential care and fostering for children
• support for parents of disabled children
• supporting mental health service users, physically disabled people and people with learning difficulties
• support for carers
Social care research involves finding out new knowledge (or testing out existing ideas) to do with social care – so social care research might address questions about:
• people’s experience of using different home care services
• the best ways to train new foster parents.
Statistics and statistical analysis
Statistics are a set of numbers (quantitative data) obtained through research. For example, the average age of a group of people, or the number of people using a service.
Statistical analysis uses a set of mathematical rules to analyse quantitative data. It can help researchers decide what data means. For example, statistical analysis can assess whether any difference seen between two groups of people (for example between the groups of people in a clinical trial) is likely to be a reliable finding or simply due to chance.
Survivor is a term some people who have used health or social care services use to describe themselves – they see this as a more empowering term than ‘patient’ or ‘sufferer’. For example, some people who have used mental health services or who have experienced mental or emotional distress call themselves survivors of the psychiatric system. Some people who have recovered from cancer call themselves cancer survivors.
If someone describes themselves as a survivor researcher, they are making a statement about the fact that they have used health or social care services as well as being a researcher.
Systematic reviews aim to bring together the results of all studies addressing a particular research question that have been carried out around the world. They provide a comprehensive and unbiased summary of the research.
For example, one clinical trial may not give a clear answer about the effectiveness of a treatment. This might be because the difference between the treatments being tested was very small, or because only a small number of people took part in the trial. So systematic reviews are used to bring the results of a number of similar trials together, to piece together and assess the quality of all of the evidence. Combining the results from a number of trials may give a clearer picture.