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.
Data is the information collected through research. It can include written information, numbers, sounds and pictures. It is usually stored on computer, so that it can be analysed, interpreted and then communicated to others, for example in reports, graphs or diagrams.
All personal information is protected in the UK by the Data Protection Act (1998). This means that researchers have to put in all the necessary safeguards to protect the confidentiality of the information they collect about research participants. They should explain in the patient information sheet:
• how the participants’ data will be collected
• how it will be stored securely
• what it will be used for
• who will have access to the data that identifies participants
• how long it will be kept
• how it will be disposed of securely.
Dissemination involves communicating the findings of a research project to a wide range of people who might find it useful. This can be done through:
• producing reports (often these are made available on the Internet)
• publishing articles in journals or newsletters
• issuing press releases
• giving talks at conferences.
It is also important to feedback the findings of research to research participants.