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.
Randomised controlled trial
A controlled trial compares two groups of people: an experimental group who receive the new treatment and a control group, who receive the usual treatment or a placebo. The control group allows the researchers to see whether the treatment they are testing is any more or less effective than the usual or standard treatment.
In a randomised controlled trial, the decision about which group a person joins is random (that is based on chance). A computer will decide rather than the researcher or the participant. Randomisation ensures that the two groups are as similar as possible, except for the treatment they receive. This is important because it means that the researcher can be sure that any differences between the groups are only due to the treatment.
As a representative, you are expected to speak on behalf of a larger group of people. If you’ve been asked to get involved in research as a representative of a particular group, you may want to think about how you can be confident that you are representing a wider range of people’s views, rather than just offering your own perspective.
The term research means different things to different people, but is essentially about finding out new knowledge that could lead to changes to treatments, policies or care.
The definition used by the Department of Health is: “The attempt to derive generalisable new knowledge by addressing clearly defined questions with systematic and rigorous methods.”
Research commissioners write a research brief. The brief describes why they want to commission a piece of research, what questions the research should address and sometimes how the research should be carried out. It might include information about when the research needs to be completed and how much money is available. Researchers then write a research proposal that explains how they will address the research brief.
Research governance is a process aimed at ensuring that research is high quality, safe and ethical. The Department of Health has a Research Governance Framework for Health and Social Care, which everyone involved in research within the NHS or social services must follow.
Research grants are given to enable researchers to carry out a particular piece of research. They might amount to millions of pounds for a major study about genetics for example, or a few hundred pounds for a local study about people’s experience of using a particular service. Usually, in order to get research grants, researchers have to write a research proposal and receive a positive peer review.
Research networks aim to bring together people who have an interest in research about a particular condition or group of people. Networks might be national or local.
The Department of Health supports research networks to promote research in specific areas. These include:
• medicines for children
• mental health
These networks encourage researchers to work together and improve the quality of research.
Outside the NHS there are other types of research networks. For example, the Alzheimer’s Society and the Multiple Sclerosis Society support research networks of service users and carers who are actively involved in research.
The term research partner is used to describe people who get actively involved in research, to the extent that they are seen by their ‘professional’ colleagues as a partner, rather than someone who might be consulted occasionally.
Partnership suggests that researchers and service users/carers have a relationship that involves mutual respect and equality.
This is usually an application form or set of papers that researchers have to complete to say what research they want to do and how they want to do it. It will also cover the aim of the research, what the research questions are, who will be involved (both as participants and in carrying out the research), the time-scale and the cost.
Researchers are the people who do the research. They may do research for a living, and be based in a university, hospital or other institution, and/or they may be a service user or carer.