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.
This is a brief summary of a research study and its results. It should tell you why the study was done, how the researchers went about it and what they found.
Action research is used to bring about improvement or practical change. A group of people who know about a problem work together to develop an idea about how it might be resolved. They then go and test this idea. The people who take part in the testing provide feedback on their experiences. They may also identify further actions that need to be researched and tested. This cycle of developing solutions and testing them is repeated until the problem has been solved.
Many research projects have an advisory group (or steering group). The group helps to develop, support, advise and monitor the project. The group often includes people who use services, carers, researchers and other health and social care professionals, who can provide relevant advice.
Data analysis involves examining and processing research data, in order to answer the questions that the project is trying to address. It involves identifying patterns and drawing out the main themes, and is often done with specialist computer software.
An audit of health or social care involves carrying out a systematic assessment of how well that care is being delivered. Current policy and practice is compared with an agreed standard, so that any problem areas can be identified and improved. Later, the audit can be carried out again to check that the changes made have actually made a difference.
Basic research aims to improve knowledge and understanding, rather than finding a solution to a practical problem. It usually involves work in a laboratory – for example to find a gene linked to a disease or to understand how cancer cells grow. This kind of research can sometimes provide clues as to which avenues to explore to develop new treatments.
A carer is a relative, friend or partner who provides (or intends to provide, or used to provide) a substantial amount of care to another person on a regular basis, but not necessarily through living with them.
Clinical research aims to find out the causes of human illness and how it can be treated or prevented. This type of research is based on examining and observing people with different conditions and sometimes comparing them with healthy people. It can also involve research on samples of blood or other tissues, or tests such as scans or X-rays. Clinical researchers will also sometimes analyse the information in patient records, or the data from health and lifestyle surveys.
Clinical trials are research studies involving people who use services, which compare a new or different type of treatment with the best treatment currently available. They test whether the new or different treatment is safe, effective and any better than what already exists. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known.
Collaboration involves active, on-going partnership with members of the public in the research process. For example, members of the public might take part in an advisory group for a research project, or collaborate with researchers to design, undertake and/or disseminate the results of a research project.
A commissioner is the person (or organisation) who asks for a piece of research to be carried out.
Commissioning usually involves:• identifying funding for a piece of research• preparing a research brief• advertising the research topic• selecting a shortlist of researchers who apply to undertake the research• arranging for proposals to be peer reviewed• making a decision about which researchers are going to be awarded the funding• agreeing a contract.
A commissioning board is a group of people who oversee the commissioning process. It is made up of research funders, researchers, health and/or social care professionals and often includes people who use services and carers.
During a research project, the researchers must put data protection measures into place, to ensure that all of the information collected about the participants is kept confidential. This means that the researchers must get the participants’ written permission to look at their medical or social care records. It also means that any information that might identify the participants cannot be used or passed on to others, without first getting the participants’ consent. For example, when researchers publish the results of a project, they are not allowed to include people’s names.
This confidentiality will only be broken in extreme circumstances: where it is essential for the person’s care, treatment or safety, where it is required by a court order, for example in a criminal investigation, or where it is necessary to protect the public.
Consultation involves asking members of the public for their views about research, and then using those views to inform decision-making. This consultation can be about any aspect of the research process – from identifying topics for research, through to thinking about the implications of the research findings. Having a better understanding of people’s views should lead to better decisions.
The term consumer is used to refer collectively to:• people who use services• carers• organisations representing consumers’ interests• members of the public who are the potential recipients of services• groups asking for research to promote good health or because they believe they have been exposed to potentially harmful circumstances, products or services.
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.
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.