- Advisory Group (Steering Group)
- Clinical research
- Clinical trial (trial)
- Commissioning Board or Commissioning Panel
- Ethics Committees
- Focus Group
- Lay (lay person)
- Lay summary
- Members of the public (or public)
- NHS research
- Patient information leaflet or patient information sheet
- Patient-led research
- Peer interviewing
- Peer review or refereeing
- Perspectives or user perspectives
- Protocol or research protocol
- Randomised controlled trial
- Research Network
- Research partner
- Research proposal
- Service user or user
- Service user researcher
- Systematic review
- User controlled research or user led research
The definitions are taken from a Jargon buster that was developed for INVOLVE by TwoCan Associates working in consultation with a panel of researchers and a panel of members of the public.
The full version of the Jargon buster is available on INVOLVE’s website.
Please note that words that appear in bold and are underlined link to other terms defined in the Jargon buster.
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.
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.
(National Institute for Mental Health in England (NIMHE) definition)
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.
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.
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
- 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.
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.
The job of an ethics committee is to make sure that research carried out respects the dignity, rights, safety and well-being of the people who take part. Increasingly Ethics Committee approval is needed for health and social care research. Ethics committee members include researchers and health care professionals as well as members of the public. [National Library for Health definition]
A focus group is a small group of people brought together to talk. The purpose is to listen and gather information. It is a good way to find out how people feel or think about an issue, or to come up with possible solutions to problems.
In research, an interview is a conversation between two or more people, where a researcher asks questions to obtain information from the person (or people) being interviewed. Interviews can be carried out in person (face-to-face) or over the phone.
The term lay means non-professional. In research, it refers to the people who are neither academic researchers nor health or social care professionals.
A lay summary is a brief summary of a research project or a research proposal that has been written for members of the public, rather than researchers or professionals. It should be written in plain English, avoid the use of jargon and explain any technical terms that have to be included.
INVOLVE uses this term to cover:
- patients and potential patients;
- people who use health and social care services
- informal (unpaid) carers
- disabled people
- members of the public who are potential recipients of health promotion programmes, public health programmes, and social service interventions
- groups asking for research because they believe they have been exposed to potentially harmful substances or products (e.g. pesticides or asbestos).
- organisations that represent people who use services
- other organisations have different definitions of this term.
A mentor is a person willing to share their experience, knowledge and wisdom to help, guide and support someone who is less experienced. Mentors act as friends, teachers and advisers. A person who is newly involved in research can ask for a mentor to help them adjust to their new role.
NHS research is research carried out in the NHS or funded by the NHS. This includes research that takes place in local hospitals or GP surgeries, and larger studies commissioned by the NHS at a national level, for example:
- A study based in a GP surgery looking at people’s experience of long term chronic pain
- A big randomised controlled trial to look at the best treatment for people with bowel cancer
A participant is someone who takes part in a research project. Sometimes research participants are referred to as research ‘subjects’.
Researchers must provide a patient information leaflet to everyone they invite to take part in a research study, to ensure people can make an informed decision about this. The leaflet explains what taking part will involve and should include details about:
- Why the research is being done, how long it will last, and what methods will be used.
- The possible risks and benefits
- What taking part will practically involve e.g. extra visits to a hospital or a researcher coming to interview someone at home
- What interventions are being tested, or what topics an interview will cover
- How the researchers will keep participants’ information confidential
- What compensation is available to people if they are harmed as a result of taking part in the research
- Who to contact for further information
- How the results will be shared with others
Peer interviewing is where people are interviewed by others who have a similar experience to them – their peers. For example, in a project to find out about children’s experiences of after school care, children with experience of using after school care may act as peer interviewers, asking other children about their experience. Some researchers believe that this kind of interviewing enables people to talk more freely about their experience.
Peer reviewing is where a research proposal or a report of research is read and commented on by people with similar interests and expertise to those who wrote the proposal or report. Peer reviewers might be members of the public, researchers, or other professionals. Peer review helps to check the quality of a report or research proposal. Members of the public who act as peer reviewers may choose to comment on:
- Whether the research addresses an important and relevant question
- The methods used by researchers
- The quality of public involvement in the research
A user perspective is often what people with experience of using health or social services are asked to bring when they get involved in research. They are asked to provide ideas, comments and suggestions based on the unique insight they have from their knowledge and experience of life with a health condition. They cannot be representative of everyone who uses a particular service, but they can offer their own perspective, and often that of other people.
A protocol is the plan for a piece of research. It usually includes information about:
- What question the research is asking and its importance/relevance
- The background and context of the research, including what other research has been done before
- How many people will be involved
- Who can take part
- The research method
- What will happen to the results and how they will be publicised
A protocol describes in great detail what the researchers will do during the research. Usually, it cannot be changed without going back to a research ethics committee for approval. [National Electronic Library for Health and NIMHE definition
A questionnaire is a prepared set of written questions used to obtain information from research participants. Questionnaires can be completed on paper, using a computer or with an interviewer.
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 (i.e. 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.
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” [Alzheimer’s Society Quality Research Programme definition]
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
- primary care
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 Disease 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 timescale and the cost.
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. [Suffolk Carers definition]
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.
User controlled research is research that is actively controlled, directed and managed by service users and their service user organisations. Service users decide on the issues and questions to be looked at, as well as the way the research is designed, planned and written up. The service users will run the research advisory or steering group and may also decide to carry out the research. Some service users make no distinction between the term user controlled and user led research, others feel that user led research has a different, vaguer meaning. They see user led research as research which is meant to be led and shaped by service users but is not necessarily controlled by them. Control in user led research in this case will rest with some other group of non-service users who also have an interest in the research, such as the commissioners of the research, the researchers or people who provide services.
Page last edited: 25 November 2011