|
Jargon - the ABCs of Research
These 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.
Click on each link below to expand section and
view definitions.
Advisory group (steering group)
Clinical research
Clinical trial (trial)
Collaboration
Commissioning
Commissioning Board /
Commissioning Panel
Consultation
Consumer
Dissemination
Ethics Committees
Focus group
Interview
Lay
(lay person)
Lay Summary
Mentor
NHS Research
Participant
Patient information
leaflet / sheet
peer interviewing
Peer review / refereeing
Perspectives / user
perspectives
Protocol / research protocol
Questionnaire
Randomised controlled trial
Research
Research Network
Research partner
Research proposal
Service user or user
Systematic review
User controlled research
/ user led research
|
Advisory
group (steering group) |
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.
Return to the top of page
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.
Return to the top of page
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).
Return to the top of page
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.
Return to the top of page
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
Return to the top of page
|
Commissioning
Board/ Commissioning Panel |
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.
Return to the top of page
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.
Return to the top of page
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.
Return to the top of page
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.
Return to the top of page
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].
Return to the top of page
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.
Return to the top of page
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.
Return to the top of page
The term lay means non-professional. In research, it
refers to the people who are neither academic
researchers nor health or social care professionals.
Return to the top of page
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.
Members of the public (or public)
INVOLVE uses this term to cover:
•
patients and potential patients;
•
people who use health and social care services
•
informal (unpaid) carers
•
parents/guardians
•
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.
Return to the top of page
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.
Return to the top of page
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
Return to the top of page
A participant is someone who takes part in a
research project. Sometimes research participants
are referred to as research ‘subjects’.
Return to the top of page
|
Patient
information leaflet /
sheet |
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
Return to the top of page
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.
Return to the top of page
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
Return to the top of page
|
Perspectives
/ user perspectives |
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.
Return to the top of page
|
Protocol
/ research protocol |
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.
Return to the top of page
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.
Return to the top of page
|
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
(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.
Return to the top of page
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].
Return to the top of page
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:
•
cancer
•
medicines for children
•
diabetes
•
dementia
•
mental health
•
stroke
•
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.
Return to the top of page
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.
Return to the top of page
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.
Return to the top of page
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]
Return to the top of page
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.
Return to the top of page
|
User
controlled research / user led research |
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.
Return to the top of page |
