Adapted from INVOLVE’s Jargon Buster and the NDORMS Open Arms Jargon Buster. Please let us know if there are other terms you feel would be useful to add, or if there are any definitions which are unclear.
A brief summary of a research study.
It outlines why the study was done, the methods used and the results that were discovered.
Health services which are delivered by clinicians (doctors, nurses, physiotherapists, and others) in hospital.
Advisory Group also known as ‘steering group’ or ‘steering committee’
A group of people who advise on research projects. They give feedback on research aims and methods.
The group can include patients, caregivers, service users,members of the public andand other experts or professionals.
This means creating solutions or adjustments so that people with disabilities can do what they need and want to do in everyday life, including activities and vents.
Ideally, they can then do things in a similar manner to non-disabled people.
Arthritis is a medical condition that causes pain, inflammation, and stiffness in the joints.
This can affect a person’s mobility and ability to carry out daily activities.
Some of the main types of arthritis are osteoarthritis, inflammatory arthritis, and rheumatoid arthritis.
Blinding (within a clinical trial / research study)
Blinding means that the patient (and sometimes the person treating the patient, if it’s a ‘double-blind trial’) doesn’t know which treatment they are getting in a trial.
Biomedical Research Centre (BRC)
The National Institute for Health Research (NIHR), together with local universities, runs 20 Biomedical Research Centres (BRCs) in the UK. These bring together academics and clinicians.
They work together to translate lab-based scientific breakthroughs into possible new treatments, diagnostics and medical technologies.
The Oxford BRC is run by Oxford Health NHS Foundation Trust and the University of Oxford.
Chief Investigator (CI)
The Chief Investigator of a research project or clinical trial is the lead researcher.
Principle Investigators are people who are only responsible for the research that is done at their own sites.
Chief Investigators are also responsible for the overall running of a project (which may involve different sites).
Clinical research is any research that studies health and disease.
This includes research that studies ways to prevent, diagnose or treat diseases.
A clinical trial is a type of clinical research that tests if and how a new treatment (or intervention) works in humans.
Clinical trials usually find out how effective a new treatment is by comparing against a placebo or against the treatment that is currently available. See also ‘RCT’.
Clinical Trials Unit (CTU)
Clinical Trials Units are units which have been set up to do clinical trials.
Specialists who work in these units do everything from designing trials to running them.
They also analyse and publish results. See also 'OCTRU'
Collaboration means working together.
In PPI, it means researchers, patients, the public, and other experts working together to improve research and its outcomes.
A group of people who work together with clear aims and objectives.
In research, this is likely to be overseeing and monitoring a research project.
Confidentiality means keeping patient and participant information (data) safe and private.
Researchers who use information about patients or participants must make sure that they keep this information safe.
They also have to ask for permission from the patients or participants to use their data.
Conflicts of Interest
When a person may have a financial or social reason that could help them benefit from a certain result of a situation.
It may mean they are not unbiased or neutral.
A consultation is the act of getting information, advice, or an opinion from someone.
In research, a public consultation means asking members of the public what they think about a (possible) research project.
Data data is plural; the singular version of the word is ‘datum’
Data are collections of information that researchers gather and analyse during research.
Data can include numbers, words and symbols.
Data protection is about the steps researchers must take to keep their information safe and private.
In the UK, researchers must follow laws in the Data Protection Act of 1998, and the General Data Protection Regulation of 2018.
This is also known as UK GDPR
Dissemination is the sharing of research findings and results.
Emergency Department (ED)
This is also known as ‘Accident and Emergency’ (A&E). It is the department where emergency medical care is given.
These are usually open 24 hours a day. Patients often go from the ED to other departments or wards in the hospital for further treatment.
Ethics is concerned with what is morally good and bad, and morally right and wrong. It refers to any system or theory of moral values or principles.
Researchers use a common understanding of ethics to guide fair and decent decision-making to prevent harm to patients and the public.
Usually, an independent Research Ethics Committee will review a potential research project to decide if it is fair and ethical.
A small group of people who meet to discuss an idea or topic.
Follow-up / long-term follow-up
In many trials, patients give updates on their condition and quality of life at set time points after their main treatment (for instance, six months, or one year after they were treated in the main trial).
This is known as a follow-up. It often involves a member of the trial team contacting patients individually to collect their feedback.
Informed consent is a process in which a patient gives voluntary consent / agrees to do something (for instance, to take part in a trial).
It is very important that patients get all the relevant information they need in order to decide whether to agree to participate. For trials, this usually includes a Patient Information Sheet (see below).
In cases where a patient is unable to give consent themselves, a relative or carer may be able to give this for them.
The British Medical Journal describes this as ‘a combination of activities or strategies designed to assess, improve, maintain, promote, or modify health among individuals or an entire population’
James Lind Alliance (JLA)
The James Lind Alliance is an initiative which runs ‘Priority Setting Partnerships’.
These are exercises where patients, carers and clinicians decide on the Top 10 questions they want answered in particular research areas.
The JLA method, described in the JLA Guidebook, is designed to change the way research funding is granted.
It aims to raise awareness of research questions which are of direct relevance, and potential benefit, to patients and the clinicians who treat them.
A journal is a collection of articles that is published regularly throughout the year.
Journals present the most recent research, and journal articles are written by experts, for experts.
Each journal usually specialises in one particular topic area.
In a research context, a lay person usually has expertise and experience in areas other than the research speciality.
For instance, they may be / have been a patient or carer, alongside many other life and work experiences.
A lay summary is a short summary of a research publication or research proposal written in plain language.
These are non-technical summaries written in a way so that everyone can understand the research that people are talking about.
Medical Research Council (MRC)
An organisation which funds research to improve the health of people in the UK and around the world.
How research is done.
This includes how we collect and analyse information, as well as why we choose a particular method.
The musculoskeletal system includes the muscles and skeleton.
It also includes the tissue – cartilage, tendons, and ligaments – that hold them together.
Musculoskeletal medicine is often called ‘MSK medicine’.
National Institute for Health and Care Excellence (NICE)
Part of the Department of Health, which publishes guidelines on clinical practice (treatment and care of patients).
The National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is an organisation that funds and coordinates clinical research in the UK. It is run by the UK government.
The Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences (NDORMS)
The Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences is a world-leading centre for research to improve treatment for musculoskeletal diseases at the University of Oxford.
It works in partnership with Oxford University Hospitals NHS Foundation Trust.
Open fractures are fractures where the skin is broken near the site of the fracture.
These can be more complicated to treat than closed fractures, and carry a higher risk of infection.
A patient who visits a hospital for treatment, but does not need to stay overnight (for example, when attending a physiotherapy clinic).
Oxford Clinical Trials Research Unit (OCTRU)
A Clinical Trials Unit based at the University of Oxford.
OCTRU staff work closely with Oxford Trauma and Emergency Care and other clinical research groups at the University.
Orthopaedics is a field of medicine that focuses on the musculoskeletal system.
Outcome measures are used in clinical trials to assess the effectiveness of an intervention or treatment.
Before a clinical trial starts, the research team will decide on the outcome measures and how they will gather information.
For example, some outcome measures, such as quality of life, can be reported directly by patients.
A medical speciality focusing on healthcare and treatment for children (younger than 18 years old).
A participant is someone who volunteers to take part in a study or trial.
Participants may sometimes also be known as ‘subjects’.
Participatory research is research that depends on participants to volunteer to take part.
Usually, the research project will focus on an issue or aspect of a disease that is important to patients, caregivers, and service users.
In participatory research, participants are usually involved in the designing the project and gathering information.
Patient information sheet (PIS) / leaflet (PIL)
Patient information sheets/leaflets are documents written in plain (non-clinical) language, that researchers must provide to participants in their research project.
They explain what the study is about and what will be expected of the participants.
This is to help participants make informed decisions about whether or not to join a study.
Patient partners are collaborators in the research process who may help shape the design, data collection, analysis, dissemination and monitor research projects.
They may also be called co-researchers.
Patient and public involvement (PPI)
Patient and Public Involvement is also known as PPI.
In research, PPI representatives bring their experiences and knowledge into the discussion to help create better research.
This could be anything from help designing a new research project, to giving feedback on a completed research project, to sharing new research findings.
Peer review is a system of making sure that research findings are accurate and valid.
This involves sharing a research paper with other experts and professionals (before it is published) for them to review.
These reviewers then comment on the research paper, including both the methods and the findings, and can suggest ways to make it better.
A protocol is a method for carrying out an activity.
A research protocol outlines exactly what the researchers plan to do, what data they plan to collect, and how.
This helps Research Ethics Committees decide if a potential research project is ethical.
Principle Investigator (PI)
A Principle Investigator in a clinical trial is in charge of running the research at a specific site.
For instance, a clinical trial might have three hospitals all recruiting patients into the trial; each of these sites will have its own Principle Investigator.
A publication is a method of making research findings public.
Usually, this means publishing a peer-reviewed research paper in a medical journal, or presenting a poster at a conference.
It can also mean other ways of sharing information such as reports, books, or websites.
Research and development (R&D)
Research and development is the process of researching and investigating a new product, such as a drug.
Staff in R&D departments make sure that studies meet the required regulations for research.
They also deal with administration of things like sponsorship and contracts.
This is the process where patients are allocated to different treatments within a trial.
Computer programmes are used to ensure the random allocation of participants.
Each patient who is in the trial has an equal chance of having either intervention.
Randomised Controlled Trial (RCT)
A randomised controlled trial compares different interventions or types of treatment.
Often a new treatment (experimental) is compared with ‘usual care’ (see below) or a placebo (control group).
The control group allows the researchers to see whether the treatment they are testing is more or less effective than the usual or standard treatment.
A placebo can be a drug that looks the same as the treatment but contains no active ingredients.
Rehabilitation includes activities such as physiotherapy that aim to help a person recover, for example, from surgery or an injury.
Reimbursement is when you pay someone back for money they have already spent.
A representative is someone who acts or speaks on behalf of someone else or on behalf of a group.
In research, a representative usually represents patient groups or the public.
Research is process of investigation and can use a range of methods such as experiments, observation, interviews to find out new information.
Research governance is the sets of rules that researchers must follow to make sure that their research is ethical, safe, and trustworthy.
In the UK, NHS researchers must follow the Research Governance Framework for Health and Social Care from the government’s Department of Health.
A research partner is someone who is involved in leading, designing, or carrying out a research project.
A research partner can be from any background, including patients, the public, or other professionals.
Such partners are equally respected and responsible for the research project.
A research proposal is a document that researchers write when they design a new research project.
Proposals are usually sent to whoever is providing the money for the research project to help decide if they want to fund it.
A proposal should include:
- the overall aim of the research
- the main questions the researchers want to answer
- a plan for how they carry out the research
- who will be involved
- plans for how long it will last and
- how much it will cost.
A review publication is a peer-reviewed article in a medical journal.
It is an overview of different research that summarises everything that is known about a particular disease or topic.
The position or purpose something or someone has in a particular situation, organisation or society.
A stakeholder is anyone who is interested in a research project or might be affected by the outcomes.
This can include researchers, people who fund the research, managers, patients, and the public.
Terms of reference
This refers to the scope and limitations of an activity or area of knowledge.
A traumatic injury is a sudden and severe injury that needs immediate medical (often surgical) attention.
Trial Management Group (TMG)
This is a group which includes the people involved in the day-to-day running of a trial.
This could include the Chief Investigator and trial manager, but also others such as statisticians and research nurses.
Trial Steering Committee (TSC)
This group supervises the running of the trial.
As well as the immediate trial team, it should also include independent members who aren’t connected to the main organisations and funders of the trial.
This sometimes includes members of PPI groups.
Usual care is the care that patients would normally get.
Within clinical trials, it means the care we give to the participants who are not getting the tested intervention.
A user researcher is someone who is a patient or service user of health and/or social care services and is also a researcher.
A person who freely offers to take part or undertake a task without being paid.