Glossary
This is an abridged version of the NIHR’s glossary. The full glossary can be found at Glossary | NIHR.
Abstract
A brief summary of the study and its results. It should tell you what the study tried to show, how the researchers went about it, and what they found.
Advisory 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.
Agenda
A list of matters to be discussed at a meeting. The order of items to be discussed should start with the most important items first in order allocate the appropriate amount of time for discussion.
AMRC
Association of Medical Research Charities: a membership organisation of the leading medical and health research charities in the UK.
ARCs
NIHR Applied Research Collaborations (ARCs) support high quality, generalisable, applied health and care research that responds to, and meets, the needs of local populations and local health and care systems. The collaborations also support, facilitate and increase the rate at which research findings are implemented into practice.
ARC Strategic Governance
Two PPI contributors are included as members of the ARC Strategy Board. Their purpose will be to advise the Board on all development plans of public involvement and engagement within the Oxfordshire and Thames Valley ARC
BRC’s – Biomedical Research Centres
NIHR’s Biomedical Research Centres (BRCs) are collaborations between world-leading universities and NHS organisations that bring together academics and clinicians to translate lab-based scientific breakthroughs into potential new treatments, diagnostics and medical technologies.
Board member
A board member is part of a group of people who jointly look at the activities of a Board and discuss what it is doing
CLAHRCs
The CLAHRCs (Collaborations for Leadership in Applied Health Research and Care) were superseded by the 15 NIHR Applied Research Collaborations (ARCs) in 2019.
Clinical Research Facilities
NIHR’s Clinical Research Facilities (CRFs) are purpose built facilities in NHS hospitals where researchers can deliver early-phase and complex studies.
Clinical Trials
A clinical trial is a research study in volunteers which is designed to answer specific health related questions, for example, to find out the best way to treat, screen, diagnose and/or prevent disease. Data collected during the study can provide information on whether a new treatment or procedure is safe, what (if any) the side effects are, and whether it is better than the current standard treatment.
Community organisations
Working with us to further our understanding and practice of involving more diverse, marginalised or seldom heard public voices within areas and regions such as Oxfordshire and the Thames Valley
Consumer
In health and social care research, 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, and groups asking for research to promote good health or because they believe they have been exposed to potentially harmful circumstances, products or services.
Co-production
An approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge. The assumption is that those affected by research are best placed to design and deliver it and have skills and knowledge of equal importance.
DHSC
The Department of Health and Social Care (DHSC) is the government department supporting ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.
Dissemination
Dissemination involves communicating the findings of work / a project/ a trial etc. to a wide range of people who might find it useful. This can be done through producing reports, publishing articles in journals or newsletters, issuing press releases or giving talks at conferences.
Ethics committees
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
Experts by experience
The term ‘experts by experience’ is used by some and refers to service users and carers, who are experts through their experience of illness or disability and services.
Feasibility studies
Feasibility Studies are pieces of research done before a main study in order to answer the question “Can this study be done?” They are used to estimate important parameters that are needed to design the main study.
Focus group
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
Funder
An organisation providing funding for a study (through agreements, grants or donations to an authorised member of the employing and/ or care organisation). The main funder typically has a key role in scientific quality assurance. In any case, it remains responsible for securing value for money.
Funding committee
A group of experts who consider grant applications and reviewer reports to decide whether to recommend funding.
GDPR
The General Data Protection Regulation 2016/679 is a regulation in EU law on data protection and privacy in the European Union and the European Economic Area. It also addresses the transfer of personal data outside the EU and EEA areas. It is still in force post-Brexit.
Going the Extra Mile (GtEM)
In 2015, the NIHR published Going the Extra Mile – a ten-year roadmap for doing health and care research in partnership with patients, carers and the public
Gold standard
The method, procedure, or measurement that is widely accepted as being the best available, against which new developments should be compared.
HRA Health Research Authority
The Health Research Authority (HRA) is an NHS organisation established to protect and promote the interests of patients and the public in health research.
James Lind Alliance
James Lind Alliance: an initiative that brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the top 10 unanswered questions or evidence uncertainties that they agree are the most important in a specific condition, area or topic.
Lay summary
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.
Low and Middle Income Countries
(LMICs) Countries defined from time to time by the Organisation for Economic Cooperation and Development’s (OECD) and listed on the Development Assistance Committee (DAC) list.
Members of the public
When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. We also include those members of the public who are potential recipients of health promotion programmes, public health programmes, and social service interventions.
MHRA
Medicines and Healthcare Products Regulatory Agency: the competent authority for the UK, it is responsible for ensuring that medicines and medical devices work and are acceptably safe.
MRC
Medical Research Council, the main UK Government source of funds for biomedical and early stage clinical research.
NICE
The National Institute for Health and Clinical Excellence recommends which treatments should be provided by the NHS. NICE makes extensive use of evidence generated by the NIHR programmes.
NIHR National Institute of Health and Care Research
Our mission is to improve the health and wealth of the nation through research. We deliver this mission through 6 core work streams. Our work is guided by our operating principles of impact, excellence, inclusion, collaboration and effectiveness.
NIHR Academy
The NIHR Academy is responsible for development and coordination of NIHR academic training, career development and research capacity development.
NIHR Evidence
Repository of plain language summaries of health and care research that’s funded by the NIHR
One NIHR
One NIHR programme includes creating a more unified culture and increasing the visibility of NIHR. It is also about every member of coordinating centre staff having a sense of belonging to NIHR, and working together towards shared goals and achieving a combined impact.
Patient and public involvement
Also known as PPI, involvement or public involvement. An active partnership between patients and the public and researchers in the research process, rather than the use of people as ‘subjects’ of research. Patient and public involvement in research is often defined as doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them. When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.
Public contributor
Public contributor is an umbrella term used to describe members of the public who take part in patient and public involvement activities. We use the definition of ‘public’ to include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.
Public Partnerships
A term to collectively describe ways in which patients, service users, carers and members of the public work with researchers, and health and care professionals, in the creation and use of health and care research. Public partnerships encompass participation, involvement and engagement; they are all important in the process of creating and making use of high quality research.
PPI Champions
The PPI Champion role provides PPI support for themes in the ARC
Quantitative Research
Quantitative research methods are based on measuring and counting observed phenomena (objective data) and use mathematical models and statistics, usually with large numbers of participants. Most clinical trials use quantitative research methods of data collection and analysis.
Qualitative Research
Qualitative research is usually based on a more in depth study of the subject matter, using a smaller number of participants. It involves subjective description rather than objective measurement and allows the social/environmental context and the investigator to be central to the research process rather than being removed from it. Qualitative methods can be used to evaluate the effects of more complex health or social interventions. Some health and social care studies will use a mixed methods approach.
Research grant
Research grants are specific amounts of money given to 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 proposal
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. The proposal might be addressing a specific research brief and 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.
Resource plan
A resource plan summarises the level of resources needed to complete a project. A properly documented resource plan will specify the exact quantities of labour, equipment and materials needed to complete a project.
Reviewer
An individual with specific knowledge, experience and skills in a field of practice who undertakes an independent review of a grant application, commissioning brief or document for publication. The comments made by this independent ‘external reviewer’ are used to inform the funding decision or the preparation of a written document.
Risk management
Risk management is the identification, evaluation, and prioritisation of risks followed by coordinated and economical application of resources to minimize, monitor, and control the probability or impact of unfortunate events or to maximise the realisation of opportunities.
Risk register
A risk register, also referred to as a risk log, is a master document which plays an important part in a Risk Management Plan, helping you to track issues and address problems as they arise
SMT or SLT
SMT – Senior Management Team or SLT – Senior Leadership Team
Strategic plan
Strategic planning is a process of defining strategy, or direction, and making decisions on allocating resources to pursue this strategy. It may also extend to control mechanisms for guiding the implementation of the strategy.
Systematic review
A review of a clearly formulated question that uses systematic and explicit methods to identify, select, and critically appraise relevant research, and to collect and analyse data from the studies that are included in the review. Statistical methods (meta-analysis) may or may not be used to analyse and summarise the results of the included studies.
Trial Steering Committee TSC
The role of the Trial Steering Committee (TSC) is to provide the overall supervision of the trial. Ideally, the TSC should include members who are independent of the investigators, their employing organisations, funders and sponsors. The TSC should monitor trial progress and conduct and advise on scientific credibility. The TSC will consider and act, as appropriate, upon the recommendations of the Data Monitoring Committee (DMC) or equivalent and ultimately carries the responsibility for deciding whether a trial needs to be stopped on grounds of safety or efficacy.
UK Standards for Public Involvement
The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research. The standards are a description of what good public involvement looks like and encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.
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.
Vision Statement
Where you want to be in a period of time – usually 5, 10, 20 years.
YPAG
Young Persons Advisory Group