Glossary of terms
Our glossary provides meaning to commonly used terms in data and statistics research. Search key words to understand their definition.
AAI (Artificial Intelligence)
Artificial Intelligence (AI) is a branch of science that aims to create technology that may perform tasks and make decisions in a way that resembles human intelligence. Definition from: DATAMIND
AAnonymisation
Anonymisation is the process of changing personal identifiers (i.e., address, name) in some way – such as being removed or replaced – so that the data cannot be traced back to the individual. This process allows data to be shared and used safely while preserving the privacy of people included in the data.
BBig Data
Large, often complex, data sets to improve research and allow faster, better-informed decision-making. Big data sources like nationwide electronic health records are used for many purposes like identifying people’s likelihood of developing an illness and which treatments are most effective. Definition from: Cancer Research UK
CCEI (Community Engagement and Involvement)
An active involvement of the community throughout the research process, using participatory approaches and working in partnership with all key stakeholders. A range of activities which involve interactions between researchers, community members and stakeholders – these aim to improve the relevance, value and conduct of health research. Definition from: National Institute for Health and Care Research (NIHR)
CCo-design
A collaborative approach bringing together people with different backgrounds and interests, like researchers and the public, to jointly plan and design a project.
CCo-production
An approach in which people with different backgrounds and interests work together, sharing power and responsibility for delivering a project. When applied to data research, the assumption is that those impacted by the research, such as members of the public affected by an issue that the research is trying to address, are best placed to design and support delivery of it. Definition adapted from: National Institute for Health and Care Research (NIHR)
DData
Data means information. It can be numbers, text, images, videos, sound recordings or any other type of information that can be collected, stored and analysed by computers or humans. Definition from: DATAMIND
DData access processes
Data access processes refer to procedures and criteria used to grant access to data held by organisations (known as data custodians), such as research institutions, the National Health Service, Police, Education authorities, and others. These processes ensure the data is used ethically, securely, and in ways that benefit the public, while following the law and rules.
DData analysis
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. Definition from: National Institute for Health and Care Research (NIHR)
DData Controller
A person, agency, public authority or other body which, alone or jointly, decides the reason for collecting and processing different types of data. Controllers have overall responsibility of the personal data they are collecting and processing. Definition adapted from: ADR UK (Administrative Data Research UK)
DData Governance
What is done, and the rules that must be followed, on how data is used, managed, who can use it, how and for what. Definition from: Cancer Research UK
DData Linkage
The act of bringing two or more datasets from different sources together, creating associations between the data. Data linkage can provide new statistical insights that are not possible with information from a single source. Definition from: ADR UK (Administrative Data Research UK)
DData Literacy
The ability to read, understand, and communicate data—known as data literacy—empowers people to engage in data research and statistics, which can often be complex and challenging to navigate.
DData Research
The process of collecting, analysing and interpreting health and non-health data to help answer questions, identify patterns or support decision making. Data research can be carried out across various sectors from healthcare to business.
DData Science
Data science is a field of research that focuses on learning from data. It involves different areas of study, like storing, organising and processing data (data management, computer science) and analysing data to find useful patterns (computer science, statistics). Definition from: DATAMIND
DDe-identification
De-identification is the process of removing personal information from data, creating ‘de-identified data’. While this data no longer contains details that directly identify a person, it can still be linked to identifiable information. This differs from anonymised data, which cannot be linked back to an individual.
DDe-identified Data
Data that has been de-identified does not contain any information that could identify a person, such as name, address, postcodes, etc. Identifiers are removed from the records before de-identified data is is used by approved data researchers for research purposes, for example through a Trusted Research Environment. Definition adapted from: ADR UK (Administrative Data Research UK)
DDissemination
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, publishing articles in journals or newsletters, issuing press releases or giving talks at conferences. Definition from: National Institute for Health and Care Research (NIHR)
EECR (Early Career Researcher)
People who are in the early stages of their research careers, typically within a few years of completing their doctoral degree (PhD) or equivalent. Definition from: DATAMIND
EEDI (Equality, Diversity and Inclusion)
Equality: Ensuring that everyone is given equal access to resources and opportunities to utilise their skills and talents.
Diversity: Being reflective of the wider community. Having a diverse community, with people from a broad range of backgrounds represented in all areas and at all levels.
Inclusion: An approach where groups or individuals with different backgrounds are welcomed, culturally and socially accepted and treated equally. Engaging with each person as an individual. A sense of belonging that is respectful of people for who they are.
Definitions from: National Institute for Health and Care Research (NIHR)
EEHR (Electronic Health Record)
A health record: ‘consists of data concerning health and has been made by or on behalf of a health professional in connection with the diagnosis, care or treatment of the individual to whom the data relates’. With electronic health records these are held in digital form. Definition from: NHS England
EEquity
Equity means promoting fairness and justice by ensuring that everyone has access to the same opportunities and resources, taking into account their personal needs and circumstances.
EExperts by Experience
The term ‘experts by experience’ refers to service users and carers, who are experts through their experience of illness or disability and services. Definition from: National Institute for Health and Care Research (NIHR)
FFacilitator(s)
A facilitator is someone who helps to guide a meeting or discussion, making sure it runs smoothly, everyone gets a chance to share their thoughts, and the goals of the activity are achieved.
FFive Safes
The Five Safes framework, created by the UK Data Service in the UK, helps researchers use personal data carefully while keeping people’s information safe. People around the world now see it as a good way to handle data responsibly. Definition adapted from: DATAMIND
HHealth Data
This can range from information about your illnesses, treatments and conditions or prescriptions, health risks and quality of life. National healthcare databases hold information on everything from diagnosis to blood tests. Definition from: Cancer Research UK
IIdentifiable Data
Information that directly tells you who someone is. It includes things like their name, date of birth, address, NHS number and phone number. This kind of data is sensitive and needs to be handled carefully to protect people’s personal information. Definition adapted from: DATAMIND
IImpact
Long term changes as a result of a piece of work or research. These could be changes to how people think, changes to what people do or changes to how things work such as changes to policies and practice. Definition adapted from: National Co-ordinating Centre for Public Engagement (NCCPE)
IInsights
Information that is gained to understand more about a situation or experience. For example, people with lived experience of a certain issue might be asked to provide insights to help inform and shape relevant research into that issue. See ‘Lived Experience’.
LLay Person
The term ‘lay’ means non-professional. In research, it refers to the people who are neither academic researchers nor health or social care professionals. Definition from: National Institute for Health and Care Research (NIHR)
LLay 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. Definition from: National Institute for Health and Care Research (NIHR)
LLived Experience
Insights and perspectives gained from individuals who have directly experienced a particular condition or situation. Definition from: DATAMIND
PPEDRI Good Practice Standards
A set of standards to support professionals in the data and statistics community to effectively involve and engage the public in the governance and conduct of data-related initiatives and research projects.
PPIE (Public Involvement and Engagement)
Involvement and Engagement are interrelated and sometimes are interchangeably used.
Involvement means that activities and research are carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them. Members of the public are actively involved in the development, running and management of research projects or activities. Definition from: National Institute for Health and Care Research (NIHR).
Engagement describes the myriad of ways in which the activity and benefits of an organisation or research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit. Definition from: National Co-ordinating Centre for Public Engagement (NCCPE).
PPrivacy safeguards
Privacy safeguards refer to measures designed to protect people’s personal information and ensure that data is handled in a way that maintains confidentiality, security, and trust.
PPublic
This term can cover a broad range of people, including the general public, patients, and professionals working across different sectors.
PPublic Advisory Group
A public advisory group or panel is a dedicated group of public members who support and advise research projects or governance within an organisation. The PEDRI public advisory group (PAG) provides guidance and support to PEDRI to ensure public voice is embedded in all our work.
PPublic Contributor(s)
Members of the public who are involved in research and projects are sometimes referred to as public contributors, as they help contribute to the overall piece of work. They are also sometimes referred to as Public Partners. PEDRI has several public contributors supporting our work across our workstreams. See ‘Public Advisory Group’.
PPublic Good
Refers to activity which is motivated by its benefit to society, rather than private profit. This work often aims to provide evidence for public policies, services or decisions to ultimately improve lives. Definition from: ADR UK (Administrative Data Research UK)
PPublic Representative(s)
A representative is expected to speak on behalf of a larger group of people. Public representatives consider a wider range of people’s views, rather than just their own perspective. Definition adapted from: National Institute for Health and Care Research (NIHR)
RResearch
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.” Definition from: National Institute for Health and Care Research (NIHR)
RResearch initiative
A research initiative (sometimes referred to as ‘research programme’) is a broader effort designed to tackle a problem or explore a significant topic. It often includes multiple activities, projects, or collaborators working together to drive innovation, develop solutions, or advance knowledge.
RResearch project
A research project is a smaller, focused task within a research initiative. It often involves asking questions, collecting information, testing ideas, and looking for answers step by step.
RResearcher
Researchers are the people who do the research. They may do research for a living and be based in a university, hospital or other institution and/or they may be a service user or carer. Definition from: National Institute for Health and Care Research (NIHR)
SSDE (Secure Data Environment)
Secure Data Environments are data storage and access platforms, which uphold the highest standards of privacy and security of NHS health and social care data when used for research and analysis. Secure Data Environments give approved users access to relevant health data for research and analysis, without the raw data ever leaving the Secure Data Environment. Also known as data safe havens or Trusted Research Environments (TREs). Definition from: NHS England
SService User
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. Definition from: National Institute for Health and Care Research (NIHR)
SStatistical analysis
Statistical analysis uses a set of mathematical rules to analyse quantitative data. It can help researchers decide what data means. For example, statistical analysis can assess whether any difference seen between two groups of people (for example between the groups of people in a clinical trial) is likely to be a reliable finding or simply due to chance. Definition from: National Institute for Health and Care Research (NIHR)
SStatistics
A set of numbers (quantitative data) obtained through research. For example, the average age of a group of people or the number of people using a service. Definition from: National Institute for Health and Care Research (NIHR)
TTRE (Trusted Research Environment)
Highly secure computing environments containing de-identified data. Researchers and their projects are required to be accredited to access and use this data. TREs are also known as data safe havens and secure data environments (SDEs). Definition from: ADR UK (Administrative Data Research UK)
UUnderrepresented
Underrepresented (sometimes referred to as ‘seldom heard’) refers to specific groups, populations, or communities who are not often included as research participants or public contributors in research. This means their perspectives, needs, or concerns may not be represented in research.
UUnderserved
Underserved refers to specific groups, populations, or communities that face limited access to resources, services, or support due to barriers like social, economic, or systemic factors. Definition adapted from: DATAMIND
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