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HDR UK GLOSSARY

Table of Contents

Access control

A means of ensuring that the people who have been given access to all or part of a data record have been approved to do so.  Different controls are in place for data sharing.

Adverse reaction

In a clinical trial of an investigational medicinal product, any untoward and unintended response in a subject to an investigational medicinal product which is related to any dose administered to that subject.

Aetiology

The cause, set of causes, or manner of causation of a disease or condition.

  • See also: Existing HDRUK glossary
  • Glossary: Science Glossary

Algorithm

A set of instructions for a computer so it can take values and manipulate them into a usable form.

Alliance

The HDR UK's alliance of leading health, care and research organisations united to establish best practice around the ethical use of UK health data for research and innovation at scale.

  • Glossary: HDRUK Portfolio Glossary

Anonymisation

The process of rendering data into a form which does not identify individuals either directly or indirectly and where identification is not likely to take place by any means reasonably likely.

Applied Analytics

An HDR UK National Priority matching knowledge of analytical tools such as machine learning and artificial intelligence with large-scale health datasets to show their potential to inform health and care delivery.

  • Glossary: HDRUK Portfolio Glossary

Arm

Refers to a group of participants allocated to a particular treatment. In a randomised controlled trial, allocation to different arms is determined by the randomisation procedure. Many controlled trials have two arms, a group of participants assigned to an experimental intervention (sometimes called the treatment arm) and a group of participants assigned to a control (the control arm). Trials may have more than two arms.

Artificial intelligence

A discipline involving research and development of machines that are aware of their surroundings. Most work in AI centers on using machine awareness to solve problems or accomplish some task.

Better Care

An HDR UK National Priority to improve people’s lives by equipping clinicians and patients in the UK with the best possible data-based information to make decisions about their care.

  • Glossary: HDRUK Portfolio Glossary

BHF (BHF)

British Heart Foundation is the UK’s largest independent funder of cardiovascular research and one of HDR UK's core funders

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

BHF Data Science Centre

An HDR UK Hub promoting the safe and ethical use of data for research into all diseases of the heart and circulation.

  • Glossary: HDRUK Portfolio Glossary

Bioinformatics

Interdisciplinary field that develops methods and software tools for understanding biological data. Combines biology, computer science, information engineering, mathematics and statistics to analyze and interpret biological data.

  • See also: Existing HDRUK glossary
  • Glossary: Science Glossary

Blinding

The process of preventing those involved in a trial from knowing which comparison group a participant belongs to. The risk of bias is minimised when fewer people know who is receiving the experimental intervention or the control intervention. Participants, caregivers, outcome assessors, and analysts are all candidates for being blinded. Blinding of certain groups is not always possible, for example, surgeons in surgical trials.

  • Glossary: Science Glossary

Blinding

A procedure in which the investigator administering the assessments and intervention as well as the participants in a clinical trial are kept unaware of the treatment assignment(s). Single blinding usually refers to the study participant(s) being unaware, and double blinding usually refers to the study participant(s) and any of the following being unaware of the treatment assignment(s): investigator(s), monitor, and data analyst(s).

BREATHE

An HDR UK Hub enabling high quality research and innovation to address respiratory conditions such as asthma and COPD.

  • Glossary: HDRUK Portfolio Glossary

Caldicott Guardian

A Caldicott Guardian is a senior person within an NHS organisation responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing.

Care organisation

The organisation(s) responsible for providing care to patients and/or users and carers participating in the study. Care organisations remain liable for the quality of care, and for their duty towards anyone who might be harmed by a study.

Care team

The clinical care team refers to health professionals involved in the diagnosis, treatment or care of a patient. This includes pathology and radiology staff whose activities directly support the care of the patient even though usually they have no contact with the patient.

Chief Scientist Office (CSO)

Chief Scientist Office is part of the Scottish Government Health Directorates and is one of HDR UK's core funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Clincial trial phases

Clinical trials are conducted in “phases.” The trials at each phase have a different purpose and help researchers answer different questions. -Phase I trials — An experimental drug or treatment in a small group of people (20–80) for the first time. The purpose is to evaluate its safety and identify side effects. -Phase II trials — The experimental drug or treatment is administered to a larger group of people (100–300) to determine its effectiveness and to further evaluate its safety. -Phase III trials — The experimental drug or treatment is administered to large groups of people (1,000–3,000) to confirm its effectiveness, monitor side effects, compare it with standard or equivalent treatments. -Phase IV trials — After a drug is licensed and approved by the FDA researchers track its safety, seeking more information about its risks, benefits, and optimal use.

Clinical Audit

Clinical Audit is a quality improvement process that seeks to improve patient care and outcomes through systematic review of care against explicit criteria and the implementation of change. Aspects of the structure, processes, and outcomes of care are selected and systematically evaluated against explicit criteria. Where indicated, changes are implemented at an individual, team, or service level and further monitoring is used to confirm improvement in healthcare delivery.

Clinical guideline

A systematically developed statement for practitioners and participants about appropriate health care for specific clinical circumstances.

Clinical trial

An experiment to compare the effects of two or more healthcare interventions. ‘Clinical trial’ is an umbrella term for a variety of healthcare trial designs.

Clinical trial types

Diagnostic trials determine better tests or procedures for diagnosing a particular disease or condition. Natural history studies provide valuable information about how disease and health progress. Prevention trials look for better ways to prevent a disease in people who have never had the disease or to prevent the disease from returning. Quality of life trials (or supportive care trials) explore and measure ways to improve the comfort and quality of life of people with a chronic illness. Screening trials test the best way to detect certain diseases or health conditions. Treatment trials test new treatments, new combinations of drugs, or new approaches to surgery or radiation therapy.

Clinical Trials

An HDR UK National Priority using health data to ensure that every individual across the UK has access to the latest treatments and technologies through access to clinical trials.

  • Glossary: HDRUK Portfolio Glossary

Clinical Trials Infrastructure

An HDR UK National Core Study building on established NIHR infrastructure (and equivalent in Devolved Administrations) to accelerate delivery of large scale Covid trials for drugs and vaccines.

  • Glossary: HDRUK Portfolio Glossary

Cohort study

An observational study in which a defined group of people (the cohort) is followed over time. The outcomes of people in subsets of this cohort are compared, to examine people who were exposed or not exposed (or exposed at different levels) to a particular intervention or other factor of interest. A prospective cohort study assembles participants and follows them into the future. A retrospective (or historical) cohort study identifies subjects from past records and follows them from the time of those records to the present.

Consent

For consent to be valid, it must be given voluntarily by an appropriately informed person who has the capacity to consent to the intervention in question. In specific circumstances the law does allow for a proxy to give consent (e.g. adults not able to consent for themselves and minors).

Control

A participant in the arm that acts as a comparator for one or more experimental interventions. Controls may receive placebo, no treatment, standard treatment, or an active intervention, such as a standard drug.

Data access

Refers to the availability of data and the process of obtaining data for research. Data access occurs on a spectrum, and the conditions under which access to data is granted often vary by project, researcher, and data controller.

  • Glossary: Data Glossary

Data and Connectivity

An HDR UK National Core Study making data from all studies available and accessible to inform decision makers and catalyse COVID-19 research.

  • Glossary: HDRUK Portfolio Glossary

Data controller

A term used to describe an individual or organisation who determines the purposes for which and the manner in which any personally identifiable data is or will be processed. It is the responsibility of the Controller to ensure that any processing of personally identifiable data is lawful.

Data curation

A managed process, throughout the data lifecycle, by which data/data collections are cleansed, documented, standardised, formatted and inter-related. This includes versioning data, or forming a new collection from several data sources, annotating with metadata, adding codes to raw data. The goal of curation is to manage and promote the use of data from its point of creation to ensure it is fit for contemporary purpose and available for discovery and re-use.

Data management

The activities of data policies, data planning, data element standardization, information management control, data synchronization, data sharing, and database development, including practices and projects that acquire, control, protect, deliver and enhance the value of data and information.

Data science

The discipline of using data and advanced statistics to make predictions.

Data sharing

The disclosure of data from one or more organisations to another organisation or organisations, or the sending of data between different parts of a single organisation. This can take the form of routine data sharing, where the same data sets are shared between the same organisations for an on-going established purpose; and exceptional, one-off decisions to share data for a specific purpose.

Data standards

The rules by which data are described and recorded.

  • Glossary: Data Glossary

Data utlity framework

An HDR UK framework that defines, categorises and curates data in the Innovation Gateway.

  • Glossary: Data Glossary

DATA-CAN

An HDR UK Hub and UK-wide partnership that aims to unlock the power of health data to improve cancer care.

  • Glossary: HDRUK Portfolio Glossary

DataLab

EU funded organisation part-funding an MSc in Scotland.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

De-identified data

This is information that does not identify an individual, because identifiers or identifiable data have been scrambled or removed from the non-identifiable information about the person it relates to. However, the information is still about an individual person and so needs to be protected. It might, in theory, be possible to re-identify the individual if the data was not adequately protected, for example if it was combined with different sources of information.

Diagnostic test

A diagnostic test is an indicator or predictor of an illness state. As such, the term needs to be interpreted broadly as it includes diagnostic tests, screening, tests to stage disease, treatment monitoring, and estimate prognosis estimation.

Discover-NOW

An HDR UK Hub using NHS data from London and Manchester to support research to find ways to diagnose and treat disease.

  • Glossary: HDRUK Portfolio Glossary

Efficacy

The extent to which an intervention produces a beneficial result under ideal conditions. Clinical trials that assess efficacy are sometimes called explanatory trials.

Electronic health record (EHR )

Personal records which identify an individual (whether living or dead) and are held electronically.

eMERGE (eMERGE)

A National Human Genome Research Institute (NHGRI)-funded consortium tasked with developing methods and best practices for utilization of the electronic health record as a tool for genomic research.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Epidemiology

The study of population and community health, not just individuals.

Epidemiology

Study and analysis of the distribution (who, when, and where), patterns and determinants of health and disease conditions in defined populations. It is the cornerstone of public health, and shapes policy decisions and evidence-based practice by identifying risk factors for disease and targets for preventive healthcare. Epidemiologists help with study design, collection, and statistical analysis of data, amend interpretation and dissemination of results (including peer review and occasional systematic review). Epidemiology has helped develop methodology used in clinical research, public health studies, and, to a lesser extent, basic research in the biological sciences.

  • See also: Existing HDRUK glossary
  • Glossary: Science Glossary

Epidemiology and Surveillance

An HDR UK National Core Study collecting data to inform safe level of restrictions and protection against imminent outbreaks of COVID-19.

  • Glossary: HDRUK Portfolio Glossary

EPSRC (ESPRC)

Engineering and Physical Science Research Council is the main funding body for engineering and physical sciences research in the UK and one of HDR UK's core funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

EQUATOR Network

Enhancing the QUAlity and Transparency Of health Research refers to reporting guidelines for trial and study types.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

ESRC (ESRC)

Economic and Social Research Council is the UK’s largest funder of research on economic and social issues and one of HDR UK's funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

FAIR principles

FAIR is a set of guiding principles for data management and stewardship designed by stakeholders representing interests in academia, industry, funding agencies and scholarly publishers. The FAIR principles define a set of core enabling conditions which, if fulfilled for a given set of data, would ensure that they remain accessible and re-usable over the long term. 

False positive

Where a diagnostic test produces a negative test result when it should be positive.

  • Glossary: Science Glossary

Genomics England

Genomics England was set up to deliver the 100,000 Genomes Project. They aim to move towards a future of enabling faster, deeper genomic research, bringing genomic healthcare to all who need it

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Gut Reaction

An HDR UK Hub harnessing the power of health data to help identify the best treatment for each person with Crohn’s Disease or Ulcerative Colitis.

  • Glossary: HDRUK Portfolio Glossary

Health and Care Research Wales

Funded and overseen by the Welsh Government’s Division for Social Care and Health Research and is one of HDR UK's core funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Health and Social Care Research and Development (HSC R&D)

The (HSC R&D) Division is part of the Public Health Agency and is responsible for the administration and coordination of the HSC R&D budget on behalf of Department of Health, Northern Ireland - one of HDR UK's core funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Health data

Refers to data related to health conditions, reproductive outcomes, causes of death, and quality of life. Health data includes, for example: patient data, studies about the health of groups of people, data from blood or tissue samples, imaging data, and data from health and fitness devices.

  • Glossary: Data Glossary

Health data research (HDR)

A growing area of work and combines maths, statistics and technology to manage and analyse very large amounts of different datasets across our health and care systems. The information we get from health data research will enable us to make advances in healthcare.

  • Glossary: Science Glossary

Health Education England (HEE)

Health Education England supports the delivery of excellent healthcare and health improvement to the patients and public of England by ensuring that the workforce of today and tomorrow has the right numbers, skills, values and behaviours, at the right time and in the right place.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Hubs

HDR UK centres of excellence with expertise, tools, knowledge and ways of working to maximise the insights and innovations developed from the health data.

  • Glossary: HDRUK Portfolio Glossary

Identifiable data

Data containing identifiers which by itself or in combination with other data, enables an individual to be identified.

  • Glossary: Data Glossary

Identifier

An item of data, which by itself or in combination with other data, enables an individual to be identified.

Immunity

An HDR UK National Core Study on understanding immunity against Covid to inform back-to-work policies.

  • Glossary: HDRUK Portfolio Glossary

Impact

The contribution, effect on, or benefit that good research makes to knowledge, health, the NHS, health services, society or the economy.

Improving and Uniting the Data Delivery Group (IDG)

Ensures that HDR UK delivers all aspects of the infrastructure strategy, including the DIH Programme, implementation projects and capital investments.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Improving Public Health

An HDR UK National Priority to develop the capability to identify the things that cause ill-health in people, as well as the factors that result in improved health – no matter where they live or what their socioeconomic background – across the whole population of the UK.

  • Glossary: HDRUK Portfolio Glossary

Industrial Strategy Challenge Fund (ISCF)

Funding from UKRI and funds the Digital Innovation Hub Programme.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Information Commissioners Office  (ICO)

The Information Commissioners Office is the UK’s independent public body set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.

Infrastructure

As part of the delivery of the UK’s Life Sciences Industrial Strategy, the Government has committed £37.5m to make the UK home to data-driven research, scientific advances and innovation in healthcare to improve patient outcomes.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Innovative Medicines Initiative (IMI)

A public-private partnership aiming to speed up the development of better and safer medicines for patients.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Innovation Gateway

A common entry point provided by HDR UK to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the Alliance, such as a description, size of the population, and the legal basis for access.

  • Glossary: HDRUK Portfolio Glossary

INSIGHT

An HDR UK Hub focused on eye disease and its application to wider health, including diabetes and dementia.

  • Glossary: HDRUK Portfolio Glossary

Interim analysis

Analysis comparing intervention groups at any time before the formal completion of a trial, usually before recruitment is complete. Often used with stopping rules so that a trial can be stopped if participants are being put at risk unnecessarily. Timing and frequency of interim analyses should be specified in the protocol.

Interoperatbility

The capability to communicate, execute programs, or transfer data among various functional units in a useful and meaningful manner that requires the user to have little or no knowledge of the unique characteristics of those units. 

  • Glossary: Data Glossary

Intervention

The process of intervening on people, groups, entities or objects in an experimental study. In controlled trials, the word is sometimes used to describe the regimens in all comparison groups, including placebo and no-treatment arms.

Linked data

The merging of information or data from two or more sources, with the object of combining facts concerning an individual or an event, which are not available in any separate record.

Longitudinal Health and Wellbeing 

An HDR UK National Core Study using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies

  • Glossary: HDRUK Portfolio Glossary

Longitudinal study

A study that follows a group of participants over a period of time.

  • Glossary: Science Glossary

Machine learning

A process where a computer uses an algorithm to gain understanding about a set of data, then makes predictions based on its understanding. There are many types of machine learning techniques; most are classified as either supervised or unsupervised techniques.

Machine-readable

In a form that can be used and understood by a computer.

Medical Research Council (MRC)

Part of UK Research and Innovation, invests taxpayers’ money in some of the best medical research in the world across every area of health - one of HDR UK's core funders

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Meta analysis

Combining data from multiple independent studies. May be undertaken in evidence syntheses.

Metadata

Descriptions about data, for example how many records, quality of certain details, or where further information can be found. These are sometimes organised and made available in a catalogue for browsing by those interested in applying to access the data.

Metadata Catalogue (MDC)

The HDR UK Innovation Gateway stores dataset metadata in the service run by University of Oxford.

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

Minimal Viable Product (MVP)

A working prototype of a software/service that to get rapid user feedback

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

Morbidity

Illness or harm.

Multimorbidity

Patients with more than one disease or condition.

  • Glossary: Science Glossary

Multimorbidity Resource

An HDR UK National Implementation Project using data from 6 datasets to find out more about what diseases and conditions are found together, how they develop as people age and also which cause the most problems for people and the health service.

  • Glossary: HDRUK Portfolio Glossary

Mutlicentre trial

A trial conducted at several geographical sites. Trials are sometimes conducted among several collaborating institutions, rather than at a single institution - particularly when large numbers of participants are needed.

National Core Studies

An HDR UK programme comprising of 6 studies using health data and research to inform our long-term response to COVID-19 and accelerating progress in establishing a world-leading health data and research infrastructure for the future.

National Implementation Projects

An HDR UK programme of 5 UK-wide research projects are creating the tools and technologies needed to generate new knowledge from health datasets

National Institute for Health and Clinical Excellence (NICE)

Recommends which treatments should be provided by the NHS. NICE makes extensive use of evidence generated by the NIHR programmes.

National Institute for Health Research (NIHR)

Funded through the Department of Health to improve the health and wealth of the nation through research - one of HDR UK's core funders

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

National Priorities

An HDRUK programme of 6 scientific areas of strategic focus.

  • Glossary: HDRUK Portfolio Glossary

Natural Language Processing

(NLP)

The use of AI to process and analayze human language data.

  • See also: Existing HDRUK glossary
  • Glossary: Science Glossary

NHS Digital (NHSD)

Primary data custodian of the NHS

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

NHS Digitial

NHS Digital, formerly the Health and Social Care Information Centre is an executive non-departmental public body of the Department of Health. The organisation was re-branded as NHS Digital on 1 August 2016.

NHS DIgiTrial

Health Data Research Hub for Clinical Trials - https://www.hdruk.ac.uk/infrastructure/the-hubs/nhs-digitrial/

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

NHS DigiTrials

An HDR UK Hub focused on the development of a foundation service to improve the assessment of clinical trial feasibility – supporting improved planning and delivery of clinical trials in the UK.

  • Glossary: HDRUK Portfolio Glossary

NHSX (NHSX)

Unit leading digital transformation of health and social care in the NHS

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

NIHR Clinical Research Network (NIHR CRN)

Makes it possible for patients and health professionals across England to participate in clinical research studies, in both the NHS and in the wider health and social care environment.

Observational study

A study in which the investigators do not seek to intervene, but simply observe the course of events. There is a greater risk of selection bias than in experimental studies.

Open Access (OA)

Making scholarly content freely available via the Internet.

Open Science

The practice of science in such a way that others can collaborate and contribute, where research data, lab notes and other research processes are freely available, under terms that enable reuse, redistribution and reproduction of the research and its underlying data and methods. 

Outcome

A component of a participant's clinical and functional status after an intervention has been applied, that is used to assess the effectiveness of an intervention.

Output

Publically available results from a research project. HDRUK projects often generate pre-prints, journal publications, datasets, and software.

Participant

Patient, service user, carer, relative of the deceased, professional carer, other employee, or member of the public, who consents to take part in a study. (Under the Clinical Trials Regulations, participants in Clinical trial of an investigational medicinal product (CTIMP) are referred to as “subjects”.)

Patient data

Data that is collected about a patient whenever they go to a doctor or receive social care. It may include details about the individual’s physical or mental health, such as height and weight or detail of any allergies, and their social care needs and services received. It may also include next of kin information. 

Patient record

Personal records which identify an individual (whether living or dead) and which can be held electronically, in a paper file or a combination of both. 

Peer review

A reviewing process for checking the quality and importance of research outputs. An article submitted for publication in a peer-reviewed journal is reviewed by other experts in the area.

Persistent identifier (PID)

 A persistent identifier is a long-lasting reference to a digital object that gives information about that object regardless what happens to it. Developed to address "link rot," a persistent identifier can be resolved to provide an appropriate representation of an object whether that objects changes its online location or goes offline

Phase 1 trial

A clinical trial to study the pharmacology of an Investigational medicinal product (IMP) when administered to humans, where the sponsor and investigator have no knowledge of any evidence that the product has effects likely to be beneficial to the subjects of the trial.

Phenome

Human health characteristics.

  • Glossary: Science Glossary

Phenomics

Digital fingerprint of human disease state, related to biomarkers.

  • See also: Existing HDRUK glossary
  • Glossary: Science Glossary

Phenomics Resource

An HDR UK National Implementation Project developing new tools to help analyse Electronic Health Records (EHRs) and building a community among users of these data.

  • Glossary: HDRUK Portfolio Glossary

PIONEER

An HDR UK Hub integrating information about how acutely unwell people access and use health services to allow innovative healthcare companies to develop, test and deliver advances in clinical care.

  • Glossary: HDRUK Portfolio Glossary

Placebo

An inactive substance or procedure administered to a participant, usually to compare its effects with those of a real drug or other intervention, but sometimes for the psychological benefit of the belief of receiving treatment. Placebos are used in clinical trials to blind people to their treatment allocation. Placebos should be indistinguishable from the active intervention to ensure adequate blinding.

Power

The probability of rejecting the null hypothesis when a specific alternative hypothesis is true. In clinical trials, power is the probability that a trial will detect, as statistically significant, an intervention effect of a specified size. Ideally, we want a test to have high power.

Pre-print

Preliminary version of a research article that has not undergone peer review that is shared.

Principal Investigator (PI)

The investigator responsible for the research site. There should be one PI for each research site. In the case of a single-site study, the chief investigator and the PI will normally be the same person.

Prioritisation

Rigorously examining potential topics for research to identify their importance and where the need for new evidence is greatest.

Protocol

A document that describes the objectives, design, methodology, statistical considerations (or other methods of data analysis) and organisation of a research study.

Public and patient involvement and engagement (PPIE)

In research PPIE takes various forms, from involvement of public contributors in priority setting, representation on committees, and as reviewers.

Public health

Organised measure to promote health, prevent disease, and prolong life across a population.

  • Glossary: Science Glossary

Qualitative

Detailed subjective evaluation, used to capture views of individuals’ and groups.

Quantitative

Numerical evaluation of an intervention.

Randomised

Where people are randomly allocated to receive (or not receive) a particular intervention (this could be two different treatments or one treatment and a placebo). This is the best type of study design to determine whether a treatment is effective.

Randomised controlled trial

An experiment in which two or more interventions, possibly including a control intervention or no intervention, are compared by being randomly allocated to participants. In most trials one intervention is assigned to each individual but sometimes assignment is to defined groups of individuals (for example, in a household) or interventions are assigned within individuals (for example, in different orders or to different parts of the body).

Reproducible

Where the results of a research study could be obtained again using the same method.

  • Glossary: Science Glossary

Reproducible Machine Learning in Health Data Science

An HDR UK National Implementation Project to better enable machine learning e to provide trustworthy clinical insights from the enormous amounts of health data out there.

  • Glossary: HDRUK Portfolio Glossary

Research Ethics Committee (REC)

A Research Ethics Committee (REC) established in any part of the UK in accordance with GAfREC and/or recognised by the UKECA under the Clinical Trials Regulations.

Retrospective study

A study in which the outcomes have occurred before the study commenced. Case-control studies and cohort studies can be retrospective, but randomised controlled trials never are.

SAIL Databank

Secure Anonymised Information Linkage Databank - anonymised health and population data spanning up to 20 years about the population of Wales

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Sandbox

Projects that aim to test the applicability of the Gateway, Alliance and Hubs - https://www.hdruk.ac.uk/infrastructure/sandbox/

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

Service evaluation

Evaluation can be seen as a set of procedures to judge a pilot’s merit by providing a systematic assessment of its aims, objectives, activities, outputs, outcomes, and costs. Evaluation provides practical information to help decide whether a development or service

Setting

The research setting is the environment in which research is carried out. This could be a laboratory or a 'real' setting, such as the subject's working environment if you are conducting research into people's working lives.

Specificity

In screening / diagnostic tests this is a measure of a test’s ability to correctly identify people who do not have the disease.

Sprint Exemplars

Proof of Concept technology/methology projects to help inform the Digital Innovation Hubs programme - https://www.hdruk.ac.uk/infrastructure/sprint-exemplar-case-studies/

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

Statistically significant

A result that is unlikely to have happened by chance.

Substantive Sites

HDR UK Research Sites based in Cambridge, London, Midlands, North, Oxford, Scotland, South-West, Wales and Northern Ireland - https://www.hdruk.ac.uk/about/locations/

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

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.

Team science

An approach to research culture that aims to strengthen capability through a diverse and collaborative environment -- with an emphasis on Diversity, Equity, and Inclusion and well-being.

  • Glossary: HDRUK Portfolio Glossary

Text analytics

The use of AI to translate unstructured text into quantitative data.

  • Glossary: Science Glossary

Text Analytics Resource

An HDR UK National Implementation Project to establish a natural language processing (NLP) processing research community that will address the complexity of clinical text through development of shared tools and standards with inbuilt patient confidence and engagement, supporting joint working across industry, academia and the NHS

  • Glossary: HDRUK Portfolio Glossary

The Human Phenome

An HDR UK National Priority engaging data scientists, engineers and health data researchers to develop an online open-access, standards-driven library of complex health and disease characteristics (phenotypes) from diverse health data

  • Glossary: HDRUK Portfolio Glossary

Transmission and Environment 

An HDRUK UK National Core Study on understanding and mitigating transmission of the disease in workplace, transport and public places.

  • Glossary: HDRUK Portfolio Glossary

Treatment

The process of intervening with the aim of enhancing health or life expectancy. Sometimes, and particularly in statistical texts, the word is used to cover all comparison groups, including placebo and no treatment arms of a controlled trial and even interventions designed to prevent bad outcomes in healthy people, rather than cure ill people.

UK Biobank

UK Biobank is linking to a wide range of electronic health records (cancer, death, hospital episodes, general practice), and is developing algorithms to accurately identify diseases and their sub-sets. National and International health resource (and partner in Phenomics project)

  • See also: Existing HDRUK glossary
  • Glossary: Data Glossary

UK Research and Innovation (UKRI)

A non-departmental public body funded by a grant-in-aid from the UK government and funds the Digital Innovation Hub Programme

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Understanding Cause of Disease

An HDR UK National Priority using health data in its multiple forms to understand the causes of disease and discover new targeted treatments rather than just addressing symptoms.

  • Glossary: HDRUK Portfolio Glossary

Understanding the Cause of Disease (UCD)

Science Priority Area that sits under the Using the Data Delivery Group (UDG) - https://www.hdruk.ac.uk/research/research-priorities/precision-medicine/

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Using Multi-Omics to Determine Aetiology of Disease

An HDR UK National Implementation Project bringing together multiple cohorts and using advanced data methods to interrogate the complex data layers, going from genomics through multi-omics to health and disease outcomes.

  • Glossary: HDRUK Portfolio Glossary

Using the Data Delivery Group (UDG)

Ensures that HDR UK are using health data by performing research that individual institutions can not do themselves, encouraging early adoption, demonstrating impact at scale, and by training outstanding people.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

Wellcome

A global charitable foundation, both politically and financially independent and is one of HDR UK's core funders.

  • See also: Existing HDRUK glossary
  • Glossary: HDRUK Portfolio Glossary

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