Key Terms Glossary

The following provides an explanation of some of the key terms used in the Gateway. For plain English explanations of other phrases used in health data research, please refer to the data glossary provided by Connected Health Cities.

Term Definition
Access request/Data Access Request This statistic on the Gateway tells you the number of requests to access datasets that have been made through the Gateway.
Collection Gateway collections group together health data resources listed on the Gateway (such as tools, datasets and projects) around a particular topic.
Dataset A dataset is a collection of data.
Data and Connectivity

A Health Data Research UK (HDR UK) National Core Study making data from all studies available and accessible to inform decision makers and catalyse COVID-19 research.

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.
Data custodian/Data controller A term used to describe an individual or organisation who controls the purposes for why and how any health data is accessed and used for research. It is the responsibility of the Controller to ensure that any processing of personally identifiable data is safe and lawful.
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 Utility Framework

The Data Utility Framework scores datasets on 5 categories and a range of dimensions, and is used to refer to the usefulness of a dataset for a given purpose. Each dataset on the Gateway has a data utility tab with its rating.

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
Health Data Research

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.

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.

Innovator Any one who can use health data to make discoveries that lead to patient benefit i.e researchers, clinicians, health data scientists, industry researchers
Metadata Descriptions and information about data, for example how many records, quality of certain details, or where further information can be found. Each dataset listed on the Gateway has metadata associated with it which can help users decide whether it would be of use to their work and whether they would be eligible to access the dataset.

Metadata quality

The Gateway calculates metadata quality scores for datasets listed on it. This helps users easily see the quality of a dataset’s metadata- displayed as Platinum, Gold, Silver, Bronze or Not rated. You can see how the score is calculated here.

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.

Papers

Papers listed on the Gateway are academic research publications that relate to health data.

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.
Projects

Projects listed on the Gateway are current health data research projects that are being undertaken by researchers.

Tools

Tools listed on the Gateway are tools that can help health data analysis for research.

Trusted Research Environment/Safe Haven Trusted Research Environments, also known as ‘Data Safe Havens’, are highly secure spaces for researchers to access sensitive data. They are based on the idea that researchers should access and use data within a single secure environment. In other words: users go to the data, the data doesn’t travel to them. Trusted Research Environments have multiple layers of security and safeguards in place, designed to minimise the risk of anyone’s data being misused.
UK Health Data Research Alliance

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. Alliance members have listed their datasets on the Gateway.