Data access requests

The number of enquires and requests to access datasets that have been made through the Gateway.

Courses

A list of training and career development resources shared on the Gateway related to health data science.

Cohort Discovery

The Cohort Discovery search tool is an advanced search functionality on the Gateway, allowing users to search across multiple datasets to find cohorts, or groups, of subjects with specific characteristics, for example: females aged 18-30 who do not smoke and live in England.

A Collection groups together health data resources listed on the Gateway, such as tools, datasets and data uses, around a particular topic.

A dataset is a collection of data. On the Gateway, this means summary information, or metadata, about a particular dataset, not the the data itself.

Data and Connectivity

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

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

Data custodian

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 custodian to ensure that any processing of personally identifiable data is safe and secure. Other terms for a data custodian include a data controller or data steward.

Data use

How datasets published on the Gateway are being used, by whom and for what purpose.

Data Use Register

A public record or list of data uses approved for research by data custodians, helping to improve trust and transparency in the use of health data for research. Visit the Gateway data use register.

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

Personal data relating to the physical or mental health of an individual or population, including the provision of health care services, which reveals information about their health status.

Health data research

A multidisciplinary area of research that gathers, analyses and links information about people and their health to enable advances in healthcare for all.

Health Data Research Hubs

HDR Hubs are centres of excellence with expertise, tools, knowledge and ways of working to maximise the insights and innovations developed from the health data. Working in partnership with HDR UK, each Hub is a collaboration between the NHS, academia, industry and the public and forms an integral part of the vibrant UK research data ecosystem.

An individual or group who use health data to make discoveries that lead to patient benefit, for example: academic researchers, clinicians, health data scientists, healthcare professionals, industry research scientists

Data that provides information about other data, not the content of the data but administrative, descriptive and structural metadata. Each dataset published on the Gateway has metadata associated with it which helps users decide whether it would be useful for their research project and whether they would be eligible to access the dataset.

Metadata quality score

The amount of information (metadata) available about a dataset on the Gateway, rated from bronze to platinum. This is not a measure of the quality of the actual datasets.

A programme of six studies initiated in October 2020 as part of the UK's long-term response to COVID-19.

Academic research publications within the field of health data research that can be listed on the Gateway and linked other resources.

Patient data

Medical information about an individual, for example: past and present illnesses, treatment history, lifestyle choices, genetic data, social care needs, height and weight, allergies, etc.

People

Registered Gateway users.

Resources available on the Gateway that are useful for health data research, such as code, software, apps and infographics. Search Gateway tools.

Trusted Research Environments

Highly secure computing spaces that provide remote access to health data for approved researchers. Trusted Research Environments (TREs) can also be called Data Safe Havens and Secure Data Environments.

UK Health Data Research Alliance

An independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. The Alliance is convened by HDR UK and its members list their dataset on he Gateway.