What can the Health Data Research Innovation Gateway tell you? 

The Health Data Research Gateway (the Gateway) is an online platform providing researchers with a simplified journey to search, discover and request access to health and health-related data and associated sharable resources from across the UK. The Gateway does not hold or store any health or patient data, nor does it approve users to access sensitive data for research. It allows researchers to see descriptions (metadata) of health datasets available in the UK so that they can request access to them for research. 

The Gateway was developed because there are thousands of health datasets in the UK that are separated and held by different organisations, making it hard for researchers to find out what is available. The Gateway helps to solve this problem through one website, letting researchers find and learn information about health datasets and related resources. They can then decide whether these datasets would be useful for their research and apply for access safely and securely to the Data Custodian (the organisation that holds and manages access to the data). A major new version of the Gateway was released in 2024, making it easier than ever for researchers to carry out important research to make innovative discoveries and improve people’s lives. 

A Dataset on the Gateway is summary information, or metadata (data about data), about a particular Dataset, not the data itself. Metadata published on the Gateway can be administrative, descriptive, structural, and technical. This information helps researchers decide whether the data itself would be useful for their research project and whether they would be eligible to access the dataset. 

The Gateway is mainly for researchers, innovators, and Data Custodians to discover and request access to health datasets. In order for the Gateway to have the confidence of everyone, including researchers, patients and the public, it is important to us that we involve different communities in our work. This help us ensure that the Gateway is a trusted and accessible tool, and that the site provides the information that everyone needs. The Gateway was created with input from patients, the public, researchers and innovators working in health and care in the UK. The Gateway is publicly accessible to anyone and provides information that supports trust and transparency in the use of health data for research across the entire community.  

Health Data Research UK is committed to its continued partnership with these groups as the Gateway is further developed and enhanced.  

Transparency on how health data is being used for research 

One of the most useful features of the Gateway for patients and the public is the ability to see how health data is being used securely for research in the public benefit. The Data Use Register provides the ability for anyone accessing the Gateway to search Data Uses across all of the Datasets registered on the Gateway and more and to understand the research question being asked. Data Uses can be filtered by Data Custodian, sector and lead applicant. To query the Data Use Register click here. 

Data Use Registers are a key component of improving transparency and trust in the use of health data for research – they allow patients and members of the public to see and feel confident in how patient data is being requested. They are also very useful for researchers and funders to see what datasets have been made available for research. The development of a Data Use Register standard is part of an ongoing project – led by the UK Health Data Research Alliance.  

Frequently asked questions 

How does the Gateway work, and how does in protect health data? 

You can think of the Gateway as a search-engine or ‘portal’ to help you find health Datasets that exist in the UK, but also associated health data resources such as software and Publications (academic papers). It does not hold any research data, instead it provides descriptions of health datasets. If a researcher finds a dataset that they think could be useful to their research, they can request access to view and use the information in that dataset for their work. This is a rigorous process by which their application is reviewed, and access will be granted or refused by the person or organisation responsible for the safety and security of the dataset. 

Does the Health Data Research Gateway hold my data, and can I be identified? 

No, the Gateway does not hold or store any Datasets or patient or health data, but rather acts as a portal to allow discovery of Datasets from their descriptions. Researchers can read these descriptions and then request access to the datasets. If they are granted access, they would use the health dataset through a Secure Data Environment (SDE) or Trusted Research Environment (TRE). Any health data held within a dataset does not show an individual’s health information (e.g. name or NHS number; it is de-identified). There are various safeguards in place to reduce the risk of data being re-identified. To learn more about identifiability, please see this Understanding Patient Data guide. 

Who can see health data on the Gateway? 

No one can see health data on the Gateway, but everyone can see the descriptions of health datasets on the Gateway. Only researchers or innovators with a registered account on the Gateway can request access to view the full information that is contained within a dataset. The Data Custodian responsible for the safe use of this dataset would make the final decision on whether to allow the researcher access to it. Access to the data is provided outside of the Gateway in a Secure Data Environment (SDE) or Trusted Research Environment (TRE).