Two years of the Health Data Research Innovation Gateway
22 May 2022 | Author: Ruth Milne, Communications Manager, Infrastructure and Services
Earlier this year, we recognised two years of the Health Data Research Innovation Gateway. Funded by UK Research and Innovation's (UKRI) Industrial Strategy Challenge Fund and delivered in partnership with the UK Health Data Research Alliance, the Gateway is the UK’s only unified platform to search, discover and request access to health data sets for research and innovation. In this post, we look back at some of the Gateway’s key milestones to date.
Why was the Innovation Gateway created?
The UK is home to some of the richest health information in the world, but the data are held by thousands of different organisations across the country so it can be difficult for researchers to find out what datasets exist and how they might be useful for their research.
The Health Data Research Innovation Gateway (the Gateway) was established in 2020 to provide a common entry point for researchers to search, discover and request access to health datasets in the UK. Its development is funded through UKRI’s Industrial Strategy Challenge Fund and delivered in partnership with the UK Health Data Research Alliance, the Health Data Research Hubs and providers of Trusted Research Environments across the UK.
The Gateway does not hold or store any datasets or patient or health data but rather acts as a portal for discovery by listing associated information about each dataset (the dataset’s metadata) which can help researchers decide whether a particular dataset could be useful for their work.
Uniting health data in this way – making it easier to discover and access – enables ground-breaking research to be carried out more effectively so that improvements in clinical care can reach the patient faster.
To date, over 750 datasets from 60+ data custodians have been made available on the Gateway, and more than 2000 people from across the health data community are registered users able to request access to datasets for research via the Gateway.
Discover the most viewed datasets on the Gateway so far
But how did we get here?
From MVP to 500 Gateway datasets
At the start of 2020, the Gateway minimum viable product (MVP) was launched with summary metadata for over 400 datasets. This was in partnership with:
- IBM – responsible for the front-end portal
- The University of Oxford – provided a metadata catalogue
- Metadata Works – metadata specification and onboarding support
- UK Health Data Research Alliance and the Health Data Research Hubs – to enable the discovery of UK health data assets
The Gateway MVP built upon the work of a pre-existing analogous platform, Health Data Finder, funded by the National Institute for Health Research.
Later that year, through a rigorous and open selection process with external representation and patient and public involvement, PA Consulting were assigned to co-develop the next phase of the Gateway journey with HDR UK and our partners. This involved the creation of a user-friendly portal with built-in reporting dashboards, the integration of the Five Safes framework into the data access request module and making datasets more discoverable by curated Collections and improvements to metadata onboarding (see: Phenotype Library and Data Utility Framework).
During this time, we also shifted our focus to offering a discovery platform for a selection of health data research entities (including, people, papers, tools and training courses) rather than a datasets-only approach.
By the end of 2020, the number of datasets available for researchers to search and request access to via the Gateway reached 500.
Explore the Gateway metrics dashboard – updated daily
Pivoting to support the pandemic
The launch of the Gateway and its initial development phase coincided the COVID-19 pandemic. Health Data Research UK, as the national institute for health data science, working with our partners, swiftly became central to the UK’s COVID-19 response, helping to focus research efforts and accelerate access to data assets and expertise that we are so lucky to have in this country.
The development of the Gateway, of course, pivoted to support this vital work, rapidly onboarding relevant datasets, tools, publications and projects – it’s no surprise that some of the most viewed datasets on the Gateway are related to the COVID-19 pandemic.
A major undertaking for the Gateway during this time was streamlining access to priority linked datasets through Trusted Research Environments via the Data and Connectivity Programme – part of the National Core Studies initiative setup by the government, and funded by UKRI, to support and accelerate the UK’s research response to COVID-19.
View the National Core Studies dashboard
The Gateway – 2021 to now
Throughout 2021, COVID-19 resources continued to be added to the Gateway which inevitably shifted towards vaccine-related datasets including vaccination status and adverse reaction data from NHS Digital.
The Gateway enabled a new linked health data resource covering 54.4 million people to be discoverable for research as a result of the work undertaken by the CVD-COVID-UK Consortium, managed by the British Heart Foundation Data Centre. This resource is enabling researchers to better understand the relationship between COVID-19 and cardiovascular disease, with the aim of improving treatments and care for patients.
Learn more about the CVD-COVID-UK linked datasets
In April 2021 an exciting new functionality launched on the Gateway: Cohort Discovery. Delivered in partnership with CO-CONNECT and funded by UKRI, the tool allows researchers to search by specific population criteria across multiple datasets, widening the data discovery capabilities of the Gateway even further and facilitating a faster pathway to impactful research that will ultimately improve people’s lives. Eleven Gateway datasets are now available for researchers to discover using Cohort Discovery – the latest being the COVIDsortium study from University College London. More to follow so watch this space!
Learn more about Cohort Discovery
During 2021, additional improvements were made on the Gateway to support data discovery with the release of the Data Utility Wizard. The tool allows researchers to search for and discover datasets listed on the Gateway using specific criteria and filters, using a simple, user-friendly interface to help narrow the search via a series of simple questions.
More recently, the focus has been on the development of a data use register, supported by members of the Alliance and our patient and public advisors, the first version was released earlier this year. This new feature publicly displays how datasets listed on the Gateway are being used for research, including who by and for what purpose – more than 800 data uses have already been uploaded to the Gateway.
View the Gateway Data Use Register
What’s next for the Innovation Gateway?
That’s the subject of our next post later in the week!
Visit the HDR UK Innovation Gateway
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Establishing the Health Data Research Innovation Gateway
9 July 2019
Improving access to data for research and innovation is central to our mission at Health Data Research UK. Whilst there are some exceptional examples in the UK of infrastructure to support...
Health Data Research UK launches transformational new search functionality
26 April 2021
New “Cohort Discovery” tool allows health researchers to search for and assess data to discover research-specific population cohorts across multiple datasets.