Filter using phenotypes
Exciting new addition to the Innovation Gateway: you can now filter your results using phenotypes! When you search for a dataset for a condition, you can now refine the results by selected the associated phenotype.
Courses details now available
Details of lots of exciting courses now available on the Gateway. Click here to start exploring your learning opportunities.
NEW! Data access request form based on the 5safes
At HDR UK, we want to make access to health data a better experience for custodians and innovators alike. We have been using a collaborative approach to support a streamlined and harmonised approach to access requests and deliver high quality applications:
- based on the five safes
- with a clear public benefit
- in line with the Principles for Participation
On 11 August, we are releasing the first version of the new data access request form based on the ONS five safes.
Monthly drop-in - 27th August
Come and join us for Health Data Research Innovation Gateway monthly drop-in!
This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.
We will be running these sessions every last Thursday of the month, at 9am. The session will be recorded, but we encourage you to register and join us live so that you can ask your own questions and contribute.
The next one in on 27th August at 9am with the following agenda:
- Unmet needs: dashboard surfacing searches that do not yield results. This will enable us to understand missing information and try to source them.
- Key Performance Indicator (KPIs) dashboard
- Future development - dashboards
You can register here for this session.
We look forward to seeing you then!
Coming soon - Updated discussion forum
On 11th August we are releasing our updated discussion Forum. Come and join us and let us know what you think by leaving a comment.
Monthly drop-in Webinar - 30July
Join us for this virtual drop-in session on the Health Data Research Innovation Gateway
This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.
We will be running these sessions every last Thursday of the month, at 9am. The session will be recorded, but we encourage you to register and join us live so that you can ask your own questions and contribute.
Agenda:
9:00 – 9:05
- Introduction - Gerry Reilly, HDR UK CTO
9:05 – 9:20
- Update on our new Collection concept
- Discussion about the importance of metadata quality.
9:20 – 9:45
- Q&A: your opportunity to ask us anything, from how to upload a paper, to what our long term vision is for the Gateway
Please register here to receive the links to join the webinar closer to the time of the meeting.
The Gateway to world-leading health data research Guest Blog by Dr Jennifer Quint
Author: Dr Jennifer Quint
Guest Blog: Jenni Quint, Deputy Director of BREATHE, the Health Data Research Hub for Respitory Health
Health data research offers huge opportunities to transform health and care.
We are fortunate in the UK to have some of the best health data sets in the world, but they are often difficult to find, access and use. It’s not uncommon to hear researchers say they spend more time searching for and accessing potential datasets, than they do analysing them.
If we want to harness the full potential of health data, we need to streamline this process.
After experiencing issues whilst working in health data research myself, I’m excited to be involved in efforts to tackle the problem as Deputy Director for BREATHE.
Untangling the UK’s health data landscape
The Health Data Research Innovation Gateway is a real step forwards towards untangling the health data landscape in the UK, creating a one-stop shop for anyone looking to use health data in research. It provides a route to explore datasets, as well as tools and resources used in health research across the UK.
BREATHE is one of several teams populating the Gateway with information on a range of available health datasets. In doing this, we’re creating a directory of what’s available and limiting the chance of overlooking useful data – we’re making the data discoverable.
As a researcher, it’s incredibly useful to have all of this information in one place and in a similar format.
The Gateway makes it possible to compare and contrast between datasets, see how easy (or not) they are to access, find out what they contain and get a feel for how user friendly they might be. This potentially saves hours of time by having everything in one place.
It also becomes easier to spot opportunities to link datasets, leading to new research questions and further insights. The recently announced ‘Collections’ feature curates resources around a theme, housing datasets, papers, tools, people and projects relevant to a particular topic – all in one location.
Supporting the future of health data research
Health data research is a rapidly growing field. It’s important that, as well as enabling current research, we’re facilitating a better environment for the future. The Gateway can play an important role here.
It provides a way in for those who are new to the field, who need help finding what they want and knowing how to use it. Behind the datasets and information lies a wealth of additional expertise, ready to be tapped. Listings published by BREATHE, for example, are supported by seasoned data analysts and respiratory health experts able to provide advice and guidance.
There’s also the chance to participate in a community forum, with people from all backgrounds, stimulating ideas and discussing issues. Building an open and supportive network like this is crucial.
Removing barriers and creating opportunities
Another significant area for me, is the opportunity to link the Gateway in with the important phenotyping work being done to harmonise definitions across data sets.
Variations in how health information is recorded can be a real barrier to research. Using a standard set of identifiers, to describe things like symptoms and treatments, helps to ensure records are consistent and lays the groundwork for future research.
As the Gateway develops, we’re seeing more barriers lifted and opportunities created in the world of health data research. Speaking as both a collaborator and a user, there’s huge potential in its ability to stimulate world-leading research and innovation, which ultimately can improve health and care for all.
Partners join forces to establish an International Alliance
Many organisations across the world are conducting studies into the disease and generating data that, when aggregated and reanalysed, can lead to powerful insights that help accelerate discovery of interventions. However, the data are often siloed meaning it is difficult for researchers to share and collaborate quickly to leverage the expertise and capabilities of 21st century research and analysis. The International COVID-19 Data Research Alliance and Workbench will provide an environment for focused collaborative research, matching high value data from many sources with cutting edge analysis to accelerate collaboration, discovery and development of insights and treatments to combat COVID-19, all with privacy and accessibility in mind.
HDR UK Weekly COVID-19 Update
Our weekly updates highlight the range of projects members of the HDR UK community are working on to address the COVID-19 pandemic and global challenge. Read on to find out about the latest projects and areas of work.
Risk calculator developed to show how underlying health conditions can affect mortality rates in COVID-19 pandemic
Researchers at University College London, University College London NHS Trust, the University of Cambridge and Health Data Research UK have collaborated to find out how underlying health conditions could affect mortality rates during the COVID-19 pandemic.
Their health data study has revealed that having an underlying health condition, such as heart disease or diabetes, increases a person’s risk of death fivefold over the next year. The team have developed a prototype online ‘risk calculator’ to show how age, sex and underlying health conditions can affect mortality rates.
No clinical benefit from use of hydroxychloroquine in hospitalised patients with COVID-19
Professor Peter Horby and Professor Martin Landray, chief investigators of the RECOVERY Trial, said ‘In March this year, RECOVERY was established as a randomised clinical trial to test a range of potential drugs for COVID-19, including hydroxycholoroquine.
‘The trial has proceeded at unprecedented speed, enrolling over 11,000 patients from 175 NHS hospitals in the UK. Throughout this time, the independent Data Monitoring Committee has reviewed the emerging data about every two weeks to determine if there is evidence that would be strong enough to affect national and global treatment of COVID-19.