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.
BREATHE – The Hub for Respiratory Health
BREATHE was a unique collaboration, which enabled the use of respiratory health data in cutting-edge research and innovation, to address conditions such as asthma and COPD.
Meet the Hubs: BREATHE – The Health Data Research Hub for Respiratory Health
1 October 2019
Guest Blog: Professor Aziz Sheikh, BREATHE Hub Director and Dr Jenni Quint, BREATHE Hub Deputy Director and Clinical Lead