This year’s Annual Scientific Meeting (ASM) of the Asthma UK Centre for Applied Research (AUKCAR) was held in Swansea’s Brangwyn Hall in late April 2023. The theme of this year’s ASM was ‘Big data – its implications and use in asthma care’. Invited speakers gave presentations about how big data can be applied to asthma research and its potential for future applications.
The Wales Asthma Observatory (WAO) is one of 13 Centre’s of Excellence at Population Data Science at Swansea University Medical School and is funded by Health and Care Research Wales and Swansea Bay University Health Board. It was developed to explore the effects of asthma on patients in Wales to improve treatments and care quality. The WAO includes a cumulative cohort of Welsh asthma patients, totalling over 470,000 people with ever-diagnosed and treated asthma.
Together with other asthma observatories from all four UK nations, WAO feeds into the AUKCAR and supports a UK-wide research endeavour examining incidence, outcomes, healthcare events and treatments related to asthma. AUKCAR provides a platform for high-quality clinical research that informs health service delivery for asthma patients.
Reflections from the AUKCAR Annual Scientific Meeting:
The big data landscape.
Chris Orton, from SAIL Databank, spoke to AUKCAR members about the current UK Big Data landscape and the opportunities for working with big data.
Chris described the mixed approach taken across the four nations in the systems for sharing deidentified data and their governance. Since healthcare is a devolved matter in the UK, data is available from different types of organisations in each region, ranging from Trusted Research Environments (TREs) in regional areas like DataLoch for the Lothians, to national public health bodies such as NHS England. These data typically come from NHS and/or administrative records. There are also organisations such as the UK Longitudinal Linkage Collaboration (UKLLC) which combines data from a cohort with NHS records.
Processes for researchers to be able to access this data for study purposes can include applying through an independent panel, or an NHS review as well as potentially applying for ethics approval.
In short, researchers looking for UK-wide data on a topic could spend a lot of time accessing data for it to then be in different coding systems, with different variables, different languages, different formats and file types.
Despite the difficulties, Chris explained that there are options for researchers working with big data.
Comparing data, nations, populations and using replicated analytical methods will enhance the strength and coverage of research, which will benefit patients in the long run. National efforts to improve data will make it more efficient for various research endeavours. Examples of these improvements include the BREATHE Data Hub, Health Data Research (HDR) UK Driver Programmes, Administrative Data Research (ADR) UK, and TREs.
SAIL Databank is a TRE which hosts NHS, social care and other administrative datasets on the population of Wales. Because their data is incredibly large scale, cohorts in disease areas including asthma have been curated. This means that research activity can be increased, reducing the burden of data curation on researchers.
Dr Rich Fry from the Environment and Health Research Centre at Population Data Science, Swansea University, then continued to discuss the linking of data sets. Rich’s work models Welsh household characteristics like noise and air quality exposures, access to greenspace, unhealthy food environments and vaccinations. He then links this data into the SAIL Databank, which can then show changes over time in terms of how the natural environment and local and national policy interventions can influence the health of a population. An example of this was how he used his research to assess the impact of the UK Government’s Supported Housing Improvement Programme. Rich’s work is giving policy makers the key information that they need to be able to make policy changes driven by the population themselves.
The Centre members then discussed big data in a workshop, debating the ethical considerations and the strengths and limitations. There are many researchers in the Centre who were in the room that are using big data on a regular basis. It is a theme of research in the Centre which will only continue to grow. AUKCAR members look forward to seeing what national and UK-wide answers can be found from big data research in the future!