We need improved quality of recording asthma diagnosis and events if the UK is to effectively use the very considerable potential locked within electronic health records to promote improvements in asthma care and catalyse research.
Researchers from Swansea University Medical School and the Asthma UK Centre for Applied Research have today cautioned that improved and consistent reporting of studies is needed to ensure that we answer important questions about asthma, one of the commonest chronic conditions.
Nearly 10% of the UK population has a recorded diagnosis of asthma, accounting for almost 100,000 hospital admissions and over £1 billion annual healthcare expenditure.
In a study published today in the European Respiratory Journal, one of the world's leading respiratory journals, Al Sallakh et al. examine international approaches used to define asthma, asthma severity, control and exacerbation from electronic health records (EHR) in the recent academic literature.
The researchers found wide variations and inconsistencies in these methods across studies and little evidence to support the validity of algorithms used.
These variations reflect not only the differences in the data used, but also, a fundamental lack of consensus on the clinical definitions of asthma and its outcomes. There is a growing number of studies internationally that use EHR data to study conditions including asthma, but no standard methods for identifying and assessing asthma patients from EHR exist. The researchers caution that validity, transparency and reproducibility of research is compromised unless action is taken.
Given the substantial growth in research that uses EHR data, the authors emphasise the need for reaching scientific consensus on asthma clinical definitions and algorithms, and adoption of reporting standards to improve the validity and reproducibility of research using these data.
Dr Gwyneth Davies, Respiratory Consultant and senior researcher at Swansea University Medical School, said, "If we are to learn about asthma, it's absolutely crucial that we have better and more consistent reporting of the data."
The newly established Health Data Research UK will be well placed to harmonise the underlying definitions and algorithms used in research using EHR data as it is very likely that similar issues will also be found in other disease areas.
Professor Andrew Morris, Director of Usher Institute, University of Edinburgh, said, "The UK has an opportunity to provide an international leadership role to develop and agree standards for health and biomedical data science. This research highlights the need for agreeing standards for both methodologies and reporting as we accelerate the pace and scale of data science in the UK."
Dr Samantha Walker, (Director of Research & Policy and Deputy Chief Executive, Asthma UK): "This study highlights a long known problem and one that desperately needs to be resolved. The data held on electronic health records has the potential to be of great value to asthma research, our overall understanding of asthma development, and development of new treatments. However, wide variations in how asthma is defined and recorded mean that these data sets are difficult to use for these purposes.
"As electronic health records become more widely used, it is vital to ensure all the information is defined and collected in a consistent manner so that we can have confidence in it. Until this happens we are missing opportunities to understand asthma fully and make improvements in asthma care."
The study and its recommendations, which will be essential reading for researchers, NHS leaders and policy makers, has been published in European Respiratory Journal today.
- The research paper "Defining asthma and assessing asthma outcomes using electronic health record data: a systematic scoping review" has been published today in the European Respiratory Journal.
Link to the paper: https://doi.org/10.1183/13993003.00204-2017
- The research was funded by Health and Care Research Wales and ABMU Health Board and was supported by Asthma UK Centre for Applied Research and The Farr Institute.
- Mohammad Al Sallakh's blogpost on this research can be found at http://www.aukcar.ac.uk/article/electronic-health-record-studies
- For more information on Asthma UK go to http://www.asthma.org.uk/
- The Asthma UK Centre for Applied Research focusses on improving treatment and care for people living with asthma.
A collaborative venture between universities from across the UK, Asthma UK, people affected by asthma, healthcare professionals, NHS partners and other organisations, the Asthma UK Centre for Applied Research brings together leading UK clinical and non-clinical researchers from a variety of specialities including behavioural sciences, respiratory physiology, clinical trials, health economics and implementation research.
This UK-wide collaboration is led by Directors Professor Aziz Sheikh of the University of Edinburgh, and Professor Chris Griffiths of Queen Mary University of London.
- For more information on The Farr Institute go to http://www.farrinstitute.org The Farr Institute is a UK-wide research collaboration involving 21 academic institutions and health partners in England, Scotland and Wales. Publically funded by a consortium of ten organisations led by the Medical Research Council, the Institute is committed to delivering high-quality, cutting-edge research using 'big data' to advance the health and care of patients and the public.
- For more information on Health Data Research UK go to http://www.mrc.ac.uk/about/institutes-units-centres/uk-institute-for-health-and-biomedical-informatics-research/
- Swansea University Medical School, established in 2004, is an internationally-recognised centre of excellence in medical research, education and innovation. The Medical School has three main activities: learning and teaching, research, and business and innovation. Read about the history of the Medical School at http://www.scribd.com/doc/235047725/History-in-the-Making-College-of-Medicine-Swansea-University-10th-Anniversary-2004-2014
Swansea University Medical School has had spectacular success in the Research Excellence Framework (REF) 2014. Achievements include; joint 1st in the UK for research environment rated as 100% world-leading and 2nd in the UK for research quality in our unit of assessment, scored 100% world-leading in terms of impact and 95 % of the research submitted was assessed as world-leading (54%) or internationally excellent (41%) Find out more about the REF2014 results at https://www.scribd.com/doc/250478133/College-of-Medicine-results-in-the-Research-Excellence-Framework-REF-2014
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- Swansea University is a world-class, research-led, dual campus university. The University was established in 1920 and was the first campus university in the UK. It currently offers around 350 undergraduate courses and 350 postgraduate courses to circa 20,000 undergraduate and postgraduate students.
The University's 46-acre Singleton Park Campus is located in beautiful parkland with views across Swansea Bay. The University's 65-acre science and innovation Bay Campus, which opened in September 2015, is located a few miles away on the eastern approach to the city. It has the distinction of having direct access to a beach and its own seafront promenade. Both campuses are close to the Gower Peninsula, the UK's first Area of Outstanding Natural Beauty.
Swansea is ranked the top university in Wales and is currently The Times and The Sunday Times 'Welsh University of the Year'. It is also ranked within the top 350 best universities in the world in the Times Higher Education World University rankings.
The results of the Research Excellence Framework (REF) 2014 showed the University has achieved its ambition to be a top 30 research University, soaring up the league table to 26th in the UK, with the 'biggest leap among research-intensive institutions' (Times Higher Education, December 2014) in the UK.
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European Respiratory Journal