The digitization of patient records is one of those basic building blocks in the improvement of healthcare that one would imagine had been done years ago.  I wrote earlier this year however about a study that was critical of the apparently glacial state of progress on the matter.

The analysis, which is believed to be the first of its kind, examines the progress made in transferring patient records to digital, and shows a complex picture best by poor understanding of IT implementation and an underestimation on the kind of changes digitization would bring.  If nothing else, the review reminds us of the complexities inherent in implementing health technology.

Sadly, a recent study from Swansea University suggests the data held in records that are digitized is often not especially useful.  The research examined the recording of asthma diagnosis and events in electronic patient records across the world, and how such data is used in medical research.

Recording of asthma

The study analyzed various approaches to define asthma, asthma severity, control and exacerbation from electronic health records around the world and found considerable variability and inconsistencies.

The variations found were not purely down to differences in data used but also a lack of any real consensus on how asthma is clinically defined.  This has a big impact not only on patient outcomes but on research that often relies on the data contained in medical records.  With no real standard way of identifying an asthma patient from their medical records, it makes the reproducibility and robustness of the research rather weak.

The authors urge a more robust understanding of the kind of data held in electronic records, and especially its clinical definitions and algorithms.

“If we are to learn about asthma, it’s absolutely crucial that we have better and more consistent reporting of the data,” the authors say.

“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,” Asthma UK say.  “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.”

A new body, called Health Data Research UK, has been established to try and provide the robustness of standards needed to make research more effective.  The Institute will develop the capacity (people and skills) and methods to accelerate the pace and scale of health and biomedical data science to deliver a step change in UK capabilities.