Electronic health records are a rich source of large scale, real world data. Their use in research can transform what we know about respiratory conditions, leading to improvements in diagnosis, treatment and care.

BREATHE is supporting others to harness the power of electronic health records for pioneering respiratory research, through the development of code lists.

Huge potential, but barriers exist

When a patient visits their doctor, information on their health (from symptoms, to test results, diagnoses and prescriptions) is securely recorded in electronic health records. This information is regularly updated and can cover long periods of time, creating an important source of information for research.

Despite their huge potential, the use of electronic health records in research is not straightforward.

Medical professionals use clinical codes to log information about patients in a standardised way. However, it’s not as simple as having one code for one disease. There are often a number of codes used to describe a condition – this is a particular issue across respiratory health.

BREATHE expertise will support others

The choice of which codes to use in a study requires clinical and epidemiological expertise and knowledge about data quality and their source.

Led by Professor Jenni Quint, BREATHE is developing a series of publicly available respiratory code lists, to help researchers find up to date, relevant codes. This also includes the creation of a recommended list, to guide researchers as they formulate code lists for their analysis.

Phenotypes and code lists are available on the recently updated HDR UK Phenotype Library, which also includes information related to other disease areas.

Visit the HDR UK Phenotype Library

Enabling high quality future research

The team have initially focused on asthma, chronic obstructive pulmonary disease (COPD) and respiratory infections (pneumonia, acute bronchitis, aspergillosis, acute bronchiolitis), with a view to expanding to other respiratory conditions.

By producing code lists across key respiratory conditions, BREATHE is taking steps to enable the use of electronic health record data in quality health research, encouraging transparency and reproducibility.

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