https://orcid.org/0000-0003-0564-4000
Abstract
Background
Electronic health record (EHR) databases provide rich, longitudinal data on interactions with healthcare providers and can be used to advance research into respiratory conditions. However, since these data are primarily collected to support health care delivery, clinical coding can be inconsistent, resulting in inherent challenges in using these data for research purposes.
Methods
We systematically searched existing international literature and UK code repositories to find respiratory disease codelists for asthma from January 2018, and chronic obstructive pulmonary disease and respiratory tract infections from January 2020, based on prior searches. Medline searches using key terms provided in article lists. Full-text articles, supplementary files, and reference lists were examined for codelists, and codelists repositories were searched. A reproducible methodology for codelists creation was developed with recommended lists for each disease created based on multidisciplinary expert opinion and previously published literature.
Results
Medline searches returned 1126 asthma articles, 70 COPD articles, and 90 respiratory infection articles, with 3%, 22% and 5% including codelists, respectively. Repository searching returned 12 asthma, 23 COPD, and 64 respiratory infection codelists. We have systematically compiled respiratory disease codelists and from these derived recommended lists for use by researchers to find the most up-to-date and relevant respiratory disease codelists that can be tailored to individual research questions.
Conclusion
Few published papers include codelists, and where published diverse codelists were used, even when answering similar research questions. Whilst some advances have been made, greater consistency and transparency across studies using routine data to study respiratory diseases are needed.
Acknowledgments
SAIL team for creating the website pages.
Author Contributions
JKQ conceptualised the study and all authors contributed to study design, searching the literature and collating and deriving recommended codelists. CM, HW and MM drafted the original manuscript, with critical revision of the manuscript by all authors. All authors approved the final manuscript. All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. The corresponding author is also the guarantor for this manuscript and accepts full responsibility for the work, had access to all the data and was responsible for the decision to publish.
Disclosure
CM, HW, MM, LD, AM, CI, MA, EV, EOR, ATW, PWS have nothing to declare. JKQ reports grants from AUK-BLF, The Health Foundation, MRC, grants and personal fees from AZ, BI, GSK, Bayer, grants from Chiesi, outside the submitted work. AS reports grants from AUK-BLF and HDR UK.