“Trust, But Verify”: A Crucial Assessment of Idiopathic Pulmonary Fibrosis Clinical Coding in England


Expanding the Role of Clinical Coding in Healthcare Research

The use of clinical coding in healthcare is growing rapidly, offering significant benefits for epidemiological research. However, in conditions like idiopathic pulmonary fibrosis (IPF), the reliability of these codes for case finding warrants further examination. It’s not just about relying on the system—we must also validate its accuracy.

Background: The Importance of Validating Clinical Codes

Clinical coding converts complex diagnoses into standardised, searchable data. While codes have proven valuable for case finding in primary care, their efficacy in identifying cases of diseases like IPF, often managed in secondary care, remains less clear.

Method: Positive Predictive Value in Diagnostic Algorithms

In a recent study, Ann Morgan and her team used the UK’s Clinical Practice Research Datalink (CPRD) Aurum dataset to evaluate the positive predictive value (PPV) of eight diagnostic algorithms. These algorithms, rooted in IPF guidelines, combined clinical codes from primary and secondary care, with some incorporating additional clinical evidence.

Results: Ranges in Positive Predictive Values

The PPV of algorithms based solely on clinical codes ranged from 64.4% to 74.9%, varying by code specificity. Adding confirmatory evidence, like a CT scan, improved the PPV to 79.2%, albeit with a sensitivity drop below 10%. Including hospitalisation data further enhanced PPV but reduced sensitivity, highlighting the trade-off between diagnostic accuracy and sample size.

Evolution of IPF Coding Practices

Morgan’s team noted that IPF coding practices have evolved, with increased use of specific IPF codes, underscoring clinical coding’s adaptive nature.

Conclusion: The Necessity of Ongoing Validation

The study demonstrates that a limited, targeted set of IPF codes can achieve high diagnostic validity. Clinical coding is an essential link between clinicians and researchers, enabling efficient data access and analysis. Yet, as this study shows, not all codes are equal. Continued validation and vigilance are essential to balance diagnostic accuracy with sample size and usability.

Ultimately, the study reaffirms the value of clinical coding while emphasising the importance of continuous validation—it’s about trusting the system but always verifying its accuracy.

Sources:
Morgan, A., Gupta, R.S., George, P.M., & Quint, J.K. (2023). Validation of the recording of idiopathic pulmonary fibrosis in routinely collected electronic healthcare records in England. BMC Pulmonary Medicine, 23, 256.