Validity of Physician Billing Claims to Identify Deceased Organ Donors in Large Healthcare Databases

OBJECTIVE: We evaluated the validity of physician billing claims to identify deceased organ donors in large provincial healthcare databases. METHODS: We conducted a population-based retrospective validation study of all deceased donors in Ontario, Canada from 2006 to 2011 (n = 988). We included all registered deaths during the same period (n = 458,074). Our main outcome measures included sensitivity, specificity, positive predictive value, and negative predictive value of various algorithms consisting of physician billing claims to identify deceased organ donors and organ-specific donors compared to a reference standard of medical chart abstraction. RESULTS: The best performing algorithm consisted of any one of 10 different physician billing claims. This algorithm had a sensitivity of 75.4% (95% CI: 72.6% to 78.0%) and a positive predictive value of 77.4% (95% CI: 74.7% to 80.0%) for the identification of deceased organ donors. As expected, specificity and negative predictive value were near 100%. The number of organ donors identified by the algorithm each year was similar to the expected value, and this included the pre-validation period (1991 to 2005). Algorithms to identify organ-specific donors performed poorly (e.g. sensitivity ranged from 0% for small intestine to 67% for heart; positive predictive values ranged from 0% for small intestine to 37% for heart). INTERPRETATION: Primary data abstraction to identify deceased organ donors should be used whenever possible, particularly for the detection of organ-specific donations. The limitations of physician billing claims should be considered whenever they are used.