Health information exchange (HIE) is the sharing of clinical and administrative data across the boundaries of health care institutions, health data, repositories, and states that could constitute a major novel source of clinical data for living kidney donor (LKD) follow-up and longitudinal outcomes research.

Methods: Using a novel text-mining approach involving both administrative codes and plaintext clinical notes, we attempted to identify a cohort of LKDs using electronic health records from a population of ~9 million patients pooled from 63 hospitals in a statewide HIE. We refined our cohort by excluding patients based on OPTN data by age at time of donation and center counts by donation date. Pearson's correlation coefficient was calculated. Figure 1 illustrates how our samples were identified and refined.

Results: Table 1 shows LKD counts from our cohort compared to OPTN yearly counts. We discovered a cohort of 1,245 LKDs in the HIE with donation between 1998-2014. Our HIE derived cohort showed high correlation with OPTN yearly counts (r= .948).

Conclusions: We successfully identified a large, representative cohort of LKDs using shared electronic health records stored in an HIE. Implications include the ability to develop novel cohorts for matched control studies and longitudinal eGFR analyses.

CITATION INFORMATION: Henderson M, Roberts A, Massie A, Segev D, Goggins W, Stone C, Dixon B. Protocol for Health Information Exchange Living Donor Cohort Discovery. Am J Transplant. 2016;16 (suppl 3).

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