Background: The United Network for Organ Sharing (UNOS) holds an exclusive federal contract as the Organ Procurement and Transplantation Network (OPTN) to allocate deceased donor organs and certify transplant centers. To do this, UNOS collects data on transplant candidates being listed for transplant, as well as donors & recipients at the time of transplant and during follow-up. This places an administrative burden on transplant centers for which they are not directly compensated. As a federal contractor, UNOS is required to provide an accurate estimate of this burden under the Paperwork Reduction Act (PRA). Previous reviews of UNOS PRA filings demonstrate that they have repeatedly underestimated this burden, by their own admission. This study examines the accuracy of current UNOS estimates by comparing the true burden at selected transplant centers to the official UNOS estimate for each center.

Methods: 15 US transplant centers reported the total time and cost burden of UNOS data submission and the number of each type of data collection form submitted in 2010 and 2011. Total time, cost, and calculated hourly cost for each center was compared to the official UNOS estimate for time, cost, and hourly cost for that volume of forms. Aggregate differences were analyzed for significance.

Results: The total time burden, cost burden, and hourly cost burden were significantly underestimated by UNOS in both 2010 and 2011 (p<.01 for each metric in each year). Total time burden was 250% of the estimate for both 2010 and 2011. Total cost burden was 381% of estimate in 2010 and 398% in 2011. Hourly cost burden was 145% of the estimate for 2010 and 154% for 2011. If these centers are representative of all transplant centers in the United States, UNOS may have underestimated the national burden of transplant center data submission by 248,514 hours and $12,561,714 in 2010, and 274,183 hours and $14,315,002 in 2011.

Conclusions: In the participating centers, UNOS significantly underestimates the administrative burden it places on transplant centers. Federal healthcare reform efforts and competitive pressure from private payers are expecting healthcare providers to provide better care at a lower cost. Policymakers are suggesting the OPTN collect more data for improved assessment of transplant center quality. Accurate knowledge of the actual costs is essential to inform policymakers considering changes to data collection forms, and to allow transplant centers to allocate resources & negotiate reimbursement.

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