The OPTN Ad Hoc International Relations Committee (IRC) has been busy reviewing data over the last year, as it prepares to release its first annual report at the June 2014 Board of Directors meeting. In preparation for the first report, the Committee wants to share information with you about the genesis of the report and the data used to create it.
Background
Several years ago the Committee began reviewing OPTN policies related to the transplantation of non-resident aliens. As part of that review they examined the citizenship data being collected both on donors and transplant candidates. These data are collected on transplant candidates at the time of listing on the Transplant Candidate Registration (TCR) form, on living donors on the living donor registration (LDR) form, and on deceased donors on the deceased donor registration (DDR) form. The categories at that time included US Citizen, Resident Alien, and Non-Resident Alien. The category of non-resident alien was the one referenced in policy. Policy in place at that time included a guideline that for each program, less than 5% of deceased donor transplants should go to recipients in that citizenship category.
A review of those categories as defined in policy determined that the definitions did not allow for proper categorization of undocumented non-US citizens living in the US. Additionally, the categories did not allow for the identification of those patients coming to the US specifically for a transplant. It was this group of patients that the IRC wanted to better understand. Based on that discussion, the Committee developed new categories for the collection of citizenship data.
Based upon the IRC’s work, the OPTN implemented new citizenship categories in March 2012. These new categories for transplant candidates and living donors include:
- US citizen: A United States citizen by birth or naturalization.
- Non-US citizen/US resident: A non-citizen of the United States for whom the United States is the primary place of residence.
- Non-US citizen/non-US resident: A non-citizen of the United States for whom the United States is not the primary place of residence. The year the candidate entered the US is required for candidates
- Traveled to US for reason other than transplant: A non-citizen of the United States for whom the United States is not the primary place of residence, and who came to the U.S. for a reason other than transplant.
- Traveled to US for Transplant: A non-citizen of the United States for whom the United States is not the primary place of residence, and who came to the US for the purpose of transplant.
Policy language approved in June 2012 specifies that the IRC “shall prepare and provide public access to an annual report of Member transplant center activities related to the listings and transplantation of non-US citizen/non-US residents.” This policy also allows the Committee to request that transplant programs with candidates in this category to voluntarily provide additional information about these cases. Over the past year, the Committee has been reviewing data available from UNet℠ to better understand the number of non-US citizen/non-US residents being listed and transplanted across the country, and the number of centers that would be impacted by a voluntary survey.
What You Can Do To Help
The IRC recognizes that with data entry comes the potential for data errors! The Committee encourages transplant hospitals to take some time to review the citizenship definitions above and ensure your clinical and data entry staff are entering data on patients appropriately. Final data for inclusion in the annual report will not be generated until March 2014, so there is still time to review and verify entries for your transplant program.
For more information regarding the citizenship definitions and related required data fields, visit Tiedi Online Help or contact the UNOS IRC Liaison, Shandie Covington at [email protected].
