Recent interpretations of rules regarding the protection of Social Security data have limited our ability to use those data to supplement the OPTN database.
UNOS has utilized the public Death Master File (DMF) data released by the National Technical Information Service on behalf of the Social Security Administration (SSA). Beginning November 1, 2011, to comply with section 205(r) of the Social Security Act, the DMF no longer contains protected state death records. Because information regarding whether a patient is currently living or deceased is so important to the analysis and understanding of the outcomes of transplantation (particularly for those patients not actively being followed by a transplant program), UNOS is planning to use data from other sources as supplements. Information in some of these sources must be confirmed before being incorporated in the database.
Beginning in August, UNOS Data Quality will pilot a new process for verifying with transplant programs the current status (living or dead) of certain candidates waitlisted and recipients transplanted and/or followed post-transplant at the transplant program. UNOS will contact the designated Primary Program Administrator and Primary Data Coordinator at the applicable transplant programs by secure email and will provide them with an Excel spreadsheet containing relevant information for each patient. We will ask each program to complete the spreadsheet and return it to the Data Quality group within 14 days. Programs will be provided with instructions for making the updates.
All verified patient status information that is ultimately confirmed by a program or through another source will then be incorporated into the OPTN database and will be used in OPTN and SRTR data analyses and reporting, including the Program Specific Reports. The process developed by the SRTR that allows programs to review data used in the Program Specific Reports prior to publication will remain unchanged.