individual patients, or that DHHS ever intended to do so, but rather that its responsibility is to ensure that the policies that guide the operation of the system are equitable and well-grounded in medical science.
Vigilant and conscientious oversight and review of programs and policies are critically important to ensuring accountability on the part of the OPTN and other participants in the organ procurement and transplantation system. The Final Rule appropriately places this responsibility with the federal government. The committee believes that this is an important aspect of the Final Rule and a charge that should be pursued by the federal government in close cooperation with the full range of participants in the transplant community.
Some of the activities that could be undertaken in a more proactive manner include, but are not limited to, assessing the equity of access to transplantation, including fairness across socioeconomic, racial, and ethnic groups, and monitoring short- and long-term patient outcomes.
The various participants in the transplantation system (including the federal government) and the general public would be better served if there were a comprehensive set of reliable, informative, and patient-centered performance measures for the various key components of the overall system of organ procurement and transplantation. As noted in Chapter 2, the Health Care Financing Administration (HCFA) has established performance measures for OPOs. However, the General Accounting Office (GAO) and others have noted several improvements that could be made in these measures to focus them more sharply on the most important determinants of effective performance and improve their fairness among the OPOs (GAO, 1997). The committee believes that the standards for successful performance could be raised to a higher level.
HCFA has also established performance standards that transplantation centers must meet to be eligible for Medicare reimbursement. The committee believes it would be appropriate for the independent scientific review board (see Recommendation 8.2), to review these measures and standards on a periodic basis to make sure they are consistent with current medical science and are as useful as possible to patients and policy makers.
The committee also believes that the OPTN should be rigorously evaluated against performance measures. The committee recognizes that some of these measures would necessarily be process-oriented but urges that, to the degree possible, they focus on patient outcomes and on the equity of the overall system in serving the needs of America's diverse population.
A few summary statistics that could be used to assess outcomes might include: (1) transplantation rate by medical status; (2) pretransplant mortality rate by medical status; (3) posttransplant mortality rate by medical status; (4) median waiting time in the status 1 category; and (5) graft survival as a function of such variables as cold ischemic time and donor characteristics. The improved