Because of a broad-based need, the OPTN has developed mechanisms through which the government, the scientific community and the public can obtain access to transplant data. These scientific organ donation and transplantation data have many uses:
- Transplant professionals use the data to develop or refine policies and practices to improve the likelihood of a successful donation or transplant.
- Public health researchers may use the data to identify trends that will shape the future of the field.
- Patients and their families can assess their treatment options.
- The news media and the general public may gain a greater understanding of the transplant system's achievements, as well as its ongoing challenge to meet the needs of patients still awaiting transplantation.
Government Uses of Data
Federal, state, and local governments need access to transplant data in order to address a number of issues, including the following:
Transplant data can be used to determine the need for reimbursement for various organ transplants. Specifically, the data can be used to help determine which primary diagnostic categories are suitable for reimbursement and how many cases in each primary diagnostic category occur during a given time period.
Transplant data can also be used to assess and set performance standards for transplant centers. The data can be used to evaluate the number of transplants performed by individual transplant centers and the outcomes at those centers. The data can show the impact of patient mix on patient and graft survival as well as the effects of race, blood type, and other variables on pre-transplant waiting time.
Legislative and Regulatory Policy
Transplant data are important to the federal government for setting policies and passing laws relative to transplantation. For example, collected data can be used to determine the impact of federal OPO regulations that require demonstrated ability of each OPO to meet a minimum procurement rate. Data can also be used to determine the effects of cold ischemia time (time without blood supply to the organ) on graft survival. Such information can be used to develop optimal geographic organ sharing policies.
The data can also be used to examine such issues as accuracy in histocompatibility testing and graft survival for specific transplant procedures.
Public and Scientific Community Uses of Data
The scientific community and the public use transplant data in a number of ways. Among these are:
The research community requires data access in order to study specific scientific hypotheses. Current studies of interest to the scientific community include the impact of HLA matching on outcome, factors affecting patient waiting time, disease progression during the waiting period, and risk factors for graft failure (e.g., certain medical diagnoses). UNOS staff has published more than 400 abstracts and manuscripts relating to, or based on, OPTN data; new publications appear regularly.
Data for Policy Analysis
OPTN committees, the federal government, the scientific community and the public use transplant data to monitor transplantation medicine and the impact of specific policies. Policy-related issues that can be studied using data include the impact of joint pancreas/liver recovery on liver transplant outcome, the effects of mandatory sharing of zero-antigen mismatched kidneys, and the impact of transplanting blood group O kidneys only into group O recipients.
Evaluating Organ Allocation
Data from the OPTN database are currently used to monitor the efficacy of the organ allocation process. Data recorded on the potential recipient form are especially useful for this purpose. These data, combined with waiting list information, can be used to determine retrospectively the patient with highest priority to receive each deceased donor organ. When such patients did not receive the organs, the actual recipients can be identified. As transplants occur that are not consistent with the organ allocation policy, UNOS contacts the appropriate members to determine reasons for deviation from established policies. UNOS works with its members to ensure that they follow allocation policies and provide appropriate documentation when deviating from established policies.