The OBRA 1987 charge asked that the IOM assess the adequacy of existing data systems to monitor epidemiology, access, quality, and reimbursement effects on quality on a continuing basis. In this chapter, three major sources of information about ESRD patients and the ESRD program are described: the HCFA data systems, the U.S. Renal Data System (USRDS), and the United Network for Organ Sharing (UNOS). The adequacy of these data systems is addressed, as are some of their specific deficiencies, and the committee makes recommendations for their improvement. The committee1 also evaluates how these data systems fulfill the respective legislative requirements: OBRA 1986 and the National Organ Transplant Act of 1986.
From 1973 until mid-1977, the ESRD program was administered jointly by the SSA Bureau of Health Insurance (BHI) and the PHS Bureau of Quality Assurance (BQA). BHI was responsible for monitoring Medicare entitlement, utilization, and reimbursement; BQA was responsible for developing quality assurance standards and the medical information system for dialysis and transplant patients. Divided management resulted in continuing data-system chaos. As a consequence, data about the ESRD patient population and the ESRD program are incomplete for the 1970s.
After HCFA was established in 1977, the monitoring of Medicare program management and ESRD patient information was consolidated in HCFA's Bureau of Data Management and Strategy (BDMS). Following enactment of Public Law 95–292 of 1978, the ESRD Program Management and Medical Information System (PMMIS) was developed to provide medical and program information for ESRD program analysis, policy development, and