September 11

From the September 11, 2001, attack on the World Trade Center (WTC) through fiscal year 2010, approximately $475 million in federal funds was made available for screening, monitoring, or treating responders for illnesses and conditions--such as asthma and depression--related to the WTC disaster. Within the Department of Health and Human Services, the Centers for Disease Control and Prevention's (CDC) National Institute for Occupational Safety and Health (NIOSH) awards funds to and oversees the programs that provide screening, monitoring, and treatment services for responders to the WTC attack. The two largest programs, which we refer to here as the WTC health programs, are the New York City Fire Department's (FDNY) WTC Medical Monitoring and Treatment Program, and the New York/New Jersey (NY/NJ) WTC Consortium. These programs began as screening and monitoring programs, tracking the health status of responders related to the WTC disaster. In December 2005, the Congress first appropriated funds that were specifically available for treatment programs for certain responders with health conditions related to the WTC disaster, and in fall 2006, NIOSH began awarding funds for outpatient and inpatient treatment. According to NIOSH, as of June 30, 2010, a total of about 44,000 responders had been screened by the WTC health programs; from July 1, 2009, to June 30, 2010, about 23,000 were monitored and about 13,000 were treated. In 2007 we reported that NIOSH did not have a reliable estimate of the cost of providing monitoring and treatment services because, in part, it did not have actual cost data from the programs. In addition, a task force established by the Secretary of Health and Human Services to assess the WTC health programs found that the programs lacked financial accountability measures and that NIOSH needed to collect reliable data necessary for program management and planning for the future. In 2007, NIOSH proposed establishing a business process center (BPC) to, among other things, provide such data.6 In October 2007, CDC published a solicitation for the purpose of awarding a BPC contract, and in November it held a conference in New York City for interested parties. However, on December 13, 2007, CDC canceled the solicitation. In light of issues raised about NIOSH's data collection efforts and the cancellation of the BPC solicitation, you requested that we report on NIOSH's efforts to collect data from the WTC health programs without the BPC. In this report, we describe (1) the purpose of NIOSH's proposed BPC with regard to data collection from the WTC health programs, and (2) any action NIOSH has taken since the cancellation of the BPC solicitation in an effort to improve data collection.

NIOSH's proposed BPC was intended to provide an efficient mechanism for collecting uniform data across the WTC health programs on responders' health conditions, health services provided by the programs, and costs of the programs. According to a NIOSH official involved in administering the WTC health programs, the BPC would have given NIOSH access to a single source of claims information from the WTC health programs. The official told us that this claims information would have documented responders' health conditions, the procedures and medications used to care for responders, and the programs' costs. That is, claims data would have provided information about a specific patient encounter, including the individual responder's health condition, age, and geographic location; the array of services provided to the responder during the encounter, such as a physical examination or X-ray; and the costs of the encounter. The NIOSH official said that such information would have helped the agency identify ways to improve the programs' effectiveness and predict future costs. For example, claims data on responders' health conditions would have indicated the level of need for specific types of services. The NIOSH official also said that the claims information would have supported program oversight by, for example, providing verification that a specific program service was provided to an individual. Since cancellation of the BPC solicitation, NIOSH has taken action to gather more detailed information about responders' health conditions. As we reported in July 2007, NIOSH has required the WTC health programs to submit quarterly reports containing detailed demographic, service utilization, and cost information; the programs began submitting these reports in early 2007. The information in the quarterly reports included the total numbers of responders monitored and treated; for each of five diagnostic categories, the total number of responders monitored and treated;8 the total number of treatment services by service category;9 and total outpatient monitoring and treatment costs and inpatient treatment costs. According to a NIOSH official, in July 2009, NIOSH began to require the programs to provide more detailed diagnostic information. For example, the programs were required to report the number of responders with certain lower airway conditions, such as asthma and chronic obstructive pulmonary disease. The NIOSH official told us that the agency is also considering requiring the programs to provide more detailed cost information, such as identifying costs by physical and mental health services. He added that more detailed cost information would be useful for understanding which types of services are most costly and for identifying cost trends, which could help NIOSH anticipate future program needs.