Autism is an important public health concern, according to the Centers for Disease Control and Prevention (CDC)—an agency within the Department of Health and Human Services (HHS). CDC estimates suggest that the prevalence of autism is increasing, and that at least 1 in 88 children in the United States have been identified as having autism. From fiscal year 2008 through fiscal year 2012, 11 federal agencies spent a combined total of approximately $1.2 billion on autism research. These agencies are the Department of Defense (DOD), Department of Education (Education), Environmental Protection Agency (EPA), National Science Foundation (NSF), and 7 agencies within HHS: Administration for Children and Families, Agency for Healthcare Research and Quality (AHRQ), CDC, Centers for Medicare & Medicaid Services, Health Resources and Services Administration, National Institutes of Health (NIH), and Substance Abuse and Mental Health Services Administration (SAMHSA).
Having multiple agencies involved in autism research can be advantageous, as agencies may be able to tailor programs to suit their specific missions and needs. However, it is important that agencies monitor federal autism efforts and coordinate similar actions to maximize their effectiveness and efficiency and avoid duplication.
Most of the agencies that fund autism research, with the exception of EPA, NSF, and SAMHSA, are members of the Interagency Autism Coordinating Committee (IACC)—a federal advisory committee composed of federal and nonfederal members. Among other things, the Combating Autism Act of 2006 (CAA) required the IACC to coordinate all autism activities within HHS and monitor federal activities related to autism across the federal government. To accomplish this charge, the IACC holds meetings and has issued several reports. These reports include a strategic plan for autism research—which the CAA requires the IACC to develop and annually update—that is organized into 7 research areas that contain specific short- and long-term research objectives. At the time of GAO’s review, the most recent strategic plan contained 78 objectives—for example, an objective to complete at least three randomized controlled trials on medications targeting core symptoms in people with autism and an objective to initiate studies on at least 10 environmental factors identified as potential causes of autism.
The IACC also issues an annual Autism Spectrum Disorder Research Portfolio Analysis Report. This report is organized by the same 7 research areas and includes information on research projects funded by federal and nonfederal entities related to autism, including budget information, for a single fiscal year. The IACC also has a companion database to its portfolio analysis—referred to as the web tool—which allows users to view and search projects included in the portfolio analysis. The Office of Autism Research Coordination (OARC), within NIH, provides administrative support to the IACC, such as collecting data from federal agencies to be used in reports published by the IACC.
Autism is a complex developmental disorder that begins during early childhood, characterized by impaired social interactions, problems with verbal and nonverbal communication, and repetitive behaviors, or by severely limited activities and interests. What is commonly known as autism is a group of disorders known as autism spectrum disorder that can range from mild to more severe in their symptoms. In this report, the term “autism” is used to refer to autism spectrum disorder as defined in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, which was effective during the time period covered by GAO’s review. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR) (Arlington, VA: American Psychiatric Association, 2000).
According to CDC, it is unclear how much of this increase is due to a broader definition of autism, improvements in diagnosis, or an actual increase in the number of people with autism. CDC believes that the increase in the prevalence of autism is likely due to a combination of these factors.
DOD’s fiscal year 2012 appropriation for its medical research programs, including autism, was available for obligation through the end of fiscal year 2013—September 30, 2013. At the time of GAO’s review, DOD had not submitted data on its fiscal year 2012 research projects. As a result, GAO’s report does not include data on DOD’s fiscal year 2012 autism research.
Pub. L. No. 109-416, § 3, 120 Stat. 2821, 2827 (2006). The IACC and other autism activities authorized under the CAA were reauthorized through fiscal year 2014 under the Combating Autism Reauthorization Act of 2011. Pub. L. No. 112-32, 125 Stat. 361 (2011).
The 7 research areas are diagnosis, biology, causes, treatment and interventions, services, lifespan issues, and infrastructure and surveillance. The IACC considers all objectives within the infrastructure and surveillance research area to be both short- and long-term objectives.
At the time of GAO’s review, the most recent portfolio analysis was published in July 2012 and contained information on research funded in 2010.
In November 2013, GAO determined that of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 84 percent—1,018 projects—had the potential to be duplicative, because the projects were categorized to the same strategic plan objectives or research areas. GAO found that each of the 11 federal agencies that funded autism research during this period funded at least 1 autism research project in the same strategic plan objective as another agency. In many instances, 3 or more agencies funded research projects under the same objective. For example, 5 agencies awarded approximately $15.2 million for 20 autism research projects related to 1 objective. This objective was to test methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings. Four agencies awarded approximately $4.1 million for 8 autism research projects to develop at least 2 individualized community-based interventions to improve quality-of-life or health outcomes for the spectrum of adults with autism. Funding autism research on the same topic may be appropriate and necessary—for example, for purposes of replicating or corroborating results—but in some instances, funding similar autism research may lead to unnecessary duplication and inefficient use of funds. The objectives, which represent broad and complex areas of research, are useful to identify the potential for unnecessary duplication and such identification can effectively lead to further review by the funding agencies to ensure funds are carefully spent. Agencies can review specific project information to confirm whether projects associated with an objective are, for example, necessary to replicate prior research results. This type of analysis would help provide assurance that agencies are not wasting federal resources due to duplication of effort. Further, such an analysis could help identify research needs—such as research that is needed to complement or follow-up prior research or research that requires further corroboration—and move autism research forward in a coordinated manner.
GAO concluded in November 2013 that the IACC may have missed opportunities to coordinate federal autism activities and reduce the risk of duplication of effort and resources. Although the CAA requires the IACC to coordinate HHS autism activities and monitor federal autism activities, OARC officials stated that the prevention of duplication among individual projects in agency portfolios is not specified in the CAA as one of the IACC’s statutory responsibilities and therefore is not a focus of the IACC. OARC officials stated that it was up to the individual federal agencies to use the information contained in the IACC’s strategic plan and portfolio analysis and the related web tool to prevent duplication. OARC officials acknowledged that the IACC could choose to use data from the portfolio analysis as the basis for specific recommendations regarding areas where interagency coordination could be increased, but to date this has not occurred. OARC officials stated that they do not consider it to be their responsibility to review the data that they collect on behalf of the IACC for duplication or for coordination opportunities. Instead, they said that they fulfill their role in assisting the IACC in its cross-agency coordination activities in other ways, such as by facilitating interagency communication and gathering information.
Additionally, GAO found that, apart from participation on the IACC, instances of agencies coordinating were limited. GAO also found that agencies did not have robust or routine procedures for monitoring federal autism activities. While 5 of the 10 agencies with which GAO spoke stated that they monitored federal autism activities by searching databases or websites, these searches were narrowly focused or undefined, and some agencies lacked formal policies or procedures for staff to follow. For example, some agencies conducted federal database searches to ensure that a principle investigator was not receiving funding from another agency for the same project; however, these searches would not identify whether agencies were funding similar projects led by different principal investigators. Several agency officials also stated that they rely on their peer reviewers, other experts, and project officers to have knowledge of the current autism research environment. Per federal internal control standards, agencies should establish a means of communicating with, and obtaining information from, other agencies. Such communication is important to maximize the effectiveness and efficiency of the federal autism investment and minimize the potential for inefficient use of federal resources due to unnecessary duplication.
Thirty-one projects could not be assessed for potential duplication. GAO’s findings suggest potential, not actual duplication.
Principal investigators are typically individuals designated by the applicant organization, such as a university, to have the appropriate level of authority and responsibility to direct the project or program to be supported by the award. NIH officials also stated that, before awarding funding, NIH program and grants management staff are to ensure that there is no budgetary, scientific, or commitment overlap by reviewing documentation of “other support” identified by the applicant (which includes all financial resources, whether federal, nonfederal, commercial or organizational, available in direct support of an individual’s research endeavors, including, but not limited to, research grants, cooperative agreements, contracts, or organizational awards, but not training awards, prizes, or gifts). Officials from AHRQ, DOD, Education, and NSF also told us they rely on similar disclosure from applicants.
To enhance the IACC’s efforts to coordinate HHS autism activities and monitor all federal autism activities, in November 2013 GAO recommended that the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to take the following action:
To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, GAO also recommended in November 2013 that the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF each take action to:
Because GAO identified the potential for duplication in autism research, rather than actual duplication, the costs of any actual duplication could not be determined. However, given that 11 federal agencies spent a combined total of approximately $1.2 billion on autism research from fiscal years 2008 through 2012, and that multiple agencies have funded autism research related to the same objectives, the federal government may realize financial benefits from taking the actions GAO describes related to improved coordination and monitoring. Such actions could help avoid unnecessary duplication of autism research. They may also help identify potential opportunities for further coordination, since agencies can only coordinate with each other when they are aware of relevant research or other activities. Ultimately, improvement in coordination and monitoring related to autism research would help ensure that scarce federal resources are used as efficiently as possible.
The information contained in this analysis is based on findings from the product listed in the related GAO products section. GAO identified autism research projects funded by 11 agencies between fiscal years 2008 through 2012 (table 4 in appendix IV lists the number of projects GAO identified, by agency). GAO determined whether research was potentially duplicative by identifying projects that were categorized to the same strategic plan objectives, or in the case of projects that were not categorized to a specific objective, were categorized to the same strategic plan research areas. To assess the extent to which the IACC and agencies coordinate and monitor federal autism activities, GAO reviewed IACC documents. GAO also interviewed OARC officials, officials from 10 federal agencies—8 of which were federal IACC members and 2 of which were not IACC members but funded autism-related research between fiscal years 2008 and 2012—and select nonfederal IACC members. GAO assessed the IACC’s and agencies’ coordination and monitoring activities against criteria established by GAO’s prior work, including key practices for interagency coordination and collaboration and internal control standards related to communicating with external entities, including other agencies, and measuring progress on organizational efforts, such as those established through strategic plans.
Table 5 in appendix IV lists the agencies funding autism research GAO identified that might have similar or overlapping objectives, provide similar services, or be fragmented across government missions. Overlap and fragmentation might not necessarily lead to actual duplication, and some degree of overlap and duplication may be justified.
See, for example, GAO, Managing for Results: Key Considerations for Implementing Interagency Collaborative Mechanisms, GAO‑12‑1022(Washington, D.C.: Sept. 27, 2012); GAO, Results-Oriented Government: Practices That Can Help Enhance and Sustain Collaboration among Federal Agencies, GAO‑06‑15(Washington, D.C.: Oct. 21, 2005); and GAO/AIMD‑00‑21.3.1.
Comments from DOD, Education, HHS, and NSF on the November 2013 report on which this analysis is based varied. HHS did not concur with GAO’s recommendation that it should take action to identify projects that may result in unnecessary duplication, as such an analysis would not provide the detail needed to determine actual duplication. GAO agreed that further analysis would be needed to identify actual duplication, but maintained that the identification of such projects would be worthwhile as it could effectively lead to further review by the funding agencies. GAO also questioned the purpose of using federal resources to collect data, if the data are not then carefully examined to ensure federal funds are being used appropriately.
DOD concurred with the recommendation to improve coordination among federal agencies. While the comments from Education, HHS, and NSF suggested that these agencies view the opportunity to enhance the coordination of federal autism research activities positively, they also expressed concern with certain of the report’s conclusions.
Education, HHS, and NSF did not agree with GAO’s conclusion that the majority of autism research projects had the potential to be duplicative. The agencies stated that strategic plan objectives and research areas are broad; and therefore, projects categorized under the same objective cannot be fairly judged as potentially duplicative without more substantial exposition. GAO agreed that more information on the specific projects funded within each objective would need to be assessed in order to determine actual duplication. However, the fact that research is categorized to the same objectives suggests that there may be duplicative projects being funded. GAO did not find any information during the course of its work that Education, HHS, or NSF had reviewed the autism research projects to ensure that they were not unnecessarily duplicative. Specific project information should routinely be compared to ensure that projects associated with an objective are, for example, complementary or necessary to replicate prior research results. This type of analysis would help provide assurance that agencies are not wasting federal resources due to duplication of effort. Further, such an analysis could help identify research needs—such as research that requires further corroboration—and move autism research forward in a coordinated manner.
Additionally, two agencies—HHS and NSF—included comments suggesting that they were concerned about the report’s conclusion that the coordination and monitoring of federal autism activities were limited. Both agencies’ comments included information on their coordination and monitoring activities. GAO stated that, whileimportant, these agencies’ activities were not sufficiently comprehensive and were limited in that they only looked to identify duplicative projects led by the same principal investigator. The agencies’ activities did not identify project applications led by another principal investigator that may be unnecessarily duplicative of a project that has already been federally funded—a project with the same purpose, strategies, and target population that is not necessary to, for example, corroborate or replicate prior research results.
GAO provided a draft of this report section to DOD, Education, HHS, and NSF for review and comment. HHS and NSF provided written comments. NSF provided similar comments to those that it provided on the November 2013 report on which this analysis is based. HHS, on behalf of NIH, also offered comments that were similar to those it made in response to GAO’s November 2013 report. In addition, HHS stated that NIH program officials use a database for detection of duplication of scientific content across applications to help identify similar projects led by either the same or different investigators. Although the use of this database may be helpful, HHS did not provide information indicating that NIH has policies in place that ensure that program officials actually search this database on key terms to identify similar research led by different principal investigators before awarding each research grant, and information referencing the use of this database for this purpose was not provided during the course of GAO’s 11 month review. NIH’s written policy states only that NIH will not accept similar grant applications with essentially the same research focus from the same applicant. Finally, in its comments on this report, HHS stated that, while the data collected for the portfolio analysis is not reviewed by the IACC to prevent duplication, the collection of the data is still beneficial as it can be used to evaluate progress on the IACC strategic plan and to identify gaps in autism research.
GAO agrees that these are important uses of the data. Measuring progress is a key aspect of successful strategic planning. However, GAO believes that, while such uses are beneficial, these uses are not a substitute for actively searching for unnecessarily duplicative research. Using the data to help prevent duplication is an important step in ensuring scarce federal resources are used as effectively and efficiently as possible. Both NSF and HHS provided technical comments, which GAO incorporated as appropriate.
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