Federal Autism Activities:

Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication

GAO-14-16: Published: Nov 20, 2013. Publicly Released: Nov 20, 2013.

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What GAO Found

Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the Interagency Autism Coordinating Committee's (IACC) strategic plan. Funding similar research on the same topic is sometimes appropriate--for example, for purposes of replicating or corroborating results--but in some instances, funding similar research may lead to unnecessary duplication. The potentially duplicative research projects included those funded by the Department of Defense (DOD), Department of Education (Education), National Science Foundation (NSF), and agencies within the Department of Health and Human Services (HHS)--Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services, Health Resources and Services Administration, National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency. For example, 5 agencies awarded approximately $15.2 million for 20 autism research projects related to 1 objective to test methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings.

The IACC's and federal agencies' efforts to coordinate and monitor federal autism activities were limited. The IACC--composed of federal and nonfederal members--met regularly and issued several reports, such as a strategic plan and portfolio analysis--a report that provides information on autism research projects, organized by the strategic plan objectives. The IACC has also released a companion database to its portfolio analysis. However, IACC members provided mixed views on the usefulness of the IACC's meetings, strategic plan, and portfolio analysis in aiding coordination and monitoring. While three agencies--CDC, DOD, and NIH--regularly used the committee's strategic plan and portfolio analysis, others did not. Shortcomings in the data the IACC used for its portfolio analysis limited its ability to coordinate HHS autism activities and monitor federal autism activities--as required by the Combating Autism Act of 2006 (CAA). For example, GAO found that the data used by the IACC was outdated, not tracked over time, inconsistent, and incomplete. These weaknesses limited the IACC's ability to monitor its progress on its coordination and monitoring efforts--which, in prior work, GAO established as a best practice for inter-agency collaboration, as well as a federal internal control standard. In addition, these weaknesses limited agencies' ability to use these data to identify coordination opportunities and avoid the potential for unnecessary duplication. Such information is important because of the involvement of multiple agencies. Lastly, apart from their participation on the IACC, there were limited instances of agencies coordinating, and agencies did not have robust or routine procedures for monitoring federal autism activities. Per federal internal control standards, agencies should establish a means of communicating with other agencies; this is important to maximize the efficiency of the federal autism investment and minimize the potential for unnecessary duplication.

Why GAO Did This Study

Autism—a developmental disorder involving communication and social impairment—is an important public health concern. From fiscal years 2008 through 2012, 12 federal agencies awarded at least $1.4 billion to support autism research and other autism-related activities. The CAA directed the IACC to coordinate HHS autism activities and monitor all federal autism activities. It also required the IACC to develop and annually update a strategic plan for autism research. This plan is organized into 7 research areas that contain specific objectives.

GAO was asked to examine federal autism efforts. In this report, GAO (1) analyzes the extent to which federal agencies fund potentially duplicative autism research, and (2) assesses the extent to which IACC and agencies coordinate and monitor federal autism activities. GAO analyzed agencies’ data and documents, and interviewed federal agency officials and select nonfederal IACC members.

What GAO Recommends

GAO is recommending that (1) HHS improve the usefulness of IACC data to enhance coordination and monitoring of federal autism activities, and (2) DOD, Education, HHS, and NSF improve their coordination of autism research. HHS disagreed with the first recommendation stating that it was already making adequate efforts. The agencies supported the need for improved coordination but, except for DOD, disputed that any duplication occurs. GAO continues to believe the recommendations are warranted as discussed in the report.

For more information, contact Marcia Crosse at (202) 512-7114 or crossem@gao.gov.

Recommendations for Executive Action

  1. Status: Closed - Implemented

    Comments: In September 2018, HHS informed us that it is providing consistent annual guidance to the federal agencies submitting data on autism spectrum disorder research, which is used in preparing the Interagency Autism Coordinating Committee's Portfolio Analysis Reports. HHS reported--and our review confirms--that the agency has been collecting these data in a consistently uniform method, with the exception of minor changes and clarifications, since 2014.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to provide consistent guidance to federal agencies when collecting data for the portfolio analysis and web tool so that information can be more easily and accurately compared over multiple years.

    Agency Affected: Department of Health and Human Services

  2. Status: Open

    Comments: In September 2018, HHS reported that it already provides comprehensive reports describing the federal research and non-research autism-related activities in detailed narrative format that is publicly accessible. HHS said it does not believe that providing such information in an alternative format is warranted. However, HHS also pointed out that a forthcoming report to Congress on federal activities related to autism spectrum disorder and other developmental disabilities, will describe all such activities and coordination efforts that span multiple federal agencies and departments. HHS expects this report to be issued in the fall of 2018. GAO will review the contents of this new report once it is available and consider whether it fulfills this recommendation.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to create a document or database that provides information on non-research autism-related activities funded by the federal government and make this document or database publicly available.

    Agency Affected: Department of Health and Human Services

  3. Status: Closed - Implemented

    Comments: The IACC has taken action to monitor autism research projects to avoid unnecessary duplication, as well as coordinate and create efficiencies, as recommended by GAO in November 2013. On October 23, 2017, the IACC released its 2016-2017 Strategic Plan for Autism Spectrum Disorder. This plan includes a statement on duplication in response to GAO's recommendation and the Autism CARES Act of 2014, which required that the IACC strategic plan include recommendations to ensure that autism research funded by the Department of Health and Human Services and other federal agencies is not unnecessarily duplicative. The plan states that the IACC explicitly asked the individuals involved in the plan's development to identify issues related to duplication and to propose suggestions for avoiding unnecessary duplication when reviewing content for the strategic plan. The IACC did not identify any specific instances of duplication among autism research projects. However, the committee identified a broader issue that provides an opportunity to reduce potential duplication-the need for closer coordination of large genomic sequencing efforts-in the study of autism. According to the IACC, several different research organizations are building genetic databases. There is concern that different databases may be sequencing the same individuals, which could result in poor stewardship of funds, as well as the time and effort of research participants. To reduce duplication of effort in sequencing, the IACC is encouraging organizations building databases to 1) publicly share their "manifests," which include information on whose DNA is in each database, 2) use global unique identifiers to tag data in order to help researchers know when they are working with individuals who already had their genetic information sequenced, and 3) share data by joining with, or contributing to, the National Database for Autism Research. As the IACC continues to regularly update its strategic plan using the aforementioned process of identifying duplication and proposals to avoid unnecessary duplication, this will help improve coordination of federal autism research and help ensure prudent stewardship of federal resources in this research area.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to identify projects through its monitoring of federal autism activities--including Office of Autism Research Coordination's annual collection of data for the portfolio analysis and the IACC's annual process to update the strategic plan--that may result in unnecessary duplication and thus may be candidates for consolidation or elimination, and identify potential coordination opportunities among agencies.

    Agency Affected: Department of Health and Human Services

  4. Status: Closed - Implemented

    Comments: Department of Education (Education) officials told GAO in November 2016 that the department's National Center for Special Education Research (NCSER) continues to work with other groups in Education, as well as with other agencies such as HHS and NSF, formally and informally, to better identify the federally funded research on children with disabilities, including autism. These collaborative efforts include NCSER's involvement in the Interagency Committee on Disability Research, which plans to establish a publicly accessible government-wide inventory of all disability, independent living, and rehabilitation research, including research involving individuals with autism. This inventory should be accessible to the public by 2019. Further, in February 2017, Education stated that it plans to continue to be an active participant in all IACC activities. For example, Education has contributed to the IACC's report to Congress that is under development by the HHS Autism Coordinator. Lastly, in March 2016, the department stated that it would review relevant research prior to inviting applications related to autism research projects.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Education

  5. Status: Closed - Implemented

    Comments: Officials from the Department of Defense's (DOD) Congressionally Directed Medical Research Programs (CDMRP) told GAO in November 2016 that it has implemented a data-sharing process with the National Institutes of Health (NIH). CDMRP's Autism Research Program grant application data will be included in the NIH database that houses information on all funded grants and unfunded applications from NIH and other agencies such as the Centers for Disease Control and Prevention and the Agency for Health Research and Quality. DOD officials also provided further information on other actions taken to monitor the autism research funded by other agencies, such as database searches and utilization of all IACC publications, including the strategic plan and portfolio analysis report, to help identify gaps in autism research.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Defense

  6. Status: Closed - Implemented

    Comments: HHS officials told GAO in November 2016 that NIH's comprehensive internal database which also includes information from other agencies is used extensively for detection of overlap or duplication of scientific content across different grantees (i.e., from different principal investigators). HHS also reiterated that NIH's internal autism coordinating committee, which is composed of five NIH institutes, meets monthly and collaboratively plans and co-funds major autism-related research initiatives and scientific workshops. The committee also reviews the IACC portfolio analysis for gaps in research when planning such activities. Lastly, HHS stated that it will continue to make full use of the monitoring data developed by IACC.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Health and Human Services

  7. Status: Closed - Implemented

    Comments: NSF told GAO in March 2017 that the agency is exploring additional actions to avoid potentially unnecessary duplication. For example, NSF plans to routinize a data-sharing process with NIH in which information about NSF-funded autism research awards are included in the NIH database that houses information on all funded grants and unfunded applications from NIH and other agencies. NSF is also a member of the Interagency Committee on Disability Research and plans to continue to work with other agencies formally and informally to better identify federally funded research on children with disabilities, including autism. Lastly, NSF stated that it will monitor the autism research funded by other agencies by searching databases, utilizing all IACC publications, and monitoring data developed by the IACC.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: National Science Foundation

 

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