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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crossem@gao.gov

 

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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: Open

    Comments: In July 2015 HHS stated that it continues to disagree with the recommendation and referenced comments it provided to GAO in August 2014. In these comments, HHS stated that it recognizes that consistency is important when conducting analysis, but that it is also important to adapt to changes in the field, incorporate new knowledge, and be responsive to other needs. We recognize that these factors deserve consideration. However, the annual changes of the type we observed are not productive. The exclusion of training projects in one year of data collection, their inclusion in the subsequent year, and their partial exclusion in the next year is a change in methodology and guidance that makes it difficult to analyze and interpret data over time. Additionally, consistent guidance was not provided to organizations--both federal and nonfederal--that submit information for inclusion in HHS's portfolio analysis. For example, one year HHS requested the Health Resources and Services Administration to include information on its training projects in the portfolio analysis, but did not make the same request of other organizations. GAO believes that guidance should be developed so that accurate, consistent, and meaningful comparisons of changes in federal funding of autism research can be made over time and used to inform future funding decisions.

    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 July 2015 HHS stated that it continues to disagree with the recommendation and referenced comments it provided to GAO in August 2014. In these comments, HHS said it does not think that producing a document or database to catalogue non-research activities would be useful as this would duplicate ongoing efforts. HHS stated that other agencies have public accessible reports that describe these activities such as the 2010 HHS report, Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006, a 2011 report from the Centers for Medicare & Medicaid Services entitled, Report on State Services to Individuals with Autism Spectrum Disorders (ASD), and a 2013 report by the Health Resources and Services Administration entitled, Efforts to Improve Autism Spectrum Disorders Service Delivery under the Combating Autism Act Initiative: Research, Training, and State Implementation Grants for Fiscal Year(s) 2008-2011. GAO agrees these documents are important and helpful. However, they are static reports that are not useful for monitoring projects over time. GAO believes that having a document or database that contains current information on these non-research activities is an important aspect of fulfilling the IACC's responsibility to monitor all federal autism activities, not just research.

    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: Open

    Comments: In July 2015 HHS stated that it continues to disagree with the recommendation and referenced comments it provided to GAO in August 2014. In these comments, HHS stated that an analysis by the IACC to identify duplication would not likely provide the type of information on actual duplication needed by agency officials when making funding decisions. HHS said that even if the IACC further refined its analysis to identify several grants on the same general topic within each research objective as potentially duplicative, this type of information would lack adequate specificity to be useful to agency officials who are involved in the grant award process. HHS expressed concern that the IACC did not have the expertise to take on this challenge and also that it would be a time-consuming endeavor. HHS also stated that a recent review of the autism research portfolio by the IACC found that in almost all areas of the portfolio there is a need for more-not less-research activity. Given that funding agencies conduct their own reviews of grant applications prior to funding, HHS views any efforts made by the IACC to identify duplicative grants would actually duplicate the efforts of other agencies and be of limited utility. GAO understands that the IACC's identification of instances of duplication would need further review to determine actual duplication. However, we believe that the IACC's identification of such projects would be worthwhile as it could effectively lead to their further review by the funding agencies. Certainly, if unnecessary duplication or opportunities to enhance coordination between HHS agencies were identified, the IACC could make related recommendations to the agencies that would carry important weight. We acknowledge that while the IACC does not have the authority to eliminate duplicative projects, it does have the responsibility to make recommendations to the Secretary of Health and Human Services. GAO never took the position that the federal government is funding too much autism research. Instead, GAO believes that autism is a significant public health concern making it all the more important that scarce federal resources be used wisely. Many agencies currently devote considerable time to identifying and providing HHS with spending information and HHS invests in this data collection. GAO continues to question the purpose of devoting federal resources to collecting these data, if they are not then used to ensure federal funds are used appropriately. Further, the Autism CARES Act, enacted in August 2014, directs HHS to take actions to ensure federal autism research is not unnecessarily duplicative. Specifically, the Act directs the Secretary of Health and Human Services to designate an official within the Department to oversee national autism research activities and requires that this official must, in consultation with the Secretaries of Defense and Education, ensure that autism research funded by HHS and other federal agencies is not unnecessarily duplicative.

    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: Open

    Comments: In July 2015 Education stated that it has reached out to the Department of Health and Human Services (HHS) and is awaiting guidance on coordination from HHS once HHS determines the reconfiguration of the Interagency Autism Coordinating Committee (IACC) based on the Autism CARES Act, which was enacted in August 2014. The law directs the Secretary of Health and Human Services to designate an official within the Department to oversee national autism research activities and requires that this official must, in consultation with the Secretaries of Defense and Education, ensure that autism research funded by HHS and other federal agencies is not unnecessarily duplicative. In August 2014 Education reported that it welcomes the opportunity to coordinate, under the reconfigured IACC, on issues concerning the scope of autism research, including identification of awards and examining protocols for coordinating with the Department of Defense and the National Science Foundation.

    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: Open

    Comments: In August 2015 DOD stated that it consistently interacts with the National Institutes of Health (NIH) and the Interagency Autism Coordinating Committee though committee membership. Further, the agency reported that an interagency agreement between DOD and NIH is being finalized to complete a pilot study aimed at developing requirements and testing the feasibility of transferring DOD medical research application data to NIH's Electronic Research Administration Data system, the data source for the Federal Research Portfolio Online Reporting Tools (RePORTER) application (http://federalreporter.nih.gov/). If the feasibility studies are successful, all research funded through DOD's Congressionally Directed Medical Research Programs (CDMRP), including autism research, will be included in NIH's data system. According to DOD, this will allow multiple agencies and the public to have visibility of research application data submitted to assist in identification of potential duplication and facilitate funding decisions. DOD anticipates that the feasibility studies will conclude by June 2016.

    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: Open

    Comments: In July 2015 HHS stated that it continues to disagree with the recommendation and referenced comments it provided to GAO in August 2014. In these comments, HHS stated that while it is important to avoid unnecessary duplication, the agency has not encountered any actual examples of unnecessary duplication nor did GAO identify any such instances. HHS stated that the National Institute of Health (NIH), which funded 81 percent of autism research during fiscal years 2008 through 2012, has a comprehensive internal data base that is used extensively to prevent unnecessary duplication and overlap. HHS also stated that the IACC provides opportunities for cross-agency information sharing. GAO agrees that NIH's database could potentially be used to identify duplicative projects. However, we found that it was not being used for this purpose. Specifically, NIH reported that searches of the database by NIH officials were conducted to identify duplicative projects led by the same principle investigator. NIH did not provide evidence that searches were conducted that would identify similar projects led by different principal investigators that may result in unnecessarily duplication--providing federal funding to support multiple projects with the same purpose, strategies, and target population that are not necessary to, for example, corroborate or replicate prior research results. Therefore, GAO stands by its conclusion that the monitoring of federal autism research funded by other federal agencies is limited. GAO agrees that the IACC provides opportunities for cross-agency information sharing, but such opportunities are not alone sufficient to monitor all federally funded autism research to avoid potential duplication. Further, the Autism CARES Act, enacted in August 2014, directs HHS to take actions to work with other agencies ensure federal autism research is not unnecessarily duplicative. Specifically, the Act directs the Secretary of Health and Human Services to designate an official within the Department to oversee national autism research activities and requires that this official must, in consultation with the Secretaries of Defense and Education, ensure that autism research funded by HHS and other federal agencies is not unnecessarily duplicative.

    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: Open

    Comments: In July 2015 NSF stated that it recognizes the importance of avoiding unnecessary duplication and reiterated efforts that NSF has taken and reported to us in August 2014. The agency stated that an NSF official regularly communicates with the Interagency Autism Coordinating Committee (IACC), including providing a 2014 briefing to IACC members on NSF-funded autism research. Once the IACC is reconfigured under the Autism CARES Act, NSF plans to continue attending the IACC meetings in addition to regularly checking the IACC's on-line database on autism research and providing information on NSF autism research grants for this database. NSF's program officer for Research in Disabilities Education along with the Director of the Office of Autism Research Coordination--who oversees the IACC--have attended two executive committee meetings of the Interagency Committee on Disability Research where they discussed autism research monitoring activities. NSF also stated that it requires research proposals submitted to NSF to provide information about current and pending support from other federal agencies for the proposal, as well as if the proposal has been sent to another agency. While this practice will help avoid funding duplicative research from the same principal investigator, it will not help identify similar projects led by different principal investigators that may result in unnecessarily duplication--providing federal funding to support multiple projects with the same purpose, strategies, and target population that are not necessary to, for example, corroborate or replicate prior research results. Therefore, while NSF has taken some actions to coordinate with other agencies, GAO still believes the agency's monitoring of federal autism research funded by other agencies is limited.

    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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