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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan for Autism Spectrum Disorder Question 1 Planning Group, Conference Call on March 26, 2013

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan for Autism Spectrum Disorder, Question 1 Planning Group, convened a conference call on Tuesday, March 26, 2013, at 10:00 a.m.

In accordance with Public Law 92-463, the meeting was open to the public. Coleen Boyle, Ph.D., M.S., Hyg., Chair, presided.

Participants:

Coleen Boyle, Ph.D., M.S., Hyg., Chair, Centers for Disease Control and Prevention (CDC); Susan Daniels, Ph.D., Executive Secretary IACC, National Institute of Mental Health (NIMH); Anshu Batra, M.D., Our Special Kids; Matthew Carey, Ph.D., Contributor, Left Brain Right Brain; Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Alison Tepper Singer, M.B.A., Autism Science Foundation

Roll Call and Opening Remarks

Dr. Susan Daniels welcomed the Planning Group and members of the public. She said that this Group was charged by the BTR Subcommittee with developing a model for the Strategic Plan update based on Question 1. This model would be presented to the Subcommittee and then to the full Committee. This model could be used to evaluate progress on the Strategic Plan update for all of the questions in the Plan and their objectives. Dr. Daniels noted that although the IACC previously evaluated progress at the Strategic Plan Question level, the Committee was considering a more detailed look at progress made on individual objectives, an overall assessment of the direction of the Plan, and potentially prioritization of the objectives. Dr. Daniels took a roll call.

Planning Group Chair, Dr. Coleen Boyle, thanked members for participating and said that it might be helpful to discuss the questions they would be addressing and how this process would complement or build upon the Office of Autism Research Coordination's (OARC) existing efforts. She said that this Planning Group was familiar with the products that emerged from the 2012 evaluation exercise; final questions could include how the new evaluation would advance the Strategic Plan and how it would help the research plan to move forward.

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Discussion of Strategies to Assess Strategic Plan Progress

Ms. Lyn Redwood said that she wanted to get a clearer idea of how many of the Strategic Plan objectives have been partially or fully accomplished. This information would allow the Group to focus on addressing knowledge gaps. While the annual chapter updates and the yearly Autism Research Portfolio Analysis have been helpful, there had been no effort to date to look at cumulative information across several years, said Ms. Redwood.

Dr. Daniels said that the IACC Portfolio Analysis addressed the number of projects that were funded, the distribution of funding/projects across the Strategic Plan, and the status of completion of each objective based on funding and projects, but that it does not address the status of completion in terms of scientific/research accomplishments. Ms. Redwood suggested that the Group should look at both project funding and research accomplishments. Given that each research objective was written to be measurable and time-bound, she said, it would be important to determine if the objectives were on target. She said that it was necessary to answer the questions in the Strategic Plan and to drill down into each of the objectives. Objectives that had been achieved could be designated as complete.

Dr. Boyle said that the primary question was to identify what the Committee wanted to achieve with this review. This would involve assessing accomplishments at the objective level. This also would mean evaluation of funding and determining whether any research findings had been or were being translated into practice. Dr. Daniels noted that OARC already had determined the number of projects funded for each objective through 2010 and was collecting data from 2011 and 2012.

Ms. Alison Singer and Dr. Boyle agreed that it would be helpful to assess objective/funding outcomes. Also, it would be helpful to evaluate Strategic Plan outcomes based on whether the objectives and the related funding had provided real value in terms of outcomes. Ms. Redwood suggested releasing a Request for Information (RFI), but Dr. Daniels noted that the release of an RFI would result in in thousands of comments that would need to be processed. It would fall to the Committee to organize these comments, so that OARC could keep the labor-intensive 2011 and 2012 Portfolio Analysis on schedule. She said that OARC could collect the RFI data if needed, but the analysis would be the most important component and it was unclear how that could be accomplished given ongoing projects that the committee had requested.

Ms. Redwood said that in addition to information on the objectives, every question had an aspirational goal except for Question 1. It would be valuable to determine whether these goals had been met. Dr. Walter Koroshetz said that they would need additional information, in order to identify changes for each goal since 2006. He added that they would need participation from individuals in the autism community and researchers, in order to identify what had been achieved and the obstacles encountered. Dr. Koroshetz estimated that they would need to read the 50 to 100 papers to try to understand the scientific progress for each goal. A targeted RFI would help get the information needed, he said. There was a discussion about inviting experts and community members to provide input from the research community and the public through an RFI, if conducted.

Then the Planning Group discussed the use of expert panels.  Dr. Batra said she would hesitate to convene panels of experts, because they might not be able to provide the information needed. She suggested this could be better accomplished by tracking the grants and their progress. Dr. Daniels said that while OARC had completed the first step of determining where funding had gone through its ongoing portfolio analysis activities. The second step – determining the state of the science that resulted from this funding – would probably require talking with experts or looking at publications. Dr. Daniels said that as a part of its publications analysis, OARC had looked into a way to automate the identification of publications that matched specific grants. However, they learned that citation data are not of sufficient quality to accomplish this task efficiently.

Ms. Singer said that Autism Speaks had a good tool for measuring the qualitative output of grants. Perhaps this tool could be used as a template to send to funded researchers. Then expert panels could look at the information generated. Dr. Daniels mentioned two caveats. First, grantees cannot be required to respond or do any additional work related to such a request. Second, it will be necessary to ensure that no government regulations would be broken by sending a request that could be considered a survey; this type of effort requires higher level approval that takes about 1 year to obtain from the White House Office of Management and Budget.

Dr. Boyle said that another possibility, within the federal system, would be to work with existing agencies to get detailed information on unpublished research results being obtained in currently ongoing grant research and the dollar amounts. This assessment could be done in addition to the portfolio review. Dr. Daniels said that while such information could be provided by program officers, this would mean a significant amount of work for the program offices and may violate confidentiality rules if the information is unpublished or otherwise not publicly available.

Dr. Batra asked if the Planning Group could ask parents, pediatricians, family practitioners, and nurses how research had helped them. It was noted that one possibility would be to have Autism Speaks survey members of the American Academy of Pediatrics (AAP). Ms. Redwood mentioned the possibility of surveying parents through the Interactive Autism Network (IAN).

Ms. Redwood and Dr. Koroshetz discussed the pros and cons of convening expert panels. Ms. Redwood said that they should take the information that already had been collected by OARC and start compiling it. There was discussion about when the 2011 and 2012 data would be available. Ms. Redwood said the data were compiled in individual years; this would not allow the Group to look at cumulative funding. Dr. Daniels said that OARC could attempt to create a document that included cumulative funding. However, she noted there are many inherent problems involved in this approach due to the significant changes in wording and numbers of objectives over the years, for example. Ms. Redwood proposed a possible way of tracking changes in objectives to make the document less confusing.

Dr. Boyle said the Planning Group would continue to flesh out the process of evaluating accomplishments in in the past 5 years. They would also assess whether and how those accomplishments had contributed to progress from both scientific and community perspectives.

Dr. Matthew Carey pointed out that they did not know who had been applying (or not applying) for grants. He questioned whether some areas of research received more applications and thus had more funded grants. He was uncertain whether there was a way to surmount this obstacle in order to get this key information. Dr. Koroshetz said that agencies were not allowed to release information about applications that were not funded, but they could release the numbers of applicants that responded to a specific Funding Opportunity Announcement (FOA). He said that the first step should be to identify research that had been funded. Then they could determine whether they were focused on the right solution.

Ms. Redwood said that the Group needed to be realistic about what could be accomplished, given that the IACC charter will end September 30, 2014. Dr. Daniels said that by law the Strategic Plan must be updated by December of 2013. She said the process discussed today would feed into the update, which could be completed on time. Dr. Batra said that they might need to look at whatever data could be accumulated for 2010 and produce what could be termed an 'accountability report' regarding specific areas of research, in order to determine where the money had been spent and what had been accomplished.

Ms. Redwood said one option would be to wait until the 2011 and 2012 data were available and then proceed with this effort. Another option would be to begin to look at the cumulative document that included funding from 2008, 2009, and 2010. They could incorporate the 2011 and 2012 data later. Dr. Daniels said that it was unlikely that the 2011 and 2012 grant information would be available until the fall of 2013. Additional projects for OARC could slow the Portfolio Analysis process. She said that a document could be provided that showed a mock-up of cumulative grant funding information for Question 1, but it would not be incorporated into the web tool. She also noted that any process for this update would need to be approved by the Subcommittee for Basic and Translational Research and then the full Committee. Ms. Redwood said that she would present a proposal to the full Committee at the April 9th meeting. Dr. Daniels said that the document with cumulative funding from the 2008, 2009, and 2010 projects would be ready by then, if Ms. Redwood and Dr. Carey could assist if needed.

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Wrap Up and Next Steps

Dr. Boyle reviewed possible sources of information:

  • Data sources for the expert panels – cumulative information on grants and dollars available through 2010 (data for 2011 and 2012 may be appended);
  • Two RFIs, one for researchers about progress in the field and one for the general public to express feedback on the Strategic Plan;
  • Overviews from project officers, who were responsible for the bundles of grants for each agency or organization;
  • The IAN survey; and
  • A mock-up of cumulative grant information for Question 1 for the April 9th meeting.

Dr. Koroshetz clarified that the RFI for the general public would include practitioners, as well as parents, and patients. Group members discussed outreach, including how to find other community practitioners. They talked about the possibility of using the AAP e-news to communicate with AAP members.

Dr. Boyle explained that efforts on these projects could not begin until they had been considered and approved by the full Committee. Dr. Koroshetz said he would start sketching out the RFI for grantees and would work with Dr. Boyle to summarize the process for developing the RFI. Dr. Batra and Dr. Carey said they would move forward on the RFI for the public. Dr. Daniels said she would work on the cumulative funding table.

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Adjournment

The conference call was adjourned at 4:12 p.m.

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Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/ June 3, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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