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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process Conference Call and Webinar on April 19, 2010

Subcommittee Members and OARC Staff Participating in the Teleconference: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Susan Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; Jennifer Johnson, Ed.D., Administration for Children and Families; Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Lyn Redwood, R.N., M.S.N., Coalition of SafeMinds; Cathy Rice, Ph.D. (representing Ed Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Alison Singer, M.B.A., Autism Science Foundation; Stephen M. Shore, Ed.D., Autism Spectrum Consulting;

Welcome, Introductions, and Approval of the Minutes

Dr. Insel welcomed the subcommittee members, introductions were made, and the minutes from the previous meeting on October 15, 2009 were approved.

Discussion of Strategic Plan Update

What is the appropriate balance of adding new objectives to the 2011 Strategic Plan vs. measuring progress on the 2010 Plan?

The subcommittee had come together to discuss the next update to the Strategic Plan for ASD Research and generate recommendations to present before the full committee. To foster discussion about the process, Dr. Insel posed several questions about the update. The first related to the scope of the revision: What is the appropriate balance between adding new objectives to the plan versus making minimal revisions and focusing on measuring the progress fulfilling the existing objectives?

Dr. Walter Koroshetz opened by suggesting that all new objectives should be noted as such to provide a clear timeline of the plan's evolution. Mr. Lee Grossman questioned how progress to the plan would be measured and Dr. Insel said that the portfolio analysis would be used to examine funding for each objective and the Summary of Advances could reveal new areas of opportunity. He also suggested that in order to gauge implementation, Federal and private funders could be brought to the full IACC meetings to report on their research investments. Dr. Cathy Rice was in favor of adding objectives on a two- or three-year basis to allow appropriate time to measure progress on the plan before modifying it. Dr. Koroshetz stated that new objectives should be driven by novel scientific findings. Dr. Jennifer Johnson advocated performing an in-depth revision every few years and a more minimal annual revision based on a progress evaluation and a review of new advances in the field. Ms. Lyn Redwood reminded the subcommittee that an annual update is mandated by the Combating Autism Act and recommended that an in-depth revision be done every year. Dr. Insel agreed that an annual update was required but asked whether the subcommittee felt that each year's revision should be comparable to the 2010 update when the number of objectives in the plan nearly doubled.

What approaches/activities can be used to measure progress on the 2010 Plan?

The subcommittee then discussed what approaches could be used to measure progress implementing the 2010 plan. Currently, the committee uses the portfolio analysis to track how research investments align with plan objectives and the Summary of Advances to identify important new scientific discoveries. Dr. Rice pointed out that the Summary of Advances reflected discoveries in the previous year and suggested preparing the report on a more regular basis (e.g., biannually) to be more timely for the plan update. Dr. Insel suggested the possibility of releasing the Summary of Advances in late summer or early fall to be more up-to-date. Ms. Redwood asked for clarification about whether the group was in favor of adding new objectives to the plan during the next update. Dr. Insel said that the subcommittee seemed to be in favor of a process rooted in evaluation (a "tweak"), but that did not preclude adding or removing objectives based on a review of the progress. Dr. Della Hann explained that the information from funders included in the portfolio analysis would be coded to objectives in the recently released 2010 plan, but would reflect investments made in 2009. Members of the subcommittee asked whether issuing another data call in October would yield more recent information and Dr. Hann said that NIH only collects information annually. Ms. Redwood asked whether research grants could be tied to resulting publications and was told that this could be done for NIH funding but that the subcommittee would be reliant on the willingness of private organizations to provide this information. The full IACC had stated at a previous meeting that they did not wish to collect information about resulting publications, so the matter would have to be raised again to go forward. The subcommittee asked about the timeframe for getting information from private funders and Dr. Hann said that it generally took between 3 to 5 weeks to receive data and that additional correspondence was sometimes necessary to clarify information. Ms. Redwood said that getting information about publications stemming from the research would help to evaluate whether the investments were fruitful. Dr. Insel noted that journal articles may take several years from the start of the grant to be published, so examining investments from the previous year may not allow adequate time.

What approaches/activities can be used to update the "What do we know?" and "What do we need?" sections of the Plan?

The subcommittee then discussed how to best update the "What do we know?" and "What do we need?" sections of the plan. In the past, the IACC has used Requests for Information (RFIs), town hall meetings, and scientific workshops to gather information for these sections. Ms. Ellen Blackwell felt that RFIs were useful and she supported using a suggestion box at the International Meeting for Autism Research (IMFAR) in May 2010. In the previous RFI, open July - August 2009, people were able to comment on the gaps, opportunities, and needs related to each chapter. Mr. Grossman asked that the RFI comment period be extended to two and a half months to allow more people to respond. Ms. Redwood requested that the response boxes not be limited to 500 characters and Dr. Hann explained that this related to the web form and making later analysis easier. The duration of the RFI response window is dictated by when the committee needs the information, she said. Dr. Johnson suggested using the RFI to collect quantitative data about the plan. Dr. Insel said that in his experience, surveys of this type did not lead to meaningful data. The subcommittee agreed that an RFI should again be organized around the plan chapters and Ms. Redwood asked to make it possible to comment on the introduction.

The subcommittee then discussed the use of town hall meetings and scientific workshops. Ms. Blackwell said that the services town hall held in 2009 was of great use to her group during the scientific workshops. Ms. Redwood suggested organizing a town hall around gaps in the strategic plan or the role of environment in autism. Dr. Insel noted that in the past, town hall meetings were used to inform the "What do we need?" section and the scientific workshops related to "What do we know?" Dr. Koroshetz said that town hall meetings were useful to identify a specific topic of interest and the workshops could then be used to explore the subject in depth. Dr. Rice said that if a workshop were to take place, participants would need to understand that the purpose was not to rewrite the plan but to focus on evaluating the current plan and identifying critical gaps. Ms. Redwood asked if a scientific workshop could be convened that focused on the gaps identified in the portfolio analysis. Dr. Insel said that there would not be enough time to complete an RFI prior to a scientific workshop before the next update, but that this could be used in following years. Dr. Hann explained that if funding information was available in July, a scientific workshop could be convened in September or October at the earliest and this might not provide enough time for a January update. The subcommittee discussed the possibility of convening a workshop based on the themes taken away from IMFAR. Dr. Rice talked about the need to distinguish gaps that resulted from lack of implementation from those stemming from new scientific opportunities. Dr. Insel said that the full IACC meetings were also a source for exploring new areas of interest, such as the epigenomics talk that took place at the January 2010 meeting. The subcommittee brainstormed other potential topics for a scientific workshop, including the emerging area of microbiomics, environmental risk factors (particularly their measurement), and services and supports. Dr. Insel mentioned that NIH and Autism Speaks were collaborating to hold a meeting on drug development for ASD. Ms. Blackwell suggested focusing on how medications were used to treat challenging behaviors in people with ASD. Dr. Insel noted that the subcommittee had brainstormed several suggestions for workshops during the meeting without the need for an RFI.

What approaches/activities can be used to update the objectives for each chapter in the Plan?

The subcommittee discussed methods for updating the plan objectives and Ms. Redwood asked if the NIH Autism Coordinating Committee (ACC) had the opportunity to review the strategic plan. Dr. Insel explained that the ACC was involved in implementing the plan and that the IACC members from NIH represent the views of their program staff. Dr. Insel then summarized the recommendations generated during the meeting to propose before the full committee: The next update would focus mostly on measuring progress rather than a major revision, although there would still be opportunity to add or remove objectives. The portfolio analysis and Summary of Advances would be used during the update and in the future, both would be completed earlier in the year to make them more pertinent to the process. The Summary of Advances will be completed on a biannual basis to capture the most up-to-date discoveries. The subcommittee recommends releasing an RFI on the plan to identify gaps and opportunities. The RFI will be organized by plan chapter, including the intro, and will be open for a longer period of time. The IACC should hold a scientific workshop on a specific topic. The subcommittee will suggest several and ask for additional ideas from the committee.

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Adjournment

Dr. Insel reminded the subcommittee that the full IACC would be meeting at the Ronald Reagan building in Washington D.C., on April 30, 2010. He confirmed the 10:00 a.m. start time and the meeting was then adjourned.

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Certification

These minutes of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the subcommittee on September 21, 2010.

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

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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