Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Conference Call and Webinar on July 27, 2012
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a conference call on Friday, July 27, 2012, from 10:00 a.m. to 1:00 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.
Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Coleen Boyle, Ph.D., M.S. Hyg., Centers for Disease Control and Prevention (CDC); Denise Dougherty, Ph.D, Agency for Healthcare Research and Quality (AHRQ); Tiffany R. Farchione, M.D., Food and Drug Administration (FDA); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD) (for Alan E. Guttmacher, M.D.); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (for Linda Birnbaum, Ph.D.); Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL); Shui-Lin Niu, Ph.D., U.S. Department of Defense (DoD) (for Donna M. Kimbark, Ph.D.); John P. O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Larry Wexler, Ed.D., U.S. Department of Education (ED) (for Alexa Posny, Ph.D.); Idil Abdull, Somali American Autism Foundation; Anshu Batra, M.D., developmental pediatrician, Our Special Kids; Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew J. Carey, Ph.D., Left Brain Right Brain and other autism blogs; Dennis W. Choi, M.D., Ph.D., Simons Foundation; Jose F. Cordero, M.D., M.P.H., University of Puerto Rico; Jan M. Crandy, Nevada Commission on Autism Spectrum Disorders; Geraldine Dawson, Ph.D., Autism Speaks; David S. Mandell, Sc.D., University of Pennsylvania; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)
Roll Call and Opening Remarks
The Interagency Autism Coordinating Committee convened on July 27, 2012 to complete unfinished committee business from their prior meeting on July 10, 2012, namely, to discuss and vote on the formation of subcommittees as well as to discuss future IACC activities and public comments that were received at the prior IACC meeting. Dr. Thomas Insel opened the meeting at 10:04 a.m. and Dr. Daniels called the roll.
Dr. Daniels reviewed the IACC's responsibilities, including advising HHS Secretary Sebelius on matters relating to autism; establishing a list of autism research priorities; communicating advances in the field to Congress, Federal agencies, private organizations and the general public; and monitoring Federal activities and analyzing research trends. Dr. Daniels also introduced the Office of Autism Research Coordination (OARC), which assists the IACC with planning meetings and workshops, analysis and report preparation, strategic planning, research monitoring activities, and gathering public input. Dr. Daniels further explained that the Combating Autism Act and the Combating Autism Reauthorization Act require a minimum of two full IACC meetings per year and that all IACC meetings and workshops are open to the public and must be noticed in the Federal Register. Dr. Daniels noted that the IACC's website contains all IACC publications, documents from every meeting, access to other government documents, and a list of events that may be of interest.
Ms. Redwood expressed concern that staffing in the Office of Autism Research Coordination would be low while Dr. Daniels is on maternity leave and that perhaps additional staff could be added. Dr. Insel responded that another OARC staff member, Dr. Dodson, would also be leaving the staff in August and that staffing is an issue that they are discussing, along with related budgetary issues. Ms. Redwood noted that the Combating Autism Act states that the Secretary will provide administrative support as necessary, and Dr. Insel replied that discussions with the Secretary's office regarding that language are underway.
Ms. Crandy asked for clarification on whether committee members could gather information to bring back to the committee or if they are only able to bring in speakers for meetings. Dr. Daniels responded that any action or information gathering that is done on behalf of the committee needs to be coordinated with the Designated Federal Official (Dr. Daniels in this case) and approved by the full committee.
Dr. Insel stated that because the Combating Autism Act sunset in 2011, the IACC will have to set up new subcommittees under the reauthorization. The current proposal would include two new subcommittees, one for science and one for services. Safety issues would fall under the purview of the services subcommittee. Dr. Insel mentioned that everything that subcommittees do falls under the Federal Advisory Committee Act (FACA), which requires all activities to be transparent and public. Any subcommittee recommendations or actions must be approved by the full committee. Dr. Daniels added that only IACC members may vote in the subcommittees. However, the subcommittees may invite outside experts to provide advice.
Dr. Insel noted that during the previous meeting on July 10, the "Sciences" subcommittee was assigned the responsibility of updating the IACC Strategic Plan. However, that led to too many volunteers for the "Sciences" subcommittee, so Dr. Insel proposed that the drafting of the Strategic Plan Update be split appropriately between the two subcommittees.
The discussion then turned to establishing the titles, membership and leadership of the subcommittees, as well as to define the purview of each. Responding to questions from the committee members, Dr. Insel noted that issues related to behavioral interventions would fall under the "Sciences" subcommittee and implementation science and dissemination research would fall into the realm of the "Services" subcommittee. Educational topics and issues related to access would also be under the purview of the "Services" subcommittee. In addition to Questions 5 and 6, the "Services" subcommittee would also be able to update relevant parts of Question 7. Each subcommittee can further define their purview and mission once they begin meeting.
Dr. Mandell proposed changing the names of the subcommittees (in line with their change in mission) from the previously dubbed "Sciences" and "Services" subcommittees to better reflect their purposes. Dr. Boyle proposed changing "Science" to "Biomedical and Behavioral Research" and "Services" to "Services and Policy Research." Dr. Dougherty asked that "translational science" be included in one of the subcommittees' titles. Ms. Crandy would like "environmental research" included in the title of the "Sciences" subcommittee. Dr. Daniels recommended that subcommittees limit their names to four or five words for the sake of simplicity, and emphasized that each committee can work on a description which clarifies the areas of focus for the committee. Dr. Dawson proposed subcommittee titles as follows: "Services Research and Policy" and "Biomedical, Behavioral and Translational Research." Dr. Birnbaum argued that if "behavioral" were included in the title, then "environmental" should be as well. Dr. Boyle suggested replacing "biomedical, behavioral" with "basic."
John O'Brian asked if the intent was that the subcommittees come up with a mission statement so that there are clear demarcation lines between the two subcommittees. Dr. Insel agreed, stating that the purpose of this meeting is just to form the subcommittees, develop a general outline for them, and to establish the membership and the leadership. The groups will then meet individually and start to map out more specifically what they will take on over the next two years.
Several other variations on titles were considered, but the discussion concluded with the following subcommittee titles:
- Subcommittee for Basic and Translational Research
- Subcommittee for Services Research and Policy
Rather than holding a vote, the committee was asked if there was any opposition to the two titles. There was no vocal opposition to these titles, and so they were accepted and the conversation moved forward.
Based on responses to a previous email from Dr. Daniels and pursuant discussion on the call, the members of the subcommittee were established. Each subcommittee is limited to a quorum, which is 15 members. Ms. Redwood and Ms. Singer volunteered to serve on both subcommittees so that there was continuity on the services side from what had been done by the previous IACC in terms of safety. Dr. Daniels indicated that that would be fine. Dr. Insel appointed Geri Dawson and himself as co-chairs of the Basic and Translational Research subcommittee and David Mandell and Denise Dougherty as co-chairs of the Services Research and Policy subcommittee.
Dr. Insel told the committee that each subcommittee would look at the text in the "what do we know" and "what do we need" sections of the Strategic Plan and provide a focused update on these parts as a stand-alone document for what the IACC will submit to Congress by December 2012. The updates should include major breakthroughs since 2011, emerging needs and opportunities, and matters to consider for the next strategic plan in 2013. Dr. Insel indicated that this update will be more qualitative and could be rather brief.
In order to facilitate the 2012 Strategic Plan update, the IACC will arrange in-person workshops with outside experts for each subcommittee. To plan for these workshops, the subcommittees will need to consider who the experts will be, what kind of data they will need, and how they will accomplish their work to write the Strategic Plan update. Dr. Insel noted that the full committee will convene in December to review and modify the drafts and approve the final document. Dr. Daniels added that the IACC has tentatively scheduled a full committee meeting for October 30 where the subcommittees can present their reports. Ms. Redwood said it would be helpful to examine what progress is being made in fulfilling the current objectives of the strategic plan, and Dr. Insel agreed, stating that that could be part of the charge to the external experts. Ms. Singer wanted to use the workshops to prioritize objectives. Dr. Insel said that that could be a charge to the subcommittees and the external experts. Dr. Dawson stated that in looking ahead to the 2013 Strategic Plan update, the committee might want to think about making the Plan more goal-oriented. Ms. Redwood inquired about how the external experts will be identified, and Dr. Insel indicated that the subcommittees would determine which experts to invite.
Summary of Advances
Dr. Daniels provided an overview of how the Summary of Advances process has developed over the past few years. In 2007 and 2008, the IACC asked OARC to develop an integrated narrative describing advances and tying them together. This task was sometimes difficult because some advances were not closely related to one another. After 2008, the IACC voted to change the format. Since 2009, the committee has selected the top 20 articles and OARC has summarized them separately. In this process, ten articles were selected midyear, and another 10 at the end of the year. Only articles fully published in print during the calendar year were eligible.
Dr. Daniels told the committee that at this meeting, they needed to decide whether to keep the current format of the Summary of Advances, whether to select articles once or twice a year, and whether to allow the inclusion of electronic publications. Dr. Mandell and Mr. Carey expressed support for including electronic publications. Ms. Redwood questioned whether simply selecting specific articles met the intent of the original language of the Combating Autism Act. She felt the summary should assess what progress has been made in the past year, rather than simply summarize a recent research article. Dr. Dawson proposed including an assessment where progress had and had not been made. The committee's consensus was that it would generally continue with the current format, select articles once a year, and allow the inclusion of electronic publications (since that will embrace the most recent advances). If policies or other advances occurred during the year, these might also be included in the Summary of Advances if appropriate. The IACC and subcommittees can help identify what documents or areas this might include. There was no vocal opposition to this plan.
Dr. Daniels described the Portfolio Analysis as a quantitative analysis of the autism spectrum disorder (ASD) research portfolio across Federal agencies and private organizations. It is prepared by OARC and assists the IACC in fulfilling its statutory requirements. Approval from the committee was granted to begin collection of data from 2011 for the Portfolio Analysis. Data may be collected from up to nine private funders; eight are currently included. To collect data from more than nine, approval must be received from the Office of Management and Budget (OMB). OARC is in the process of trying to obtain OMB clearance, but the process typically takes several months.
Dr. Daniels invited committee members to propose possible private funders to invite to participate in the 2011 Portfolio Analysis. Two fragile X organizations, FRAXA and the National Fragile X Foundation, have recently offered the committee their data. Dr. Insel suggested the Nancy Lurie Marks Family Foundation, the Howard Hughes Medical Institute, and the Brain and Behavior Research Foundation. Mr. Carey proposed the Nancy Lurie Marks Foundation. Dr. Daniels said the Lurie Marks Foundation had elected not to participate. Ms. Singer iterated the need for all funders to abide by the same reporting rules, namely, that family foundations cannot provide data anonymously and must have the same full disclosure about their projects that other organizations do. Ms. Abdull suggested Howard Hughes Medical Institute. Dr. Insel suggested asking the Brain and Behavior Research Foundation first because they are high on the list of funders in the IACC/OARC Publications Analysis.
Dr. Dawson mentioned that if government agencies will be reporting services programs such as the LEND program in future analyses, then other organizations should be encouraged to do the same (i.e., reporting grants for professional training and services toolkits, etc.) and not just report investigator-initiated grants. She is concerned that if private organizations are underreporting, then comparisons with government funders are unequal. Dr. Dawson would like there to be some sort of guidelines about what is and what is not included in the report so that all funders send the same types of information. Dr. Daniels emphasized that the purpose of the report is to be inclusive of projects that were considered to be responsive to objectives of the Strategic Plan, which would be of interest to the committee to know about. All projects that were included contained an evaluative aspect or new innovative processes, pilot projects, etc., which are responsive to the Strategic Plan and differentiate those projects from normal services provision. It was agreed that in the future, funders would be given clearer guidelines for this section, and that this would also be clear on the IACC website.
Dr. Batra asked if the committee was limited by mandate to U.S. funders. Dr. Daniels said it was, but that OARC has expressed interest in the possibility of an international analysis of autism research if the committee feels that it would be useful. Dr. Wexler and Ms. Abdull voiced support for such an endeavor. Mr. Robertson proposed recommending to Secretary Sebelius the creation of a coalition of interested bodies from around the world to discuss international data sharing in the area of autism research. Dr. Dawson replied that a lot of work along those lines was going on at the United Nations. Dr. Insel proposed setting aside time at the next full committee meeting to discuss a more global perspective.
IACC Workshops Overview, presented by Dr. Daniels
Dr. Daniels presented an overview of the workshops that the IACC can hold. Under the Combating Autism Act, the IACC is permitted to convene workshops on areas of interest to the community. Subcommittees and their working groups are generally responsible for proposing and planning workshops. Any proposed workshops must be approved by the full committee and will require several months lead-time for Federal administrative approval as well. Under the current budgetary situation, funding for workshops is limited but they are possible.
Public Comments Discussion
Dr. Insel invited the committee members to discuss the oral and written public comments received at the previous meeting on July 10, 2012. Dr. Dawson stated that among the public she sensed a widespread need to understand the causes of autism and environmental risk factors. Dr. Dawson also senses a belief among the public that the committee had not done enough on wandering. Ms. Singer encouraged the committee to meet with officials from the Department of Justice about creating an autism-specific alert to combat wandering. Ms. Abdull expressed concern that not every jurisdiction would be willing to pay for an autism-specific alert system and suggested making wandering part of a child's IEP within the education system. Ms. Singer said that prevention is key to the issue of wandering. Ms. Singer and Dr. Batra commented on the importance of addressing the wandering issue at both the Federal (where awareness is key) and local levels (where policy is really implemented). Dr. Daniels suggested that Dr. Dawson, Ms. Singer, and Ms. Abdull could form a working group on wandering within the Services Research and Policy subcommittee. Dr. Daniels went on to say that the Department of Justice meeting that Ms. Singer and Ms. Redwood were unable to convene due to the sunset of the previous IACC could now be considered by the committee if they wish to prioritize it. Dr. Boyle proposed making wandering a topic at the next full committee meeting.
Ms. Redwood felt a concern from the public comments that there is frustration because we are not following up on a number of projects that have shown interesting results. Developing a funding mechanism to replicate results is one of the objectives in Question 7 of the Strategic Plan. Ms. Redwood also mentioned one comment that suggested developing an environmental task force to focus on that research.
Dr. Burton-Hoyle asked if the committee was considering the National Standards Project on how an individual is diagnosed. Dr. Insel said it was important to have standardized approaches to diagnosis and linked this to the Strategic Plan's emphasis on creation of common data elements. Mr. Robertson spoke of the need for diagnostic instruments for all ages. Dr. Batra raised the question of how to arrive at a consensus on diagnosis. Ms. Abdull said it was important to remember cultural differences while attempting to reach consensus on diagnosis.
Ms. Redwood expressed a concern that much of the funding was going to genetic risk factors and not enough to environmental risk factors. Ms. Crandy made a motion to create an environmental task force. Ms. Redwood offered a second. Dr. Batra offered a third. Dr. Insel deferred the matter to the subcommittees to develop a more defined proposal along those lines that could then be presented to the full committee. Mr. Robertson pointed out that environment was not the only area many people felt was underfunded. Dr. Insel said it was really up to the subcommittees to make proposals on what the top priorities should be.
Dr. Daniels said she would email the two subcommittees to establish meeting dates and agendas to work on the Strategic Plan updates. Dr. Insel adjourned the meeting at 12:37 p.m.
These minutes of the IACC Full Committee were approved by the Committee.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee