Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process on June 16, 2009
The Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process convened a meeting on June 16, 2009, in Conference Room H of the Executive Plaza North building at the National Institutes of Health in Rockville, Maryland, from 10 a.m. to 1 p.m. Eastern.
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.
Subcommittee Member Participants: 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; Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Autism Society of America; Lyn Redwood, R.N., M.S.N., C.R.N.P., Coalition for SafeMinds; Alison Tepper-Singer, M.B.A., Autism Science Foundation (ASF); and Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Edwin Trevathan, M.D., M.P.H.)
Welcome and Introductions
IACC Chairman Thomas Insel welcomed the members of the Subcommittee for Planning the Annual Strategic Plan Updating Process. The members introduced themselves and then unanimously approved the minutes of the previous planning subcommittee meeting held on March 17, 2009.
Dr. Della Hann presented an analysis of Federal and private funding for ASD research in 2008. The Office of Autism Research (OARC), acting on behalf of the IACC, approached 19 funders of ASD research for the portfolio analysis. These agencies and organizations were asked to analyze their ASD research portfolios based on the objectives set in the IACC Strategic Plan for ASD Research. The slide set of the initial portfolio analysis* is available here (PDF – 449 KB).
Fifteen funders responded to the request; four reported that they did not fund ASD research and the remaining eleven provided data for the analysis. Dr. Hann informed the committee that the Doug Flutie foundation had responded but was unsure whether their activities constituted research. The Flutie foundation provides family service grants and funds for organizations to purchase therapeutic equipment. After deliberating, the subcommittee agreed that the foundation was not conducting research and therefore, should not be included in the portfolio analysis. Dr. Hann informed the committee that data from the Simons foundation was still pending so was not included in the current analysis. Dr. Insel said that funding information from Simons would dramatically impact the funding landscape, estimating that they would represent the second largest funder behind the National Institutes of Health (NIH).
He also noted that the Substance Abuse and Mental Health Services Administration (SAMHSA) reported that the agency did not fund ASD research. Ms. Ellen Blackwell noted that SAMHSA may be similar to the Centers for Medicare & Medicaid Services (CMS) – while not funding autism-specific projects, the agency may still support research that impacts people with ASD. Dr. Insel noted that AHRQ and HRSA had not contributed funding information and said that their contributions would be important in the future.
Ms. Alison Singer inquired about the time frame for the data provided by funders. Dr. Hann said data represented the most recent twelve months for which organizations had information so start points varied. Dr. Catherine Rice asked why the Food and Drug Administration (FDA) had not been approached and Dr. Insel said that the FDA does little research. He noted that the agency had been represented on the IACC until the committee was reconstituted in 2006.
Dr. Hann then presented a slide comparing Federal to private funding for ASD research. Federal funding constituted 80 percent of the total, while private funding represented the remaining 20 percent. Ms. Singer asked how this breakdown compared to other disorders funded by NIMH. After reminding the committee that Federal funding came from many government agencies, Dr. Insel responded that NIMH contributed the overwhelming majority of funding for research on mental health issues. The only major private funder, NARSAD, has a total budget of less than $5 million per year, while NIMH provides about $1 billion annually, he said. Noting that this year had been difficult for private funding due to economic strain, Dr. Insel said that the portfolio analysis would be used as a baseline to measure future funding.
Mr. Lee Grossman asked if research funding from pharmaceutical companies was taken into consideration when calculating mental health research funding. Dr. Insel said that it would be impossible to capture pharmaceutical and biotechnology funding breakdown by individual mental health disorder.
Dr. Hann presented a figure detailing the breakdown of ASD research funding by questions outlined in the IACC Strategic Plan for ASD Research.1 Question 3: "What caused this to happen and can it be prevented?" received the most funding with 34 percent of the total research funding. It was followed by Question 4: "Which treatments and interventions will help?" with 24 percent of the funding. Question 5: "Where can I turn for help?" received the least amount of funding with 1 percent of the total. Ms. Singer inquired about the "Other" category for research not reflected in the strategic plan, representing 4 percent of the funding. Dr. Hann explained that funders had coded their own research funding according to which strategic plan question most closely aligned. Funders who felt that their projects were not reflected in any of the questions chose the "Other" category. Ms. Lyn Redwood and Ms. Singer recommended that OARC review the items included in the "Other" category to evaluate whether they could be coded according to one of the six strategic plan questions.
The subcommittee was then presented with a graph illustrating total funding breakdown into specific strategic plan objectives. Ms. Singer requested a separate analysis of how Federal spending aligns with the plan objectives. Dr. Rice noted that some of the funding was not tied to specific objectives in the plan and the subcommittee requested that OARC attempt to code projects that could appropriately align with objectives. Dr. Insel clarified that projects were only assigned to one objective so that funding would not be counted twice. Ms. Redwood asked how projects funded over several years were represented and was told that total funding was divided by the number of years of funding to produce an annual figure. The subcommittee members examined the breakdown of funding by objective and concluded that this analysis would have been helpful before writing the initial Strategic Plan for ASD Research. Now, the analysis could be used to identify mismatch between estimated budgetary requirements and existing funding in order to modify the plan. For Questions 5 and 6, the subcommittee noted that there was no funding for the following objectives:
- 5.2 Support two studies that assess how variations and access to services affect family functioning in diverse populations by 2012. IACC Recommended Budget: $1,000,000 over 3 years.
- 5.3 Test the efficacy and cost-effectiveness of at least four evidence-based services for people with ASD of all ages in community settings by 2015. IACC Recommended Budget: $16,700,000 over 5 years.
- 6.2 Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.
- 6.4 Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009. IACC Recommended Budget: $520,000 over 1 year.
- 6.6 Develop and have available to the research community means by which to merge or link administrative databases that allow for tracking the involvement of people living with ASD research in health care, education, and social services by 2018. IACC Recommended Budget and Time Frame: To Be Determined.
- 6.7 Conduct a cost/benefit analysis on provision of services and interventions over the lifespan with regard to long-term benefits including employment, productivity, and the need for federal/state assistance. IACC Recommended Budget: $2,300,000 over 3 years.
Ms. Redwood suggested that a method be devised to determine the quality of the research being conducted. Dr. Insel said that opportunities for collaboration could be identified by sorting the funding information by principal investigator or research plan objective. He suggested that creating an annually-updated database of ASD funding would be a useful resource and commented that NDAR might be able to undertake such a project. Dr. Rice said that an ongoing database would be a very helpful tool to avoid duplication of research efforts and aid in collaboration. Dr. Insel said that the idea should be put to the full IACC in July.
Request for Information (RFI) – Content and Timeline
The planning subcommittee then discussed issuing an RFI to inform the updating process. Dr. Insel asked the subcommittee to consider what input from the public would be most useful, when the RFI should be issued, and how the RFI would be used in coordination with the Scientific Workshops that had been discussed. Dr. Rice asked whether an RFI would be used to revise plan objectives or to evaluate the progress of the goals set in the research plan. Ms. Singer said that an RFI had been issued soliciting comments on the draft in August2 so she felt that another was not needed. Ms. Redwood disagreed, saying that the committee had not yet received public input on the strategic plan as it was sent to the HHS Secretary. Dr. Hann reminded the subcommittee that a more specific and streamlined RFI would produce more usable input. Insel reiterated the sentiment from the March 17, 2009 planning subcommittee meeting that there was little enthusiasm for a town hall meeting. He suggested that in the future, a town hall meeting could be integrated into IMFAR or another national autism meeting. In considering the RFI timeline, Ms. Singer asked whether information about the grants funded by stimulus money would be available by the end of September. Dr. Insel said that funding decisions in response to the large autism Request for Applications (RFA)3 would be known by the end of August. He said that Challenge grant funding (as part of the American Recovery and Reinvestment Act)4 would be known at the end of August through mid-September.
Mr. Grossman asked if the strategic plan could realistically be updated by November 2009. Dr. Hann noted that the RFI would inform the workshop and the workshop would inform the update. Dr. Insel cautioned against major changes to the plan before the initial version could be properly implemented. The subcommittee discussed focusing the RFI on topics that had been deferred in the initial plan. Ms. Redwood said she felt that the subcommittee should also solicit feedback from participants in the Scientific Workshop.
Scientific Workshop – Content and Timeline
The subcommittee decided to discuss the format of the Scientific Workshop before returning to the RFI. The subcommittee was told that the workshop could potentially be held September 30 to October 1, 2009. Ms. Blackwell suggested structuring the workshop according to the strategic plan questions. Ms. Grossman asked if the workshop would be invitation-only or conference style. Dr. Rice said that she recommended structuring the workshop around two questions: "Are there objectives that no longer need to be a priority?" and "Are there objectives that need to be added?" Ms. Singer suggested a third question: "Are there good studies ready to be funded in areas of the plan that are currently underfunded?"
Ms. Redwood suggested examining gaps in research priorities and needed changes to funding level. She advocated increased cross-talk between the scientific community, clinicians, and stakeholders. Dr. Insel suggested that the workshop represent a forum to bring together these groups, rather than building the sessions around scientific presentations. Ms. Singer said that the workshop should address implementing and updating the plan separately. She recommended committing to a two-day workshop. Mr. Grossman said that the ASA uses framing questions for conferences, such as "What have we done?" "What have we heard?" and "What needs to happen now?"
Dr. Insel recommended convening diverse groups of people to present from three perspectives. Participants would be chosen based on their expertise and a format would be provided to get the most focused information. Ideally, participants would prepare before the meeting and then report out.
Dr. Hann suggested asking three presenters to review data from their question, in addition to funding information, and public input from the RFI. The presenters would then give their perspectives on gaps in the plan, opportunities, and priorities. The presenters would have considerable preparations to make before the workshops, so members of the subcommittee would be asked to partner with the groups to assist them.
Ms. Redwood suggested having at-large participants that included adults with ASD. Mr. Grossman asked how the public would be engaged and Ms. Redwood recommended having the public member of the panel present information gained from the RFI.
Dr. Hann recommended having a group of three panelists – one clinician, one researcher, and one member of the public (stakeholder) – who would each present his perspective on his assigned question for twenty minutes. Afterward, an open discussion period would provide opportunity for comment from other presenters and the public. The workshop could be webcast to allow access for people that could not attend in person. At the end of the second day, subcommittee members, acting as the convening body, could provide recommendations on synthesis.
Ms. Redwood asked if two RFIs were needed but was told that due to time constraints, this was not feasible. She suggested issuing an RFI soliciting input on opportunities, gaps, and priorities for each question in the strategic plan.
Dr. Hann said that an RFI should be open for at least 30 days so would have to be issued mid-July at the latest. The RFI would close at the end of August to allow sufficient time for feedback.
Ms. Singer asked if RFIs issued in the summer received fewer comments. Dr. Hann said that the amount of response varied by the subject matter. A recent RFI on stem cell use received more than 45,000 comments during a 30-day period.
The OARC agreed to draft language for the RFI for approval so that the process could move forward rapidly. Dr. Hann requested that subcommittee members provide nominations for workshop presenters and volunteer as a buddy for specific questions. Dr. Rice recommended that Questions 3 and 4 ("What caused this to happen and can it be prevented?" and "Which treatments and interventions may help?") may need two buddies. Ms. Singer recommended requesting nominations for presenters from the full IACC via email. Ms. Blackwell asked that the list of participants in the 2008 planning workgroups5 be sent to the subcommittee. Dr. Insel said that he foresaw having the most problem recruiting clinicians for the workshop.
Dr. Hann told the subcommittee she would send them a note reminding them to make nominations and buddy assignments and would provide rosters of the previous participants.
Future Meetings and Adjournment
Dr. Insel asked the group when they would like to meet again, reminding them that revisions should be completed by the subcommittee in November. The next full IACC meeting convenes on July 15, 2009, followed by an October 23, 2009 meeting. The subcommittee agreed to be in contact during the first week of September before the workshops. Ms. Redwood asked if another meeting would be added in December to finalize the strategic plan revisions. Ms. Singer suggested meeting at the conclusion of the workshops. Dr. Hann advised against this, recommending that the subcommittee have a few days to digest the material. She suggested convening a conference call among the subcommittee members a few days after the workshops.
Ms. Redwood asked that the OARC create a document summarizing the output from the workshop to be reviewed by the subcommittee. The subcommittee agreed to meet in the second week of October to review this document, reflect on what was heard at the meeting, and prepare a presentation to the full IACC. The meeting was then adjourned.
These minutes of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the Subcommittee on October 15, 2009.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
* This analysis does not include information from the Simons Foundation, which is expected to be included in a later analysis.