IACC Subcommittee for Basic and Translational Research Planning Group for Question 1 (Screening and Diagnosis) Conference Call - September 4, 2013

Announcement
Agenda
Minutes
Materials
Transcript

Topic	Topic Description
Date:	Wednesday, September 4, 2013
Time:	2:30 p.m. to 4:00 p.m. Eastern
Agenda:	The Planning Group will discuss possible approaches for evaluating progress made toward accomplishing the objectives in the IACC Strategic Plan Question 1: "When should I be concerned?"
Place:	No in-person meeting; conference call only
Conference Call:	Dial: (888) 282-0566 Access code: 1151146
Materials:	Meeting materials
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6182A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Please Note:	The conference call will be open to the public in listen-only mode. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call, please e-mail HelpDeskIACC@gmail.com or call the IACC Technical Support Help Line at 415-652-8023. Accommodations Statement: The meeting will be open to the public via conference call. Individuals who participate by using this electronic service and who need special assistance such as captioning or other reasonable accommodations should submit a request to the Contact Person listed on this notice at least 3 days prior to the meeting. Schedule subject to change.

No in-person meeting; conference call only. The materials for the meeting can be found here.

Time	Event
2:30 p.m.	Roll Call and Opening Remarks Coleen Boyle, Ph.D., M.S., Hyg. Director, National Center on Birth Defects and Developmental Disabilities, CDC Chair, Question 1 Planning Group Susan Daniels, Ph.D. Acting Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) Executive Secretary, IACC
2:45	Discussion of IACC Portfolio Analysis and Draft Strategic Plan Update Planning Documents Susan Daniels, Ph.D. Acting Director, Office of Autism Research Coordination, NIMH Executive Secretary, IACC
3:15	Planning Group Discussion of Strategic Plan Update Process
3:45	Wrap-up and Next Steps
4:00	Adjournment

Welcome, Roll Call, and Opening Remarks
Discussion of IACC Portfolio Analysis and Draft Strategic Plan Update Planning Documents
Planning Group Discussion of Strategic Plan Update Process
Wrap-up and Next Steps

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan Question 1 Planning Group, convened a conference call on Wednesday, September 4, 2013, from 2:30 p.m. to 4:00 p.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., Question 1 Planning Group Chair, Centers for Disease Control and Prevention (CDC); Thomas Insel, M.D. M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., IACC Executive Secretary, NIMH; Anshu Batra, M.D., Our Special Kids; Matthew Carey, Ph.D., Left Brain Right Brain; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Alison Tepper-Singer, M.B.A., Autism Science Foundation

Welcome, Roll Call, and Opening Remarks

Dr. Susan Daniels welcomed participants to the call, and called roll. The Planning Group approved the minutes of the March 26, 2013 meeting. Dr. Daniels said that the purpose of the call was to develop a methodology for updating the IACC Strategic Plan. She noted that all of the materials for this call were publicly available on the IACC website.

Discussion of IACC Portfolio Analysis and Draft Strategic Plan Update Planning Documents

Dr. Daniels described several of the documents prepared by the Office of Autism Research Coordination (OARC) for review and use by the Planning Group. She started with a document labeled "Draft: Question 1 (Diagnosis) Compiled Objective Chart 2008 to 2012." (PDF – 146 KB) She noted several points that need to be taken into consideration when viewing the 5-year "cumulative funding" for each of the IACC Strategic Plan Question 1 objectives. First, the Strategic Plan objectives have changed over time. In addition, some agencies provide all the funding for a given project in the first year and no funding is included in subsequent years, whereas other agencies provide annual increments of funding for projects. These different approaches can result in what looks like "unevenness" across years. In addition, Dr. Daniels noted that when considering the IACC recommended budget levels for each to keep in mind that these budget levels were provided in the Strategic Plan as an estimate of how much it might cost to conduct the studies recommended, but they were not provided as a directive to agencies on how much must be spent. In some cases, the objectives may have been achieved with less than the recommended budget.

The materials for this call also included documents that summarized data from each of the 2008-2012 Portfolio Analyses. Dr. Daniels said that information for each year included a "stoplight chart" or "dashboard" table of projects, a listing of Question 1 projects for that year, and pie charts. Essentially the materials detailed autism-related funding. Dr. Daniels noted that the "traffic light" approach was used to provide a general indication of how well the objectives aligned with recommended budgets. Using this approach, items with red lights have no funded projects. Those with yellow lights have active projects, but with funding that totals less than the recommended amount. The objectives with green lights have projects equaling or greater than the recommended funding amount. In addition, Dr. Daniels noted that OARC used annualized budget estimates to create the "traffic light" indicators, meaning that red, yellow and green were determined by comparing the annual spend against the recommended budget divided by the number of years recommended for achieving the objective. This was necessary because in most cases, the recommended budget was created to cover multiple years, but the IACC was interested in understanding progress on an annual basis.

Ms. Lyn Redwood asked if the Planning Group could get an indication of whether projects are on track. In other words, are the projects over or under budget and why. Dr. Daniels pointed out that these funding numbers were the IACC's estimates of how much it would cost to accomplish each of the tasks, but the numbers were not ceilings. Ms. Alison Singer reminded the group that the Committee intended for these recommended budgets to set a minimum level of funding thought to be needed for achieving the objective. Dr. Daniels said that if the Planning Group agreed that an objective had been well addressed through a number of projects and studies, the group could recommend that no further work is needed in that objective area.

Dr. Coleen Boyle suggested that the Planning Group use the information provided by OARC to identify and highlight areas/objectives that had been well-funded or under-funded in the past 5 years, in order to reprioritize the Plan. Dr. Anshu Batra suggested that the members identify the tangible results of objectives and funding. Dr. Daniels said that the purpose of the current call was to consider the funding and projects for Question 1, but that consideration of outcomes would be part of future calls during the IACC's Strategic Plan update process.

Planning Group Discussion of Strategic Plan Update Process

Ms. Singer reminded the Group that their purpose was to develop a methodology that the other planning groups could use to review and evaluate all of the data provided and to identify the expected deliverable for each question. Dr. Daniels said that one of the documents included in the call materials was a draft guidance document (PDF – 65 KB) that could be used by the planning groups to help them with the Strategic Plan update process. Dr. Daniels said that tentatively, two conference calls would be scheduled for each Planning Group prior to the full Committee Workshop on October 29, 2013. The expectation was that at the end of the Workshop, each Planning Group would have a draft chapter to finalize by December. Ms. Redwood and other Group members asked if it would be possible to have the project numbers provided in the "Draft: Question 1 (Diagnosis) Compiled Objective Chart 2008 to 2012"hyperlink to the list of individual projects for that objective. Dr. Daniels indicated that would be possible for the 2008-2010 projects that are already in the IACC/OARC Portfolio analysis Web Tool, but that static lists would be provided for the most recent data.

Dr. Daniels said that it appeared that the IACC wanted to do a significant update of the Strategic Plan, based on 5 years of data. She reviewed the draft guidance document, noting the questions that the IACC had indicated interest in evaluating for each Strategic Plan question. These included: what is known; what research was new in this area and what has been learned (in the last year); what gaps and opportunities have emerged; what barriers were preventing progress; and what was needed to move forward (objectives). Ms. Redwood suggested the Group consider including broader questions for the autism community. She noted that the Committee had previously developed aspirational goals for each question of the Strategic Plan. Each planning group should address the progress that has been made toward each aspirational goal. Dr. Batra agreed, adding that this information would help them to better target objectives.

Dr. Thomas Insel said that it was his understanding that the IACC was planning to focus on accountability with this update of the Strategic Plan. Dr. Insel said that they could easily track the amounts of money spent on questions and objectives but it was equally important to identify the tangible results. The Groups should provide clear assessments of achievements within each of the Strategic Plan questions. This would provide an understanding of the information/research that was still needed. Dr. Insel suggested that they keep the existing Strategic Plan format, and add the accountability element. The Group agreed generally with this approach.

Ms. Singer added that it would be useful for the Committee to prioritize the remaining work and new gaps. Dr. Daniels asked if the IACC would also be revising or reprioritizing the existing objectives. Ms. Singer suggested that these revisions could be done in a qualitative manner with the help of external experts. The Committee would not rank individual objectives but would provide their suggestions about where resources should be channeled going forward. Ms. Singer also expressed concern that the Planning Groups might not know how best to spend their time because so much data is available. She suggested that the Question 1 Planning Group develop some guidance for the other Groups for each conference call and the deliverable due by the October 29th Workshop.

Dr. Daniels reminded the Group that OARC would be publishing the 2011-2012Portfolio Analysis, which will detail the investment in autism-related research in both the public and private sectors for those years, but that the relevant data gathered for that analysis were provided for the group in their packets. Dr. Daniels suggested that once the data have been reviewed, the Planning Groups should focus on answering a set of questions with the help of invited experts. These include: what has been accomplished, what was new, what should happen next, and what the barriers to progress are.

Ms. Singer stressed that the Planning Groups should take a broad view of these questions and not get bogged down in too many details. This Group should emphasize that none of the planning groups should review and rewrite objectives. Ms. Redwood said that she believed that the Groups should go through each objective within each Strategic Plan question, in order to determine what has been accomplished and what is needed. She suggested that this approach would add another layer of accountability. Much of this information would be provided to the Planning Groups by OARC, she said. Ms. Singer clarified that the Groups should review the progress made on the objectives but should not revise the actual objectives.

Ms. Redwood also asked about including the members of the autism community and other stakeholders in the process of updating the Strategic Plan – perhaps inviting key individuals or key organizations to attend the October 29th Workshop. Dr. Daniels said that the Committee had decided to include stakeholders in the Planning Groups, along with subject matter experts. She added that each Planning Group could have up to four outside members for each Planning Group. These could be stakeholders or experts, who would attend the Workshop to discuss the draft chapters. Ms. Redwood asked if the stakeholders and experts could be part of the "offline" process of developing drafts for each question – through conference calls – and to limit the October 29th Workshop to the IACC members. Dr. Daniels said that this would be possible, but that longer calls might be required with more participants. Ms. Singer said that the Workshop offered an opportunity to get feedback across fields. She asked that experts and stakeholders be invited to attend the Workshop in person. Dr. Daniels said that this was possible. She added that there would be an opportunity for public comment at the Workshop as well.

Dr. Daniels noted that it was important to assemble the planning groups and experts or other stakeholders as soon as possible in order to schedule two conference calls per Group. Ms. Redwood asked what the objective of calls would be. She expressed frustration with last year's process, in which outside experts were tasked with drafting text. It had been difficult to accomplish assigned tasks in a timely manner. She suggested using an interview process with a set of questions for experts to answer. The Planning Group members could use this information to draft text. Dr. Daniels said that the collection of information needed to be conducted during the phone calls, as a collecting and reviewing of written documents would be time consuming both for the experts/stakeholders and for OARC and the committee. She suggested developing a focused set of questions, perhaps four or five, for discussion during phone calls.

Ms. Singer suggested that the Planning Groups use the first conference call to discuss the objectives and then to break them into sections for literature reviews and to plan the writing process. On the second conference call, the members would share and discuss their research materials (collected by the members offline), she said. This discussion would then be used to write the chapter updates. Dr. Daniels said that the calls would be recorded and that OARC would provide brief call summaries. Ms. Singer volunteered to write clear guidelines for all of the Planning Groups with regard to accomplishments before, during, and after each call. Dr. Daniels said that OARC would provide a draft guidance document and a template, which this Group would review and revise.

Wrap-up and Next Steps

Dr. Daniels said that OARC would finalize the planning group membership soon and would help to develop a list of possible experts/community members. She would also send guidance on the time commitment required for the Planning Groups. She reminded the Group members that data for years 2008-2010 was also available via the Portfolio Analysis Web Tool. Ms. Singer asked if tentative dates were available for IACC meetings through the end of the year. Dr. Daniels said that she would send these out to the IACC.