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IACC Subcommittee for Services Research and Policy Planning Group for Question 5 and Question 6 in the areas of Comparative Effectiveness Research/Patient Centered Outcomes Research Conference Call

meeting announcement Announcement
Topic Topic Description
Date: Friday, October 12, 2012
Time: 1:00 p.m. to 2:00 p.m. Eastern
Agenda: The planning group for the Comparative Effectiveness Research/Patient Centered Outcomes Research topic area will discuss updates for the IACC Strategic Plan.
Place: No in-person meeting; conference call only
Conference Call: Dial: (888) 628-9524
Access code: 1383023
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
Please Note: For call-in issues, dial *0 so that an operator may assist you.

Accommodations Statement:
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.

Schedule subject to change.

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meeting agenda Agenda

No in-person meeting; conference call only.

Time Event
1:00 p.m. Roll Call and Opening Remarks

Denise Dougherty
Agency for Healthcare Research and Quality (AHRQ)
Chair, SRP Strategic Plan Questions 5 and 6 on CERPCOR

Gemma Weiblinger – Designated Federal Official
National Institute of Mental Health (NIMH)

1:15 p.m. Discussion
2:00 p.m. Adjournment

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meeting minutes Minutes

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5 and 6 Planning Group on subgroup Comparative Effectiveness Research and Patient-centered Outcomes Research convened a conference call on Friday, October 12, 2012.

In accordance with Public Law 92-463, the meeting was open to the public. Denise Dougherty, Ph.D., Co-Chair presided.


Denise Dougherty, Ph.D., Co-Chair, Agency for Healthcare Research and Quality (AHRQ); Gemma WeiblingerDesignated Federal Official, National Institute of Mental Health (NIMH); Idil Abdull, Somali American Autism Foundation; Elizabeth Baden, Ph.D., Office of Autism Research Coordination (OARC), NIMH; Jan M. Crandy, Nevada State Autism Treatment Assistance Program; Lisa Simpson, M.B., B.Ch., M.P.H., FAAP, Academy Health; Tristram H. Smith, Ph.D., University of Rochester; Zachary E. Warren, Ph.D., Vanderbilt University

Welcome and Discussion

Ms. Gemma Weiblinger and Dr. Denise Dougherty welcomed participants to this call. They noted that the purpose of this call was to discuss the update of Questions 5 (Where Can I Turn for Services?) and 6 (What Does the Future Hold, Particularly for Adults?) of the IACC Strategic Plan for autism spectrum disorder (ASD). In particular, this Subgroup was addressing comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). This Subgroup was tasked with identifying recent key research and remaining questions related to CER-PCOR.

This Group's specific focus was on what was known about the effectiveness of different approaches to service provision. They noted that there are a host of questions about children with ASD in terms of access to specialty care and referral services. In addition, there were different workforce deployment models and team-based care/referral strategies that could be looked at from a CER point of view. Members raised the issues of long waiting lists, long waits to obtain interventions, and provider capabilities. It was noted that CER research could help compare different approaches to reducing waiting lists. They should be clear that they were talking about clinically measured outcomes, as well as patient-reported experience of care. Comment was also made that the structure of the Affordable Care Act should be considered, including the fact that the states would determine coverage for autism. Underserved communities would be affected; health disparities would continue to be an important issue to address. It was suggested that Congress should change legislation related to Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) to include autism services and to ensure that the state insurance exchanges address autism services and coverage across the spectrum and the life span.

Group members reviewed a list of critical research questions/issues related to CER-PCOR for inclusion in the draft update.


  • What is the impact of efforts to encourage the early detection of ASD and to have comparative effectiveness information for early detection tools? Such tools should be culturally responsive.
  • Information is needed regarding the impact of efforts to increase access. When implementing on a large scale, what strategies successfully reduce the age of diagnosis, increase participation in early intervention services, and reduce disparities experienced by underserved groups? Do these strategies lead to improved outcomes, and what are the costs?
  • How can we better target the need to focus on more clinically measured and patient-reported outcomes and experiences?
  • What are the consequences of insurance not paying for or providing services to patients? How can we gain a better understanding of direct and indirect costs, such as time lost from work?
  • How do we improve early intervention focused on diagnosis and treatment to address the increased amount of screening and identification of children with ASD and the increasing number of these children in the population?
  • There is a need for the rigorous study of large-scale programmatic initiatives that result in practice change and that are capable of dissemination to traditionally underserved populations. Comparison data are needed to identify the best methods.
  • How do high-intensity early intervention programs work in real world settings? What factors moderate treatment response? What measured effects of early intervention programs are seen, in terms of later child, family, and system outcomes across diverse patient populations? How are these implemented and evaluated in the real world? Issues specific to underserved communities need to be addressed.
  • How much adaptation can be done for local populations and within local community contexts without losing the effect? What are some successful methods for collaborating to adapt models?
  • Is the skill system a useful platform compared to other approaches for measuring the results of interventions?
  • Models are needed of ASD workforce development – especially training and deployment – for the early and accurate identification of children and adults.
  • What is the impact of variations in insurance legislation on access and outcomes, for healthcare delivery system interventions? How does insurance legislation influence systems for delivering services? How do we address the implementation of the health insurance exchanges and essential health benefits?
  • Regarding medical homes – for the comparative effectiveness of training primary care providers to improve care in the medical home – there is an assumption that the impact is across all locations. What is the comparative effectiveness of different decision aids, toolkits, and other family support strategies in the medical home? Which should include patient empowerment and patient-provider partnership? There are also questions around the extent to which the deployment of electronic health records and health information exchanges may help improve the care and the outcomes for people with ASD. Comparative effectiveness of large-scale implementation of the medical home requires the development of core measures.
  • It is difficult to implement models involving preschool environment interventions effectively and accurately in community settings. The comparative effectiveness of preschool environment interventions might is important because CER-PCOR needs to move away from strictly medical topics.
  • What is the comparative effectiveness of approaches for helping families and systems make intervention choices?
  • Regarding vocational education for adolescents and young adults in the transition period, comparative effectiveness information would be helpful for specific vocational treatment approaches.
  • What is the role of patient navigators in helping families use complex systems?
  • The role of registries in quality improvement is a separate question. Research is needed in terms of the various databases that are available to support autism-specific research.
  • Little is known about interventions and outcomes for adolescents and adults..
  • The mortality rates for the seriously mentally ill as adults are higher from physical conditions. Is this a quality of care issue?

Next Steps and Adjournment

Dr. Dougherty thanked the experts and participants for their efforts. She added that the next step would be for her to take all the input from this discussion and incorporate it into the draft. She said that the upcoming full IACC workshop would be an opportunity to build on this work. This conference call was adjourned.


These minutes of the IACC Strategic Plan Questions 5 and 6 Planning Group on subgroup CEPOR were approved by the Committee.

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

/Susan Daniels/ November 6, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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meeting transcript Transcript
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