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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5 and 6 Planning Subgroup on Comparative Effectiveness Research and Patient-Centered Outcomes Research (CER-POR) Conference Call on October 4, 2012

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 Thursday, October 4, 2012, from 11:00 a.m. to 12:30 p.m.

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

Participants:

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

Roll Call and Discussion

Ms. Gemma Weiblinger welcomed participants to the call to discuss the update of Questions 5 and 6 in the IACC Strategic Plan. Question 5 asked "where can I turn for services) and Question 6 asked (what does the future hold, particularly for adults). She said that this Group would focus on comparative effectiveness research (CER) and patient-centered outcomes research (PCOR) with respect these questions. Dr. Elizabeth Baden gave a brief overview of the 2012 Strategic Plan update process. Dr. Denise Dougherty said that in updating Questions 5 and 6, the Group should focus on what had been learned in the past 18 months that is critically important and what was needed to develop a research agenda. The SRP Subcommittee opted to divide into five topic groups to update Questions 5 and 6. These included: access and coverage; quality of care; education and employment; family support; and CER/PCOR.

Ms. Jan Crandy asked if they should be looking at community provider outcomes versus clinical outcomes versus Medicaid outcomes, because children receive services through all of these entities. Dr. Dougherty said that Dr. David Mandell's argument would be that they would be looking at the outcome in relationship to highly variably defined interventions. For example, if the group were to look at comparing different state Medicaid program outcomes related to the interventions that they support, there would be no firm definition of the interventions, and comparing outcomes across the states or different community settings would be difficult. She said that there is no clear answer with CER/PCOR, because it is still being defined.

Dr. Tristram Smith said that Question 4 largely involves university-based efficacy trials around specific interventions, but that for this group the focus might be more on community-based effectiveness trials, pragmatic trials, or observational studies, perhaps including ongoing services and not just interventions with a discrete starting and stopping time. Dr. Dougherty said that based on what Dr. Mandell had indicated, even this might be difficult. She said that she was thinking that questions for CER/PCOR might be focused more around the organization of services and their delivery—for example, comparing different approaches to the transition of people with autism from adolescence to adulthood and the outcomes of different approaches.

Dr. Lisa Simpson, in commenting on the difference between the clinical and service delivery questions, noted that there is crossover, and that all kinds of pragmatic trials and designs can be implemented to answer the question of what works for which patients under what conditions. However, there are more services questions around how to implement an effective intervention for a broad population in the delivery system, or for how to deploy the workforce to identify, manage, and refer these children effectively.

Particularly in rural areas, she said, questions might be asked around access to specialty care and the role of telehealth platforms. Ms. Crandy said that another option would be to determine if there are any studies that look at what happens to children while they are on waiting lists for receiving services.

Dr. Simpson said that yet another option would be to look at different models of how to integrate the patient-centered medical home with adequate screening, developmental, and referral services and a system of care. One issue is determining to what extent questions of payment reform and payment design are within the scope of this effort. She said that this would be an opportunity, if possible, to look at the extent to which services are covered, the level at which they are reimbursed to the provider, and how much copayment and financial risk families experience, all of which drive service utilization.

Dr. Dougherty said that addressing such questions may or may not be addressed by the access and coverage group, but they are questions that are in the forefront of the minds of people whose family members have autism. Ms. Crandy commented that the access and coverage group definitely would address such issues, because there are so many barriers to getting services. She said they will be comparing different payment approaches and she commented on how insurance billing in her state is increasing the cost of treatment. It was noted that it would be helpful to look at comparing community-based services and Medicaid outcomes, because most of the Medicaid programs are not even covering applied behavior analysis (ABA), which has the most research behind it.

Dr. Smith said that there is little research on what happens to Medicaid children. He said that there are some interesting questions regarding, for example, what is covered through Medicaid or public schools versus what is covered by insurance and that these might be topics for which this group would want to summarize the current state of the art and science and provide some recommendations. Ms. Crandy said that the group should focus on some of the comparative questions because there is little in the way of research at this time.

Dr. Dougherty said that it probably does not matter at this point whether there is overlap between this group and the access and coverage group because all of the material will be placed into one addendum, including research agenda items such as looking at whether different states' approaches to essential health benefits make a difference. Ms. Crandy said a huge problem in her state is caps on autism insurance and limits on the number of visits. She said that comparative studies are needed on the intensity of hours/visits and different models of treatment.

Dr. Dougherty said that as a next step everyone in the group should address for this topic what is known based on research over the last 18 months and what they still need to know. She said that she believed that this group in particular would be focusing heavily on what they need to know using CER and PCOR and that the plan was to have each group member develop his/her own questions in this regard and share and discuss them on the October 9 call.

Then the co-chairs will polish the draft and perhaps ask additional questions and then deliver it to OARC for distribution before the workshop. During the workshop, they would be able to address the topic in more depth and have a plenary session during which the different groups would work together to develop a set of responses.

Ms. Weiblinger said that if they can get the finished products from the groups by October 22, it would give them enough time to combine them and send a document to all of the Subcommittee members for review before the workshop. Dr. Dougherty discussed different possible times for holding another call, including October 12 and 15.

Dr. Baden said that all of the biographies for the experts will be placed in the workshop packets. Ms. Crandy asked whether research can be identified that is outside the United States. Dr. Baden said that if good studies have been conducted in other countries, those results should be included. She also reminded group members that they are looking for seminal studies with important results that advance the field or raise more questions.

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Adjournment

The meeting was adjourned at 12:30 p.m.

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Certification

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

/Susan Daniels/ November 16, 2012
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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