Family Engagement in the Autism Treatment and Learning Health Networks Timothy Eidson, MD,a Amy Hess, BS,b,c Thomas Hess, MA,d Amy Kelly, MBA, MNMe,f

abstract Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/ hyperactivity disorder, and irritability in autism during the networks’ upcoming funding cycle. The expansion of the networks’ Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self- advocacy involvement in the networks is emerging, with plans for each site to have self- advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.

aDepartment of Pediatrics, Monroe Carell Jr Children’s Hospital at Vanderbilt, Nashville, Tennessee; bDivision of Developmental and Behavioral Pediatrics, Nationwide Children’s Hospital, Columbus, Ohio; cCenter for Autism Services and Transition, The Ohio State University, Columbus, Ohio; dDivision of Policy and Strategic Direction, Ohio Department of Developmental Disabilities, Columbus, Ohio; eChildren’s Hospital of Philadelphia, Philadelphia, Pennsylvania; and fDevereux Advanced Behavioral Health, Villanova, Pennsylvania

Dr Eidson, Ms Hess, Mr Hess, and Ms Kelly are parents who are actively involved in the family advisory committee; and all authors conceptualized the manuscript topic and themes, drafted the initial manuscript, reviewed and revised the manuscript, drafted the contents in Table 1, and approved the final manuscript as submitted. Current and past family advisory committee co-chairs on behalf of the network family advisory committee. DOI: https://doi.org/10.1542/peds.2019-1895F Accepted for publication Jan 27, 2020 Address correspondence to Tim Eidson, Rivergate Pediatrics, 807 Meadowlark Ln, Goodlettsville, TN 37072. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

Downloaded from www.aappublications.org/news by guest on September 29, 2021 SUPPLEMENT ARTICLE PEDIATRICS Volume 145, number s1, April 2020:e20191895F THE AUTISM SPEAKS AUTISM numerous and diverse families care, incorporating shared decision- TREATMENT NETWORK AND AUTISM receiving care from a large making among all parties involved. INTERVENTION RESEARCH NETWORK ON international network. It was also PHYSICAL HEALTH not enough to truly insert family CURRENT FAC STRUCTURE AND Autism, or autism spectrum disorder engagement and priorities into CONTRIBUTIONS (ASD), refers to a broad range of network initiatives. Recognizing this, conditions characterized by in 2011 the ATN and AIR-P revised its The members of this FAC contribute challenges with social skills, plan for collaboration with families to to all levels of network leadership repetitive behaviors, speech, and include a network-wide FAC with and provide invaluable insights when nonverbal communication. According 2 co-chairs and 2 FAC representatives planning and conducting research to the Centers for Disease Control from each of the clinical sites across and clinical care endeavors. Over and Prevention, autism affects an the network. time, the FAC has grown from 1 estimated 1 in 59 children in the volunteer to a network of leaders and 4 United States today.1 Autism can A decade ago, Silverman and Brosco partners joining together in typically be reliably diagnosed by age described the often-precarious numerous areas, including developing 2, but associated developmental partnership of patient advocacy and implementing network activities delays can appear even earlier.2 The groups with autism researchers. In at the network and site levels, Autism Speaks Autism Treatment the ATN and AIR-P, there were some providing a family perspective and Network (ATN) and Autism growing pains, which were met advice on developing clinical and Intervention Research Network on with some misunderstanding of the research priorities, and facilitating Physical Health (AIR-P) have more potential valuable role of families the inclusion of families into the than a decade of work in the care, and caregivers. Through open network’s activities and plans. Family treatment, and research of ASDs (see communication, collaboration, involvement has helped ensure that Coury et al3 in this issue). Families, partnership, and transparency among ATN and AIR-P research is important caregivers, and self-advocates have the network leadership, family and meaningful to families and that a strong and equal voice in all aspects involvement continued to grow, and clinical and related services are of ATN and AIR-P work to ensure the family perspective began to take family centered and accessible. Fiks 5 that network-related activities and a more prominent role in the ATN and et al detail their own experience goals are aligned with those in the AIR-P. The network Medical Director, in improving parent and patient autism community. They are also Dr Daniel Coury, states the following: involvement in their practice-based fi coproducers on all network projects, Over the years, network leadership has research networks. We af rm that rather than seen as consultants or come to appreciate the family such authentic partnership between contributors, and are fundamental to perspective more and more when families, researchers, and physicians the essence of the network. Thus, it is identifying new interventions to study. across all levels of our network is This is perhaps best exemplified with the important to note that this article is critical to reach our goals. approach to the AIR-P renewal process authored by 4 past and present in 2015 when the principal targets for network family advisory committee the learning network initiative of the FAC STRUCTURE (FAC) co-chairs contributing their AIR-P were selected by the FAC. insights and learnings through their As previously mentioned, each of the past decade of network contributions. Over time, the network embraced the clinical sites affiliated with the important role of parents and network (currently 12) has a local caregivers in research, quality FAC (described briefly below). Two HISTORY OF FAMILY INVOLVEMENT IN improvement, dissemination, members from each of these local THE NETWORK outreach, and leadership. This led to FACs form the national ATN and AIR- Historically, the ATN formed as the mission of the FAC: sharing the P FAC members. The network FAC a clinical network in 2005 and had its family experience of the daily collaborates on strategic planning to first expansion in 2008. In 2009, the challenges and concerns of living promote the mission and activities of ATN and AIR-P began working with with autism in a productive and the network. In 2018, a family its first family representative, who informative way to advise and advisory charter was created to guide provided 1 family’s opinion on assist clinicians, researchers, and the work of the FAC and to promote network projects. Over the course professionals in the field with family participation across network of the following 2 years, it was research, treatment, and care activities. The charter is instrumental recognized that, although valuable, priorities while shifting the in outlining national and local 1 family’s perspective was not traditional clinic-centered care model objectives and is a useful tool for sufficient to serve and represent the to a focus of family-centered clinical onboarding of new family members.

Downloaded from www.aappublications.org/news by guest on September 29, 2021 PEDIATRICS Volume 145, number s1, April 2020 31 Entry into network activities and care, guideline development, partners serve on the ALHN committees can be overwhelming, and disparity reduction, and leadership team, and family partners the charter organizes opportunities for dissemination. For example, parents played a key role in creating both the onboarding participation. Additionally, on the diagnostic algorithms original and revised key driver the charter serves as a guide to committee worked with network diagram for this project. The network ensure family advisors understand clinicians to inform best practices is dedicated to developing the next opportunities and expectations for surrounding accessible and efficient generation of family leaders to involvement. For example, national diagnosis. One parent serves as transform health care delivery by FAC members are asked to attend a research advisor on the dental care supporting the education and training 80% of calls and meetings and to research project and provides his of 2 FAC members in improvement choose targeted committee expertise as a dentist and a father to science. FAC members enrolled in the involvement per their interest. The inform research protocols and best year-long course work on projects charter also outlines a compensation practices. Several parents have been directly tied to the overall aims and plan for the effort of FAC members involved in the network’s Extension goals of the network. by activity and effort. For example, for Community Healthcare Outcomes The opportunity to participate as an FAC members are compensated for (ECHO) projects, and each of the 10 equal partner in the design and achieving 80% attendance on network network sites has a parent serving as implementation of the Autism Learning calls, for attendance at in-person a faculty member on the ECHO hub Health Network provides not only a vast opportunity to learn more about autism meetings, and for other efforts that team. As the network spreads the use for my son and my family, but also offers further demonstrates the network of the ECHO model, family members a vehicle for us to give back to and lead commitment and acknowledgment are included as faculty. The network families as they travel on their personal that family time is valuable and must generates and disseminates care tool journeys with autism. be compensated. The FAC meets kits. More than 20 members of the Amy Hess, parent and FAC co-chair monthly via a video-call platform. FAC have been involved in the review Times of calls vary to accommodate of all tool kits disseminated by the the schedules of different FAC network. Descriptions of network LOCAL FAC members. activities and workgroups that FAC At a local level, the local FAC members are involved in can be representatives at each site provide The 2 FAC co-chairs are selected to found in Table 1. feedback and input to their site serve a 2-year term. They are part of leadership regarding the current state the network steering committee and One of the most recent network of care, existing issues, concerns set strategic goals. Co-chairs represent endeavors has been the creation and facing families in their community, the entire FAC and work hard to expansion of the Autism Learning and perspectives on new clinical ensure that they are providing input Health Network (ALHN). The ALHN is initiatives. They encourage and representative of the parent partners 1 of many emerging active learning facilitate the involvement of other whom they serve. The co-chairs work networks. This project is aimed at parents and caregivers in their with network leadership to guide the designing and implementing community to participate with their direction of projects nationally and a sustainable network of patients, local site’s activities and initiatives locally, help set agendas and goals for families, clinicians, and researchers while serving as stewards in in-person meetings, and ensure all who will work together to achieve community-based autism awareness initiatives across the network are optimal health and quality of life for events such as walks, workshops, and infused with a family voice. individuals with ASD and their trainings. Disseminating information families. Families have been heavily and awareness about the ATN is also involved in the planning and a core responsibility of family FAC AND FAMILY ROLES implementation of this project and partners at the local level. Families also play a key role in were highly influential and advising and co-producing network instrumental in defining the 3 priority activities at a national level. FAC areas that the ALHN will focus on FUTURE GOALS members act as reviewers of research improving: irritability, anxiety, and Autism is a spectrum disorder, and articles and research grants, advisors attention-deficit/hyperactivity a spectrum of patient and family or co-producers for research projects, disorder. Since its inception, families voices is required to fully capture and scientific review committee have played a critical role in the unique health and life paths of members. FAC members are active on determining both the goals of the those diagnosed. Moving forward, most network-wide committees, ALHN and the measures used to there are 4 future goals that the including those devoted to clinical define success. Several family FAC would like to accomplish: access,

Downloaded from www.aappublications.org/news by guest on September 29, 2021 32 EIDSON et al TABLE 1 Overview of Network Activities and Family Impact Activity Goal FAC Involvement and Impact Tool kit translation and To focus on enhancing the current ATN tool kits and making them An FAC member was involved in shortening these tool kits for dissemination more usable for our patients and their families, including easier digestion and improving the reading level so that they workgroup underserved populations (eg, rural areas, racial and ethnic are more accessible to diverse audiences. An FAC parent was minorities, and those with lower socioeconomic status) involved in creating and editing 1-pagers that represented the tool kit information in a more practical format. Research in lay language To describe key AS and ATN research findings in plain language FAC partners helped write lay summaries of network research workgroup and group them by topic to facilitate dissemination to outside publications and ensured that each topic summary was at an users and stakeholders, including parents, community appropriate reading level for more accessible consumption. partners, and apprentice autism centers ECHO Autism ECHO has incredible outreach in which family representatives FAC members are involved in all aspects of the ECHO research are an integral part of training and educating new community and care initiatives by using a telementoring model and case professionals in autism care and treatment. discussions with community providers. This is a powerful opportunity for first-line physicians to hear directly from families about how to improve care and health outcomes for families with a child with autism. Behavior science To provide consultation to the ATN in conducting research, Family partners are engaged in all meetings and discussions committee education, clinical care, and quality improvement initiatives focused on improving the behavioral health of children with that include issues related to both the assessment of children ASD. Family advisory members provide input regarding with ASD and behavioral health issues. We are committed to improvements to diagnostic and assessment clinical practices supporting evidence-based practices in both the diagnosis as well. and treatment of ASD and related disorders. Diagnostic algorithms To develop a clinical algorithm or multiple compatible An FAC member was involved in meetings and discussion to workgroup algorithms involving a minimum assessment for the diagnosis streamline assessments captured at network sites. This was of ASD in children 0–3 y and .4–18 y also designed to reduce the wait time to diagnosis for patients. Review of systems To streamline the standard-of-care comorbid conditions checklist An FAC member’s input was used to identify what information is that is collected at every medical appointment important to gather from families at each clinic visit. This standardizes a way to collect information regarding concerns that a family member may have about their child’s health. Sleep committee To improve sleep hygiene for children with autism and their An FAC member is actively participating in calls to plan and families, including bedtime routines, night wakings, and create a literature review regarding night wakings in children parent sleep habits with autism. The family member is also critical. Signature studies To prepare, submit, and administer both internal and external FAC members are active participants in grant development. They workgroup research grants with the aim to decrease autism participate in the biweekly workgroup teleconference. comorbidities Steering committee for To steer the network regarding clinical standards and research FAC co-chairs are full steering committee members and are ATN, AIR-P, and ALHN objectives. Members will be actively engaged in the key active in all steering committee responsibilities, calls, and aspects and deliverables of the network and serve as a liaison meetings. Co-chairs also represent the FAC voices as a whole to their respective sites. and ensure that parent perspectives are represented. AS, Autism Speaks. onboarding, self-advocacy during transition, and in other advisors, whose children are now representation, and awareness. important areas of need may be growing into adolescence and a critical way to provide outreach to adulthood, continue to support underserved and isolated network activities and are Access populations. instrumental in the onboarding and Reaching families in rural, remote, training of new parents to the group. and underserved areas who may not The network is also working to Onboarding have access to autism resources, engage families from diverse ethnic services, and research is a priority for Onboarding FAC members with backgrounds and across languages the FAC as well as the ATN, AIR-P, children of all ages across the autism spoken because it is critical to include and ALHN. One way this is evolving is spectrum is essential to providing these voices if research and care for through ECHO Autism. This is an a balanced, well-rounded family and children with autism is going to innovative way to bring technology caregiver perspective. More families improve for all individuals. and expertise together by using an of younger children with ASD are interdisciplinary hub team through actively being recruited to ensure that Web-based learning about all aspects the expanse of parent perspectives is Self-Advocacy Representation of autism. Expanding ECHO as captured across age groups. Long- The need for involvement of people a resource to families after diagnosis, standing, committed, seasoned family living with autism to capture the

Downloaded from www.aappublications.org/news by guest on September 29, 2021 PEDIATRICS Volume 145, number s1, April 2020 33 individual’s perspective and research into lay-friendly language offers a comprehensive view of corresponding needs for a full and that is digestible for a wider audience the issues and treatment needs across productive life is critical to moving and have also worked to translate the life span. The value of these care and research forward. Through these research summaries into members to the network is mentoring and recruitment of self- Spanish. By working with researchers immeasurable. advocates to the FAC, the ATN, AIR-P, to explain the real-world application Family partners play a key role in the fi and ALHN plan to improve research, of their study ndings, family development of novel research, clinical treatments, and outcomes in a more advisors help disseminate vital care, and dissemination efforts complete and creative way. The FAC information that can be used to generated by the ATN and AIR-P. They fi proudly onboarded its rst member improve the health and well-being do this in parallel with their many who is an autism self-advocate in of other families with children on family, parenting, work, and community early 2018. This self-advocate, in the spectrum. commitments. By participating conjunction with past FAC co-chairs, throughout all levels of the network is working to develop processes CONCLUSIONS and working closely with the network for recruiting and supporting the steering committee, the FAC ensures Family advisors dedicate hundreds inclusion of individuals with autism that the parent and family perspective of hours annually to coproduce and at every network site. The FAC is also is infused in all activities and output disseminate information and best expanding to be inclusive of siblings that the network generates. in the advisory capacity. practices to families working to manage the changing dynamics Awareness of raising a child with autism and Family advisors will continue to play co-occurring conditions. These ABBREVIATIONS a large role in the dissemination of members dedicate their time while AIR-P: Autism Intervention information and resources designed holding full-time jobs, raising Research Network on to improve the lives of children and children, and balancing the role of Physical Health young adults with ASD. By helping to autism advocate with professionalism ALHN: Autism Learning Health design, develop, and translate and steadfast commitment to the Network materials used to spread awareness network. They are the parents and ASD: autism spectrum disorder and information to the autism caregivers of young children to young ATN: Autism Treatment Network community, family partners help adults, the siblings, and the self- ECHO: Extension for Community further the dissemination goals of the advocates from multicultural, diverse Healthcare Outcomes network. Family advisors have been backgrounds, and they represent FAC: family advisory committee integral in the translation of network a unique cross-section in autism that

FUNDING: Supported by the Health Resources and Services Administration of the US Department of Health and Human Services under cooperative agreement UA3 MC11054 (Autism Intervention Research Network on Physical Health). The information or content and conclusions are those of the authors and should notbe construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, the US Department of Health and Human Services, or the US Government. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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