Families receiving care in the Autism Speaks Autism Treatment Network are playing a crucial role in planning new autism studies
By Brian Winklosky, research program manager for the Autism Speaks Autism Treatment Network (ATN). The ATN’s research is made possible through its federally funded role as the Autism Intervention Research Network on Physical Health (AIR-P). The ATN includes 14 specialty healthcare centers across North America, united in their focus to provide coordinated “whole person” care to children and teens with autism.
Developing a feasible, well designed (and fundable!) research study is challenging. It requires clear thinking, perspective and input from a diverse team of experts in a variety of fields. What has been missing too often is input from families. We need to be better at listening to their voices. What is important to them? Where would they like to see our efforts focused?
Fortunately we needn’t look far to find help. The ATN’s families and community partners are a rich and diverse resource. Many are deeply committed to supporting the ATN/AIR-P’s research mission.
We rely on our family partners in many ways. And we’re continually exploring ways to strengthen these collaborations.
As many of the readers of this blog series know, the ATN is network of hospitals, physicians, researchers and families at centers across the United States and Canada. We are working together to develop the most effective approach to medical care for children and adolescents affected by autism. The network’s goal is to provide comprehensive, high-quality care by teams of healthcare professionals who understand autism and excel at treating its associated medical conditions.
The AIR-P builds on the goals of the ATN by conducting research that advances evidence-based clinical guidelines for diagnosing and treating autism-related conditions. The AIR-P carries out activities at all 14 ATN centers in a variety of areas, including clinical research on evidence-based interventions.
Families guiding researchers
Each network site has a core Family Advisory Council that encourages and supports the ATN mission with critical input on all aspects of a site’s activities. Each local council selects two members to serve on the ATN’s central Family Advisory Council. For years, these family partners have helped us review the many research proposals we receive. They continue to provide the ATN and the researchers we fund with insights and guidance that shape the questions we want studies to address.
“Families have been instrumental in helping us design practical interventions and in identifying outcome measures that are relevant to their children and themselves,” says neurologist Beth Malow, a sleep researcher at our ATN site at Vanderbilt University Medical Center. “We are very fortunate to have the talent, enthusiasm and expertise of the ATN Family Advisory Council as our research partners.”
We understand the great benefit of cultivating collaborations with parents in every aspect of research development, beginning in the early stages with ideas and questions.
That’s why we’re strengthening a research model that encourages open discussion with families on the design of our studies, the selection of participating families and the time and travel commitment we ask from these families. Families also help guide us in providing incentives for participation in our studies. To do this work well requires ongoing dialogue.
As University of Missouri researcher David Beversdorf says: “It is becoming increasingly important to collaborate with families in the development of clinical research [in order] for the outcomes of the study to match up with the needs of patients and families, such that we are addressing what is most important. Participation in this process can result in valuable insights and connections for recruitment.”
Bridging the Gap
As part of our recent invitation to solicit research proposals from investigators within the ATN, we hosted a series of calls we called “Bridging the Gap.” The purpose was – and continues to be – to facilitate discussions between researchers and our Family Advisory Council. These discussions identified several emerging research priorities for families. They included autism-related anxiety, sleep issues and gastrointestinal (GI) distress.
“The families had excellent questions about the research and also had some suggestions about what a study protocol on anxiety might include,” says Ben Handen, a researcher at the University of Pittsburgh.
“As the parent of a son with autism, it has been eye-opening for me to work with researchers and have my ideas and topic priorities taken into consideration as proposals are being developed,” says parent Amy Kratchman, a member of the ATN Family Advisory Council at Children's Hospital of Philadelphia.
“Since I experience autism first-hand, the research team has valued my feedback and offered me the experience to engage in all parts of the study from developing the question to helping interpret data. It is a truly rewarding experience to be a partner on the research team.”
Putting words into actions
It’s not enough to say we have family partners in our research. We have to put our words into action. Bridging the gap that exists between researchers and family partners begins with strengthening communication. It will also strengthen the quality of our research.
I’d like to extend a special thank you to all our ATN families as well as the larger Autism Speaks community for supporting the network’s mission to deliver high-quality, coordinated healthcare to the autism community.
Finally we’d like to invite readers to participate in an upcoming network webinar on “Family Engagement” in autism research. On Thursday, April 23, from 3 to 4 pm ET, Amy Kratchman and Janet Seide, two members of the ATN’s Family Advisory Committee, will discuss family engagement in research and improvement activities. Learn more and register here.
* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.