Launching the Autism Learning Health Network

By Dr. Donna Murray

By Donna Murray, Autism Speaks vice president of clinical services. Dr. Murray oversees the activities of the Autism Speaks Autism Treatment Network (ATN).

The Autism Treatment Network works to improve and expand the reach of comprehensive healthcare for autistic children and teens

Today, I’m pleased to tell you about a major milestone in the work of the Autism Speaks Autism Treatment Network in its role as the Autism Intervention Research Network on Physical Health. The ATN/AIR-P network includes 12 medical centers across the United States and Canada, - all dedicated to delivering the best comprehensive healthcare for children and teens on the autism spectrum.

Over the next two years the ATN/AIR-P is expanding to become a learning health network in partnership with the Interactive Autism Network (IAN) of the Kennedy Krieger Institute and with the guidance of the Anderson Center for Health Systems Excellence, at Cincinnati Children’s.

This transition builds on the ATN’s longstanding mission to develop care guidelines that improve health and quality of life for people with autism. Making our new partnership with IAN possible is funding from PCORnet, the National Patient-Centered Clinical Research Network. This will bring the Autism Learning Health Network into a new national PCORnet Learning Health System Community located at the Anderson Center.

What is a learning health network?

Learning health networks are multicenter collaborations of families, providers and researchers working together to drive innovation, quality, safety and value in healthcare. They do so by using the experiences of patients to guide the development of improved healthcare practices.

In other words, learning health networks drive scientific discovery as a natural outgrowth of patient care and return their findings for use in the clinic to rapidly improve people’s healthcare.

Learning health networks also share their findings as widely as possible to improve health and outcomes for more people.

Building on our success in improving autism healthcare

Our early work as the ATN/AIR-P provided the scientific evidence needed to establish that autism is frequently accompanied by a range of medical and mental health challenges. These associated health conditions include epilepsy, disordered sleep, gastrointestinal problems and anxiety disorders, to name just a few. (See “Autism and Health: A special report by Autism Speaks.”)

Together, our ATN/AIR-P clinicians developed and published some of the first screening and treatment guidelines for these autism-associated health conditions. (See “Pediatrics publishes research & guidelines on autism-related health issues.”)

We see tremendous potential to build on these successes as we grow into a learning health network.

Leveraging technology

Learning health networks are known for making effective use of technology, including electronic health records. Technology enables us to collect information with every clinic visit. This is always done in a privacy-protected manner in collaboration with participating families.

We are particularly interested in developing systems that make it easier for more patients and families to participate by contributing information that can improve healthcare.

As mentioned earlier, we’ll use what we learn from the patient experience to develop improved treatments and support services for autism-related medical conditions. We’ll then test these new approaches with clinical trials and compare their effectiveness with other promising approaches.

As part of this work, we will be rebuilding the ATN Patient Research Registry in ways that will enable us to perform quality improvement analysis and introduce improved care strategies back into the clinic in a matter of months rather than years.

The network will focus on improving health and well-being in persons with ASD. One of our first priorities, identified as a major concern by families, is reducing challenging behaviors among children and teens.

IAN brings new resources

In 2006, Autism Speaks helped launch Kennedy Krieger Institute’s Interactive Autism Network as an online forum that enabled the families in the autism community to become active participants in research and directly link with researchers across the country. IAN continues this work today with funding from the Simons Foundation.

With the PCORnet grant, IAN and ATN/AIR-P will join forces to advance the new Autism Learning Health Network with links to other national learning health networks.

Our IAN partners bring groundbreaking tools and expertise for collecting reports from parents and other caregivers on the health and well-being of children who have autism, from infancy into early adulthood, while also supporting their families. This new capacity will allow the Autism Learning Health Network to engage with families between clinic visits and monitor the child and family’s advances in the home and community. We also hope to expand participation to families who are not directly receiving care at our ATN/AIR-P centers.