By Kirsten Klatka, clinical program manager for the Autism Speaks Autism Treatment Network (ATN). In this role, Ms. Klatka helps lead the ATN’s federally funded work as the Autism Intervention Research Network for Physical Health (AIR-P).
This year, the Autism Speaks ATN/AIR-P is partnering with the Anderson Center at Cincinnati Children’s Hospital to build a Learning Network in autism care. A Learning Network enables patients and families, clinicians, researchers and communities to collaborate in quality improvement, innovation, and research to improve care and outcomes for children.
We are currently in the planning stages of our nationwide Autism Learning Network. This stage of the project involves identifying specific aims and measures.
Last December, the Anderson Center team met with AIR-P/ATN leadership, family representatives, and faculty advisors to develop a shared understanding of what a Learning Network in autism care might look like.
This work included identifying goals, understanding ways to measure progress, and focusing on a group of patients with whom to begin this work.
We discussed what goals families would like to see for their children and what an ideal system of care might look like. The group agreed that the following topics were important:
* Child and family well-being,
* Successful family and community participation,
* Physical health and safety, and
* Meaningful relationships.
We proposed that our first targetgroup will be children, ages 6 to 12, with challenging behaviors that disrupt or interfere with their daily quality of life.
From this pilot group, we will spread our learning network to improve how we address the needs of other patient groups.
The design team is now working to identify ways to measure improvements across each of the patient groups we hope to benefit.
Why are we doing this work?
Our healthcare system often doesn’t meet the needs of children with autism. This is an especially common situation among families with lower incomes and those in ethnic-minority communities.
Our overall goal for the Autism Learning Network is to improve the health and quality of life for all people with autism. To start, we will focus on increasing the number of children with autism who:
* get regular check-ups from a primary care provider,
* get regular dental care, and
* have regular vision and hearing checks.
We believe that by increasing the number of children with autism who are receiving this important care, we will increase their quality of life and physical health.
What exactly is a Learning Network?
A learning network is a collection of practice teams. Each team includes a doctor, a nurse, 1-2 parents of children with autism, an administrative coordinator (like a receptionist), and a member from the hospital leadership. The entire network collaborates to improve their patients’ health by making positive changes in care delivery.
In order to achieve this goal, the members regularly review measures toidentify what works well for patients and what needs to be changed to work better. The team tries out different strategies and assesses how well the strategy achieves the desired goal. If it benefits patients in clear ways, the practice team can choose to expand the change to all providers in their practice. They can also share their successful new methods with colleagues outside their practice.
Conversely, if a change doesn’t work, the team can decide to either reject the change revise it.
Learning from other Networks
I have had the opportunity to learn about the experiences and successes of learning networks that have been operating for several years. These networks have accomplished some amazing things through their work together. For example, another Anderson Center-led Learning Network– ImproveCareNow – works to improve the health of children with ulcerative colitis or Crohn’s disease. They have increased the remission rate of these disorders from 55 percent to 75 percent among the network’s pediatric patients.
What are some examples of changes?
To know where changes need to be made, the practice teams collect information from the families and doctors they see at their centers. The teams will look at the data and discuss it regularly to assess whether the small changes they are making are producing clear benefits. For example, one practice team might find that at the start of the project, 95 percent of the children are regularly seeing a primary care doctors, but only half are regularly seeing a dentist. In this scenario, the team may develop and implement one or more strategies to improve the rate of regular dental care. This might include decreasing anxiety around dental visits with a visual-support hand out such as the Autism Speaks Dental Guide. The care team might also identify dentists in the area who regularly see children who have autism. They might offer a behavioral therapy class to help the children and families manage the kind of challenging behaviors that frequently arise for our children during a dentist visit. Similarly they might offer support to local dentists – for instance with the Autism Speaks ATN/AIR-P Dental Professionals Tool Kit.
Introducing a new app for families
We’re particularly excited about the mobile app we are creating to help families share information with their children’s healthcare providers. This app will also help families track improvements and challenges in their child’s health and behavior. For example, if a child is having trouble sleeping, parents might decide to enter information about when he goes to sleep, how many times he wakes in the night and when he gets up in the morning.
Families can then share and discuss the results with their child’s healthcare provider to plan the next step in care.
We are currently working with families, doctors and technology experts to determine what kinds of information we want to collect through the app. We look forward to sharing it widely once we have it up and running.
What’s next?
Similarly – now that we’ve determined our goals for the Autism Learning Network, we are excited to start collecting and analyzing data and trying out small changes. We look forward to sharing what we have learned in the coming months.