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Twelve Years and Counting: It’s Still about Collaboration

Cheryl Cohen
IAN's Director of Online and Community Programs

April 30, 2018

If you are reading this, you probably know about the Interactive Autism Network (IAN) and the work that we've done to engage the public in research by learning about the experiences of families and individuals with ASD from them directly and promoting the community's research priorities. As it turns out, it's been a colossal collaboration between more than 60,000 research participants and 500 research projects, numerous advocates, governmental and non-governmental organizations, research institutions, and clinicians throughout the U.S. and the world. In addition, we've shared what we've learned through these collaborations with millions of people via IAN Community.

I asked the team to list IAN's most important achievements of the past few years. In looking at their lengthy lists, I realized that there was a lot to share. I'll start with our PCORnet, the National Patient-Centered Clinical Research Network, projects.

Since 2015, IAN staff members have worked with hundreds of people with over 150 common and rare conditions, as well as researchers and clinicians to improve healthcare decisions by engaging stakeholders in research that matters to them. Kiely Law, MD, MPH, IAN's research director and the principal investigator on the PCORnet project, works tirelessly participating in discussions, sharing ideas, and bringing them to life through demonstration projects.

Why Stress?

The Healthy Mind Healthy You study involves twenty other PCORnet networks and hundreds of community stakeholders to “determine the minimally effective dose” of mindfulness training and practice to manage stress and increase wellness. In the near future, a small number of qualifying IAN Research participants will receive notifications about how to participate in this project. Learn more about IAN's role in Healthy Mind Healthy You and the project in general.

Sharing your Medical Records

Over the years, we have heard researchers lament that they would like to look at both the participant-reported information that IAN gathers from a person with ASD in combination with his or her electronic health record (EHR) data to gain insight into ASD. We've also heard our research participants complain that they can't share their EHR information with IAN. In the Electronic Health Record Data Linking Pilot Project, IAN is collaborating with three other PCORnet patient networks to establish a new way for families to securely share their child's medical records with a trusted research organization to help answer important questions about ASD. The combination of EHR data and family-reported data will help researchers and clinicians better understand the impact of ASD on a child's health and well-being.

Improving Medical Care

When we think about ASD care, we often think about behavioral therapies, drug treatment for irritability, social skills groups, or speech therapy that target the difficulties that often arise in people with ASD. We don't often think of the special medical needs of people with ASD. In addition to the usual medical care issues that children face, children with ASD are more likely to have, for example, seizures, gastrointestinal difficulties, and problems with sleep. For the most part, healthcare professionals are not trained to work with ASD families and look out for their special healthcare needs.

Thanks to PCORI funding distributed in 2018, a new Autism Learning Health Network (ALHN) is taking shape. It's a way for knowledge gathered from a variety of sources to be used to improve care for people with autism. The Autism Learning Health Network, is the next step in developing best practices derived from deeply researching healthcare data and getting input from affected families. This ALHN will involve IAN, the Autism Intervention Research Network on Physical Health (AIR-P), the Autism Treatment Network (ATN) and, of course families with ASD. Other organizations involved are the U.S. Department of Health and Human Services, Health Resources and Service Administration (HRSA), Autism Speaks, Massachusetts General Hospital, the Anderson Center for Health Systems Excellence, at Cincinnati Children's, and the list goes on.

What's Next?

Next in our series, we'll look at how we are working with other organizations and the community to advance adult research.