By Amy Edgar, NP | Founder, Children’s Integrated Center for Success 

I have the humbling experience of meeting children, parents and families every day who are engaged, committed, and doing everything right to try to create the best quality of life and possibilities for success. They read.. a lot. They search out both high level academic research and the latest community blogs. They invest hours seeking information and answers and dealing with a myriad of confusing symptoms, behaviors, and advice. They travel, sometimes great distances to meet with professionals. They take medications, supplements, and try alternative therapies. They work so hard. All the time. On average, by the time I meet families, they have been looking for help for more than 3 years. Many have started to internalize that they may never find answers. More than 60% of kids over the age of 8 years old that I see have already failed two or more trials of medication or supplements. I am continuously inspired by how much families love each other and persist in the face of what at times seems overwhelming confirmation that there is nothing more to be done.

This particular story resonates with me professionally as it is also my story personally. When my daughter, Mary, was two days old, I said out loud “Wow she really can’t coordinate her tongue. Her muscle tone seems pretty low.” (Just what you’d expect from a new mom scientist/clinician) When I asked her primary care provider, she responded in a very supportive and caring manner. “Don’t worry, you know too much.. she’s perfect”. And she was correct. Mary is perfect. She also has Autism. And at this point, we’ve done everything possible. I’ve been encouraged to keep hope alive and wait for something new.

In 2011 I started to think broadly and deeply about emerging possibilities. Science began to explode with new information in all directions it seemed.. genetics, microbiome, middle range neural circuitry, connectomes and biochemistry, technology and engineering and design all coming together in unexpected, exciting and creative ways. I became a consumer of information at an unprecedented level in my own life. I went back to school to add a Post Master’s degree in Primary Care to complement my previous MSN in Child and Family Psychiatry. I started asking questions about the validity of the questions we ask in healthcare. I became a member of the Walking Gallery and the Society for Participatory Medicine. I volunteered to trial technology and design experiments.. a lot. I curated a Twitter feed and social media stream focused on emerging technology and science. I went to conferences. I continued to learn and ask questions and along the way met amazing and dedicated thinkers and innovators all with a mission to bring healing and health to the world.

In 2014, I dedicated the rest of my professional life to bringing new and emerging science to the children and families who need it. Now. Not later. I opened a small outpatient practice with a focus on helping kids and families be successful. Integrating primary care understanding with behavioral health and developmental constructs, rooted in collaboration and shared decision making, and bringing the best that science and technology has to offer, to understand the N of 1 child in the broader context of best practice and precision intervention.

When a family comes for their first visit, we spend an average of 75 minutes hearing the story, completing a primary care and developmental assessment, watching and interacting with the child and family. We start a conversation that leads to multilevel evaluation and data collection, including self collected and tracking data, school collected data and art. Genetics, cognitive testing and performance data provide specific targets for both biologic, psychotherapeutic and skills training interventions. Qualitative data from art evaluations and other nonverbal expressive therapies like play, lead to insights about emotional experiences not easily expressed with language. We take all this amazingly rich data and create understanding that is powerful in helping now and is predictive of future possible difficulty. This then creates fertile ground for prevention. In a data set, I can see why a child struggles in math and not reading, predict why they tune out in certain situations, explain the horrifying meltdown at the grocery store. With this shared understanding, together all the grown ups around the child can help to prevent the negative downward spiral I so often see internalized by age 10 and or 4th grade. It is both beautiful and inspiring to be able to offer this to children and families, now not later.

Someone asked me recently, what do I see as my greatest challenge. It made me smile and cringe at the same time. There are many day to day challenges bringing new and emerging science directly to practice. I frequently get asked about my credentials and questioned about being “just a Nurse Practitioner”. I am often dismissed skeptically by other professionals as a result of my lack of an academic research pedigree. My patients are questioned about “how they got this information” or asked are they sure they can trust someone to discuss genetics who is not credentialed from an Ivy league institution. (I actually do have a graduate degree from the University of Pennsylvania) These are the challenges that make me cringe. Not because I feel inferior, but because these questions and challenges reflect a wider, deeper, broader resistance to bringing the science of now and tomorrow into practice today. This larger paradigm of it’s ok to wait 15 years after the evidence to bring it to practice..This fear of being first and getting it wrong. The temptation to let others lead the way and stay safe and protected from liability. Doing things the way we always have. This makes me cringe. Because my daughter has atypical Autism and we don’t have the luxury of being safe, waiting for someone else, following the path of least resistance.

What makes me smile? I had someone compare me to Johnny Appleseed in a meeting yesterday.. That generated a deeply satisfying chuckle. We are becoming more visible in the world. I am more frequently invited to talk about our work in Allentown at national conferences. I have over three thousand families in care and every day someone says to me, “thank you for doing this, it has changed our lives”. We have been asked to bring our practice to sites in six other states in the nation, as well as internationally. This is actually my biggest challenge. I don’t sleep much or see my family much or do anything much more than work. And for now, I am willing to meet that challenge with everything I have.

So if you’ve ever asked questions like “How do we get that to people faster, more efficiently, and use it to help them now?” or “Can complex data be used to target interventions without waiting for artificial intelligence and algorithms and machine learning to take over?” “Is it possible for predictive analytics to help prevent disease or decompensation now not later?” “Will blockchain technology be the solution to all data exchange in healthcare?” If this is you.. take the leap. Don’t wait. Try it now. And come visit us in Allentown, where we see real life outcomes right now, every day, every child, every time.