I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.


I chose this cartoon not only because I am a PhD-to-be pediatric psychologist and like the Freudian throwback, but because pediatric patients are like the elephant in the room – overlooked and underused. What would happen if we recognized the potential of engaging children in their care & clinical research? As someone diagnosed with a chronic illness over 12 years ago and a doctoral student, I’m excited to share my insights with you all today.

Patient engagement in pediatric chronic illness is, in many ways, a myth. It’s a myth because it’s the after-thought following an appointment, because it looks different with each family, because “kids don’t want to be involved,” and because we think it can be solved in one fell swoop. Patient engagement is not a factor, it is the product of compassionate medicine that places the child at the center of an evolving developmentally and culturally sensitive conversation. Patient engagement is what happens when the system works, when providers shake off their metaphorical white coats and enter the clinical space as equals with caregivers and children. And yet, this is essential to the long-term, adult care bound children and adolescents, their engagement in the medical and clinical research worlds is vital to the positive responsibility of caring for a chronic illness, living resiliently, and fostering health literacy. I’m going to tell you an extraordinary story about how ordinary people in a powerful network achieved patient engagement.

Several years ago, I was at a biannual meeting of the ImproveCareNow Network and I was asked to come up with a song that represented my life with Crohn’s. I chose Taylor Swift’s “We are never ever getting back together,” as an ode to my long-lost colon. The audience of providers laughed, and came up to me afterwards asking if I would mentor pediatric patients having ostomy surgery. Of course I happily agreed, but I soon felt like I was only reaching the small percent of kids and not everyone, that as a network we weren’t harnessing the knowledge, experiences & perspectives. And that wasn’t okay.

As a patient powered research network, we could do much, much more. So as a co-chair at the time of the Patient Advisory Council for the network, we convened a task force of primary stakeholders throughout the network and used a quality improvement model to iteratively refine a pediatric ostomy toolkit. We’ve collected clinician-reported data on the toolkit and are presenting that data at a national pediatric psychology conference, and are working to pilot test it soon. Our toolkit was embraced and celebrated by the network, moving beyond patient engagement to ownership, and is now available to all providers and patients within the network. From an inequity grew determination, passion, and genuine encouragement & support from the network. This is not a story about a PhD student or a person who’s had IBD for over 12 years, this is how an ordinary patient saw an opportunity and how a network achieved something meaningful together. An ordinary patient refusing to let care as usual mean anything less than our very best. Patient engagement is the product of a culture, of transparency, of finding a shared passion. We did it, and we can’t wait to see it spread like wildfire.

When we only include children as research participants and operate on a researcher’s agenda, we miss the textures and colors that shape the veracity of our findings. In other words, we continue to make children’s experiences academic and sanitize children into participants. What if we created and operated on a collective agenda? What if we recognized the role of children in their own diseases and invited them to the research table, regardless of how many letters people may or may not have after their names. We fear involving primary stakeholders translates into subjective work, but that’s a deeply rooted misconception that simply isn’t true. Not only can we involve children in their research, but we can advance meaningful research. We can do more. So what are we waiting for?

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