For the past several years, I have been leading a team developing and implementing a group visit model to improve pediatric ADHD chronic care. The idea was to restructure the visit from a traditional 15-20 minute quick follow up to a longer 60 minute group visit followed by a “check in” to refill medications and ensure the child’s growth was adequate. Since 2011 our group has been working hard to design a unique parent and child curriculum to delve deeper into ADHD so that pediatric providers can facilitate conversations with up 6-8 families at a time.  Parents are in one group and the children are in another group that is run concurrently but in separate rooms. Our first study (published in Journal of Developmental & Behavioral Pediatrics, October 2015) showed that parents who attended the first visit reliably came to all subsequent visits and reported improve child functioning in the home compared to families who were assigned to usual care.

We received additional funding to continue this work.  Part of the funds went towards recruiting a patient advisory board (PAB). Working with families affected by ADHD in this capacity has been so rewarding. Granted, I see patients in a behavioral pediatrics clinic where I provide evaluation and support to families. However, engaging families in research in discussions around study design, implementation, and finally to dissemination has truly transformed my approach to research. My ultimate goal was always to improve patient care by engaging families and providers. Prior to working with a PAB, I was operating on the knowledge and expertise I had gathered through the years from my clinical experience, from my mentors and from my research training. I have seen first-hand the value of engaging families to share their expertise of what it is like for them to raise a child with ADHD, what is like for them to consider medications, what it is like for them to get those calls from schools…and to learn truly what matters most when tackling these issues.

Bringing in health communication designers to help translate the stories into products that capture the family voice and weave it into the study process has added a new dimension to the work we do. I love working with creative and fun individuals that have a different and “out of the box” approach by bringing visual design into healthcare.

For example, talking to families about how they wish to learn about our study led to the colorful and bold pamphlets that could be strategically placed in the waiting room to catch parents’ eyes. Parents wanted to come upon the information and be activated to talk to their child’s doctor about joining. Parents  are interested in seeking information but would prefer to take information in, digest and consider before being approached by a research assistant. The brochures functioned to help recruitment efforts by activating families to ask about the ADHD groups.

This is just one example of the benefits of patient engagement and visual health communication and design. I cannot imagine going back to the “old” way of doing things. It has been a rewarding journey thus far and I plan to keep moving forward. 

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