The Voice of the Pediatric Patient: Hope and Partnership

By Olivia Ohmer, KIDS Michigan, C.S. Mott Children’s Hospital Teen Advisory Council

This week, I was able to join Pfizer Pediatric Center of Excellence founder Dr. Charlie Thompson, Dr. Pol Vandenbroucke (and a behind-the-scenes wonderful group of Pfizer doctors and researchers), in a webinar designed to create a conversation with pediatric patients and their families about personal experiences in dealing with childhood disease and the hope that pediatric clinical research brings. Four patient/families from across the US, including, Lindsey and Evie Elsaesser from Nebraska, Debora and Laura Pellicano from Pennsylvania, Raymond Rodriguez-Torres and the memory of his daughter, Bella from Florida, and me with my mom, Amy Ohmer from Michigan, gathered to share their heartfelt stories and educate specialist in the medical fields and communities. With over 500 colleagues watching live and online the messages were sent around the world. My personal talk focused on involving patients as experts into medical research and the importance of to listening to all patients, no matter how small or how young. As families explained their own medical stories and presented individually, one similar idea was created among us all; and this was that involving patients as experts leads to better outcomes. Together, we shared that while each of us have our own stories, we can partner to collaborate on improving the medical community. After the presentations, we were able to provide an expert patient panel opportunity to field questions from the audience and the online community. With passion and enthusiasm it became clear that this was a wonderful opportunity to start the beginning of patient-centered clinical research. With research partners and our network of strong, informed KIDS groups, youth advisory groups, teen advisory councils, iCAN Research patient experts, we know that we have the ability to improve and increase participation into clinical research. We are very honored to have been a part of this event and look forward to continuing future work towards building even stronger pediatric clinical research.


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