Posted by Derek Aday on February 01, 2018
My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.
I am a researcher by training – I have a PhD in ecology and evolutionary biology from the University of Illinois – and for most of my career I have directed a research laboratory at North Carolina State University (NCSU). My career has recently taken a turn towards administration and I currently serve as department head at NCSU, but I remain actively engaged in the research environment and lead a department with significant research funding from federal agencies such as the National Science Foundation and the National Institutes of Health.
I’m pleased to be able to apply what I have learned in my professional career to the advancement of research co-production in ImproveCareNow, continuing to build on the legacy left by Dr. David Wohl who led the PWG Research Subcommittee for several years. At the core of our subcommittee is a belief that research should benefit patients; that it should be conducted with parents & patients, not for or about them. The parent members of the subcommittee work to support the inclusion of parents & patients on research teams, involving them directly in the conceptualization, development, implementation and dissemination of findings of research studies.
The subcommittee has been busy this year, making progress on our 30-, 60-, and 90-day goals. Our 30-day goal, completed (I’m happy to report!) within 30 days of the Fall Community Conference, was to add three new members to our ranks; we added 11. Our 60-day goal was to submit a research proposal for review to the ICN Research Committee, which has also been completed. We are now working on a 90-day goal of creating a document with principles that characterize research co-production, something we think will be useful for patients, parents and practitioners as we work towards our common goal of improving health & care of children and youth with Crohn’s disease and ulcerative colitis.
If you are interested in learning more, I invite you to connect with the Parent Working Group and express your interest in the Research Subcommittee. We have a dynamic group of engaged and committed parents and welcome the opportunity to connect with new members. You can help ImproveCareNow do research that benefits our young patients and their families.
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Learn more about Research in ImproveCareNow
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