Why engaging families in research is important…

images-2I have been working closely with my ADHD patient advisory board (PAB) for the past several years to improve upon ongoing work examining primary care-based interventions for ADHD. It is hard to believe we are nearing the end of a 2 year process. I have witnessed the change within parents who participated in the research as a ‘subject’, then agreed to serve as a ‘consultant’ to me and my team to help us think through important study issues and brainstorm solutions as challenges arose…and finally to ‘collaborators’ in the final stages of the current study.

However, they are not the only ones who have changed. I have changed too.

As a behavioral pediatrician, I see patients in clinic to provide recommendations to families who are struggling with child behavior problems. As a researcher, I take those clinical experiences and think of new and different ways to solve the bigger problems of earlier identification and management of behavior problems in busy clinics, how to improve communication at the point of care and finding solutions to support pediatricians and families in the process.

It was not until I worked closely with the parents & children who were members of my PAB that I truly began to appreciate just how meaningful their “voices” were to the work I do.

Don’t get me wrong. I have always been a collaborative person. I think that is partly why I love developmental-behavioral pediatrics as a field. It is, by nature, an interdisciplinary field. It is also why my research has always involved working within the clinics and the healthcare team and not simply analyzing data. Add to the mix a wonderful team of health communication designers and I was hooked.

Below is a video filmed by a co-investigator/filmmaker, Mr. C. Thomas Lewis, from IUPUI School of Informatics and Computing a few weeks ago to tell my story about working with a PAB and how it has changed my approach to conducting health services research.

Watch my story by clicking here.

If you are interested in learning more about health services research, check out the Indiana Children’s Health Services Research website at: www.ichsr.org


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