Sunday, October 28, 2012

What a CATCH!

A little over a week ago—on October 20—the launch meeting of the Chicago Adult Congenital Heart (CATCH) Network was held. This new initiative is a patient-centered, inter-institutional network established to ensure that all adults with congenital heart disease in the Chicago area are receiving appropriate follow-up care. Knowing my involvement with ACHA, my cardiologist personally invited me to attend as a patient advocate; and I jumped at the opportunity.

The meeting included a variety of presentations by leading adult congenital cardiologists throughout Chicago, as well as one by Dr. Michel Ilbawi, Director of Pediatric Cardiac Surgery at Rush University Medical Center. Thirty-one years ago, Dr. Ilbawi was the first assistant in my open heart surgery. I was excited to meet this man who helped save my life as an infant, but I don’t think I was prepared for the emotions that came over me when I was in his presence. Dr. Ilbawi is a warm and humble man, but there was no questioning the great admiration and respect that his colleagues have for him. While listening to his presentation, I literally got chills as I thought about the direct impact that this man has had on my own life. It was an experience I won’t soon forget!

Me with Dr. Ilbawi
The content of this first meeting was geared primarily toward medical professionals and included presentations on the historical landscape and CHD surgery, insights from basic CHD research, CHD in pregnancy, and transcatheter valve replacement in adults with CHD, among others. But the day concluded with an open discussion about how to continue moving this network forward and ensure its patient-centered focus. Before I knew it, I was getting involved with one more CHD initiative.

Over this next week, I will be having conversations with a cardiologist at Rush University Medical Center, one of the coordinators of the CATCH Network, and some ACHA staff members to continue the brainstorming. I believe there is a lot of potential here, but it is essential that the CATCH Network moves forward with a specific plan and a clearly-defined set of goals. Furthermore, it will be equally important to collaborate with other local and national CHD resources and organizations—such as the ACHA—to ensure that individual efforts are complimenting, rather than duplicating, one another.

One thing that was particularly interesting (and also somewhat frustrating) to hear at this launch meeting is that there are not many well-established, local inter-institutional networks of ACHD programs and cardiologists throughout the country. (Atlanta, Boston, and Cincinnati were cited as exceptions to that statement.) One thing the CATCH Network aspires to do is to break down the barriers between local ACHD programs and the notion of doctors having patients that are exclusively “theirs.” What I experienced in that meeting room was a group of adult congenital heart specialists who wanted to work together to ensure the best possible care for their ACHD patients collectively.

I truly hope this spirit of collaboration continues and that, in time, Chicago will become a model of adult congenital heart care in the United States. I know this won’t happen overnight, but I believe the potential is there. The excitement in that meeting room was palpable, but the success of the launch meeting will only really be measured in the initiative’s longer-term outcomes.