Why You Should Join Connie’s Patient and Family Advisory Committee

By Brian Bell, Connie Patient Family Advisory Committee Member

I’ve suffered from chronic migraines since I was a teenager. Over the years, this led to me becoming a big “healthcare consumer” - meaning I spent a lot of time, money and energy seeking a diagnosis and ongoing care for my neurological disorders.

“At least I live in Connecticut,” I always told myself. We’re lucky to have so many great health systems in our small state, where I was able to seek best-in-class care for the debilitating symptoms that impacted my daily life.

But even with years of practice, the pandemic proved a real test of my endurance, as

headaches landed me in the emergency room at least once a year. During these episodes, I was in blinding pain, and somehow, I was expected to be able to provide detailed information about my medications and health history. It was never easy to remember everything on a good day, let alone during a migraine serious enough to land me in the hospital. I felt anxious about making sure the care teams in front of me had all the potentially life-saving information they needed to be able to help me.

Even during visits with my regular primary care provider, I watched the minutes tick by as I spent more than half my visit just trying to fill them in on my health updates since our last appointment. It felt like such a waste of both our time, and I was frustrated by the burden that was placed on me to recall details that should have easily been shared digitally if only every provider’s system talked to each other.

Thankfully, here in Connecticut, we’re lucky to now be supported by Connie, a state-designated health information exchange (HIE), which allows providers to share health data with each other no matter which facility they work from or what EHR charting system they use. 

My experience navigating the healthcare system inspired me to join Connie’s Patient and Family Advisory Committee (PFAC), so that I could share my experience with the decisionmakers who help shape the HIE’s tools and services. In this role, I’ve seen that Connie recognizes the power of meaningful patient and family engagement so that the HIE can play its part delivering quality health care.

Through attendance at a handful of virtual meetings per year, I get to make my thoughts and opinions heard. I have the opportunity to listen to other others from around the state who share similar challenges or frustrations, and work together with them to provide recommendations about how Connie can improve patient services. As a team, we’re helping shape the future of healthcare in Connecticut.

Connecticut’s patients deserve to be heard, and Connie welcomes our perspectives. If you want to know more about PFAC or get involved, visit www.conniect.org/pfac. 

By Brian Bell

Brian Bell is a lifelong resident of Connecticut and active member of Connie’s Patient and Family Advisory Committee.