When I came back from my interview for a position as an adult congenital heart disease (ACHD) doctor with the Yale Adult Congenital Heart Program, I could hardly contain my excitement. I remember telling my husband how excited I was to find a program that had everything: nurse coordinators, advanced practice providers, a social worker (in clinic!), and access to brilliant and innovative physicians on both the pediatric and adult side that shared my passion for taking care of congenital heart patients.
I was fortunate to have trained at some of the best institutions in the country, and after 10 years of training, I wanted to make sure that the team I joined shared my values and work ethic. Most importantly, I wanted to make sure that the care we provided was world class and held to the high-reaching standards that I was used to.
Previously, I had never experienced a program that had seamlessly figured out how to give adult congenital patients excellent care tailored to their independent needs without having to deal with the hospital politics of adult vs pediatric cardiology. In fact, it was immediately clear that Yale cared most about making sure that ACHD patients had a home in Connecticut and surrounding states that treated their complex heart disease, but also helped them navigate the socioeconomic disparities and mental health challenges that are so often overlooked.
I see this in action every day when our ACHD Nurse Coordinator Kinga Snieg spends hours on the phone with pharmacies to ensure that medications are affordable, or when she follows up to make sure patients are taking their medications appropriately. There’s also Registered Medical Assistant Jess Santora, who our patients know will move mountains if they need to be seen urgently, and always makes sure they have appropriate follow-up care. What always gets me, though, is when Dawn Lorentson, our social worker, who knows every hidden resource that is accessible to our patients and takes pride in advocating for their specific needs and unique circumstances, once again discovers a critical or life-changing event prior to a patient’s appointment that we can address preemptively.
It takes a village, sure, but our village is filled with compassion, dedication, and most importantly heart—and that makes all the difference.
Long before I stepped into my position, the Adult Congenital Heart Association ACHD Accreditation process at Yale had been started by the director of our program, Dr. Robert Elder. When I asked him what the process had meant for the program, he told me, “it allowed us to reflect on our own processes and strengths, make sure we had all the best team in place, and reflect the good quality of work that we do to the rest of the country.” While the process is long, similar to his comments, every other accredited program I have spoken to has benefited from the process in some way.
Some programs have used the high standards of accreditation to ensure that they are staffed appropriately or have petitioned their hospitals to recruit personnel that were not previously affiliated with their ACHD programs. The rigorous criteria that ACHA has for accredited programs—including having congenitally trained surgeons, advanced imaging cardiologists, interventional cardiologists, social work, advanced practice nursing support, and heart failure/transplant support—are all necessary for our patients whose needs are innumerably complex.
I see firsthand how the results of the process allowed us to take a closer look at our program and ensure that everything we’re building together meets the same standards as other top-notch accredited programs across the country. The site visit, for instance, allowed for ACHD physicians from other accredited institutions—along with ACHA staff—to critically examine our program, and share information about what works for them and what obstacles they have encountered.
In fact, there are ongoing discussions that occur on a national level for accredited programs to share best practices. Through this kind of collectivity, we can legitimately impact the lives of countless congenital heart patients.
For so many years, congenital cardiology felt like a silo with a handful of programs and a lot of practice variability. Currently, there are 50 ACHA ACHD accredited programs in 26 states. In 2010, the Centers for Disease Control and Prevention estimated that there were approximately 2.4 million people who were living with CHD in the United States.
Imagine if we had enough centers to take care of everyone.
Imagine if ACHA served as a bridge to every institution and this led to collaboration in research, funding of multicenter trials, innovation, and policy change. Imagine a world where a patient with CHD didn’t have to worry about whether their dream college or job was close enough to an ACHA ACHD Accredited program.
Holding every program to a high-reaching set of standards is the first step toward universal success. It not only makes sense, but it also protects the ACHD community. We at Yale are proud to be part of the ACHA ACHD accredited community, and I am grateful to play a small role in the lives of our patients living with congenital heart disease. I look forward to seeing how our community evolves to meet the demands of an ever-growing CHD population.
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.