Wednesday, December 4, 2013

Take Action: Be Part of the Solution

Over the last year, Sisters by Heart has played an active role in the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC).  NPCQIC's goal is to improve the quality of care and outcomes for HLHS infants, particularly during the interstage period.  Learn more about NPCQIC's goals and visit the "Parents" tab here:

Twice a year, NPCQIC holds Learning Sessions for the 50+ cardiac centers across the country to attend and share their practices, successes, procedures, and ideas.  Over the last 12 months, with Sisters by Heart's help, parents played a much more active role in the NPCQIC learning network.  The network is made up of cardiologists, nurses, dietitians, quality improvement researchers and parents of HLHS children.  We all come together to have candid conversations about feeding, mortality and the struggles we face as parents and clinicians.

One major boundary both clinicians and parents noticed in the pediatric congenital heart community is a communication gap.  This large gap (acknowledged by almost everyone involved in the collaborative) exists between two of the most important players on the team - the parents and the cardiac clinicians.  As you know, there's little room for miscommunication in the HLHS world.

By invitation from collaborative leaders, Sisters by Heart is actively participating in NPCQIC to bridge this communication gap - so that parents and cardiac teams are working as one.  Sisters by Heart board members attend the Learning Sessions each fall and spring and participate in monthly telephone conferences with cardiac centers. As HLHS parents, we're working to empower all parents to play an active and vital role in our child's care; you know your child the best and your cardiac team lacks something every parent is blessed with - parental intuition.

Aside from the Learning Sessions held in Cincinnati each spring and fall, NPCQIC holds Monthly Action Period Calls.  Parents engaged in the collaborative participate in these calls - sometimes to listen, sometimes to teach.  There is limited space for these Action Period Calls, however, Sisters by Heart wants to make certain that all HLHS families are provided information on what is being discussed and who they can contact to get involved in the broader discussions.

The November Action Period calls included the following information/discussions.  A special thanks to HLHS dad, Trent Neely, for providing this update:

Three new cardiac centers were added to the collaborative: Baston Children's, Children’s Hospital of Alabama, and Rainbow Babies & Children’s Hospital.  The Collaborative is now made up of 54 centers across the country, meaning that over 90% of the centers performing HLHS palliation are involved with NPCQIC.  It is very encouraging how open these centers are, working together to improve care for HLHS infants.  With the new centers joining the call, an overview of how data is gathered, charted and discussed was given. Each center can view their own reported data and their relationship to how the other centers in the collaborative are performing.  

The main topic of conversation during the November Call revolved around data transparency amongst centers. At the Learning Session in September, after reviewing successful transparency models from other national pediatric collaboratives, there was overwhelming agreement that NPCQIC centers should move towards transparency within the collaborative - so that other centers can see outcomes being attained amongst their peers. All parents on the calls and at the Learning Sessions supported a move to transparency; it is our belief it's the fastest way to "move the needle" on quality and improved outcomes.

There is definite momentum growing in the transparency movement and it appears as though NPCQIC is ahead of the curve on the topic.  The next step in transparency is the formation of a "Transparency Workgroup" which will include parents, clinicians and possibly cardiac surgeons.  Rob Beekman, M.D. also shared a TED Talk about transparency which embraces the "What Doctors Can Learn from Each Other" discussion.  

If you'd like to learn more about the National Pediatric Cardiology Quality Improvement Collaborative, please email Kay Fricke, NPC's Parent Liaison at  The collaborative's next Learning Session will take place April 25-26th in Cincinnati - so mark your calendars!  We'd love to see more and more SBH families (moms and dads) involved in transforming the lives of HLHS infants and children.

"If everyone is moving forward together, then success takes care of itself." ~ Henry Ford (the second paragraph in this link is of particular poignancy - the Life of Henry Ford).

“Unity is vision; it must have been part of the process of learning to see.” ~ Henry Adams, The Education of Henry Adams

Remember, our voices are meaningful, our voices are needed.