Parents as Partners…. The long journey to true transparency.

Bambi Alexander-Banys worked in pediatric psychiatric emergency and the neonatal intensive care unit before graduating with her Masters of Science in Nursing from Boston College.  Commited to education as well as practice, Ms. Alexander-Banys began teaching in 2001 and maintained an adjunct faculty position for over ten years. She provided outpatient care to disadvantaged youth and owned her own concierge practice in Silicon Valley before joining the inpatient cardiology team at Lucile Packard Children's Hospital (LPCH) at Stanford where, in addition to providing inpatient clinical care, she manages the single ventricle Interstage Home Monitoring Program.


‘Parents as Partners’ is a smart phrase uttered by a wise and insightful parent following our transparency workgroup retreat at the recent National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Learning Session.  At first glance I knew that was exactly the right phrase to describe what we are striving for in our efforts to improve transparency.  Just as in other kinds of partnerships, each individual enters the relationship with a slightly different history, varied communication style, and sometimes, even trust issues from prior failed partnerships.  So, regardless of everyone’s shared goal, and strong desire to achieve that goal, progress can be slow and it always requires a lot of work.

I say this as a means not of telling others to be patient and ‘keep on keeping on’, but rather to remind myself.  You see, I am not, by nature, a patient person.  I’m more of an action kind of gal; see a problem, identify the solution, implement it, move on.  So, when the solution seems so obvious – share openly without reservation or hesitation – it is hard for me to work through a slow and methodical process.  But just like I cannot move an individual patient, family, or even my own children or husband, to a decision or through a process faster than they are ready for given their own life experiences, perspectives and communication styles, I cannot bulldoze fifty plus surgical centers and all of their associated components through this process.  What seems obvious and easy to me may seem terrifying to someone else.  That terror is very likely grounded in something legitimate for that individual, thus the need for continued patience and understanding.

How does one, especially one who is impatient like me, help move others forward?  While I can’t push anyone else, I can show it is safe and hopefully in the process help them inch their own way closer.  That was the goal of the Transparency Pilot at the NPC-QIC Learning Session and why it was essential to me that my center not only participate but especially that we embrace the opportunity to show that it is OK to talk about the things you aren’t great at.  So, there I stood, the first to speak, in front of over 200 hundred people talking about a process we struggle with and why we’ve not been successful in efforts to record the requisite data at clinic visits.  I didn’t feel compelled to qualify it by explaining all the things we do well, or counter it with the outcomes we are proud of.  I just put the data out there, acknowledged we don’t do that piece well, with language that was intentionally highlighting this as a ‘negative’ disclosure.  It was painless.

Even though most of what was shared in the rest of the session reflected well on the centers and thus was ‘low risk’, the pilot was, in my mind, a huge success.  I suspect people cared little about the data itself and whether it was ‘good’ or ‘bad’.  Breaking the ice and putting it out there, without any negative response or discomfort, is what really mattered.  It was the first step in building trust and bringing a diverse group of partners closer together.  It was also the easiest step.

As we move further down the path, asking more centers to share and to share data that is more likely to make people uncomfortable, we will necessarily need to continue to build a framework that supports and encourages a sense of safety.  Much like business partners delineate terms in an actual contract, not because they assume the worst of one another or else they would not be partners, but because you cannot always predict the future or assume shared opinions on managing unforeseen variables, we might need to establish more a formal structure and some agreements initially.  More steps.  More patience.

If all of this patience is a challenge for me and other clinicians, I cannot imagine how difficult it is for parents who justifiably argue that this is information that they are entitled to and NEED in order to advocate for their families and better support their centers.  Should it be this difficult?  No.  Should it take this long?  No.  Should it require this much patience and persistence?  No.  Yet, it is and it does.  We don’t live in our ideal world, we are still making it.  And if we are to be successful in this undertaking, in building this partnership, we must be patient with the process and each other.  I promise to keep trying and I hope you will too

Photo from the Spring 2015 NPCQICLS (left to right): Holly Bauser-Heaton (Postdoctoral Medical Fellow, Cardiology), Jennie Briend (Parent), Gail Wright (Clinical Associate Professor, Pediatrics - Cardiology), Bambi Alexander-Bayns (Nurse Pracitioner)