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Patient Experience Through Different Lenses

Posted By Katie Litterer , Friday, May 27, 2016

I am the proud mom of identical twin girls, Sophie and Maddie, who were born unexpectedly and prematurely in 2008.The years since their arrival have been tumultuous, triumphant and everything in between. For more about our story, please check out this recent article on Boston Children's Hospital's Thriving Blog.

To say that my husband,Paul, and I weren't ready to advocate for our children upon their arrival is an understatement. Fueled by adrenaline and fear I didn't know what questions to ask, I often struggled to understand what the medical team was communicating to us and I had no faith in myself when nurses would say, "You're the mom, you know your children best."

I stopped working to care and advocate for my daughters and, over the years, have become a mom I know they can count on. I have also turned my advocacy for them into a new career. I started this journey by serving on the Boston Children's Hospital Neonatal Intensive Care Unit Family Advisory Council from 2009-2011. Since 2012 I have served as a member of the hospi­tal-wide Family Advisory Council alongside 16 other parents. And,in January 2016, I joined the staff in our Hale Family Center for Families as a Family Partnerships Coordinator. In this role, I strive to weave the voice of patients and families into the fabric of decision making at Boston Children's. It's a role I cherish and feel honored to serve in.

These have become my "truths":

Patient experiences are as much about Paul and me as they are about Sophie and Maddie. A great patient experience, for us, is defined both by medical outcomes and by Paul and me tak­ing part in finding solutions. Within this experience process, I advocate until I am satisfied that I've done my best for my children, and I expect our care team to understand and respect that.

Working alongside other volunteer family advisors has taught me and that every family has their own patient experience stories, perspectives and priorities. While my natural tendency is to ad­vocate for what I believe would suit my own family best, I remind myself that it's important to col­laborate with-and respect the perspectives of-other advisors to achieve our larger group goals.

I recognize that experiences are determined both at and beyond the bedside; that improving patient experience within an organization is a fluid team effort; that there is no singular equation that guarantees a positive outcome every time. At a recent Patient Experience Summit, Juliette Schlucter, Director of Child and Patient Experience at NYU Langone Medical Center, shared a view that deeply resonates with me. It is that if you want to affect great change, you must be willing to listen to the other voices in the room. She was talking about collaboration.

As a parent, a volunteer family advisor and now, as a hospital employee, I have gained different perspectives on what patient experience means and how a great patient experience can be achieved.


Katie Litterer spent 10 years working in the financial services industry before becoming a mother to identical twin girls, Madeline and Sophie, born at 27 weeks gestation. With care experiences at 5 hospitals in two states, Katie began volunteering her voice as a family advisor in 2009. Katie now juggles her role as a Family Partnerships Coordinator at Boston Children's Hospital with her most important job, caring and advocating for her sweet girls. Katie is also an active member of her daughters' school community in addition to serving as trustee for a charitable private foundation that supports archaeological research of native peoples in the Americas.

Tags:  collaboration  journey  patient and family advisor  patient and family advisory council  pediatric  story 

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