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The Beryl Institute invites members and guests to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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How We Are Bringing the Voices of Patient and Family Advisors Together

Posted By David Andrews, Shari Berman, Erika Holliday, Barbara Lewis and Zal Press, Monday, November 28, 2016

The Beryl Institute Global Patient and Family Advisory Council consists of 15 people from around the world who come together to provide advice on the strategic and tactical direction of The Beryl Institute. Our role is to ensure that the voices of patients and families are central to the focus and decisions taken by the Institute.

Our members are people with chronic conditions, survivors, caregivers and family members whose collective purpose in our work is to use our experience as the guide to system and care delivery transformation.

While reflecting on our experience as members of The Beryl Institute community, it became evident that most patient and family advisors (PFAs) are working in relative isolation in their own organizations. Our council initiated an effort to begin the creation of a patient led and patient driven community within The Beryl Institute.  This community will recognize the value of PFAs, honor their work and provide a platform where we share information, resources, education, stories, successes and failures, and through which we can have greater influence.

In the past year, we have focused on the necessary building blocks for a community with PFAs as peer members with access to all the robust offerings and resources of the Institute.  The goal is to enable and empower, to build capacity and ability, and to maximize the opportunity of all PFAs to have the kind of impact that will catalyze the change necessary to improve the patient experience in care delivery and design, policy discussions, and research and development.

This has now brought us to the starting point for building our worldwide community that brings people from around the globe together in common purpose.

To that end, we have developed a three-step plan to build that community:

  • Phase 1: Gather – We are reaching out to all engaged in The Beryl Institute community to identify PFAs within their institutions. We want to know who they are, where they are, what their roles are and how to best communicate with them.
  • Phase 2: Inquire – We are committed to co-creation of a PFA Community movement. To achieve this, we will ask members what they want and need that will help improve the patient experience.
  • Phase 3: Build – Based on what we discover, we will build the connections, resources and information the community has identified to build a working network with greater power to influence.

To start on Phase 1, we have a short survey (see link below). Please share widely. The patient and family voice is critical to what we all do. Increasing the impact of PFAs will reinforce their value and enhance the benefit not only to the individual organizations but to the entire patient experience movement. By creating this network PFAs will have the opportunity to be influential partners in the improvement of the patient experience.

Complete and share our survey: https://www.surveymonkey.com/r/PFA_Community


The authors are members of The Beryl Institute Global Patient and Family Advisory Council and form the steering committee for the development of the Patient and Family Advisor Community.

Tags:  community  connection  global  inquiry  networking  patient and family advisor  patient and family advisory council  PFA 

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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":

AS A PARENT:
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.

AS A FAMILY ADVISOR:
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.

AS A FAMILY PARTNERSHIPS COORDINATOR:
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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