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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, please contact us at


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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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Lessons from a Patient Walking a Long Road of Care

Posted By Kimberly Arms Shirk, Tuesday, July 29, 2014
Updated: Thursday, July 24, 2014

Less than two-thousand volts of electricity can kill a human being on death row. Thirteen-thousand volts didn’t kill me. I’ve had a little experience in the hospital. In September of 1997 I began what was to become five years of rebuilding my life, everything from swallowing to talking and walking to writing. I was fully engaged with a hospital in the Midwest due to a severe electrical accident I suffered while at work as a television reporter. Fourth degree burns covered 12 percent of my body and the most severe injury came to my head, burned to the skull, and right side of my face as it hit the electrified live van that was to carry the story to viewers that night.

The journey was long but not without clear lessons, among which were filled with high expectations for the medical professionals that would care for me to this very day. Many of them were positive. I had a fantastically skilled plastic surgeon who happened to be on call in the emergency room the night I was brought in and walked every step of the journey with me. I had rehabilitation "coaches” that pushed me to work as hard as I physically could to return mobility to my damaged body. I was attended by a nursing staff that understood the long length of my recovery and appreciated both the physical battle I was waging as well as the emotional toll it took on both my family and me personally. I could gush about the many wonderful medical professionals that surrounded me and helped to bring me from the throes of death to a full recovery. But one story sticks with me as sure as if it was yesterday.

Dr. X, a referred specialty surgeon at another hospital, was set to tackle one of my last surgeries after a nearly five year journey full of 28 surgeries, multiple rehabilitation stints and a tiresome regiment of pain and pills. I entered this new hospital with trepidation, unsure about allowing my care to be transferred to a medical team unfamiliar with the road I had just walked, but confident, that if my chief surgeon Dr. A. referred him, I should go and at least talk to this guy. I entered the room to have a nurse try to sift through a myriad of medical records and summarize my needs in two brief sentences rather curtly. Then the surgeon walks into the room and says, "Why are you here?” Despite the fact that I had fully expected that he knew something about my case from the endless medical records that were sitting on the desk beside me, I might have understood his busy schedule and overlooked his terse attitude. But as I explained what I was looking for from him, after 28 surgeries, to do a final surgery to my eye, he looked me dead in my good eye and said, "I don’t care what I do for you, you will never look normal again.” Those words cut through me as surely as the electricity had just five years before, and shocked me into a reality I have not yet let go of.

Medical professionals, be they surgeons, nurses, lab technicians or anesthesiologists hold the weight of their degree, often to the detriment of some basic human principals. Frankly, after the medical experience I’ve survived, I care less about the acronyms following your name and announcing your pedigree. Those are a ticket to admission. What I care more about is the content of your character, your listening and problem solving skills. How much you value the relationship you will build with me as a patient, not a statistic. And your integrity when it comes to working with me to find a solution that works for both of us. Some medical professionals have these talents, some don’t. And believe me, I’m not shy about sharing either one. If health care institutions want to grow, I believe they need to weed out those who hold their degree solely as a throne to be admired and search strategically for those truly honoring the Hippocratic oath they took.

Kimberly Arms Shirk, a former television reporter/anchor, is an active advocate for patient care as she shares her remarkable story of survival and works on authoring a book about her experience, titled "Remote Fears and Silver Linings". Currently a writer/editor at Talent Plus, the Leading Talent Assessment Partner in the Industry, she focuses efforts on helping her company select and develop talented medical professionals.

Tags:  advocate  care  journey  patient  Patient Experience 

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Engaging Physicians to Improve the Patient Experience: A Few of My Life’s Lessons

Posted By Dr. Kenneth H. Cohn, Tuesday, June 24, 2014
Updated: Monday, June 23, 2014

Nikki, a weathered ED nurse, took me aside during my internship. "Just because that was your eighth patient with an ankle sprain this evening doesn’t mean it was her eighth ankle sprain.” My ears burned with indignation. How could people praise me for moving patients through the system and at the same time criticize me for not spending enough time with them? Now I salute Nikki and other nurses for believing that I was trainable.

The next step in my inadvertent journey to improve the patient experience came two years later when a lump in my neck proved to be a non-Hodgkin’s lymphoma. "It’s not fair,” one of my colleagues said. "You are a sensitive doctor. Why couldn’t this happen to some of the residents you work with who need to learn what it is like on the other side?” I felt that being a patient transforms a sensitive person into a sensitized person. I likened it to being a white male college professor who does research in race relations suddenly waking up and seeing that his skin has changed color. After that experience, it became easier for me to be in a room with an angry patient and family and say sincerely, "I can only imagine how upsetting this is for you,” and ask, "How can we work together to make your situation better?”

I witnessed the power of apology when I was asked to see a 20 year-old college student whose parents drove him from his college to the hospital where I was working after an ER doctor at an academic medical center dismissed his abdominal pain as alcoholic gastritis. After I went into the room, introduced myself, and said, "I’m sorry this has been such an ordeal for you,” I watched his parents’ shoulders drop several inches from the level of their ears. I operated on their son for appendicitis.

It wasn’t till I did a fellowship in surgical oncology that I learned that there is a time-tested framework for delivering bad news to patients. The SPIKES protocol consists of six steps, including:

  • Setting: respect privacy, involve others, be seated, look attentive and calm, listen actively, be available; let patient know of any time constraints ahead of time
  • Perception: ask patient’s and family’s viewpoint and concerns
  • Invitation: ask how much information patient wants to know
  • Knowledge: warn of upcoming news; give information in small chunks and clarify understanding at each step 
  • Empathy: acknowledge the patient’s and family’s emotion with phrases like, "I can only imagine how you must feel.”
  • Strategy: summarize events, check understanding, and plan for the future

That a surgeon like myself can learn from inadvertent experiences suggests to me that all physicians can benefit from training. I salute programs like the one where I trained (Columbia College of Physicians and Surgeons) that use actors to give medical students feedback about body language, tone of voice, and word choice. In general, physicians have done everything that we have asked of them. We:

  • Studied hard in college to get into medical school
  • Memorized and regurgitated facts the first two years of medical school
  • Worked 80-100 hours during residency and fellowship training

A physician CEO once told me, "We dismiss communication, negotiation, and conflict resolution as the soft skills, but they should be called the hard skills since they are so hard to do consistently and so hard to do well.” Physicians enjoy learning from fellow physicians. It can inspire all of us to be better role models in our daily practice.

Ken is a general surgeon/ MBA and CEO of Healthcare Collaboration, who works with healthcare organizations to engage doctors to improve the patient experience and organizational performance. To learn more about what he does, please visit Healthcare Collaboration.

Tags:  journey  knowledge  Patient Experience  perception  physicians 

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