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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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Top tags: patient experience  healthcare  communication  culture  patient  HCAHPS  Leadership  patient engagement  empathy  physician  survey  compassion  perception  physicians  technology  caregiver  community  data  employee engagement  family engagement  healing  Hospital  improving patient experience  collaboration  Consumerism  Expectations  interactions  patient and family engagement  pediatric  person-centered care 

Why the Patient Experience Matters to a Passionate Parent

Posted By Gail Gabby Katon, Thursday, May 7, 2015
Updated: Thursday, May 7, 2015

I am honored to have been chosen as a recipient of The Beryl Institute’s 2015 Patient Experience Conference Patient/Family Scholarship. As a mother of two chronically ill boys, I have spent six years as a parent at the bedside. I want to help other patients and their families have the best Patient Experience possible.

For someone looking for knowledge and inspiration, the annual conference was the place to be! Imagine 800 people coming together to participate (not just attend!) in conversations about improving the Patient Experience. We all had different perspectives, yet we are all on the same journey. What could be more motivating than finding 799 other people who want to work together to achieve the same goal?

The energy at the conference was stimulating and the drive to make a difference was contagious. I found it refreshing to find that in our industry, individuals don’t just have careers. Each has his or her own patient story and is on a mission to make something happen as a result of it. That is why I was there too.

Jack and Frank, our twin boys, were born with Pontocerebellar Hypoplasia Type II. It is a rare, genetic, neurodegenerative disease. Jack and Frank were born 10 weeks early and spent the first four months of their lives in the NICU. When our babies finally came home, our house became the Katon Infirmary. Jack and Frank started seeing many specialty physicians and had weekly physical and occupational therapy sessions. And of course, the twins spent more than their fair share of time in the Emergency Department and as inpatients too.

Our family has had good patient experiences and also bad ones. What frustrated me most was that the unpleasant incidents were for the most part avoidable! When I complained to the hospital, my comments fell on deaf ears. Then, it occurred to me that I should offer solutions instead. Once I did, they started listening! I soon joined the Patient Family Advisory Committee and helped in any way I could.

The inevitable happened, and my Frankie died at 23 months of age on February 6, 2010. Jack died four years later on June 2, 2014. How do I cope with the horrific loss of my beautiful, precious boys? I feel that something good MUST come from their short, yet so meaningful lives. Hence, I am committed to helping other families have the best hospital stay possible. It is what Jack and Frank would have wanted their Mommy to do.

Personal stories were shared at the conference too. Two of the most poignant presentations were those of the keynote speakers. Allison Massari taught us how compassion can heal wounds that medicine cannot touch. Regina Holliday told us about her husband’s heart wrenching story through her art. Today, his memory lives on as she works to improve the transparency of medical records and promotes patient engagement. Surprisingly, patient-centered still isn’t the standard of care in all hospitals.

I have learned so much from participating in Patient Experience Conference. My top four takaways were:

  1. Every hospital is set up differently. All aspects of culture such as cascading top down goals, transparency, employee engagement and accountability are interconnected and affect the patient experience.
  2. To improve physician engagement, offer doctors a tool to improve their HCAHPS scores. They want to improve the patient’s experience, but might not know now to do it.
  3. Patient Experience is becoming a priority for hospitals nationwide. More organizations are recruiting Chief PX Officers and growing the size of their support teams. Patient Family Advisory Councils are more valued as hospitals realize that the patient and family voices matter too. And finally, clinical outcomes have shown to be impacted by positive patient experiences.
  4. You matter. All voices matter. We ARE the patient experience!

Overall, The Beryl Institute’s PX2015 Conference was enlightening, motivating, and emotional. Participants were encouraged to meet each other, share best practices and discuss their own patient stories. I genuinely felt that everyone with whom I spoke shared my goal and wanted to help me succeed. Thank you to The Beryl Institute for making it possible for me to participate in such an extraordinary event!

Gail Gabby Katon is a Patient Family Advisor and currently completing a Patient Experience internship with a large healthcare system in Dallas. She is passionate about the Patient Experience and is preparing to become a Patient Experience Coach.

Tags:  family engagement  patient experience  Patient Experience Conference  pediatric  person-centered care 

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Transitioning from Hospital to Home: The Process is a Mess

Posted By Suzanne Steidl, Thursday, March 5, 2015
Updated: Thursday, March 5, 2015

For patients and families, remembering hospital experiences can be like remembering relationships —we recall the good and forget the awful. If the food was surprisingly good and the nursing staff was especially nice then it was a good experience; the bad is forgiven and forgotten or not acknowledged at all. Our experience surveys always arrived while I was in the throes of managing my mother’s illnesses and recoveries at home: I didn’t have time to do them and mostly forgot the details anyway. I had bigger fish to fry. So when I see a billboard declaring that a hospital is #1 in patient satisfaction, I have to wonder.

I’m emerging from six years of caring for my mother who was frightened into quadruple bypass surgery at age 82 despite the fact that her Parkinson’s disease was advanced. In addition to infection that required readmission, the surgery and recovery accelerated her Parkinson’s progression. Given encouragement and time to talk with her far-flung children before agreeing to immediate surgery, she may have thought about how she preferred to live out the rest of her life and decide against it. But she didn’t and she extended her life eight years, uprooting me from my home 1,000 miles away and challenging me to endlessly figure out, mostly on my own, "what do I do now”? I’ve experienced the continuum of care all the way to more than a year of corporate hospice care—I don’t recommend it—and getting zero information about alternatives to nursing home placement. My mother died in August, incapacitated and demented.

I don’t know what I don’t know so I depend on the experts to create processes and materials to help me make good decisions and to maneuver this often incredibly frustrating, difficult and potentially dangerous system.

My mother couldn’t function without her Parkinson’s meds and, until I wised up, they did not follow her from hospital to rehab. Early on, no one ever told me that there would be a medication gap so it became my job to remember to provide them. At discharge, everyone is given the same instructions regardless of our ability to retain information or foresight to take notes. For some, it takes courage to question or ask the discharge planner to slow down and clarify. Others are functionally illiterate. There’s an awful lot to organize. And who really has time or the will to read brochures when caregiving demands consume us? Not me.

Then there’s the home medical equipment. The guy who drives the delivery truck quickly explains how to operate the equipment. He’s always in a big hurry and doesn’t have printed material. Once, an oxygen concentrator was delivered and I was not instructed to fill it with distilled, not tap water or clean the filter. Filter? The alarm sounded the first night, I didn’t know why. I could go on.

I should know better. That I do not really troubles me. If I were an 80 year-old tending an antibiotic infusion pump at home, I don’t know what I’d do.

Maybe some facilities consider discharge planning and home care to be part of the patient experience that’s tracked and enhanced. That’s not my experience but I surely wish it were.

Suzanne Steidl is the founder of Your Daughter’s In Town: Health Advocacy for Elders. She is an advisory board member of the Healthcare Technology Safety Institute (HTSI) of the Association for the Advancement of Medical Instrumentation (AAMI) and is working to simplify DME Instructions for Use and streamline hospital to home processes. She is a member of The Beryl Institute.

Tags:  Continuum of Care  family engagement  Hospital  patient  patient experience 

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Where is the Patient in the Patient Experience?

Posted By Dorothy Sisneros, Thursday, January 8, 2015
Updated: Monday, January 5, 2015

I was watching the wonderful video by The Beryl Institute in which person after person says, "I am the patient experience.” I’ve watched this many times and each time, I feel touched and inspired. This video showcases the contribution and impact every one of us makes on patients and families.

The last time I watched, I surprised myself by having a very different response. If each of these staff members IS the patient experience, where is the PATIENT in the patient experience?

Where is the patient in the patient experience?

We might think we create the patient experience, but the patient’s preferences, goals and expectations need to drive the experience and they need to drive us to do our part in creating it. The main player and the key actor in the patient experience needs to be the patient.

How could I be the Patient Experience, when I am a constant, and every patient has a different experience? I might, for instance, have routines that I have carefully crafted to have a positive impact on each patient. I’m kidding myself if I think every patient experiences my routines the same way with a similar impact.

So, how can we include the patient in the patient experience?

By starting with the patient’s voice and ensuring that this voice guides us to personalize the experience so that it is appropriate, healing and gratifying for THIS patient NOW.

In my view, the one thing we should standardize is a process for amplifying the patient voice, so that we can personalize our part in the patient experience. The patient experience needs to be what we do WITH people, not FOR and TO them. And we need to invite the patient to be our coach to guide us through agenda-setting and the entire encounter.

Getting concrete, how would we do this?

  1. Invite the patient (and family) into the conversation immediately. Make them feel safe talking with you. "I’m here for YOU. I want to support your care and healing..." 
  2. At the start, set up the relationship as a partnership, unless the patient clearly does not want this or cannot participate. "I rely on you to tell me how you feel, what you want, and any concerns you have. I want to work together with you on your plan and then we’ll work that plan together. I see us as a team.”
  3. Ask open-ended questions and encourage multiple responses, so you can together prioritize the important few among the many. "What do you want to get out of today? And what else? And what else?” Then, "You said X, Y and Z. Tell me, which feels most important to you right now? I want us to be sure to address that!”
  4. Listen with rapt attention and respond with caring. Don’t interrupt.
  5. Show that you’ve listened by checking your understanding. "I want to be sure I understand. You feel... You want... You don’t want...”
  6. Ask yourself, knowing this about this person, how can I do my part in creating the best possible experience?
  7. Explain WHY you want to do or not do something for or with the patient before you do it. Make your intentions explicit, giving the patient the chance to say, "Yes, that works for me, or NO, that doesn’t work for me!”

Without the patient, we are not the patient experience. We have been invited to participate in the patient’s experience, not to own it.

Dorothy Sisneros is a respected healthcare leader inspiring others to achieve breakthroughs in leadership effectiveness and the patient, family and employee experience. As a Partner of Language of Caring, LLC, she has spearheaded effective implementations of the Language of Caring and breakthroughs in CAHPS scores with large health systems, hospitals and medical practices.

Tags:  family engagement  patient  Patient Experience  voice 

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The Double Helix

Posted By Suzanne Mintz, Monday, October 27, 2014
Updated: Monday, October 27, 2014

My husband Steven has MS and he has an alphabet soup of doctors to deal with the various other conditions the MS has spawned. Our primary doctor is in a family practice that is affiliated with an ACO. Some of the others are independent providers; others part of a large delivery system. Some we’ve known for many years, but others are quite new. Regardless of the differences we usually have good care experiences.

Since being a member of The Beryl Institute I have often tried to determine what it is that makes this so and I have decided that we have a lot to do with it, how we present during office visits; the fact that I am always present; that we are clear about why we’ve come or were told to come. I carry a notebook, refer to it and take notes. We try to establish a personal rapport, be succinct in our conversation and, at least with our family doctor, use the portal frequently.

Despite these good experiences, I am rather peeved that I don’t exist in a formal way in Steven’s records. There is no listing of my being Steven’s family caregiver, in addition to his next of kin; what my work as his caregiver actually entails; how long I’ve been actively providing physical care; what my other responsibilities are, how long I have been doing this work, etc. It does not seem to occur to anyone that if something happened to me it would impact the care that I provide to Steven; that we need to be viewed as a dyad and treated as such.

Last year I had an accident that made the need for this understanding perfectly clear. I fell down the stairs and I was unable to fully continue being Steven’s caregiver for more than a month.

The September issue of Health Affairs carries my "Narrative Matters" article that recounts the experience and explores the need for a new approach to chronic illness care, one that addresses functional and social needs as well as medical ones, an approach that includes a more active role for family caregivers on care teams, care plans that reflect patient and family goals, and treating patient and caregiver as a dyad, a single unit of care, because like a double helix we are intertwined. What affects one affects the other, and visa versa.

You can read, or listen to, the article here.

I act. I am active. These are direct. They are strong. The term 'patient activation' has gained prominence recently, but it is completely off the mark. Human beings can’t be activated; only robots, garage doors and military units. Check the dictionary. I did.

Rene Descarte said "I think therefore I am." In healthcare, I act. I provide information. I ask questions. I am, or should be the starting line, the center point of all that follows. Patients and family caregivers have always been the objects of healthcare, those whose wishes are often ignored; those to whom things are done. Now is our time to speak up, to act and to be part of the team. It is time for patients, families and providers to move beyond engagement. It is time for all of us to get married.

Suzanne Mintz is a thought leader, author, family caregiver and advocate. She is the founder of Family Caregiver Advocacy, a consultancy focused on improving care and quality of life for families living with multiple chronic conditions. She is the co-founder of the National Family Caregivers Association and was its CEO for 20 years . 

Tags:  caregiver  family engagement  patient  Patient Experience 

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Perspectives from the Invisible Husband

Posted By Emily D. Tisdale, Tuesday, November 19, 2013
Updated: Sunday, November 17, 2013

My husband did not care for my former obstetrician.

When we found out that we were pregnant with our first child, I scheduled get-acquainted visits and selected the doctor I liked. Over the course of my pregnancy, he accompanied me to appointments and we tackled the journey together.

The birth of our son was stressful to say the least. Going into labor three weeks early and enduring a long labor process that ultimately resulted in an emergency C-section left our emotions raw. But, life went on and we moved forward as new parents.

Fast forward four years later as we’re expecting our second child. As I talked about getting in touch with the doctor that delivered our son, my usually calm husband became wildly animated.

"Ohhhh no, we can’t go back to her. She was awful!”

What? I searched my memory for instances that would have led him to have such a negative reaction.

It’s like I was invisible,” he continued. "Of course, you and the baby are the most important part of all of this but she never even looked my way. I had to ask my questions as she was walking out the door!”

As I thought back through all of the appointments, I realized he was right. She never addressed him or asked if he had any questions or concerns during our appointments; she only focused on me. And while focusing on me (the patient) was good, including my husband (the family member) in the process would have been even better.

The patient experience has an impact on so many levels and is undoubtedly an important starting point. From the patient perspective, I thought everything was fine. However, when my husband brought up his concerns, I realized that healthcare experience – considering the needs of both the patient and their loved ones – must be what healthcare organizations consider as best practice.

As a new dad and my primary caretaker post-delivery, my husband had a number of questions and anxieties that he needed addressed. My doctor, as good as she was to me, failed to engage my husband in the process. How many times have other well-meaning providers delivered a good patient experience only to stop there? How much more could the experience be enhanced if loved ones were considered as an integral part of the equation?

The most successful healthcare organizations have initiatives in place to support not just the patient, but also the patient’s support network of family and friends. These touches, while often overlooked, can make a major impact on the patient’s peace of mind and overall experience.

Like other parents, we knew better the second time around on so many things. When we learned that we were expecting our second child, we made certain to select the doctor we felt would address both of our needs and ensure a true healthcare experience.

Emily D. Tisdale is the Founder & Principal Consultant of Recourse Resource Consulting, a healthcare experience firm based in Indianapolis, IN. Emily and her team partner with healthcare organizations to produce sustainable outcomes in patient experience, employee engagement, and marketing.

Tags:  experience  family engagement  healthcare  patient experience  physician 

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