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Why the Patient Experience Matters to a Passionate Parent

Posted By Gail Gabby Katon, Thursday, May 07, 2015
Updated: Thursday, May 07, 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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