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Lessons from the Lived Experience: What Your Vented Patients Would Ask if they Could

Posted By Tiffany Christensen, CPXP, Friday, March 27, 2020

As I watch the national news and talk to my friends working in hospitals, the two main themes are PPE (Personal Protection Equipment) and ventilators. I am not sure most citizens know what we mean when we talk about these things. As a CF/lung transplant patient, I know what it means to be on a ventilator because I’ve been on one for ten days out of my 46 years, and those ten days will never be forgotten.


As I think about the experience of COVID-19 patients who are going on ventilators surrounded by a global pandemic and without the support of the faces of those they love around the bed, I feel a deep tightening in my chest. I so desperately wish I could be at the bedside of each patient to calm them and to help the professionals who may or may not work with vented patients in the normal routine understand that lived experience.  I can’t do either one of those things. So, instead, I have connected with other patients who have been on a ventilator and compiled my experiences with theirs.


I hope this list can serve as a guide to all of the amazing healthcare professionals who are on the frontlines and would like some supportive insight about how to interact with patients on vents. The patient experience continues after the tube is placed and, hopefully, all the way through to discharge home. God speed to all.


What Your Vented Patients Would Ask if they Could:

  • Please narrate your care. My external body does not reflect my internal life. I am listening. I hear everything, even if I don’t fully understand it. Talk to me as if I were not on a vent.
  •  Give me updates on my health and orient me to time and place.
  • Kind words like "you're doing great" and "just rest and let your body heal" go a long way to alleviate anxiety and confusion.
  • I want my loved ones at my bedside to comfort me. Although you are here taking care of me, not having the faces of people I love around me makes me feel alone and (more than likely) scared. Can you please serve as surrogate family, even if for a quick minute? Find what is uniquely human about me and engage in a real human connection.
  • I need to communicate! Whenever possible, please give me a pen and paper, a dry erase board and a pen, or a visual board where I can point to emoticons and letters to communicate. Look into my eyes and help me feel heard even though I can’t speak.


If you remember nothing else, always talk TO vented patients, not AT them or NEAR them.

Thanks for listening.


Special thank you to Kara "Missy" Lyven and Beth Peters for contributing their lived experiences in support of this blog.



Tiffany Christensen, CPXP
Vice President, Experience Integration
The Beryl Institute

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Experience as Integrator

Posted By Tiffany Christensen, CPXP, Monday, March 9, 2020

The other day I went for an iron infusion, and because I have a history of anaphylaxis with iron, I am required to receive pre-meds of IV Solumedrol and Benadryl. Taking these two medications together feels like someone has strapped my body to an electric fence and then put a spell on me so that my limbs are too heavy to move. It takes a lot of mental concentration to ride the sensations. As I am in the treatment chair trying to deal with my emotional response to my challenging physical state, a flutist plops down in a chair a few feet in front of me and plays songs like "Pop Goes the Weasel" for an hour. High pitched flute sounds pulled me out of my meditation/sleep over and over, and it was PAINFUL. Literally, physically painful.


Nobody asked me or any of the other patients if we wanted to hear a flute play while we got our treatments. The flutist never looked at us to check in or to see how the music was being received. Because of my “magic spell” symptoms, I was not able to open my eyes or speak without distress. I chose to put in my earbuds and turn up Lady Gaga, but the piercing flute notes still woke me as they overrode the melodies being piped directly into my ears. I was not able to articulate my experience while it was happening, and I felt trapped.


So, does this mean we shouldn’t have flutists in treatment areas? No. Does this mean I should go out and buy noise-canceling headphones? No. Does this mean music therapy isn’t a good idea? Of course not. What this means is something quite simple: Never assume you know what will be helpful to patients or families. ALWAYS ASK.


I tell this story because it highlights an unfortunate reality in healthcare today: With as much progress as we have made in the field of Patient Experience in the last decade, we still greatly lack a necessary integration of concepts, systems and individual capacity for customizing care.


Integration is the next necessary frontier in healthcare today, and it must happen on multiple levels. In my flutist story, we witness a lack of system and individual integration. The system has built a music program that lacks integration with understanding the lived experiences of patients and families. The individuals caring for me that day lacked integrated knowledge about the medicine given to me and the possible effects of taking it. The experience showed me that there is an overall lack of integrating the core concepts of “nothing about me without me” within that organization. However, this is only one slice of what we mean by integration in a healthcare setting.


Integration requires the intentional overlap of safety and quality, with experience as the driver. Integration requires tools to capture and act upon the perspectives of patients and families and rigor to embed them in standard workflows consistently and in every corner of the organization. Integration requires an investment in helping staff and clinicians think beyond their area or expertise to a broader concept of care. At the point of care, we MUST begin to integrate clinical excellence with excellent engagement and communication. This all requires experience to become the North Star.


If my flute story makes you think I am not a music lover, that could not be further from the truth. I love music, especially jazz and swing. The other night I went to see a “big band” style swing band. There were about 20 musicians and three singers that entertained us with songs from the 1930s, 1940s and 1950s. Watching all of these people play their instruments, I thought about the collective years of practice and evolution of skill in that room. The human ability to find a passion for something and work at it until it is both extraordinary and second nature is fascinating to me. Seeing it in the context of a big band—a place where many people have this dedication to building skills over time AND doing so in harmony with others—felt to me like a metaphor for integration in healthcare.


In healthcare, every member of “the band” (healthcare team) is required to bring his/her own skill set to create music or, in this case, health outcomes. Equal to the importance of skill and expertise of the band is its ability to also align with the listeners and dancers (patients) receiving their music. If the audience is a partner in the design and production of music, the experience is richer, more meaningful and the room is still full at the end of the night. In a similar way, the goal in healthcare delivery must be a collective goal and, therefore, the effort must be an integrated one. If there is a sour note or if the band lacks harmony, the music turns painful and hard to hear.  When there is integration of sound, however, the music has the power to move mountains.


I know we all have the power to move mountains. All of the band members are here and accounted for. We have the skill, the training and the passion. We have engaged, educated and poised audience members. Now, all we need is new sheet music. Sheet music that focuses on integration of sound with experience as the leader of the band. Integration is here and it’s right around the corner; we just have to set the intention, plan well and be open to a new song. If we can do that, we will make powerful change.  


Tiffany Christensen, CPXP

Vice President, Experience Integration
The Beryl Institute

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How are YOU doing?: Uncovering the needs of those we serve

Posted By Michelle Garrison, CPXP, Tuesday, February 11, 2020
Updated: Monday, February 10, 2020

We want to thank everyone who participated and shared their comments and suggestions in our first annual Community Needs Assessment launched in December. Moving beyond our standard member survey questions asked in the past, we grounded the assessment in the opportunity to learn what you, our community, needs and wants and what really matters to you in your experience efforts. At the same time, we wanted to understand how well we are meeting these needs and where The Beryl Institute can improve to better support you in a more meaningful and impactful way.

The Consumer Needs Assessment asked these questions which helped identify key challenges and additional needed support:

  • How are you feeling about your experience efforts?
  • What resources do you need to raise your score?
  • What specific problems or opportunities are you trying to address?
  • How can the Institute best help you in addressing those needs?
  • Why is this community important to you?

How are you feeling about your experience efforts? What resources do you need to raise your score?

Two themes emerged from this question. First, we were pleased to learn that the majority of the community feels optimistic about their experience efforts. This indicates that the field of practice is developing in a positive direction. Second, some organizations expressed that their improvement efforts could be enhanced with additional resources that address raising scores and how to sustain current scores. Other suggestions for key resources necessary to improve experience efforts included defined organizational strategies, leadership support, staff buy-in, a focus on patient and family engagement, education and training, time and opportunity to execute on the work. What resources to you need to raise your score? Resources that were identified as essential to raising scores directly correspond to the Institute’s Experience Framework, which identifies eight strategic lenses through which any experience endeavor should be framed. In particular, the community expressed great interest in additional resources around culture and leadership, staff and provider engagement and patient and family engagement.

What specific problems or opportunities are you trying to address?

With the many perspectives across the continuum of care represented in the assessment, we saw a variety of challenges and opportunities being addressed. People are addressing the need to elevate what patient experience means not only for staff but also leadership and to raise awareness that patient experience is everyone’s job across the organization. Parallel to this was the opportunity to improve customer service and staff communication skills. Additional challenges spoke to addressing patient access and care coordination. There is also an awareness of the need to engage a broader range of voices, engaging patients and family members and integrating patients in all the work that is being done. Many people reported being in the process of solving challenges but needing to create strategies that promote staff accountability and sustainability.

How can the Institute best help you in addressing those needs?

With this question, we learned more about the value that you have found in our current resources including webinars, white papers, PX Connect community and events including Patient Experience Conference and also how we could improve on and expand the resources available. Recommendations included sharing more best practices, offering short key learnings, providing summaries or infographics for white papers and webinars, expanding the focus beyond hospital-based resources, local networking events and more opportunities for virtual connections. With the many resources available through the Institute, we recognize it can be a challenge to locate the resources you might need. One source that can assist you with getting connected to the tools you need to guide your experience efforts is the Experience Assessment.

Why is this community important to you?

As we reviewed the responses, we were humbled to read the comments about why people find the community important to them. Many of you shared how important the resources to support experience efforts are to you and expressed your appreciation for a community that reinforces the importance of experience in the overall healthcare conversation. The community finds value in making connections and learning in partnership with others who face similar challenges and developing solutions to address them.

As we look ahead, we are committed, inspired and excited to continue to provide a place for you to learn, network and engage, and you can look forward to our continued focus on providing and improving resources, learnings and engagement to support you, your organization and your community on your patient experience journey.

The work we do here at the Institute is possible due to this passionate and engaged community. We look forward to working with you and will share additional opportunities for engagement and sharing through volunteer opportunities, such as virtual focus groups, where we can gain your insights on exciting new projects and resources.

We thank you for your comments and suggestions. If you have any additional thoughts, feedback or stories to share, please don’t hesitate to contact us.


Michelle Garrison, CPXP
Vice President, Membership
The Beryl Institute

Tags:  accountability  community of practice  experience efforts  leadership  organizational strategies  patient family engagement 

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5 Ways to Accelerate Your 2020 Experience Efforts

Posted By Stacy Palmer, Tuesday, January 14, 2020

I recently stumbled upon a list of New Year’s jokes. My favorite asked, ‘What’s the first thing you’ll say in 2021?’ The answer made me chuckle, ‘Hindsight is 20/20.’ I thought it was clever and kind of cute, but it also made me reflect on what I hope my hindsight on 2020 will be. And when we look back at this year, what do we hope 2020’s hindsight for patient experience will be?

In 2019, we saw great strides in the patient experience movement as we introduced the Experience Ecosystem highlighting the resources, associated organizations and solution providers supporting each of the eight strategic lenses of the Experience Framework. Also in 2019, our biennial State of Patient Experience benchmarking study revealed that patient experience efforts continue to mature and remain established within healthcare organizations. We saw a growing recognition that the types of organizations we build are foundational as people globally reinforced culture is vital in achieving positive experience efforts. Overall, 2019 marked a shift to patient experience not being something healthcare does but being who healthcare is.

When we look back at 2020, what will we have learned and accomplished? I believe that as a community we have built a foundation on which global experience efforts will continue to accelerate. As you plan for the new year, I offer some suggestions that may help accelerate your 2020 efforts as well:

  1. Acknowledge your organization’s strengths and opportunities. If you have not yet participated in an Organizational Experience Assessment, I encourage you to do so. The process is grounded in the Experience Framework and built on global research identifying factors seen as critical to positive experience outcomes by both high performing healthcare units and consumers of healthcare. Your assessment will provide a comprehensive picture of the strengths and opportunities you have in your efforts to improve the patient experience. 
  2. Enhance your team’s foundation in patient experience. When building a culture of patient experience excellence, it is essential to establish a foundation where all team members clearly understand what patient experience is, what it means to them and how they can positively impact experience excellence. Consider a program such as PX 101, a community-inspired resource for use in orientation programs and other staff education that shares patient experience knowledge on the front lines of care to positively impact experience outcomes.
  3. Celebrate your team’s patient experience efforts. Rewarding and recognizing great work is also an important component of building a culture of experience excellence. And the new year is a great time to evaluate, enhance or reinvigorate your internal recognition programs. Also, start planning now for Patient Experience Week 2020, April 27 – May 1. Patient Experience Week is an annual event providing a focused time to celebrate accomplishments, create enthusiasm and honor the people who impact patient experience every day. 
  4. Expand your personal patient experience network. One of the greatest benefits cited by members of The Beryl Institute is the power of the community – the ability to network, share and learn with others passionate about improving experience. Set aside designated time to follow and contribute to conversations on PX Connect where members share their experience challenges and successes. You will make new connections, learn from peers and help others by sharing your knowledge and expertise.
  5. Commit to your continued learning and professional development. Make it a priority in 2020 to seek knowledge that will advance your skills and best prepare you to impact experience efforts in your organization. Take advantage of membership benefits such as webinars, topic calls and publications. For more extensive learning, consider the PX Body of Knowledge courses which offer certificate programs in Patient Experience Leadership and Patient Advocacy. Also consider joining the over 1,100 individuals who have achieved Certified Patient Experience Professional (CPXP) designation offered through our sister organization, Patient Experience Institute. CPXP Prep Course workshops are available through The Beryl Institute to help you prepare.

Our commitment at The Beryl Institute is to support and elevate your efforts by continuing to offer the most relevant research, resources and connections. As such, our greatest hope for 2020 is that you will discover all the ways that the Institute can help you tap into this valuable and helpful collection of leading resources to kick-start innovation and build excitement in the new year. You can start by exploring one or all of the five ways mentioned above to enhance your own professional path as a leader and to accelerate your patient experience efforts as an organization.

We have tremendous respect and gratitude for the work happening globally each day to elevate the human experience in healthcare, and we will continue to provide a place for you to share, learn and celebrate together this year and into the future
When we get to 2021, we hope you will be proud of, and inspired by, the progress you accomplished this year. After all, hindsight will indeed be 20/20.


Stacy Palmer, CPXP
Senior Vice President & COO
The Beryl Institute

Tags:  celebration  choice  commitment  community of practice  culture  ecosystem  excellence  Field of Patient Experience  global healthcare  healthcare  improving patient experience  Leadership  member value  partnership  patient advocacy  patient advocate  Patient Experience  patient experience community  patient experience leadership  state of patient experience  team 

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From "How are WE doing?" to "How are YOU doing?": A New Perspective for Experience Measurement

Posted By Jason Wolf, Sunday, December 15, 2019
Updated: Sunday, December 15, 2019

In our first December blog in 2010 as we launched The Beryl Institute as a global community, I shared a quote from Maya Angelou. It read:

"There is no greater burden than carrying an untold story."

That idea has been essential to our journey at the Institute and a seed of the evolution of the experience movement itself. Every patient, family member or caregiver we serve in healthcare, every individual who wakes up each day to work in healthcare and every person who is impacted in the communities we serve in healthcare ALL have a story to share. This idea, this reality, is universal. We all have untold stories inside us to share.

I believe we have together pushed the conversation in healthcare to see people we care for not simply as a room number or a diagnosis on a chart, but as human beings with needs and wants, hopes and dreams, all rooted in their own story. At the same time, from the lenses of those that experience healthcare, we have heard loud and clear, and have seen reinforced in data from our own research, that the number one request from their healthcare experience is “listen to me”.1  When we take a moment to listen to those we serve in healthcare and those who serve in healthcare, we reveal a rich and powerful tapestry of our very humanity. When we create the space for stories to be told and ensure needs and desires are revealed, we create new and more powerful paths on which we can impact the human experience overall.

It was this realization that sparked a powerful idea at the heart of Michael Barry and Susan Edgman Levitan’s piece in The New England Journal of Medicine on shared decision making.2 In their perspective, they offered we must move from simply engaging people on “What is the matter?” to “What matters to you?” as an essential element of providing the best quality care. That very question “what matters” begins to crack open the doors hiding the untold stories people carry. It could be about the fears they personally carry, about the family they love and are worried they might leave behind, about the way a room is lit, to the name they are called. These are all driven by the stories of our lives as human beings.

And as I have long suggested, in healthcare we are simply human beings caring for human beings and therefore must acknowledge that these realities for people, whether revealed by asking or left hidden, will have an impact on how people are cared for and ultimately the outcomes they achieve. Simply stated, we cannot take the human out of healthcare, and so healthcare is ultimately built upon and must act within a patchwork of human experiences in our desire to provide safe, quality, reliable, consistent, service-focused and accessible care.

But there is also more to the story, for as “what matters to you” has grown into a global movement grounded in the clinical encounter of healthcare, the conversation on human experience in healthcare pushes us to move even farther. As the global community of practice committed to elevating the human experience in healthcare, we realized at The Beryl Institute that the idea of measuring experience itself could and must be informed by this very idea. When we look at the traditional way in which we have asked for feedback in healthcare or in most industries for that matter, we have tended to ask “How are WE doing?”. Questions we pose to our patients, our customers or our consumers are asking them to tell us about us. But where in these inquiries do we ask about them and their needs? Where do we take the step to help them reveal their untold story and better understand how we can help them in addressing those needs?

That very question had us think about the powerful opportunity to ask less about “How are WE doing?” to more about “How are YOU doing?”. Have you felt that spark in a conversation when someone asks you that question? It is an opening, an opportunity, an appreciation that you have a thought, an idea, a need, and yes, a story to tell.

When we flip the question to “How are you doing?”, we can then uncover what people need, what they want and what matters to them more broadly. And in doing so, we can also ask about our ability as healthcare organizations to meet those needs. When we ask “How are you doing?”, we invite a different perspective on how people see things, as Gerteis, Edgman-Levitan, Daley and Delblanco wrote in 1993,3 “through their eyes.” That is the opportunity we believe we have in measuring experience overall, and, yes, we believe in understanding your needs in The Beryl Institute’s global community as well.

The opportunity is now to find ways in which we ask others to rate us not only on how we did for them or if they would recommend us, to more directly what they need as our patients, customers and consumers and how well we met those needs. How will you ask those questions in your own organizations to uncover and address the needs of those you serve? What steps can and will we take to uncover the untold story?

At the Institute, we believe we can do this by flipping the question today as we engage the over 50,000 people in our community and beyond in a new type of inquiry. We will now ask “How are YOU doing?” and based on your answer, we will also inquire “What do you need from us?”. Finally, we will ask what we are doing and what we can do better to help meet those needs. It comes back to the idea that when we ask people about ourselves, it becomes about us; but when we ask others about themselves, it becomes about them. It is about their story and the insights shared, and it actually provides a more powerful window into what we can all be doing to support one another in what we do, what we offer, and how we work together.

It is not an easy switch for organizations to move from asking people ”How are WE doing?” to “How are YOU doing?”. While it is reaffirming and helpful, I think we can agree the first question  is limited and may miss the biggest opportunity of all. When we ask people “How are YOU doing?” there is acknowledgement for the un-acknowledged, there is space for discovery and there is the opportunity for connection and for the ability to meeting one another where we stand as human beings in healthcare and beyond.

In a world where the concerns of human discourse have turned sour across the continents and distance has been created between people versus bridges being built, we must accept this is our current reality. Perhaps in our willingness to ask others about themselves, we can begin to tighten the seams of humanity once again. When we each in our own way try to express our interest in others, and when we change the way in how we ask about the experiences of others, we all take one step closer to the power of the human experience that we look to foster every day in healthcare. We each can help catalyze this type of connection. My ask of all of us is that we work to do so. Our hope here at the Institute is to change how we ask you, our community, about your needs and to help start this subtle but significant shift. To that effort, we invite each of you to take a few minutes in the coming days via our inquiry to tell us how YOU are doing.

There IS no greater burden than an untold story. And there is NO greater means to connect and to better serve by working to share those stories. Here is to all the stories we will both share and create together in this new year and beyond.

Jason A. Wolf, PhD, CPXP

President & CEO
The Beryl Institute


1.     Wolf JA. Consumer Perspectives on Patient Experience 2018. The Beryl Institute; 2018.

2.     Barry MJ, Edgman-Levitan S. Shared Decision Making — The Pinnacle of Patient-Centered Care. New England Journal of Medicine. 2012;366(9):780-781. doi:10.1056/nejmp1109283.

3.     Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the patient’s eyes. San Francisco: Jossey-Bass, 1993.

Tags:  accountability  body of knowledge  collaboration  community  community of practice  Continuum of Care  engagement  Field of Patient Experience  global healthcare  Human Experience  improving patient experience  Interactions  Leadership  patient  patient engagement  Patient Experience  patient experience community  thought leadership  voice 

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It Takes a Village to Ensure Experience Excellence

Posted By Stacy Palmer, CPXP, Monday, November 18, 2019

The well-cited African proverb “It takes a village to raise a child” reinforces that an entire community of people must interact with children for those children to experience and grow in a safe and healthy environment. The villagers look out for children.

As a parent, I can’t agree with that more, and when I look back at my own childhood, I am reminded of the many people who encouraged and protected me – from teachers, neighbors and extended family to the nice sales clerk who helped me find my mom when I wandered off at Sears. It does take a village to raise a child.

It’s fair to say the village idea applies to most things in life and, as I am often reminded, that includes the patient experience. One of our earliest and most beloved videos at The Beryl Institute captured healthcare workers in many areas within a hospital environment – from medical labs, environmental services and radiology to admissions, pharmacy, spiritual care, volunteer services and more. After showing people in those areas performing parts of their work, the video came back to show each holding a sign with the hand-written message, ‘I am the Patient Experience.’

I believe the reason the video resonates with so many of us is that it reinforces we all contribute to delivering exceptional experiences. Every individual within the village of our healthcare organizations has the opportunity to help shape the experiences of patients and families. At the Institute, we love that healthcare organizations around the world have replicated the video with their own teams and use those videos to inspire, thank and connect with their staff and communities.

The African proverb can also be extended to the village that is our patient experience community at The Beryl Institute. In the nine years since we launched as a membership organization, thousands (literally, thousands) of you have committed time, energy and insights to help build this organization. It’s through the contributions of the village that the Institute has grown into the largest, independent community that builds the capacity of organizations to elevate the human experience in healthcare and develops individuals who impact experience excellence. 

As a small organization (currently we have eleven full time team members), we rely greatly on the contributions of the community. We’re thankful to have volunteers consistently step up to share case studies, write guest blogs, and present webinars, topic calls or conference sessions. Over 80 organizations have invited us into their spaces to learn about their patient experience journeys and share the findings through our On the Road series, and dozens have opened their doors to host regional roundtable or Pop-up events. Over 400 individuals contributed to the Patient Experience Body of Knowledge.

In addition to content collaboration and events, our community steps up often to provide insights on new programs and processes through virtual focus groups or project teams. Members of our Nurse Executive, Pediatric and Physician Councils and Patient Advocacy Community help ensure our resources remain relevant to members in their specific areas. Over 70 individuals volunteer to advise us regularly through our various boards including the PX Advisory Board, Solutions Advisory Board, Global Patient and Family Advisory Board and Strategic Advisory Board. It takes a village.

As The Beryl Institute continues to help build, support and expand the Patient Experience movement, the needs and opportunities for community involvement will increase. Currently we are recruiting member volunteers to evaluate the 2020 PX Innovation nominations, join virtual focus groups to share insights on exciting new research projects and contribute thought leadership through our guest blog. We’re also accepting applications for members to join our PX Advisory Board which helps ensure we maintain a focus on the topics of greatest importance to healthcare leaders and have a finger on the pulse of the critical issues influencing patient experience efforts.

I encourage all members of the Institute to consider opportunities to lead and contribute. In doing so, you will not only impact the evolution of this critical field, you will also become further engaged in a community of individuals and organizations passionate about providing the best healthcare experiences for patients and families, those who work in healthcare and the communities they serve. After all, it takes a village.


Stacy Palmer, CPXP
Senior Vice President & COO
The Beryl Institute

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An Orientation to Experience

Posted By Tiffany Christensen, CPXP, Monday, October 14, 2019

Some people will look at this picture and see a duck. Some will see a rabbit. The trick is that both are correct. The difference is how you are oriented to the picture. This is exactly the same in healthcare; we must always ask ourselves “How am I oriented?” (The duck-rabbit drawing was first used by American psychologist Joseph Jastrow in 1899)

At every moment of every healthcare interaction, there are two orientations at work: one of operationalizing experience and one of the personal experience of health/healthcare. Being oriented to operationalizing experience means you are thinking about things like whether or not:

  • The patient is being listened to by those caring for them and the organization as a whole
  • The patient/family is being spoken to in a way they can understand
  • The patient/family can easily find their way around the facility

Being oriented to the personal experience of health/healthcare may sound something like this:

  • “I am so tired and that walk from the parking lot was long. Will I have the energy after this appointment to make it back to my car?”
  • “What is that pain in my side? That wasn’t there yesterday. What does that mean? Is it worth mentioning it?”
  • “My dog is home alone. If they don’t finish tis appointment soon, I will need to just walk out.”

At some points along the way, these orientations compliment one another while, at other times, these dynamics appear to be completely discordant. The reality is that, either way, these dynamics can and MUST coexist. It is up to the healthcare professional to remain aware of how they are oriented—to operationalizing or to the personal experience--because both of these orientations are always present and are always appropriate.

To this end, The Beryl Institute is happy to share an extended version of The Experience Framework. The framework was built with the primary intention to help organize the areas of focus in examining and designing experience efforts. This, of course, is oriented to operationalizing experience.

The Beryl Institute’s Global Patient and Family Advisory Council has taken this framework and added the “personal experience of healthcare” orientation. We are excited to share this work as a companion to the “why” statements associated with The Experience Framework:


This is a great example of how ensuring any experience effort includes the sightline of those receiving care can provide balance and deeper meaning. When we orient ourselves to only one perspective, the rabbit or the duck, if you will, we may find ourselves missing out on meaningful perspectives that we need to inform and guide both organizations and individual interactions. We are so grateful to our Global Patient and Family Advisory Board for months of hard work that led to these illuminating statements regarding how each lens is EXPERIENCED by those receiving care.

We look forward to hearing from our community how they utilize this personal experience perceptive when operationalizing experience efforts! And, the next time you are working with a patient or designing the next experience/safety/quality improvement, ask yourself “how am I oriented?”


Tiffany Christensen, CPXP
Vice President, Experience Innovation
The Beryl Institute

Tags:  experience  global patient family advisory council  healthcare  orient 

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The State of Patient Experience 2019: Reflections and Four Considerations for Action

Posted By Jason A. Wolf, PhD, CPXP, Tuesday, September 10, 2019

Nine years ago this month in the Patient Experience Blog from The Beryl Institute, we introduced the definition of patient experience.

The sum of all interactions, shaped by an organization’s culture,
that influence patient perceptions across the continuum of care.

Those words remain true to this day and essential to all we have done to address the healthcare experience. As I offered then, “We will use this definition as a guide for how we build resources for our members. It will also serve as the standard for how we support and advocate for the creation of a positive patient experience across all healthcare organizations.”

This commitment and all it represents has guided the moments, months and years since that time; a time filled by the contributions, sharing and collaboration of thousands of people around the world, from across the healthcare spectrum and on both sides of the care experience, who have come together to elevate the human experience in healthcare.

This generosity of spirit has served as the fuel for the effort to do just what we aspired to do in 2010: to support and advocate for a positive experience for all across healthcare. It also serves now as the foundation for the continued exploration of what drives excellence in this work. The pursuit of exceptional experiences for all in healthcare – that is, ensuring safe, quality, reliable, service-oriented, cost effective, accessible, equitable and ultimately human care – now has taken its place at the strategic heart of healthcare itself.

This was reinforced in our latest exploration of the state of patient experience. In the fifth iteration of this study, The State of Patient Experience 2019: A Call to Action for the Future of Human Experience, we have seen trends revealed and opportunities elevated. While this piece is not intended to recap every finding (you can read about those in the full research report) it is important that we come back to where we started nine years ago in introducing the definition of patient experience itself.

Much of what we see today is rooted in the very ideas shared in September 2010 when we offered that a critical intention of the definition of patient experience was, “that we first must acknowledge that there is some "thing” called the patient experience we need to both recognize and address.” This “thing” as we knew then is even more essential to what healthcare is ultimately about. Experience is not a small part of healthcare, but rather it is woven into the very fabric of what healthcare is and continues to become. The results found in this year’s study underline that point.

So, in our intention to move to a future of healthcare grounded in experience, we are called to recognize and act on a few fundamentals. Many have been central to our focus at the Institute from the very beginning. Some we have discovered from our community as we have worked together to improve the patient experience and elevate the human experience in healthcare. With this I offer four essential considerations for action:

  1. Patient experience is not something healthcare does, it is who healthcare is. It is when experience is simply seen as a thing to do, a box to check in a complex healthcare world, that its possibility is immediately weakened. Experience happens regardless of plan or process. It is who a healthcare organization is and how it is perceived by others. It is incumbent on all in healthcare to build organizations that realize that every action, every encounter and every interaction create an experience for all involved.
  2. Patient experience is driven by all we do and, therefore, every effort must be approached with an integrated view of how it will impact the overall experience we provide. This is the essence of the experience framework itself. It is in understanding that all the elements it includes, the eight strategic lenses, while often operated distinctly in healthcare, must be seen as one integrated set of actions in ensuring an aligned and effective effort to drive experience and the outcomes we look to achieve.
  3. To succeed externally, we must focus internally. The idea that culture matters or that how we treat those who work in an organization will impact the experience of those it serves is not new.  The state of patient experience data from 2015 to today reveal a rapidly growing awareness of communication and employee engagement as the primary path to experience success. If organizations are not willing to work on themselves first, they will never ultimately achieve the experience success they seek.
  4. A commitment to experience will not (and must not) ever end. One of the greatest issues raised by healthcare organizations is that of sustaining success with their experience efforts. This raises an opportunity for all to consider. Experience excellence is not simply something to be achieved. That idea presents a false consideration as it suggests experience has been accomplished and your efforts done. But the need to ensure the best in experience never truly ends. It is about a relentless pursuit of excellence, about consistent delivery of intent and an unwavering commitment to the human experience at the heart of healthcare that will lead to the outcomes we all aspire to achieve.

These considerations offer a clear and solid footing on which organizations can build as they strive to ensure the best experience for all they engage. I have long shared that if we do not set the proper foundation for our organizations in healthcare, all the strategies, processes and tactics live on unstable ground at best, and therefore outcomes – and more so sustained outcomes – are at risk from the start. Yet, what the State of Patient Experience 2019 has revealed and has reinforced in what we found in both our exploration of Consumer Perspectives on Patient Experience and Influence Factors on Patient Experience last year, is that healthcare is moving toward a more comprehensive view of what experience is and recognizing the breadth of efforts aligned to realizing experience success.

From those insights and the reflections of our participants in this year’s study, it is safe to say patient experience is perhaps at the most exciting moment in its arc of life. From its elevation as a concept in definition nine years ago, through the shared journey of so many in the time since, experience as a concept and a movement finds itself at the start of a new era. The healthcare experience will now be driven by what consumers of care seek and will be grounded in an accessibility of knowledge by those consumers that is already shifting the fundamental power dynamics. If we only continue to address experience as something that happens when care is delivered, we too will fall short of what is needed and may very well miss where the market is going. This is where the work of the experience community must continue to evolve.

In understanding what healthcare encounters will look like now and into the future, the ideas and elements that influence those experiences will be vital to consumer choice, system viability and the health of our communities and populations served. Yet in the end so much of it will come back down to the simple ideas where we started nine years ago, that experience is truly the sum of all interactions that occur in healthcare, and those interactions are shaped by the culture of the organizations that offer them.

The future of patient experience is inspiring. The elevation of the human experience unquestionable. Now we must focus on nourishing our strong roots and feeding our big visions. That is what those who seek care every day will be looking for and those truly committed to what healthcare can be will expect to deliver every day.


Click here to download your complimentary copy of The State of Patient Experience 2019: A Call to Action for the Future of Human Experience.

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My Rearview Mirror: Reflections from a Former Patient Advocate

Posted By Tiffany Christensen, CPXP, Thursday, August 15, 2019
Updated: Tuesday, August 20, 2019

I became a patient advocate for a major medical center after my second double lung transplant (first for cystic fibrosis and second due to chronic rejection) and quickly learned that I was quite naïve about the job I had just accepted. In the three years I worked with CMS Guidelines to resolve complaints and grievances, I went home many nights crying, gritted my teeth all night long and woke up every Monday with a “new plan” to make this job into what I had hoped it would be. I wanted to help people, I wanted to be what the title said I was; “advocate.” Instead, I felt like my days were spent getting yelled at about things I could not really fix while emotionally fighting to stay above water in a sea of conflict. 

In the past month, The Beryl Institute has dropped a new podcast featuring four patient advocates and a White Paper exploring the role and all of its many sides. Both of these resources brought up a lot of memories for me and I took some time to reflect on what I experienced nine years ago. What I found was a hearty serving of regret. The crying, the teeth grinding and all of the other manifestations of my stress did not have to be so intense; perhaps they did not have to exist at all. My biggest regret? Not being able to manage my own thoughts and recognize that the patients were not stressing me out but, rather, I was stressing myself out. Perhaps a few examples would be best to illustrate what I mean.

What happened:

She knocked on my office door and I opened it to find an agitated and slightly frantic woman who began talking immediately, making it impossible for me to even invite her in. We stood in the doorway as she told me that her husband was being moved out of the ICU to the step-down unit after a heart transplant and she did not want him to move because the ICU was a much nicer environment than the main hospital.

What I thought:

“Well, of course the ICU is a nicer facility…it’s brand new and the step-down unit is in a building built in the 1980’s! Doesn’t she understand that staying in the ICU means her husband is sicker and moving to step-down means he’s getting well? That’s a good thing! Doesn’t she see that if her husband stays in ICU when he doesn’t need it, he’s keeping someone who is very sick from being in the bed they need? She should better understand the system and she should know that keeping her husband in ICU is just not an option.”

Looking Back:

Reflecting back on this interaction and so many others, I regret thinking this way. Not only because I was very far away from “meeting people where they are” but because these thoughts actually caused me stress. If I am being honest, I had thoughts like these about most of my interactions during the day. If we pile these thoughts on top of each other we have a day filled with frustration and a sense of always swimming upstream. I now know that there is a way to adjust my thinking so that I no longer cause myself stress AND I am more effective in these types of interactions.

Often, I carry a belief or judgement with me that I am not even fully aware of. In the example above, one of those beliefs might be, “Patients and families need to understand the system.” In this case, this would mean understanding that patients in ICU need to be a certain level of acuity to be in the ICU. When I believe the thought that this woman in my doorway should know this already, I feel frustrated with her assertion her husband should stay in the ICU. Internally, my chest clenches and I feel a little hot. I am impatient as she talks and am ready with my response of why “this is a good thing” and, before she is done speaking, I interrupt her. She does not feel heard and now the rapport is breaking down and I walk away frustrated that I have to talk with someone who is unreasonable. 

It didn’t need to be this way. The problem was not her request. The problem was my belief that she should understand the system. It’s my internal, unconscious belief that caused me to be irritated, not her. It was my internal, unconscious belief that made me impatient and took our conversation in a negative direction when it could have been one of support and encouragement. We could have ended in a place of celebration because her husband was leaving the ICU. 

So, why am I now looking in my rearview mirror and thinking I could have done things differently? Because now I have some tools to help me identify my stressful thoughts and turn them around. There are many ways to do this but, in this example, I want to use “The Work of Byron Katie” to see how this interaction might have played out differently.

Patient’s wife: “My husband is being moved out of the ICU after his heart transplant. I do not want him to move because the ICU is a much nicer environment than the main hospital!”

My internal thought/reaction: This woman doesn’t understand how healthcare works—of course her husband can’t stay in ICU! Other people need those beds and leaving the ICU means he is getting better so she should be happy about that!

I could pick multiple thoughts to inspect here: “she should be happy,” “she should understand how healthcare works” and “other people need those beds more than him” are all reactions that would benefit from exploring so we’ll just pick “she should be happy” and do a modified version of “The Work”:


“She should be happy”: Is that true?

Yes! Her husband is getting better!


“She should be happy”: Can I really know that that’s true?

Well, no, maybe there are too many other things/worries going on for her to be happy about this


How do I react, how do I behave, when I think this thought “she should be happy”?

I am frustrated with her for not being happy! I speak in short sentences and think about other people who have it worse, who are not getting better. I try to hurry her up so we can wrap up the conversation because I want to get on to helping others who are having a harder time than her husband.


Who would I be in that moment if I was incapable of thinking the thought “she should be happy”?

I would just be a person who is listening. I might be happy for her husband, even if she’s not able to see yet that leaving ICU is a good thing. I would be interested in her perspective and I would want to know more about why she prefers the ICU over the main hospital. Her concerns would be most important to me in that moment.


Can you see any non-stressful reason to keep the thought, “she should be happy”?

No. My irritation doesn’t serve anyone and, the truth is, whether she is happy or not is none of my business.


In healthcare, it is very easy to get into a cloud of irritation. It is such a stressful place to work that sometimes finding flaws in those we serve or those we work beside becomes a habit and we don’t even realize it. Sometimes, we work to be “less judgmental” in order to be a better person but we fail to notice that these kinds of thoughts hurt us first and those we interact with second. For me, realizing that I am in charge of my own stress just by noticing and inspecting my own thoughts is such a relief. The world isn’t happening TO me, I am responsible for how I see it.

I regret that I did not have these tools when I was a patient advocate. It’s my hope that sharing this might help someone who is currently working in healthcare see that there is a way out of this kind of internal stressor and give it a try. As you go about your day, notice your thoughts: 

“Patients should be nice to the people who are trying to help them”

“My boss should understand how much stress I am feeling and not give me more work”

“My colleagues should apologize when they are late”

As you notice these thoughts, remember to ask yourself the questions when you have a moment:

  1. Is it true?
  2. Can I really know that it’s true?
  3. How do I react, how do I behave, when I think this thought?
  4. Who would I be in that moment if I was incapable of thinking the thought?
  5. Can you see any non-stressful reason to keep the thought?

Thank you to all of the patient advocates who are able to remain caring and grounded in a very challenging role. Thank you to everyone who works in healthcare and is able to be understanding and forgiving towards patients, families, staff and clinicians. Whether or not you choose to use this model of personal inquiry, I hope you are able to find peace within yourself during even the most frustrating or chaotic moments in your professional life. Patients matter and those who serve them matter too. Care for your own heart and it will then naturally care for patients.


Tiffany Christensen, CPXP
Vice President, Experience Innovation
The Beryl Institute

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Doing a Happy Dance for Fewer Emails

Posted By Stacy Palmer, Tuesday, July 16, 2019
Updated: Tuesday, July 16, 2019

We send a lot of emails.  Those on our mailing list will likely agree. 


To be transparent, we’ve struggled with balancing our communications over the years. We have so much great information to share from the generous contributions of our members, and we’ve worked hard to ensure no one misses something that might support their patient experience efforts. But, at times our members have shared that the frequency of emails can be overwhelming. 


Earlier this year we brought on a new marketing manager. Emily is a polished communicator with great energy and fresh perspective. Within a few weeks she came to our team with a bold idea, “Let’s only send ONE email per week.” At first we gasped, as it seemed such a departure from our typical approach. But the more we listened to Emily’s reasoning, the more excited we became.


She reinforced the opportunity to make things easier for busy healthcare professionals, to consolidate our content and to create a publication that our community could anticipate arriving in their inbox on the same day at the same time each week. She believed there could be calm and rhythm in the predictability of a newsletter received in a concentrated format. 


In healthcare, we emphasize the need to listen to those we serve. Recognizing the opportunity to heed those words and put them into action at the Institute, we looked to our community for feedback.  First, we introduced the weekly email idea to our boards and councils. With their incredibly positive response, we then conducted four virtual focus groups. (Note: if you haven’t signed up to participate on our Virtual Focus Groups, I encourage you to do so!) 


The focus groups were unanimously in favor of the transition. In fact, two different members on two separate focus groups exclaimed they were doing a ‘happy dance’ at their desks as Emily shared the idea. They appreciated our understanding of their professional challenges, the intention to streamline content and the opportunity to contribute feedback to the process.


So, today, in an effort to consolidate and improve our communications, we are excited to introduce PX Weekly…your Patient Experience newsletter.


You will still receive all the resources and information you’ve come to expect from the Institute, just in a consolidated, weekly publication. While that means emails will be longer, we’ve designed PX Weekly to be consistent and clean with simple icons to help you quickly find your favorite features such as event calendars, podcasts, learning bites or blogs.


There will be occasions in which you receive additional emails from the Institute, but we will limit those to special announcements such as new issues of Patient Experience Journal, new white paper releases and event-specific communications for Patient Experience Conference or PX Pop-ups.  


Take a look at the first issue. We would love to hear your thoughts. We welcome any suggestions on how we can improve the newsletter to best support your efforts to positively impact the healthcare experience for patients, families and those providing care. 


We’re working hard to support your needs and hope this change will help keep you engaged, informed and better prepared to do the important work you do. (And maybe even inspired to do a little happy dance!)



Stacy Palmer, CPXP

Senior Vice President and COO

The Beryl Institute


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