Three Dimensions of Patient Experience

By Tiffany Christensen, CPXP

As a person who lives with chronic illness, I spend a lot of time thinking about how we define and improve patient experience. Improvement science tells us we cannot improve what we don’t define. By this standard, understanding how we define PX is as important as the tactics we use to improve it. The Beryl Institute’s definition of patient experience, “The sum of all interactions, influenced by an organization’s culture, that influence patient perceptions across the continuum of care,” is one of the most widely used or adapted definitions around the world.  

The definition may be one of the best ways to begin thinking about patient experience, but we must always be exploring the many sides of patient experience. A great example is the recent launch of https://transformhx.org/, a Declaration for Human Experience that many in our community have publicly signed and committed to. (If you haven’t signed it, please consider joining us!) It is gratifying and exciting to see how the field of patient experience has evolved over the last decade from the definition’s introduction to the current declaration to transform healthcare. This is representative that patient experience is quite multi-dimensional.

As experience professionals, we know patient experience is a field of knowledge, practices and concepts; however, this only reflects some of the dimensions. I want to ask a question that might seem obvious but is sometimes forgotten: What is patient experience for those receiving care? I know this idea can sometimes get lost for experience professionals as they immerse themselves in their work. Despite my extensive background as a patient, I have managed to lose sight of this important dimension of experience myself when working as a patient advocate and while on the frontlines of patient experience. 

So, what are the dimensions of patient experience for those in the bed, on the gurney or on the exam table? As I write this blog from my dialysis chair with 47 years’ experience as a patient, I share with you here three dimensions to consider and ask they not be forgotten for those we serve:

First Dimension: The physical and intensely personal experience of changing symptoms and/or pain that can take all of an individual’s attention.

For those experiencing the physical dimensions of patient experience, it is not uncommon to be asked to do things that are difficult or impossible to do. For example, after my kidneys failed, I experienced two days of extreme nausea to the point it was a great discomfort and effort to speak. Out of all the encounters I had with staff and clinicians in those two days, only one physician thought to ask me to respond by nodding my head or giving the “thumbs up” or “thumbs down.” All my other encounters were with people asking me to respond verbally and, in many cases, becoming visibly annoyed with my reluctance.

Second Dimension: The emotional and psychological responses to the physical symptoms that have meaning in/for a person’s life. 

For those experiencing the emotional dimensions of illness or injury, it can be all-consuming. The worry that comes with wondering if it will be necessary to quit work, move or go through pain and suffering may be more important to a patient than call-bell wait times or even physician communication. When worry and fear take over, this may be why a patient shuts down, has trouble remembering things or has unusual changes in behavior. 

Third Dimension: The tasks or required actions of the individual, such as making appointments, getting prescriptions, changing plans or traveling to see a variety of specialists.

The tasks that come with being a patient grow as a person’s condition becomes more complicated. Often patients say that being a patient is like “a full-time job.” To understand the dimensions of patient experience is to understand that these tasks can be time-consuming, overwhelming and extremely irritating. (Have you ever made your way through a phone tree only to lose connection after an hour?) These are the “lived experiences” of being a patient that most staff and clinicians never get to see but are a big part of what it means to care for oneself. 

We work so hard in healthcare to accomplish the clinical or strategic goals we set for ourselves that we can sometimes forget that healthcare was designed for the sick. When you are a patient coping with physical, psychological and task-oriented dimensions of the experience and there appears to be no acknowledgement of this reality, this can create a disconnect that is confusing or even hurtful. As we continue to work together to transform and rebuild healthcare, please keep in mind the three dimensions of patient experience for those we serve. Paying attention to and acknowledging these dimensions will go a long way in showing compassion and opening up communication. 

Tiffany Christensen
Vice President, Experience Excellence
The Beryl Institute