A patient's view of "patient experience"

Why bother defining patient experience?

There is much movement lately in healthcare towards improving patient experience. So what exactly are we trying to improve? If we don't understand "patient experience", how can we hope to improve it? 

This is no trivial matter. As a person who has experienced the healthcare system, I would like to offer up my thoughts on this.

So instead of attempting a definition, I would like to explore the elements of patient experience:

• our response to our experience or way we think about it
• the scope of our experience and how we envision it
• our expectations going into the experience
• our receipt of the care and help given us
• the environments that surround our experience
• the relationships we have with all those involved in providing our needs 

What is our overarching response to the experience?

A patient experience is in many cases life altering and visceral -- striking at what it is to be human and vulnerable. 

Most of us have thought deeply about our experience and what it means. Too often we are approached to comment on our experience from a consumer mentality using words that better describe our response to a new soda drink. We need to go way beyond the tepid "perception" or even the simple  "feeling" when talking about our response.  And as for  "satisfaction"!  My life was saved so I am now "satisfied" -- really? Is that a way to describe my response to either my near death experience from car injuries or even my more mundane gall bladder attack? I expect, perhaps unjustifiably, to be saved from death, from pain, from disability.

I know that I mull over all the aspects of my experiences and try to make sense of them -- and the role I and others have played -- and the information both given and sought. I am not alone in this. It is clear from hearing others speak of their experiences, they, too, have thought deeply about them.

When I think about my overall response to a health experience, it is more like a "cumulative evaluation of the journey," a description provided by Integrated Loyalty Systems.   I rather like that. 

So let's accept that part of the patient experience is the thoughtful evaluation we make of it and use that expertise.

When does the experience start and stop?

I get the sense that organizations define the patient experience from when the patient arrives at their door to when they leave, as is their mandate. But isn't the task to assess the patient experience, not the organization's experience of the patient?

My health journey starts when I am feeling crummy or when I have damaged myself and seek help. It ends when I feel entirely well or the damage is repaired. Since we don't always become entirely well or fully repaired, our journey may become how we live and end when we die. 

Most health journeys stumble across the system --> hospital - rehab - primary care - specialists - home care - long term care. And often the journey includes alternative medicine --> massage - acupuncture and other non-formal treatments. Not to mention --> meals on wheels - housekeepers and other ancillary supports.

Is it a journey or a continuum of care?

The journey is sometimes referred to as "care across the continuum" or "continuum of care" by the healthcare industry.

But what is meant by "care" or "continuum"? 

Does this term cover only care delivered by the healthcare system or does it include other supports like housing or various types of encounters? 

And "continuum" implies, at least to me, a straight line -- but most journeys include wrong paths, doubling back, blind alleys, meandering, standing still, plodding slowly and running blindly forward. And how many people would refer to their experience as a "continuum" versus a "journey"? 

For me, a health experience is more like a journey than anything so tidy as a "continuum."

Let's all understand what care and help the patient actually seeks and receives so we can begin to understand what needs to be coordinated and how.

Our expectations of care

Well clearly the nature and quality of care is foundational to our experience. But truthfully, when I seek help, I expect good quality care. I expect my providers to know their stuff and deploy their expertise on my behalf. I also expect that they know what they don't know and will turn for help. And I expect them to understand the full context of both my health history and my personal circumstances that impact my health and treatment.

These expectations are the benchmark by which I evaluate the care I receive.  They colour how I interpret my experience.

Our receipt of care

Overall, the healthcare professionals who care for us deliver care to the utmost of their considerable abilities. While individual providers may deliver top care, lack of coordination may translate their efforts into a poor experience for the person in need who is receiving the care.

It is a different perspective to look at the receiving end of services. 

Our environment of care

We are all sensory beings even, or perhaps especially, when we are unwell or hurt. 

How confident in the care are we when the bathrooms are dirty? How easy is it to wait on uncomfortable chairs staring at dingy walls? How soothing to our anxiety or our ability to sleep with the intermittent code calls blaring forth reminding us that someone else is in distress? Do we have to walk forever from a pricey parking spot to visit a loved one or attend to ourselves? In long term care, do the smells assail us and humiliate us? 

The environment matters more than we know -- to all of us including staff and providers.

Our relationships throughout our experience

When I'm ill or injured, I am scared and anxious. How I am treated impacts me hugely and not just about how I feel about the experience. It affects my ability to move my energy from fear and anxiety to healing and listening.

Being treated like a slab of meat makes me angry. Being treated like a child pisses me off. This basically eliminates my ability to collaborate in my care. Not a good thing.

And another thing, when I'm screaming in agony and basically can't communicate, I expect my husband to interpret and explain on my behalf. If I see that no one is listening to him, my anxiety goes through the roof. Also not a good thing.

A large portion of the patient experience is about relationships. It may even be the critical portion. After all, if the provider doesn't listen well, they may not get the information they need to make good decisions.  If my caregiver is not listened to, I may be in jeopardy or at least uncomfortable. If my energy is taken up with anything but healing and collaborating on that endeavour, then I won't do well. And a snotty receptionist who ignores me, well that just puts me in a grand state to collaborate with the person who hired him or her!

This isn't just about respect, it is about getting effective results.

Defining patient experience

I will leave the precise definition to those who need this tool. And I encourage all charged with this task to include patients and consider all the elements listed above.

A definition that truly reflects the patient experience, developed together with patients, will clear the way to improving what matters to patients.

Useful reading

There is a useful and comprehensive article worth reading on this: Defining Patient Experience, in the Patient Experience Journal, April 2014.