One thing that often pops early in conversations about patient experience is that the concept is more often discussed than it is defined.  Next, we share the sad truth that things not clearly defined are impossible to measure in a useful way.  I see leaders talk about the patient experience, fret about it, work on it, and advocate to make it better. Yet they tell me they don’t often know if everyone they work with defines it the same way, and they struggle to measure it.

Defining the patient experience is easy. As with the broader customer experience, every patient experience starts with a person who has a need, problem or desire they would trade something of value (time, money, or the like) to have solved. 

Their experience, then, is what happens and how they feel as they: realize a need, learn about options, try them out, choose or buy, use the product or service to solve their need, and evolve to another need over time.

Whether it’s 2am and someone is looking for relief for a daughter’s asthma, or someone else is considering the clinics near a new home after a recent move, every “patient” is out to solve a need.  Every patient has a patient experience.

I think because health is so personal, and because our system and our culture have us dependent on providers, regulators, and firms who pay for care on our behalf….measuring a patient experience is complex.  So I thought I’d try to find a publically available resource that does a great job of measuring the patient experience.

The good news: Government and private organizations are trying to make more information available for patients so they can make better-informed decisions about their health and their budgets.  The bad news: I’ve found no publicly reported scorecard in the US that accurately measures the whole patient experience from a patient point of view.

It's as if we're trapped in the old Indian fable about the blind men trying to define and measure an elephant by touch. Just as each man could only adequately describe the  portion of the elephant they touched, our patient experience measures only adequately describe the piece of the experience a particular organization touches.

Take a tour with me:

The Consumer Assessment of Health Providers and Systems (CAHPS) surveys patients about their experience with hospitals, health plans and the like. Surveys focus on emotional factors. As this example asks patients about communication with doctors and nurses, discharge information, and responsiveness.

JD Power has an area of their website dedicated to healthcare, and it focuses on rating pharmacies, insurance plans, and hospitals. Each is also focused mostly on communication and satisfaction.

There's the National Quality Measures Clearing House, which is supported by Agency for Healthcare Research and Quality.  Both agencies house valuable information, yet neither is aimed at consumers. Further, both focus on the clinical side of healthcare.

There are some new options out there, new people doing exciting things. Take Archelle Georgiou. She's developed MyHealthCompare.com, a site that brings publicly available government data into a consumer-friendly dashboard. Use it to see a hospital and how it's ranked on factors such as surgical outcomes, pneumonia incidence, cardiac care and patient satisfaction.

These resources are each measure a piece of the patient experience. Some measure mostly the tangible (quality, price, methodology) elements of the experience.  Some focus more on the intangible, emotional (communication, satisfaction) elements. All are framed from an organization's point of view - grouping data for a hospital or health insurance plan.  And other than the "liklihood to recommend" data we can't infer if these patient needs were actually solved.  Nobody has put it all together yet.

Here’s what I mean:  Let’s say I slip on a wet floor at Chicago’s Midway airport and pull my hamstring (I’d like to say this is fiction, but…). In addition to the colorful bruise on the back of my leg, within a few days I wind up with a swollen calf and pain in my leg.  After 10 days and no improvement I place a “should this be happening?” call to my Dr’s office. That sends me to the emergency room of a local hospital and through tests for a blot clot that thankfully came back negative. Cool.  10 more days, taking antibiotics and trying to type with my leg in the air and my computer on my chest (I know…it doesn’t work). Along the way care provider friends offer advice: work out; don’t work out, etc.

My visit will show up as a call at my doctor’s office and deep in the hospital’s ER performance data. But unless I publish it, there will be no holistic measure of my patient experience.  No measure of the tangible quality, price, or clinical outcomes that I experienced or what I felt at each step. No measure of how well my need was solved.

A few weeks ago I had the pleasure of being part of a discussion with Mayo CEO John Noseworthy, M.D.  When asked about measuring the integrated patient experience (for which Mayo is actually famous), Dr. Noseworthy responded "No one in this country measures an integrated patient experience." I admire his candor.

As consumers we are really early in the process of how to manage our own patient experience. Clinics, insurance companies, hospitals and government agencies are in the beginning stages of defining and measuring it too.

For now we're all blind and feeling an elephant.