Viewing entries tagged
patient

No one wants to hear the clown in pain

Comedian Anthony Griffith preformed on the Tonight Show with Johnny Carson. While he was making the audience laugh, he was in tremendous pain inside.

This is a raw, hard story. It’s about taboo, cancer, blame, loss, acceptance and pluralism —common emotions in healthcare, ones not easily discussed, let alone in front an audience.

You should watch this. (there is some rough language)

Video:

On joining The Walking Gallery - a patient-centered movement

Tonight I was inducted into a secret society. A special club. The Illuminati. HxD Walking Gallery

The Walking Gallery is the creation of Regina Holliday. Regina is, as I’ve become fond of saying, a tour de force in healthcare. By her own admission, videos don’t do justice to the emotion she brings to her presence. Still, you should watch this one.

When Regina lost her husband Fred, she made a promise. She’d fight for patient rights, access to data, and a not so small goal of generally saving healthcare from itself. She became, as us Buffy fans appreciate, dark Willow.

In 2009 NPR reported on the genesis of Regina’s story.

I like disruptors. I like people who and things which challenge traditional institutions, particularly when the institutions in question don’t quite see it coming. Regina does just that through The Walking Gallery. She paints formal suit jackets for fellow disruptors. Suit in front, disruption in the back.

It’s not all fun and games. Regina’s images are deeply symbolic and, at the same time, disguised. She’s clever that way.

Here’s how it works: Wear the suit jacket to a conference or event. Be taken seriously —after all, it’s a suit jacket —and low and behold, on the back is a painting. What’s that about?Well, let me tell you! It’s that simple. ________

I was lucky enough to see my own Walking Gallery jacket come to life.

2013-03-25 08.27.35 HDR

Regina painted The Gamification of Healthcare 1.0 in almost real-time at 2013’s Healthcare Experience Design conference in Boston.

 

I couldn’t be more honored to be a part of The Walking Gallery. This is important. Regina and the Walkers are disruptive in the best way.

A little back story: Becoming a member of The Walking Gallery is easy, in the way any seriously emotional journey is easy. Mailing, or in my case handing, a jacket to Regina is pretty easy. But the experiences, stories and emotions which go into a jacket….well, those are unique to each member of the Gallery.


I’ll leave it to viewers to seek out metaphors, images and symbolism in Regina’s painting. Suffice it to say, at far too many hospitals, there’s no free parking.

Here’s the story I emailed to Regina before she started painting:

My story is really more of one of personal discovery, but not necessarily driven by a personal experience as a patient (though I’ve had 5 surgeries). But, in fact, I think this is a pretty simple story to tell.

The one thing I was sure of, when thinking about my education and career, was that I’d never work in healthcare. My dad was the CEO of a hospital system. I didn’t have anything against the work, it just didn’t seem interesting at all. I eventually did go to work for a local hospital, but only because they had the most interesting IT department in town. After college I went to work as a hospital performance improvement consultant. (After two years as a computer science major, I really knew, I’d never work in IT. I went on to graduate with a degree in History and English.)

So I criss-crossed the country, working as a consultant in hospitals. Friends and family began to say the apple hadn’t fallen far from the tree.

What started when I was consultant continued over the next 12 years of my career spanning hospital finance, operations and strategic work. I realized I was increasingly pulled into healthcare What I see is a system that is painfully broken and woefully ignorant of the emotional needs of the humans it serves.

Every significant moment in my career as been because of a patient - something they taught me, or made me aware of. Their stories and the experiences we shared together shape me and my work. (I've been accused of a myopic focus in my work and life).

One lady came into the back entry of a hospital I was working in while I was coming back from lunch. She was clearly upset and my coworkers passed her by, I stopped to talk. We spent the next 3 hours together, crying —her first, then me —while I helped her sort out her bills. One simple billing mistake, made by a computer, had caused her weeks of heartache. It was a simple fix but never should have happened.

Another elderly lady came into an urgent center I was running. We couldn’t do the full range of tests she needed, so we asked for her permission to transport her to the emergency room. She begged us not to send her there because a previous experience had been so bad. For an hour, I sat with her and held her hand while she told me her story of surviving cancer twice and founding the area’s first support group. She said she’d only go to the ER if I promised her it would be better. Since I couldn’t make that promise, I decided to go with her. We spent 6 hours together, talking about all the parts that worked and the things that were not patient-friendly. I spent several months working with my teams to try and fix those broken processes in our departments.

My career is full of these stories. I seek them out. I look for people in waiting rooms, lobbies hallways and elevators who may be in pain. I can’t practice medicine, but I can practice empathy, and the emotional rewards are just as great.

The most painful experience was when my father, the hospital CEO, was diagnosed with cancer and underwent a Whipple procedure at Johns Hopkins. During his 18 day stay, he and I dissected every aspect of his care. Most of it was excellent - by all accounts, life saving. But what parts were designed for patients? And what was designed with someone else in mind? What an influential, mind-bending, dont-want-to-do-again-but-grateful-Whipple-experience.

I don’t have a patient story. I have many patients’ stories.

They are the reasons I am disruptive. They are the reasons I got an advanced degree and can wear the disguise of an insider; someone who can sit a the old boys’ club table and be taken seriously (one hopes). But I’m a spy, a secret agent…poised to infiltrate. I bring in ePatients to speak, teeing them up as “expert consultants”. I plan projects under the guise of efficiency but really focused on staff happiness. And with each encounter with a patient or family member, I’d like to think, a little bit of their story becomes part of me. For that, I’m grateful.

I’m not a miracle worker. My plans sometimes backfire, or fail to come to fruition. But the rewards are unlike anything else.


Find Regina here: A Movie - Her blog - A book - Twitter

Together, we can make it better

There’s a former patient outside who needs to see you I’m on a call with my boss when Carol, one of our patient access team members, slips the note onto the desk I’m borrowing. My office is 12 miles away, but I’ve got a meeting in our urgent care center. I’m thinking to myself, ‘doesn’t like their bill….we took too long….whatever it is, I need to put on my mea culpa face…’

Brace for impact. I opened the door.

Do you remember me?

Instantly, I rewind three weeks to a day I hope I never forget.

I was sitting in the waiting room of one of our urgent care clinics; head down, cranking out email. When I need a place to churn through office work, I often like to sit one of our waiting rooms. It is a fantastic way to observe patient flow, the physical space, and general design components of the care environment. It is also a place with remarkably few distractions.

Ma’am, our nurse whispered, I’m sorry to say we think you would be better served by going to the ER. Truthfully, if I were not setting right next to the nurse when she said it, I would not have heard it. The patient’s privacy was, for all practical purposes, in tact. The disappointment, on the other hand, was quite palpable. I simply cannot go there, please don’t make me leave… the patient protested.

Why don’t you come to the back and lets talk about it

I followed them, at some distance. The nurse sat the patient down in a quiet, secluded area. With your history, and the symptoms you have today, we know the doctor is going to want to order tests we cannot do here. Really, you need the next level of care and we think you should consider going to the emergency room. Our physician stood looking on and agreed, the ER was the best bet.

Crestfallen doesn’t fully describe our patient’s reaction. The patient, head in their hands, began to cry softly. Please, I know it will take a long time if I got there and I really need to be seen… She also understood the practical reality of the situation – the doctors needed tests which can only be preformed at the hospital. Her disappointment was much about the situation as anything else. It is not that the ER is a bad place, it was just another stop on a long train ride of misery. Our patient accepted the rationale, but it didn’t mean she had to like it. And I didn’t blame this patient.

 

When I was in the waiting room at Johns Hopkins, almost a year ago today, I met K (whom I wrote about shortly after). K is a patient care coordinator. One of the things I remember most about K was how she addressed patients and visitors. She always positioned herself at their eye level. If you were sitting, she knelt down. If someone was standing, she stood. It sounds like a simple thing, but it makes a world of difference in how someone perceives your presence.

 

So I knelt. I crouched down to be on eye level with our sobbing patient. Ma’am, I know this isn’t the best news, let’s see what we can do to make a little better. We are gong to call the ER and let them know you are coming and to be ready for you….

 

I just want one day off! One day when I don’t have cancer, just one day then I don’t have to think about being sick. It wasn’t an interruption. It was part of the patient’s condition –her emotional needs were in as much distress as her physical concerns. This was a time to listen.

 

I cannot begin to understand how hard this all is, I offered. Would you be willing to tell me more about you story? She looked up with red, wet eyes and for the next ten minutes told about one of the most remarkable patient journeys I have ever heard of.

 

Almost two decades ago this new friend was diagnosed with a cancer. Rather than retreat into the world of sickness, she stabbed straight into the gut of their predicament. She started a support group, the first in the area. A call tree was constructed. I’ve been through this, the weepy eyes said, let me help you go through it to. That’s what she told others. Then she lobbied.

 

This remarkable person went to the state General Assembly and showed the scars from procedures she had and compelled law makers to amend regulations. The support group grew. There were t-shirts made, walks walked, funds funded; lives saved and some lost.

So when I heard this real, passionate, alive human say to me, I just want a day off, I could only understand a wisp of what that must feel like; But, it a wisp of something so pungent and acrid, that was all it took to plunge me into their world, even if only briefly. What do you say, when you hear someone’s story like that? The best lesion I have ever heard is to simply be grateful. Thank you, I started, thank you for sharing your story with me. You’ve reminded me why I come to work every day and the purpose of the work we do, and for that, I cannot thank you enough.

 

You have a good mother don’t you? We both laughed and I agreed.

You are the expert, you have been through this more times than I have. What should we do? Do you want to try and be seen here, or is the ER a better option?

 

I think I should go to the ER. But, can you promise me it will be better?

 

I can only promise you I will do everything I can, and so will every member of this team. Honestly, it was a non-promise. What do you say? Providers know better than to promise an outcome. Surely I, Mr. Beancounter, am the least qualified person in the room to make any guarantees.

 

When the rescue squad came for the transport, our patient asked me and our nurse for hugs. We exchanged warm embraces and helped see them into the ambulance.

I had a few more meetings that day, but couldn’t shake the sense I may have sent someone out with a promise I wasn’t sure I could keep. I don’t work in the ER, I’m not a doctor. When my last meeting wrapped, I headed over to the ER and asked if she was still in the department. Someone showed me to her exam room.

What are you doing here?

 

I had to come check in, and besides, you didn’t finish telling me about this support group you started? Would you mind if I sat and visited a while?

We continued to chat for several minutes until a provider came in. I wanted to respect her privacy and left.

I went home that night and told my wife about my experience. I told her how it genuinely reminded me why I work in healthcare. It’s easy to get lost in the daily work of being part of a large team of providers, staff and administrators. For must of us, we never fully lose sight of the mission and underlying human aspects of healthcare. Although we can easily forget how emotionally and spiritually challenge it can be to be a patient.

It’s three weeks later, and this amazing person is back in front of me asking if I remembered them. How could I not? I told her story to anyone who would listen. We borrowed an office and I invited her to have a seat and chat.

Like our previous encounter, eyes began to water. You saved my life, and I needed to come here and tell you that.

 

Well, people don’t say that to administrators often. For practical starters, we really aren’t involved with direct patient care. I thanked her for the unbelievably kind words and challenged them. I certainly did not, but I’m glad you are feeling so much bet…

 

No, you did, and so did the nurse here and your amazing staff. I was so sick that day and didn’t even know it. From the ER, I was admitted for ten days. I mean, I was really sick. I’ve just been cleared to drive again and I knew my first stop had to be here to tell you all that you saved my life.

That was all it took, I welled up too. Here we were, sitting in a borrowed office, sharing a box of tissues and connecting over a special moment.

She continued, I told you how I have been fighting for nearly two decades. One of the things I have learned about being a patient is how much control I am allowed to have. You and this team didn’t do anything to me…you asked me what I wanted to do.

 

I have this expression I used with all of my support group members, it is a reminder that we are a part of our own care…  She went on. Together, we can make it better. It was uttered again, slowly, deliberately. Together, we can make it better…. and that is how you all treated me, you let me decide.

 

Do you ever have one of those profound moments when you recognize what is happening is bigger than your ability to absorb it, or even react to it? That’s where I was; almost out of body. What a profound thing this visitor just shared.

I asked my guest, and by now I think it is safe to say, friend, if I could borrow her line.

The next week, during our staff meeting I shared the story. I told them about this patient’s experience. And, I shared our new mantra: Together, we can make it better.

Since then, we have ordered t-shirts and buttons with our new raison d’être. We start and close all of our team communications with our co-opted phrase. It reflects how we should treat each other as team members, it tells us how to involve our patients in their care and most importantly it reminds us every patient is on a journey. In listening to their story and seeking to understand them, together, we can make it better. 

 

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Vail's EpicMix, an innovative model for healthcare data

I'm not a huge fan of what I call blatant marketing. You know it when you see it, particularly with interactive campaigns online. You want me to do what? Like this page, give you my home address, and retweet your link for a chance to win an iPad? No thanks. I avoid frequent shopper cards at the grocery store for the same reason. When Vail Resorts launched Epic Mix last year, I was skeptical. Vail wants to track every move you make, literally, on their mountains. Vail installed RF chip readers in every lift line and started putting RFID chips in their lift tickets. You go through a line, and they know it. They also know your age, gender, address, family members and travel dates. With the tracking and demographic data, they have a pretty good idea about your habits at their resorts. You can even tie your credit card to your ticket for on-mountain purchases. I imagine the database thinking something like this (you know, if databases could think):

The Jones family starts skiing at 10am most days. Not surprising since they are from the East coast and have the time change. The kids are both in ski school today ... cha-ching! Oh look, mom and dad just stopped for lunch at the high end restaurant and the kids are eating pizza at the casual on-mountain restaurant. Mom skis black diamonds mostly and is logging 2x as much vertical as dad. They seem to come out every year around the same two weeks. Judging from their address, I bet they make about $110,000 a year and take two major vacations. We should email them a month before, I'll make a note of it. I wonder if they'd want a time share....

Pretty spooky huh?

So what did Vail do to change the value proposition of their data capturing? They launched EpicMix, a customer facing portal into the data. You sign up and register the ID number from your lift ticket. From there, things get social very fast. There is a FourSquare like game component where you earn pins - just like the real pins you see on people's hats or jackets - for accomplishments. Ski 26,400 feet and you get the 5 Miler pin. Head into the Northwoods area and you get the Gone Wild pin. The service also tracks your runs and vertical feet per day and season and lets you compete against friends and family. There's even iPhone and Android apps to track your stats in real time. And, of course, it all connects to Facebook and Twitter.

This year, Vail gave professional third party photographers the boot. Now, Vail's own photogs hang out near huge EpicMix Photo placards around the mountain. Ski up, and they scan the RFID tag on your ticket and snap a few pics. That evening, the pictures are uploaded to your EpicMix account and can be shared on Facebook or Twitter for free.

Vail took customer tracking and turned it into a value added service. It's a draw, something Vail's resorts have which other ski areas don't have.

It will come as no surprise I see a healthcare analogue in all of this. Rather than capture data about customers and keep it to themselves, Vail turned it into a customer-facing service. Does your doctor treat your medical records the same way? Can you go online and look at them? Do you get rewarded, even virtually, for losing those 10 pounds or controlling your asthma? Can you chose to share parts of your record with family or friends?  Can you chart your A1C scores over time?

Even with the rise of patient access into electronic medical records,  we've still got a ways to go before we reach the same level of understanding about personal data. I continue to see consumer devices and services leading the trend, which tells me two things: 1) people do want to own, collect, monitor and selectively share aspects of their health and 2) the consumer oriented companies can do it for cheaper. The later is likely owed to less red tape, regulations, research, etc. To be fair, there are iPhone apps which will graph your weight. And there are iPhone apps which will track your skied vertical feet. But the value of that data changes when it's shared with your provider (not that it has to originate with them, mind you).

Any thoughts? Are you aware of any provider organizations who are going beyond MyChart (an example of a patient EMR portal) and offering value added analysis and services on top of YOUR health data? What kinds of things would you want to see, beyond direct, unfettered access to the record?

By the way, according to my EpicMix dashboard, in the last 12 months, I've skied 121,453 vertical feet at Vail resorts... not too shabby for busted knees!

Since I've basically given Vail a free ad, I might as well embed their EpicMix video, it explains the service pretty well:

Apple iBooks, the future of patient education and shared decision aids

This week, Apple released their latest disruptive innovation, iBooks 2 and iBooks Author. iBooks 2 is a free update to the iBooks app for iPads. iBooks Author is a free mac desktop application which enables anyone with some basic typing and drag-and-drop skills to create pretty amazing eBooks. eBooks can contain pictures, links, audio, video, rotating graphics, self study questions and more. This is the future of patient education, shared decision aids and pre and post visit care.

On the outset, the idea of combining text and video and pictures isn't really that new. It's been around since…well… the start of the web. But in the context of a book, there is something really strangely compelling about seeing a moving video in the middle of static text. I can't quite describe it. After about an hour of tinkering with the app and pasting some images and text in from a keynote presentation, I had a nice little proof of concept. You can download it and see for yourself here.

There is something which draws you in when you see live action video playing within a frame of text. Adult education experts call this blended learning. We absorb more when we engage more of our senses.

So imagine this, your doctor tells you that you are going to need surgery. What's that process going to be like? What do I do before hand to prep? What should I do when I get home, you ask?

"Well, you can just download my free eBook," he says.

The book walks you through the pros and cons of surgery. It plays a video of the doctor outlining the procedure. A moving picture gallery shows you where to arrive, and what to expect the day of surgery. Another video shows you how to use the pre-surgical antimicrobial wash the doctor sent you home with. There are links to online communities from other patients who have been through the same process. There is even an embedded twitter search showing a real time discussion about your condition. Wow!

A few days after the procedure, you fire up chapter two. It shows a diagram of some basic stretching. The next page talks about nutrition. To make sure you understand the concepts, there is a short self test, don't worry, it's open book.

These tools are simple to create. They are easy to publish (for free). And, they are a tremendous value-add to patients. Apple has done it again. By disintermediating author from the publisher, they've given us all the ability to make robust patient aids. For that matter, patients could make them for other patients, and publish them on their blogs, or via the iTunes book store.

What are you waiting for, go publish your first eBook!

You can download my demo/work-in-progress book, Innovation in Healthcare: A Requirement For Success here. I'll continue to update it after this post is live, however the point is not to provide a serious book about health reform and innovation tactics. Rather, the point is to demonstrate how the technology can be used in a healthcare setting (this book is more geared to the administrative types than patients).

The gallery below includes images and descriptions of features in eBooks. 

 

 

Designing for Experience

The 4AM Wake Up Call. My friend was in the hospital a few weeks ago, nothing serious, a precautionary measure more than anything. I went to visit her and we sat and chatted. I always ask people about their experience. "What's going well, what would you change?" At first, you hear a lot of kudos. "Everyone has been really nice." I don't doubt it. But, you can't improve on compliments. I've found you have to ask people at least three times to get the juicy stuff.

"Well, I don't understand why they keep waking me up at 4 AM to take blood. Is my blood only good at 4 AM," she joked.

I know why they do it.

In The Accidental Mind, David Linden talks about the evolution of the human brain in Gladwell-like simplicity. He says evolution didn't just pop out this perfectly coordinated mass of nerves and synapses. The brain, in fact, is the result of years of renovations, additions and remodels. One part developed to respond to the needs or deficiencies of another. The process of healthcare, unsurprisingly, isn't much different.

Doctors usually want to round on patients first thing in the morning, around 7am. It frees them up for surgical cases or office visits early. When they round, they want to see the latest lab results. Lab tests take a few hours to coordinate and run. Thus the 4 AM blood draw.

It would be easy to point the finger at the doctor and say the patient is being inconvenienced to fit the doctor's schedule. But, much like the human brain, it's not that simple. Could the lab speed things up? How do we even get specimens to the lab, is that an efficient process? Well, that depends on who's eyes you are viewing the process through.

Designing for experience

Designing for experience is about true customer focus. It is deeper than what we traditionally think of as customer service, which describes the way people interact with each other. Designing for experience requires an almost painfully high degree of empathy for the person using your product of service. You have to not only be willing to see it through their eyes, but also feel it the way they might. Getting to that level requires a holistic attention to detail. After all, how much of what we feel is defined solely by our verbal interactions with someone? How much comes from environment, ambiance, touch, visual details, perceptions, waiting times?

In 2001 Susan and I were living in Paris. No, there are no buts, it was that cool. One weekend in July started like so many others. We descended into the local metro station, Odeon, out of the sun and into the belly of Paris. After an hour of riding, including a transfer to a regional train, we began the ascent back towards the surface. The first thing we saw was a giant, antiqued sign proclaiming our location to be Main Street U.S.A. It was utterly surreal. On one corner was a 1950s themed ice-cream parlor. Across the street was a video arcade. There was even a mini Statue of Liberty. Somewhere in the distance Its a Small World After All was floating through the air.

At that moment, we weren't in a field outside of Paris, we weren't even in France. We were in Disney's world. We were 12 years old, wide eyed and ready to run through the park at 100 miles per hour. They had gotten every detail right. The writing on the street signs, the food vendors, even the rides. It was a classic Disney experience.

Disney is a master of designing for experience at its resorts. That's not a young French girl playing Snow White. It is Snow White. That's not a facade in front of a concrete building, it is an honest old-time ice-cream pallor. It has to be, because if we saw behind the curtain, if the magic were revealed, then our brains would instantly unplug from the illusion and we'd feel like we were, in fact, in a field outside Paris, or marsh outside Orlando.

The challenge with designing for experience in healthcare, and probably most businesses, is the historical precedent of designing by censuses and compromise. Politics have become part of our corporate culture. If we do X, does it upset the person in charge of Y? If so, what is the compromise? And there's the rub. When we compromise to satisfy internal politics or business pressures, more often than not, we are making an even bigger compromise for the patient. It's how we get the 4 AM blood draw.

The PocketPC and importance of the foot fetish

In 2002, I had a PocketPC device. Its marketeers clearly took liberties with the size of the average pocket, but nonetheless it was a fairly compact thing for the time. It had a stylus-based touch screen, miserable handwriting recognition and very limited Windows PocketPC software. But, I like to live on the cutting edge with gadgets, so I picked one up.

What I really wanted was to watch movies and TV shows while at the gym. The problem was that it used some obscure file encoding. Not only that, the videos had to be perfectly formatted for the screen size. I found that if I ran a video through two different programs on my desktop PC, I could manipulate the file enough that it would usually play on the PocketPC.

I was the only one at the gym watching their own personal video screen.

I'll never forget the reaction of a friend who saw me on the elliptical one day: "you really are a huge nerd aren't you?" It was a friendly jab. At least I think it was. Fast forward to today, almost every runner on a treadmill has an iPod, iPhone or small personal device. This morning I saw one musclebound guy in a weight belt and tank top entering reps onto his iPad which he carried with as much pride as his protein shake. I dare you to call him a nerd.

What once was once a niche use case, is now the norm.

This summer, at Stanford's Medicine 2.0 conference, the precursor to the recently announced Medicine X series, Dennis Boyle from IDEO spoke about design thinking. He flashed up a slide of a stocking clad leg disappearing into a bright red high heel shoe. "If you want to make the best shoes, ask someone with a foot fetish to review them, they know more about shoes than you do," Boyle told the audience. What a line!

The past few years have given rise to a new term, e-Patients. These paradigm changers are empowered, engaged, informed, and most of all, desiring to participate in their care and planning as an equal peer. An e-Patient can be someone who googled symptoms before going to the doctor, or someone who studies their lab results with the veracity of a Rhodes Scholar.

The Pew Internet and American Life Project reports, "one in five Americans have gone online to find people with similar health concerns."

Still, not everyone one is convinced. One doctor privately quipped to me, "thats just what we need, more people using Dr. Google."

I understand his reaction. The perception is e-Patients come with inaccurate information, too many questions, or have unrealistic expectations of a doctor's availability. That misses the mark. The value of e-Patients, in addition to arugably reducing the burden on providers, is as the extreme use case. What if they are high-contact and high-need? Embrace it. They are the early PocketPC users who can tell you why using two programs to put videos on a device is seriously flawed. They are the ones with a foot fetish who can tell you why that color red isn't ideal.

They are the ones who can tell you why a 4 AM blood draw is not a good idea.

Facing the future

Designing for experience in healthcare requires a wholesale change to the way we plan for and implement services. Rather than design by committee, teams need to focus on putting themselves in the patient's perspective. If you want the ideal inpatient blood draw, sleep in a hospital room, and have someone wake you up at 4 AM two days in a row. By the third day, you'll have some creative ideas for solving the problem.

Boyle suggested being pushed around your hospital in a wheelchair, not once, but hundreds of times. See if from the eye level of someone sitting down. You'll notice how most nursing stations have counter tops higher than the eye level of someone in a chair. A hospital CEO once remarked to me, "you know it doesn't really matter what art we put on the walls, all of our patients are laying down and only see our drop tile celling, and man is it ugly."

Designing for experience also requires a high degree of empathy for the customer. It means you have to open yourself to feeling what they feel. Imagine being scared or confused or sedated. Empathy means thinking about what you would want in the same position. Have you sat waiting for 45 minutes in a doctor's waiting room? Do you like it? Then why do we think our patients will. There are solutions to these problems, but they require us to design for the patient experience, not the personal or political needs of the organization.

If you think designing for end user experience comes at a high cost or the sacrifice of revenues, just look at Apple's current market valuation. It can be done.

Designing for experience also means embracing the fringe use cases. Look towards our most frequent users, our e-Patients or our squeakiest wheels. What can they tell us about what works and what doesn't? What feels like fringe today will probably be the mainstream of tomorrow. Do we want to be ahead of it, or behind it?

Experience is a differentiator. In describing my experience at Thomas Keller's restaurants in this post, I said I expected the food to be amazing; it's was a given. What makes the meals memorable are the experiences. It is the same thing which sets Disney's parks apart from Six Flags. The Disney visit is a complete experience. It is the same thing which has made the Ritz-Carlton a world famous brand. We make choices based on emotion first, and reason second. Emotional connections are made with experiences. We expect excellent clinical care whenever we walk into a hospital. (If it's not excellent, we have bigger problems.) Experience makes the competitive difference.

If we want a healthcare system which works, is high quality and patient focused, we have to start designing for experience.

Guest Post: On Being a Patient

The following is a guest post from my father, hero and best friend George Dawson. 

“Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”  ( American author and activist, Susan Sontag Illness As Metaphor (1978)).

My citizenship in that other place began on August 4, 2011.  It came without much time to get ready. The week started with a routine visit to my primary care physician and ended with a diagnosis of cholangiocarcinoma (cancer of the common bile duct) at Johns Hopkins.

For the past 30 years I have been a hospital CEO.  Cancer caught up with me two months before my scheduled retirement as President and CEO of Centra, a 6000 employee health system serving central and Southside Virginia. Aside from several outpatient procedures,  I had never experienced a significant illness or injury.  In some ways my professional career prepared me to be a patient.  I am still learning about the gaps in that readiness.

Throughout my career I have been very interested in what we have come to call ” the patient experience.” Centra, like many health care systems, has focused intently on patient satisfaction and the various related topics and measures of how our patients feel about their care.  We have been students of Quint Studer and his ideas about how to better serve.  We have listened to Fred Lee tell us how Disney would do it.  And we have benchmarked our performance against other healthcare systems using metrics from Press Ganey and the CMS HCAPHS reports.

As a patient,  I am learning new perspectives.  One of these has to do with the loss of personal identify I felt as I entered Sontag’s Kingdom of the Sick.  In the Land of the Well, people know who I am.  Certainly this fact relates, in part, to my role as the chief executive of a large organization in our community.  But it’s more than that.  People also know me as a husband, a father, a skier and a guy who grows heirloom tomatoes.  My friendships and associations go back 30 years. Just as each of us has a distinct fingerprint, every one of us has an identity that is unique and personalized.

When I became a patient, I felt this identity slipping away.  Immediately the focus was on my illness and treatment.  There seemed to be little time to understand or consider the person who was hosting this particular cancer.  I found myself trying to engage my nurses and doctors in conversation to establish some identity as an individual.

In one sense, my feeling of personal anonymity is the product of a good thing.  I chose my doctor and Hopkins as the place for my surgery because of their expertise and the large number of surgeries they perform on cases like mine.  Some 300 patients a year receive Whipple procedures at Hopkins.  It is a long and complex procedure and involves significant post-op care. I was an inpatient for nearly two weeks.  At Hopkins the clinical pathway for this procedure is well established.  Everybody on the treatment team knows each step of  the process and his or her role.  This is one reason why Hopkins has excellent outcomes for Whipple surgery patients.

At Centra we don’t perform Whipple procedures,  but we do plenty of high volume procedures with excellent outcomes. Examples include cardiac cathertizations, total joint replacements and breast surgeries.   Each has a well established clinical pathway and a clearly defined process.  My time as a patient makes me wonder how well we understand  and accommodate the uniqueness of each of our patients. How often do our patients feel the same loss of individual identity that I have felt?

Some specific ideas:

  • It is about taking time to ask and listen to patients.  In our daily rush to complete the social history screen in the Electronic Medical Record,  do we really ask our patients who they are and listen to their  response?
  • It is about the symbols and customs we adopt.  I have developed a adverse reaction to hospital gowns –  the kind that are split up the back.  For me the gown has become the symbol that I am in the Kingdom of the Sick.  When I put one on,  it’s a little like surrendering my passport.  I wonder what other unnecessary symbols and props we have adopted in healthcare.  And I wonder how often they serve to protect our status and control  rather than serve our patients interests.
  • It is about the fragmentation in healthcare.  Specialized intensive care units, hospitalists and multiple consultants  have lead to greater clinical quality and efficiency.  At the same time they are barriers to really knowing our patients.
  • It is about information.  The better we understand  the clinical pathway,  the greater our opportunity and responsibility to explain it to our patients.  If we listen as we do so,  we have the opportunity to understand what alterations or modifications are needed to meet each patient’s unique needs. In doing so, we have a chance to increase patient ownership and responsibility for recovery.  If we leave the patient out of the information loop the best we can hope for is a passive partner in the process.

I understand the difficulties those of us in healthcare face.  Short length of stays, pressures on productivity,  the complexities of our professions are real challenges. My lifelong  experience in healthcare management tells me pressures like these make it hard.

So I will leave  you with just one  question,  how well do you really know your patients?

 

Its not what you do, its why you do it

My new friend Ashleigh, a branding/experience/design guru, recently shared a concept with me. She told me about the golden circle theory from Simon Sinek. He says: "people don't buy what you do, they buy why you do it." Sinek cites Apple as a prime example of the golden circle way of thinking. I'm pretty fond of the little California design company as well. If you've run out of Ambian and read this blog as a substitute before, then you'll know I frequently draw on Apple as a source for inspiration in healthcare innovation.

This isn't a tech blog so I'm not really interested in how many thunderwire ports the new iWidget has and why google's robophone is superior because it has 1.21 gigawatts of magic dust inside. Sinek takes the same approach, focusing on the culture of Apple (and others like the Wright brothers and Martin Luther King, Jr). Sinek says most of us, and most companies, think from the outside in. We think about what we do, then how we do it and finally, maybe we get to why we do it. In the video, Sinek argues innovators like Apple reverse the process, they think about why they do what they do and move outward towards what it is that they do.

Sinek says Apple first says 'we exist to think different, to make things better, we are a design company who happens to make easy to use computers.' As consumers we identify first with their core beliefs and secondly with their products. We think 'I like to think outside of the box too!' Apple could innovate, design and produce running shoes and they would probably be equally regarded as innovators in that space. It is not what they do, but how they do it. (I'm practicing, Sinek repeats that line over and over, its and effective technique.) He counters with Dell's attempt at making an MP3 player to compete with the iPod. Consumers reacted by asking ' why would I buy an MP3 player from a computer company?'

An un-named Wall Street analyst quipped General Motors is a "hospital that makes cars on the side." While that quote is clearly drawing attention to the employee benefit structure GM has cited as a source of financial hardship, it is nonetheless poignant. Could anyone say the same thing about a hospital or other provider - that they are something else first and care givers on the side?

I optimistically think most hospitals and providers really are in the business of caring for patients. Find me a provider who doesn't list patient services as the largest source of revenue. A senior hospital executive once told me he liked working in healthcare because you can run a cafeteria one day, be an architect the next and work with doctors on the third day. While I think that kind of diversity excites a lot of people (myself included), those are all things we do, not reasons to do them. I believe most hospitals and providers really have the core beliefe they exist to care for people, to make them well and bring them comfort. So why are we so bad at expressing that as an industry?

I've written about "healthcare highway" before. A stretch of road which had billboards for every major provider in the area. Dan Dunlop regularly posts examples of hospital ads on his great blog. All of these, the print ads, healthcare highway, all talk about what the providers do. Some have the best cyberknife for brain tumor treatment. Others boast their rankings and awards. Others are the fastest. Almost none talk about why they do what they do. There is biology at work too; we can understand the sign that says "top 50 hospital", but we don't have an emotional reaction.

The message to consumers, Sinek says, is filtered through our biology. We are programed to understand the complex ideas and statistics these "what we do" ads throw at us. However, none of them go past our brain's basic stage of reading the words and understanding them. When companies and individuals talk about why they do something we register it differently. It is what we call a "gut reaction." We resonate with beliefs because, for many of us, we believe the same thing.

As always, I'm not sure what the solution is. There are plenty of ads for providers which talk about how much they care. I'm not sure that is the same thing in Sinek's world as talking about what they believe, what drives them to care. Sinek does give credence to the importance of the message in who you hire and how they ultimately help drive those beliefs. That resonates with me.

What do you think? Do you have any examples of healthcare providers who speak and work from the outside in? Are there hospitals who first say "we exist to change the patient experience, and we happen to heal people in the process?" Is the opposite happening? Are consumer's looking at ads featuring healthcare technology and asking 'why would I get care from a technology company?'

A leg up - one day after surgery

Recovery Room

Fans of the TV show Top Chef know that contestants are often admonished for not tasting their food before it goes to the diners. Sampling your wears is the tenet of any service industry. That said I would wager that most healthcare professionals have not volunteered to go under the knife just to see what its like (and who would fault them?). There are times however when some of us get a chance to experience our service from the patient perspective - yesterday was one of those times for me.

As a result of my ACL injury, yesterday I underwent a surgical procedure to start the road to recovery. I wrote about my decision to to return to Richmond verses having the surgery at a world-renown clinic. What I did not not mention, something that was a major factor for me, is that I work for a top notch health system with four hospitals in Richmond. As part of my role I am focused on our 'service excellence' initiative. Indeed it is something we empower all of our team members to lead; a path towards world class patient experiences. The goal is simple, in every move we make, every interaction, we seek to exceed every patient's expectation, every time. In practice it is not so easy a thing.

So what did I observe from my day as a patient? For starters I confirmed what I had hoped for, that we do have team members committed to first class treatment. We have some things to fine tune but overall there is no doubt that my decision to come home for care was the right one.

The procedure went well, or so I am told. Once inside, they found a considerable amount of damage beyond the ACL rupture. From the MRI, we had suspected a tear in the meniscus (a cushion of tissue that forms a cup between the thigh and leg bones. The surgical team found multiple rips in the meniscus and were fortunately able to repair them. That repair will hopefully save me from a knee replacement in the future but it comes with a price tag. To let the meniscus heal, I have to keep my weight off the knee for three weeks - crutches, blurg! The ACL repair is a very interesting procedure in itself. When they tear, anterior cruciate ligaments literally explode, leaving nothing behind. I had a choice, they could remove a portion of a ligament from elsewhere in my leg or use a donor ligament. For various reasons, I chose the donor tissue. In either case, the procedure is really a bone graft. Since ligaments cannot be directly attached to bones, the replacement ligament still as a portion of bone attached to either end, and that bone segment is grafted into the knee joint.

And the patient? I'm in a fair amount of pain and rather immobilized. But I have a wonderful care taker and will start physical therapy today which should help. I also want to say a very heartfelt thank you to friends and family who have checked in.

Throughout my convelesence, I will continue to update this site with notes and observations. In particular, I am looking forward into detailing the clinical procedure and the physician who performed the work. For those interested, check back soon!