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the email, the podcast and the simultaneous truths of genetic testing

The email Nearly six months ago, a physician friend sent me an email.

She wrote to me on the subject of genetic testing after I told anyone who would listen about 23andMe, Health Diagnostic Labs, and quantified self trends.

I can get kinda gung-ho about this stuff.

Her email stopped me in my tracks I’ve been paralyzed by it, unable to respond.

I have to respond to the queasy feeling in my stomach about untempered enthusiasm about commercially available genetic testing. I know you sat through statistics, and remember that in a low-risk population, the likelihood of a false positive test greatly outweighs a true positive test. I want you to add to that the uncertainty about what a positive genetic test means: “penetrance” means sometimes you have the genetic abnormality, but never get the disease, “mosaicism” means that not all your cells are 100% identical genetically, and finally there is the plain old uncertainty about how the environment affects gene expression. No wonder the USPSTF doesn’t recommend any genetic screening for the general population.

…Personally, I see patients who spent the $100 to get their ultrasound screen (read by someone who may or may not be qualified to do so) when they can’t afford their copay for necessary care. I think there is an ethical issue in that. That’s not even considering the counseling needed to negotiate the quagmire of heritable diseases. A recent conversation with a 40 year-old who just discovered she was BRAC2 (breast and ovarian cancer) positive around when and how to tell her adolescent daughters and how it would affect their decisions around marriage and children, brought this home. What if she did NOT have a family history and her test was a false positive?

The traditional argument against screening marketed to consumers is the added cost burden to the system of proving that those false positives are actually negative. (The statistical chance of having all normal tests on a 12 test panel is very close to zero.) Remember the classic article that 50% of care is unneeded? Isn’t this part of that 50%?

OK, I know there is also a lot of promise in this, and if we don’t explore and think about it it will never be ready for prime time. However it still gives me a queasy feeling when it is popularized. I was wondering if you thought about any of the issues above before you decided to be tested?

Boom. That put the breaks on the hamster wheel in my head.

I mean, I did think about a lot of those issues, at least as they pertained to me personally. But still her questions gave me pause.

Those who know me personally will attest I’m rarely at a loss for banter. (A middle school teacher once remarked: “Dawson would argue with a brick wall if it would talk back.”)

It’s not that I couldn’t think of responses. For instance: Some people would rather know than not know. Or, everyone has a right to chose for themselves. When it comes to cost, some argue, early detection through advanced diagnostics leads to less expensive treatment.

But I stalled, perplexed…

The Podcast

And then I listened to the latest Freaknomics podcast. Do You Really Want to Know Your Future? You can download/subscribe at iTunes, or listen via the media player below.

The podcast opens with Nancy Wexler discussing her mother’s diagnosis of Huntington’s, a genetically inherited, fatal neurological disorder. Wexler’s father founded the Hereditary Disease Foundation —an organization dedicated to finding a cure —which Wexler now runs.

Wexler speaks openly about the invention of a genetic test for Huntington’s:

DUBNER: If there had been a test available then, a test like the one that you helped develop later, do you think your mom would have taken it at a young age?

WEXLER: No.

DUBNER: Why?

WEXLER: Why should she have?

Later in the program, host Steven Dubner interviews Emily Oster, an economist trying to understand why some people simply don’t want to know what the future may hold:

OSTER: …I think what we come down to is the view that in fact largely the reason that people don’t want to get this test is because while they are untested they seem to be able to basically be able to basically pretend everything is fine and that that may be very valuable….I think what it tells us is that people care both about what they think will happen in the future and what actually happens. So you know, I enjoy going on a cruise, but I also value the time leading up to the cruise where I get to think about how great the cruise is going to be. I think often our normal, or standard economic models would basically say we only value the second thing, the only thing that’s beneficial of a cruise is the literal experience of being on the cruise. I think that what this says is in fact something that’s probably more comfortable for most non-economists, which is that there’s some value of, kind of, what you think is going to happen that that has like real benefits, or real costs for you.

 

The mantra

One of my favorite expressions is action conquers fear. We use it a lot in skiing. You can stand at the top of a mogul ridden black diamond and contemplate all the ways you'll fall and mangle your body. But the only way to settle the butterflies in your stomach is to make the first turn down the hill.

In the case of genetic testing, being able to take action on the results matters.

A friend and activist in BRCA testing and decision making suggests:

"...the key to all of this data is learning what's truly actionable. For something like BRCA, we have options. For Huntington's, we don't [yet]. But we need to build a model where we can find better preventative options for both diseases.  And I believe we can get there."

Knowing we can act on the results has a profound effect on the indifference curve (to borrow the economists' lingo), may impact our decision to test or not test. For instance, most of us don't shy away from taking our temperature to determine if we have a fever. We know how to treat a fever. But if we are contemplating something more serious and potentially life-changing, we may think differently about testing.

Each of us has to weigh the relative risk of knowing versus not knowing. 

The ah-ha

As simple, and even silly, as this may sound I found my ah-ha moment in the closing audio clips of the episode. It happened as I was walking out the door for an evening run.

Both things can co-exist: wanting to know and not wanting to know. And they can coexist in the same person.

The ah-ha is that there is no answer.

Whether we step through the looking glass or not, there will always be fear and rewards with both knowing and not knowing. They are simultaneous truths.

Will genetic testing bring some people peace? Yes. Might it incur unnecessary costs? Yes. Will knowing a propensity for a disease produce stress? Yes. Will not knowing have an effect? Yes.

I love the idea of two truths co-existing. Something can be reassuring and scary at the same time. Something cane be costly and cost-saving at the same time.

Absolutes, as it turns out, aren’t always absolute.

The podcast closes with recorded remarks from people who have a 50% chance of developing Huntington’s:

SHANA: My name is Shana Martin, I’m from Madison, Wisconsin, I’m 33 years old, I’m a world champion lumberjack athlete…I’m getting married in a few months, and we’re starting to explore having kids. And we chatted about it, I’m still quite firm that I don’t want to know.

 

 

>My name is Melinda Maher, I’m 25 years old and I’m living at risk for Huntington’s Disease…I hope to get a teaching job and I hope to move away from home and I hope to be able to move out and be on my own and have my own life and independence. And still right now I feel like if I were to test positive I would be afraid of that independence.

The Audio

The Prolog

 I asked my friend for permission to publish her email. She has again thrown down the gauntlet with more questions which challenge me to think deeper. But at the very least, we both agree that having these conversations is better than not having them.

What do you think, is it better to test, with the risks of knowing something you cannot un-know and may not be able to treat? Or, is it better to only test as needed?

National Cancer Survivor's Day 2013

Vail2012

When does cancer survivorship start?

Depending on perspective, you may be considered a survivor the day of surgery, or after the last dose of radiation. In fact, how a doctor, patient or family members determines survivorship may all be different landmarks.

I’m not a cancer survivor myself, but my dad is. I’m not sure what day he decided he was a survivor, or if that feeling ever settles in permanently.

In my mind, our family’s survivorship started in February 2012 when we skied together for the first time since Dad’s surgery. It wasn’t something any of us were guaranteed would happen again. I’m looking forward to many, many more turns down the hill to come.

I hope today, National Cancer Survivors Day marks a milestone and is a cause for happiness and celebration for many. I’m also aware it may be a painful day for many others.

David Foster Wallace on the importance of every day life

If I can suggest Cleveland Clinic’s Empathy Video is a B.A. in Empathy, then I submit David Foster Wallace’s 2006 Commence Address as a PhD in the same.

There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says “Morning, boys. How’s the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes “What the hell is water?”

But most days, if you’re aware enough to give yourself a choice, you can choose to look differently at this fat, dead-eyed, over-made-up lady who just screamed at her kid in the checkout line. Maybe she’s not usually like this. Maybe she’s been up three straight nights holding the hand of a husband who is dying of bone cancer. Or maybe this very lady is the low-wage clerk at the motor vehicle department, who just yesterday helped your spouse resolve a horrific, infuriating, red-tape problem through some small act of bureaucratic kindness. Of course, none of this is likely, but it’s also not impossible. It just depends what you want to consider. If you’re automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won’t consider possibilities that aren’t annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down.

Just Talking

Recently, I had the honor of being a guest on Chris Snider’s Just Talking podcast.

We spoke about how I got into healthcare, why I’ve stayed in healthcare and whats to come. Hint: 2013, the year of the ePatient.

I’m nothing if not self-deprecating, and I’m not ever sure why someone would want to listen to me drone on. But Chris has a way. He’s a great host and before I realized, we were getting into some deep stuff. So if you can put up with me for an hour, you’ll be rewarded by some great hosting and conversation with Chris.

We also spoke quite a bit about Stanford’s Medicine X program.

From the Just Talking site:

Nick Dawson, Chief Experience Officer for Frontier Health Consulting is my guest this week talking about the evolution of healthcare. We dig into Nick’s background and how a chance internship eventually defined his career path. Nick share’s his perspective on how technology has impacted and improved healthcare, the growth, adoption, and influence of social media on healthcare. And we talk about the rise of the fabled “ePatient” and what that means for future generations. Enjoy.

You can listen on the Just Talking site or subscribe via iTunes here.

Just Talking

More on glycerine and psoriasis

\Last week, I wrote about my experience treating psoriasis with inexpensive vegetable glycerine. I want to briefly follow up on things I’ve since learned, some comments and some questions.

The Research

The folks on the Inspire forum are amazingly helpful (a hallmark of any ePatient community!). I’ve was pointed to BrianFH who is believed to be the progenitor on the topic.

In this post, BrianFH lays forth his hypothesis on why glycerin is effective in treating psoriasis.

Many of the early posts on Inspire related to glycerin point to a few key journal articles and news sources.

News Sources

Academic Articles

Most of the research in the field seems to come from Wendy Bollag, PhD, a cell physicist at the University of Georgia.

Dr. Bollag has published several articles on glycerin and skin, including a few in which she speculates on its success in treating psoriasis.

  • Qin H, Zheng X, Zhong X, Shetty AK, Elias PM, Bollag WB. Aquaporin–3 in keratinocytes and skin: Its role and interaction with phospholipase D2. Arch Biochem Biophys. 2011 Jan 26.
  • A potential role for the phospholipase D2-aquaporin–3 signaling module in early keratinocyte differentiation: production of a phosphatidylglycerol signaling lipid. Bollag WB, Xie D, Zheng X, Zhong X. J Invest Dermatol. 2007 Dec;127(12):2823–31. Epub 2007 Jun 28.

Why is this information so hard to find?

This is still the most disconcerting part for me. In fact, I’m writing these posts largely as an attempt to increase awareness for others who may be searching for low-cost, low-risk, effective psorasis treatments.

The lack of a real, reputable study on the use of glycerin to treat psoriasis was discussed on Inspire. The thread’s author reports on an email exchange with Dr. Bollag.

“We are in the process of preparing a manuscript for submission on some additional research on this project but it probably won’t be out for many months still (depending on how kind or unkind the reviewers are). In the meantime, we published a review article discussing the evidence for the importance of glycerol, and more particularly its transporter aquaporin–3, in healthy and diseased skin. Anecdotally, I have heard from several individuals of the benefits of glycerol, which can be obtained from a pharmacy or from a crafts store like Michael’s (glycerol, otherwise known as glycerin, is an ingredient in cake icing). Thank you for letting me know about this thread–I will go take a look. Interestingly, I have applied several times to NPF to study this idea and have always been declined for funding.”

That last sentence gives many, including me, heartburn.

Placebo Effect

Without a reputable, reproducible study in a peer-reviewed journal, any success with glycerine and psoriasis is simply a placebo effect. Or at least that’s how it will be received by naysayers and skeptics. Even worse, it will not make its way in front of doctors.

In healthcare, physicians and wonky administrative types (like me) tend to favor evidence based medicine —doing what reproducible, peer-reviewed literature shows to be effective. That’s why we need a study for this $4 internet cure.

Follow the funding?

I’m pretty cynical. But I’m not sure I totally buy the notion research goes unfunded because there’s no money in the cure. Regardless, I wonder if this is a case where the community should crowdsource the trial.

More on glycerin and psoriasis

Last week, I wrote about my experience treating psoriasis with inexpensive vegetable glycerine. I want to briefly follow up on things I’ve since learned, some comments and some questions.

The Research

The folks on the Inspire forum are amazingly helpful (a hallmark of any ePatient community!). I’ve was pointed to BrianFH who is believed to be the progenitor on the topic.

In this post, BrianFH lays forth his hypothesis on why glycerin is effective in treating psoriasis.

Many of the early posts on Inspire related to glycerin point to a few key journal articles and news sources.

News Sources

Academic Articles

Most of the research in the field seems to come from Wendy Bollag, PhD, a cell physicist at the University of Georgia.

Dr. Bollag has published several articles on glycerin and skin, including a few in which she speculates on its success in treating psoriasis.

  • Qin H, Zheng X, Zhong X, Shetty AK, Elias PM, Bollag WB. Aquaporin–3 in keratinocytes and skin: Its role and interaction with phospholipase D2. Arch Biochem Biophys. 2011 Jan 26.
  • A potential role for the phospholipase D2-aquaporin–3 signaling module in early keratinocyte differentiation: production of a phosphatidylglycerol signaling lipid. Bollag WB, Xie D, Zheng X, Zhong X. J Invest Dermatol. 2007 Dec;127(12):2823–31. Epub 2007 Jun 28.

Why is this information so hard to find?

This is still the most disconcerting part for me. In fact, I’m writing these posts largely as an attempt to increase awareness for others who may be searching for low-cost, low-risk, effective psorasis treatments.

The lack of a real, reputable study on the use of glycerin to treat psoriasis was discussed on Inspire. The thread’s author reports on an email exchange with Dr. Bollag.

“We are in the process of preparing a manuscript for submission on some additional research on this project but it probably won’t be out for many months still (depending on how kind or unkind the reviewers are). In the meantime, we published a review article discussing the evidence for the importance of glycerol, and more particularly its transporter aquaporin–3, in healthy and diseased skin. Anecdotally, I have heard from several individuals of the benefits of glycerol, which can be obtained from a pharmacy or from a crafts store like Michael’s (glycerol, otherwise known as glycerin, is an ingredient in cake icing). Thank you for letting me know about this thread–I will go take a look. Interestingly, I have applied several times to NPF to study this idea and have always been declined for funding.”

That last sentence gives many, including me, heartburn.

Placebo Effect

Without a reputable, reproducible study in a peer-reviewed journal, any success with glycerine and psoriasis is simply a placebo effect. Or at least that’s how it will be received by naysayers and skeptics. Even worse, it will not make its way in front of doctors.

In healthcare, physicians and wonky administrative types (like me) tend to favor evidence based medicine —doing what reproducible, peer-reviewed literature shows to be effective. That’s why we need a study for this $4 internet cure.

Follow the funding?

I’m pretty cynical. But I’m not sure I totally buy the notion research goes unfunded because there’s no money in the cure. Regardless, I wonder if this is a case where the community should crowdsource the trial.

Help us find the people who took our camera on its own vacation then brought it back

I’ve been skiing since I was 3. If they had made small video cameras in the late 70s and early 80s, I probably would have started making poorly-edited videos then. As it is, we didn’t really get cameras one would want to ski with until about…say…2003?.

The videos got marginally better.

And some tell a story.

I’m rarely in them, because I’m the one holding the camera.

For 13 years, we’ve been taking a guy’s trip. Most of those videos look the same. (Only, we’ve gotten older and slower).

This year, I bought a new camera. Which was billed as the ultimate skiing camera. Stick it to anything…helmet, pole, even your boot. So I did.

It fell off. After some searching, I figured I’d never see it again. Little did I know, my camera was off having its own vacation.

Help me find the this group! In addition to looking like a lot of fun, they took my camera on a fun-packed day, filmed their adventure and —above all —were kind enough to turn it into the lost and found. It doesn’t get much cooler than that.

But who where they….?

who were they? from Nick Dawson on Vimeo.

Book review: Thinking, Fast and Slow

I heard about Daniel Kahneman’s Thinking, Fast and Slow from friend and ePatient superstar e-Patient Dave. It’s the first, what I’ll call, real book I’ve dug into since finishing my MHA in January.

And, it has blown me away!

In Thinking, Kahneman outlines our brains’ two basic modes of thinking: system 1 and system 2. System 1 deals with instincts, gut reactions and heuristics. System 2 is the slower (Kahneman says lazy) part of our mind which is capable of more complicated reasoning.

We read, most often, through system 1 which recognizes words quickly, as patterns. System 1 is why we are open to suggestion (your left leg feels a little numb right now, doesn’t it?….see!).

System 2 is the part of our brain which can reason through fact and fiction. But only when we engage it. Kahneman demonstrates system 2 early in the book by having readers write a three digit number and mentally begin adding 1 to each digit. According to Kahneman we actually have a physiological response —our pupils dilate as we engage system 2 to work through the basic math.

Here’s what I’ve found most interesting:

System 1 works best with absolutes. Kahneman refers to this is WYSIATI, what you see is all there is. For example, we see a label reading 90% fat free as positive and forget there is also 10% which is fat. We see 90% fat free, that must be all that matters.

System 2 is more conscious and can hold multiple options at the same time.

This ties in to my growing understanding of pluralism —the concept of two or more truths coexisting. For instance, a patient can be both hopeful and scared at the same time. The challenge is, according to Kahneman, only system 2, the more lazy part of the mind, is capable of understanding that both emotions can coexist. Our tendency is to rely on system 1 which focuses on what is in front of us. In the case of the patient above, it may be a look of fear on their face. Boom, that’s it. System 1 identifies fear and that’s what we go with. The patient is scared and that’s what I’ll deal with.

Without engaging system 2, we might not also identify hopefulness, or optimism, or doubt, or any other coexisting emotions.

These two systems are not limited to how we process perceptions about emotions. We face the same challenges in examining facts, causation and data in general. In fact, that is what much of the book deals with.

Kahneman has a gifted ability, much like Malcolm Gladwell, to distill complex science into what almost feels like common sense. Despite its length, it is a quick, enjoyable read.

You can get it on Amazon here: Thinking, Fast and Slow

How a $4 internet cure saved me from chemotherapy and hundreds of dollars

No seriously. I know what you are thinking… Internet. cure. wack-job.

But I have pictures. I can prove it!

First, a little back story. I’ve had mild psoriasis for years. In my case, it presents as a few areas of dry, flaky skin. At first it was on my elbows and then a few other spots appeared on my legs. It’s annoying, but has been generally controlled with topical steroids.

The problem with topical steroids is they cause skin thinning. The generic ointment ran me about $10 a month.

This, in the grand scheme, is not a major health problem.

But for many, psoriasis can be both chronic and extremely embarrassing. It can form large, red, flaky patches all over one’s body and face. It itches, and can crack and bleed. It is often accompanied by inflammation in joints (which may be present and not felt). For many, P is a major health problem.

The [common treatments][1] for medium to severe P include:

  • Topical steroids
  • Anthralin (a med which affects DNA)
  • Topical retinoids
  • UV light therapy
  • Oral steroids or retinoids
  • Methotrexate - a form of chemotherapy and an autoimmune suppressant.

(You read the last one correctly, chemotherapy!)

Almost two years ago, I developed a persistent patch on my left wrist (interestingly, psoriasis usually presents bilaterally, although I never got any on my right wrist). When I wore a watch or long sleeves, it wasn’t bad. When I didn’t, people asked if I had poison ivy, got scratched by my cat or had otherwise managed to mangle myself.

Still, no big deal.

But I decided to finally go to the dermatologist. On the first visit, they injected several of the small patches on my arms and legs with steroids. For my legs, the injections served as a booster and did great work of clearing the more persistent patches.

When I asked about my arm, it was suggested I think seriously about chemotherapy (Methotrexate).

I told them my goal was to get away from systemic medications and would be interested in what the topical options were. I left with samples for a steroid foam, concentrated vitamin D foam and steroid tape. I was told to watch out for further thinning —my wrist was starting to show signs of long-term steroid contact (which leads to scaring).

The foams were messy and ineffective. The tape, which looks like clear packing tape, is impregnated with steroids and kept things in check. It was $60 a roll and a roll lasts a month.

Now, this is where some readers who know me are rolling their eyes. What about ePatients Nick? What about online communities? What about Dr. Google?!

I know… I know. Actually, I had checked into the P forums on Patients Like Me before. I’d done some basic searching and hadn’t found much of value. I found some people wrapped their affected areas in plastic kitchen wrap to seal the meds in. I tried that. Pain in the rear.

This time I decided to go deeper.

I started on Wikipedia’s psoriasis page where I learned there are several types of psoriasis. I had never been told there were different kinds before. should have looked sooner. Specifically, I learned most of mine was classified as plaque which responds quite well to steroids. Makes sense. I also learned about guttate psoriasis. Those pictures where more like my increasingly pink and nasty left wrist.

So I googled more, this time specifically on guttate P. I found the NIH site and a few others, none of which yielded new info.

Then I got a wild hair…guttate psoriasis home remedy. Nothing. But Google did suggest a similar search: guttate psoriasis treatment. That’s where I found this site. Its not without some challenges. First, it requires users to sign up. And despite the National Psoriasis Foundation branding, it is actually a for-profit organization which hosts sites for national foundations. Something wicked this way comes. But, if you look carefully, you can actually read some of the forum posts behind the sign-up banner.

I saw this post:

I read that a number of people had success applying glycerin USP grade from the drug store on their lesions. It is cheap and non-toxic. I figured, what do I have to lose. I started to apply the glycerin at the end of January …Five weeks after I started this she was 100% clear and she has stayed this way for almost 5 weeks now.

And there were more posts, all about glycerin. I typed guttate psoriasis glycerin into google. More posts, mostly from inspire.com.

I’ve suffered with the effects and treatments of psoriasis all over my body for 40 years and nothing helped. The steroids destroyed my skin and the pills and lotions did nothing at all. Now I finally found something that does what it says and it’s all Natural! The scars and marks from the steroids are vanishing, the red, raised bumps are are gone and all the itching has stopped, I can finally sleep!! I’m so thankful. I would recommend this to anyone who will listen!

Ok, let me get this straight? People on this special site, sponsored or owned or something’ed by the National Psoriasis Foundation have discovered a vegetable sweetener cures psoriasis? Beats chemotherapy!

I tried it.

Day 3:

day3

I didn’t think to take a picture on the first day, we’ll consider this the start. As you can see, my wrist was pretty splotchy and red. It was “in control” from two months of vitamin D foam and steroid tape.

Some of the posts on Inspire suggested they saw dramatic results in a week. After two weeks, I didn’t see much improvement, but decided not to give up. I applied a few drops of a $4 bottle of vegetable glycerin two times a day, diligently.

Day 30:

day30

This might be working.

Day 37:

day37

Virtually gone. In fact, if I hadn’t gotten sunburnt a few days ago, I doubt the photo would show any decreeable redness at all. Unbelievable.

Is this a scientific test? Not exactly, I’m a sample of one. But I did put some controls in place. I applied the glycerin two my left wrist and forearm, and right leg (which had some plaque legions). I did not apply anything to my left leg or right elbow.

Everywhere I applied the glycerin regularly, improved and in many cases disappeared completely. Legions where I did not apply anything stayed the same or worsened.

Cured, by the internet!

Tucked off in the western backwaters of the internet is this amazing resource. There is a whole forum of people who have discovered, somehow, cheap glycerin treats psoriasis better than topical meds, oral meds and chemotherapy.

Why was this information so hard to find? Why is it behind a walled garden?

Why doesn’t my doctor know about this? Or worse, did they know and not tell me?

I’m not sure how to connect these dots, but I am sure of one thing: I’ll search exhaustively from here on out and will be an even louder voice for others to do the same. To reiterate, my case wasn’t bad and I would have lived with it long before I tried chemotherapy. What concerns me is how information like this can be out there and not easily found by patients and, worse, be unknown to doctors.
_______

[1]: http://www.mayoclinic.com/health/psoriasis/DS00193/DSECTION=treatments%2Dand%2Ddrugs “Mayo Clinic Medical Library”

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

Announcing the First Medicine X ePatient Q&A

Post event updateIf you are here, you should really be here, on the Medicine X site.

But, since you are here, you should consider following this link to apply for a 2013 ePatient scholarship. Who should apply? Anyone who has ever gone online or sought out a community to feel more empowered, engaged, educated, or supported. Hint: you.

You can find the video of the panel on the Medicine X YouTube page here.

March 3/6 Update

Watch the live stream on Stanford Medicine X's YouTube Channel, or on this page (the video will appear when the Q&A is live at 9p ET/ 6p PT.

 

Follow and participate in the twitter chat on Tweetchat, or by searching for and adding #MedXeP to your tweets.

 

_________

What happens when Stanford brings together leading patients, researchers, doctors and silicon valley minds? Join some of 2012’s Medicine X ePatient scholars for a live Google Hangout and Tweet Chat to find out.

On March 6th, 2013, Chris Snider, 2012 ePatient Scholar and host of the Just Talking podcast, will moderate a panel discussion and live chat. The conversation will take place live in a google hangout and on twitter.

The goal of the conversation is to peel back the curtain on the Medicine X ePatient program. What are ePatients, who should apply, how does the application process work? What is it like to attend? How can one manage health concerns while at the conference? And, if you have questions of your own, the panel will be glad to address them.

The panel will also discuss a new track, being launched at Medicine X 2013: the Leadership Track.

The Leadership Track provides a unique opportunity for ePatients to attend Stanford Medicine X and further develop the skills, knowledge and experience necessary to become the next generation of ePatient leaders.

Meet the Panelists

The Details

What: Medicine X ePatient Q&A

Where: Google Hangout & Tweet Chat Google Hangout - you can view the hangout live on the Medicine X YouTube channel. NOTE: viewers will not be on camera, only the panelists will be shown (so it’s ok to show up in your PJs).

Tweet Chat: Simply search for and append #MedXeP to tweets. Alternatively, you can use a tweet chat service like TweetChat.com

When March 6th 2013 at 9p–10p ET / 6p–7p PT

Then what? You apply to the Medicine X 2013 ePatient program!

Empathy: a designer’s best trait

The clip above comes from a british series called Blue Peter. Blue Peter is show airing in the UK for school-aged children; its focus is hands-on projects. Imagine Mr. Rogers meets Mr. Wizard.

The rest of the video is worth watching for another reason. Great designers are highly empathetic. It’s a chicken and egg thing. Watch Ive’s expressions as he reviews the designs children sent in to the show. The things he applauds and latches onto give him an emotional reaction. He’s touched by the art in one girl’s drawing and unique shape of a boy’s backpack design.

Howto: turn your favorite healthcare journals into audiobooks for on-the-go listening

Last week, I had a twitter exchange with healthcare geek and wonk Emma Sandoe. She was carving out some time to work through the latest edition of Health Affairs.

I’ve always been an aural learner. I find it easier to listen than to read for long periods of time. I promised Emma I’d send her my workflow for turning written text from the web into an audiobook, of sorts, for on-the-go listening.

In college, the educational support lab had a Kurtzweil Reader. The reader was a glorified scanner with a text-to-speach engine invented by Ray Kurtzweil. I’d sit in lab for hours, scanning pages and turning the reading speed up 350 words per minute. At 350 WPM, a 1990s computerized voice sounds a lot like random nose. What’s cool, is that even at that speed, our brains can actually pick out the words. It was cumbersome, but it helped me get through novels and history primary texts when I’d put off reading until the last minute.

Kurtz Reader

My preference for listening versus reading has, largely, stuck. Today, my aural obsession is less driven by a need to cram —although the underlying learning disabilities are still present —and more from how we get written text nowadays. I can’t stand reading much more than 1,500 words on a computer and e-readers aren’t much better. Since printing isn’t a very eco-friendly option, I usually convert things I want to read into audio and take them with me when I commute to work or walk the dog.

I’m a died in the wool Mac user. Here are my work flows for converting web pages, PDFs and articles into spoken text.

Mac

In recent versions of Apple’s OS, Apple have made it quite easy, although somewhat hidden to get a spoken track of text.

The built in method In OS X 10.7 (Lion) and 10.8 (Mountain Lion), it’s pretty simple.

  1. Highlight the text
  2. right click (two finger tap, or control+click)
  3. in Services menu, select add to iTunes as Spoken Track add to itunes

The benefit of this method is its extreme simplicity and iTunes integration. Within 90 seconds, you have a new track in your library with the spoken audio of the text in question.

The downside, is it lack of control. Apple’s built in service uses speech settings from your system’s preferences. prefs And, if you are fiddly like me and want something read very quickly, or in another voice, then another method may appeal to you.

The app approach

There are about 5 credible speech apps in the Mac OS X app store right now. I’ve tried them all. You are welcome. None offer a spectacular user experience. Speak It! is the standout of the lot.

Speak It! offers some different voices and enhanced settings. Speak It!’s voices are not as polished as Apple’s, although the british voices are nonetheless enjoyable. Speak It! also has the ability to adjust the speaking rate on the fly.

SpeakIT

Speak It! now integrates with Apple’s Services architecture, so moving text into the app is as easy as using Apple’s built in text to speech.

  1. select the text you wish to have spoken
  2. right click on the text
  3. in the services context menu, select Speak It!
  4. within Speak It!, you can listen on the spot via the play button, or output to iTunes.

SpeakIt context

Tips and tricks With whichever desktop method you chose, here are some tips which may help refine the process.

  • If the website offers a print view, it may make it easier to select the entire article.
  • Once you have the files in iTunes, the easiest way to sync with your iPhone is to drag them from the library, onto the icon of your iPhone in the iTunes sidebar.
  • PDFs also work, but be careful not to get copyright and page numbering info, it may require copying and pasting text from each page into Speak It!

iOS Method

If you live on the go with your iPhone or other iOS device, you can whittle this workflow into something even more streamlined. But, it requires a bit of setup first. Voice Dream Reader is a fantastic app which allows users to open a PDF or pull articles from an Instapaper feed, and that’s where the magic happens.

What you’ll need:

For those unfamiliar, Instapaper is a fantastic tool for clipping webpages for reading later. It strips them of ads, flashing graphics and unsightly fonts. You get a very readable black text on white page. The iPhone and iPad clients are fantastic too.

You save pages from the web by clicking a bookmarklet in your browser.

pre clicking my ‘insta’ bookmarklet saves the webpage to my Instapaper feed

post Instapaper briefly paints the page black to indicate it has been saved

Once you’ve signed up for Instapaper, download the Voice Dream Reader app. Voice Dream Reader has the ability to add your Instapaper account.

  1. launch Voice Dream Reader, you may have to add the free Heather voice, which takes a few minutes to download.
  2. after the intro screens, click the settings cog in the lower right settings
  3. select Instapaper and add your account info
  4. refresh the article listing by clicking the refresh button reload
  5. you can control the voice speed and other settings by tapping the voice button settings voicerate
  6. when you are ready to listen, tap to open an article and then tap the play button.

The great thing about either of these methods is how seamlessly they integrate with how you already listen to audio. In my case, whether I use the iTunes/mp3 method or the Voice Dream/Instapaper method, I can play the spoken text back via headphones on a jog or in my care via bluetooth.

The one where I sketchnote some big personal news...

I don’t mean to toot my own horn, but let’s be honest, it’s hard to top sharing news through the media of 80’s sitcom themes. With that bit of self-imposed pressure in mind, I’ve been sitting on some news I’m excited to share. The problem has been: how to share it? My wonderfully supportive and creative wife Susan, suggested a sketchnote. So, without further delay, I present to you Nick’s update sketchnote

sketchnote: making a move

I know. I mean, I’m modest, but it’s pretty incredible, right? Now, now, please don’t compare me to Monet or Picasso. Yes, I see the resemblance….

Oh. What’s that? It’s not good? The drawing doesn’t make sense?

Hummmm.

Ok.

You see the hospital, right? It’s the thing on the left. It kinda looks like a hospital right? Never mind, it’s a hospital. And then in the middle, that’s me wearing my smarty pants designer-style glasses. They don’t have frames, I’m told that’s something designers like. In the bubble, that's me thinking about empathy and innovation (a CF light bulb). And over on the right, those are people. They could be patients, families, visitors, or caregivers. After all, we’re all likely to be at least one of those things during our lives.

Now, see the arrows?

That’s right! In January 2013, I’m over-the-moon to report, I’ve accepted a role with Frontier Health Consulting. Frontier Health is a new startup consultancy and design firm focused on improving patient experiences. I’m coming in as the lead experience designer. It is, frankly, a bit of a dream role.

Along with a small core group, we’ll be working with healthcare providers to inspire and support patient-centered design, spaces, processes, communications and experiences.

Moving into the consulting world wasn’t an easy choice. It means leaving the provider setting where I had the opportunity to affect staff and patient experiences directly. But the truth is, right now in the industry, those opportunities are too few and far between for someone who thrives on them. And, we need that focus more than ever. We’re making the turn, and, as an industry, acknowledge  the importance of patient experience; but, today it’s rarely something provider organizations dedicate entire roles and teams to.

For me, Frontier Health represents a chance to have a bigger impact, and on a bigger scale. We’ll be inspiring, coaching and supporting whole organizations. We’ll be working with patients as expert resources. And, if we are successful, we’ll be touching a lot more lives, more quickly. I can get behind that!

What’s all this mean for Susan and I logistically? In the next few months, we’ll be slowly migrating back towards Richmond. We’re excited about that, although we’ll be sad to leave Charlottesville and our friends here. But, as we pointed out when we moved here, we’re only an hour away.

And, because I acknowledge 80s sitcoms are still the best means to convey anything, I leave you with this gem…

Rewarding & Protecting Patient Experience Mavericks

Yesterday, my friend Steve’s post prompted me to write about finding and protecting time for patient engagement. Specifically, I wrote about how we, as healthcare leaders, need to change our metrics, priorities and reward structures for people providing patient care. I also wrote about finding time in the patient flow for providers to be empathetic; to meaningfully engage with patients. I’m lucky to have such forward-thinking friends. Today, in a discussion spanning Facebook and comments on this post, my friend and healthcare culture champion, Liza Bernstein pointed out two very important things: actions are more powerful than scripts, and empathy within healthcare organizations matters too.

I’ve been wanting to build on this theme of making room for empathy, so we’ll call this the third in what appears to be an ongoing series.

I’ve seen many healthcare organizations put a lot of time and effort into scripting customer service interactions. There are several problems with the scripting approach. Chief among the weaknesses is how transparently impersonal scripting is. For instance, one of the things I see scripted quite a bit is listening to someone and then repeating their line back to them in an attempt to fake active listening. The idea works, it's the execution which usually comes off as lack luster, since it's scripted, people tend to repeat back exactly what they heard.

I outlined that root of this problem in my last post - when time is short and demands and rewards focus on number of patients seen per day (or hour) rather than experience, guess what gets cut? The script. Or, at least when lines are delivered, they are done so unconvincingly.

We’ve all had that experience - the one where the telephone rep rambles off a line at the beginning of the call and you can tell they’ve said it a million times. We see it in restaurants, and with airlines. Really? You are over the moon that I chose to fly with you today? Perhaps I’m being a tad cynical. But the point is, we all can tell when someone is feeding us a line, so why would we think our staff will deliver a line any differently? Well, as it turns out, there’s a key to all this: stop scripting.

Scary, right? What if someone goes rogue? What if they say something we haven’t approved? And that is exactly the point. It turns out, people are generally better at coming up with their own wording and actions than those we script for them. At one large health system I worked with, we found that suggesting phrases and actions was a good start. Although, ultimately, we had to give people the latitude to do what they thought was in the best interest of the patient. Sure, that means giving up some control, but the rewards far outweigh the risks.

A lot of organizational culture is about what organizations and leaders reward. As I mentioned previously, if we ask staff to repeat customer service phrases, but pay and reward based on something else, we are sending mixed messages. Sometimes the messages we send are loud and clear, even if they are the wrong messages. I remember one hospital I consulted in years ago where there were the message to employees was clear. If employees deviated from the process established to promote throughput in the OR, it meant a trip to the boss’s office for a reprimand. It’s nice you want to hold that patient’s hand, but we’ve got other cases stacked up, and that’s not what you are here for. That’s a pretty extreme example, but illustrates how we can build cultures which actively discourage empathy.

The right way, it turns out, may be in doing exactly the opposite of the hospital I referenced above — we need to reward the mavericks and promote the kinds of patient-centered actions we are trying to script. For instance, at Bon Secours, twice a week, our daily huddles featured stories about staff going above and beyond. We sought those stories out. The point was two-fold: First, reward the independent action someone took. My co-worker, so-and-so parked a patient's running car because they ran into the ER to find a family member… or Nurse Smith called me after my visit just to ask how I was (sometimes it’s the small things). The second reason we shared those stories was to model the behavior. In reading them across the entire organization, we told every other employee you are allowed to do things like this, in fact, we want you to! That’s how you protect mavericks.

Now, just imagine if we paid bonuses based on those kinds of stories rather than raw productivity? But that’s another post for another time…

The second part of Liza’s comment plays directly off of this idea of independent, empathetic action I’m proposing we protect and reward. Liza suggests there is something very important about being empathetic to those who work in healthcare. It turns out people value autonomy in how they conduct themselves. In his excellent TED talk, Barry Schwartz discusses what happens when we strip employees of practical wisdom, or latitude to think for and conduct themselves within reasonable parameters. (Hat tip to Lisa Fields for hipping me to Mr. Schartz’s work). In a paradoxical way, isn’t valuing and rewarding people for their independent empathetic actions a form of empathy itself?

What I mean is this: if we care about how the work of delivering care is done, we need to allow the people who were drawn into the field because they care, enough room to actually be caring. And, we need to encourage, reward and protect them for caring.

$1 trips around the sun

Today, Facebook will remind friends and family I've survived another trip around the sun. I'll be sincerely grateful for your well wishes but I have a proposal. Rather than wish me happy birthday, would you consider donating $1 to any worthy cause of your choice? When in doubt, how about The Red Cross?

Learning about the homeless

I can’t exactly call this an experiment. I don’t have a hypothesis, and there are no controls. It’s not exactly a social study either. Mostly because I don’t even know what that means. If anything, it’s driven out of some part of my deeply flawed brain, the part that craves the biofeedback satisfaction of smug do-goodness coupled with genuine curiosity about the human condition. Here’s the deal, yesterday I took out some cash in twenties from the bank. Let’s say it was a sizable chunk. It’s now in my pocket, daily. (please don’t rob me.) I’m going to give $20 to every homeless or otherwise needy* person I see between now and Christmas or whenever the cash runs out. We’ll see which happens first.

Why am I doing this? I’d like to think it helps someone. $20 isn’t going to buy them the suit which gets them the job. It may, in fact, buy them the tall boy of PBR and a pack of smokes. That’s ok by me. What do I know of being homeless? Maybe that’s the best thing in the world when you are sleeping on the street. I don’t care. No, I’m doing it because I want to better understand a whole group of people I know very little about.

Here’s what I mean.

The other day I met Colin and his puppy Conner. Well, i kind of met Conner. He was too scared to come out from underneath his blanket. Colin’s sign asked for help for him and his dog and said he wouldn’t be able to see his family for the holidays. I sat and talked to Colin for all of three minutes. He told me he was from Charlottesville and that he was now living on the streets. He said it was cold at night. I’m sure it is. I made a donation in his plastic food container turned bank account.

When I walked away, I realized I don’t have a clue how to talk to someone who is homeless and how to speak in a way which is not totally condescending. So, if there’s an experiment or study in this thing, it’s that $20 seems pretty reasonable to give someone while they help me sort my stuff out.

Next time, I might ask how the person came to be homeless. Is that ok to ask? I don’t know! Maybe I should ask hey, besides this cash, is there anything I can do for you, anything you need? What do I do if they say “yeah man, how about a job!” or “could you go down the street and buy me a burrito?” Do I really want to go buy someone a burrito? I don’t know!

So, I’m going to keep trying to start conversations until I have a better sense of how people come to find themselves without a home, what they need and what the right way to speak to them is. And, when I leave $20 in their change cup, I’ll be assuaging my own flawed psyche, hopefully helping these folks, and otherwise compensating them for their time teaching me a thing or two about homelessness.

From Elsewhere: The Best Medicine For Fixing The Modern Hospital | Fast Company

Hospitals were designed for the wants and needs of doctors and hospital administrators. Patients werent ignored--but they werent top priority, either.

via The Best Medicine For Fixing The Modern Hospital | Fast Company.

Today's Fast Company post nails an essential problem with healthcare. The article focuses on architecture, although the quote above is really applicable to almost every part of how we deliver care.

Other industries, particularly dot com startups, know the term user centered design. It's a simple concept. What does the end user want?  Think about the best hotel you've stayed in, or something as simple as the famous Oxo vegetable peeler. What they have in common are roots in user centered design. They were created by thinking how will guests move through this lobby? Where will they sit? Is it comfortable? Quiet? Is there free wifi?  And, in the case of the peeler, how does it feel in your hand, could someone with limited grip strength hold it?

The Fast Company article makes a very compelling point. It's not that healthcare has ignored user centered design entirely. It's just that our definition of the end user has ignored several key constituents: patients and staff.

Ok, I added staff, but I believe it to be true. Just ask a nurse. Nonetheless, the point is clear, we've got to involve patients and staff, along with doctors and us admin types, in the design of the processes, spaces and things in healthcare.

Sven, that's S V E N - a story about voting

I arrived at my polling place at 7am this morning. It was exactly 32f according to my car’s thermometer and the line outside looked to be at least an hour long. I waited, tapped my feet, jumped around a little and inched towards the warmth. The line finally reached the door, and streams of lukewarm air started to wrap their wisps around me. I started to thaw. Seated next to the line was an elderly gentleman holding what looked like how someone from the 1960s might envision a tablet computer - huge, wires dangling, with four large buttons and no touch interface. The polling worker was trying to help this guy vote. Clearly he wasn’t understanding, so she did what most people do when someone doesn’t understand - she repeated herself, only louder.

“You push the red button! OK?!?”

He finished voting and with a satisfied look, asked if he could sit there a while longer. He motioned to his cane and said “I live a few blocks from here and it’s pretty cold out - can I sit here a while longer?”

The polling worker obliged with a smile and handed him an I voted sticker.

I stood in line, got a number and hit the booth. Turns out the 1960s tablet is actually the de facto modern voting appliance. (This is when I learned the screen was not touch sensitive.)

When I finished, the gentleman was still sitting patiently. So, I asked him if he wanted a ride. He accepted and we hit the road.

I offered my hand, “If I’m giving you a ride, I should introduce myself, I’m Nick.”

“I’m Sven. Yep, that’s a real name. S. V. E. N.” He spelled it to make sure I understood. “That’s what the doctor named me - he was Norwegian or something - and my mom liked it. My dad didn’t care much either way.” He looked Norwegian and had a striking resemblance to C. Everett Koop.

He explained he was quite hard of hearing. The scabs on his face and several hospital bracelets suggested he also had some health issues. It turned out he lived about a mile from the polling place.

“Yep, this is an interesting city… I’ve only been her for a little while,” he offered.

“Oh yeah? Us too, we moved about 8 months ago. How long have you been here?”

“Oh, then I’ve been here a lot longer than you I guess.”

“Yeah? How’d you come to live in Charlottesville?”

“Well, I was born in New York and was a woodworker all my life. I ended up in Europe - England really, I was a stone mason there and then did some work in Europe proper for a while….”

My car does that annoying thing where, after a short distance, it beeps incessantly if someone doesn’t buckle their seatbelt. It started clamoring and he fumbled for the belt.

“I used to know about modern things…I guess this is a good example… I flew jet planes in the Navy. There was a time when I knew all about modern things…but not any more…”

By this point we had reached his apartment building. I would like to have heard more of Sven’s story. He seemed like a neat guy with a neat history. He thanked me for the ride and I drove off. I don’t know who he voted for, and don’t really care. I’m just thankful I live in a country where we are free to walk to the polls, free to offer a stranger a ride home, free to hear their story and free to vote for whomever we want.

Experia Patient Experience Round Table - day 1

As promised today at ExperiaHealth's Chief Patient Experience Round Table event, here's a quick link to the Together We Can Make It Better story  I'm looking forward to exploring some of the ideas from today —What an amazing group of people who are waist-deep in trying to make patient experience a top priority in healthcare!

Quickly, looking at my sketch notes, a few themes emerge:

  1. I cannot draw or write longhand at all — seriously, its embarrassing. Why would I post these images?
  2. We have to change our priorities - stop giving staff & patient experience lip service, while holding staff and providers accountable for metrics like volume, revenue and coding. We need to have the courage to do the [experience] work and make it a priority.
  3. Measurement counts, but are we measuring the right things on the right level? Maybe patient experience should be measured at the maverick level, not the global level.
  4. Vulnerability is essential
  5. Gratitude is the key to happiness