This New York Times site can determine your home town based on 25 questions.
Wouldn’t it be cool if we applied the same algorithms to determining health conditions? What if 25 questions could reasonably predict someone’s risk for serious illness?
Viewing entries in
This New York Times site can determine your home town based on 25 questions.
Wouldn’t it be cool if we applied the same algorithms to determining health conditions? What if 25 questions could reasonably predict someone’s risk for serious illness?
There are things you just don’t do. You don’t put metal in a microwave. Never drink a Coke and eat Pop Rocks. Forget about feeding Gremlins after midnight. And absolutely don’t arrive 36 hours before a marathon in another country.
For those of playing along, that’s called foreshadowing.
I arrived in Paris around noon on Friday. Paris in the Spring is, well, Paris in the Spring. There’s a reason there are songs, movies and expressions about the Parisian springtime (granted, they are mostly in French, but trust me).
Everything is a lovely shade of pale greens and pinks and white blossoms. The willows by the Seine shed the chaff of their buds in a blizzard of light wisps. Couples canoodle, dogs trot a little lighter in their steps and rosé wine appears on outdoor tables.
I dropped my stuff at my hotel. After a stroll around les Jardin des Tuileries I turned my aim back towards the 6eme. Saint-Germain-des-Prés is my adopted home in Paris. I know its winding streets and juxtaposed upscale-meets-bohemian character as well as I know my neighborhood in Richmond. Saint Germain is also home to what I consider to be the best Irish bar outside Dublin. I had bite and a pint or three and called it an early night.
The race expo was huge; think Atlanta airport, but full of runners. And that’s no surprise. 50,000 lean, mean, quick stepping machines signed up to run the 42.25km course. Part of the process involved handing over a signed medical form from your doctor. There was some nuances lost in the translation of the form, and indeed the process itself. American physicians, short of approving kids for school sports, aren’t accustomed to filling these things out. My trepidation about my form’s validity were assuaged when a young volunteer traded my form for a race bib.
I wonder why there’s a foam rubber sponge in the race bag? Welp, won’t be needing that…
I picked up a few souvenirs and headed back towards the heart of town. The expo was held at one of the city’s large convention centers, a few metro trains and a bit of a walk from my hotel. Paris is known for being a walking city, which is great when you are working off that baguette and patê; not so great when you are attempting to save every joule of energy in your legs.
That evening, I went to the restaurant on the first floor of the building I once called home. Aux Charpentiers is a venerated, traditional restaurant in the 6eme. The waiter and chef were obliging to my request for a vegan meal, although I’m fairly sure the laughing I heard in the kitchen was at my expense. Would monsieur care for a glass of wine? Why yes, monsieur certainly would! One glass won’t hurt my run, right? And hey, this is Paris!
On the stroll back to my hotel, I popped into a bakery and acquired a baguette for the morning’s breakfast. I may have also stopped in for another pint of Guinness. Can’t hurt, right?
Get to bed early, you’re advised. Get a good night’s rest they tell you. Don’t stress about the race, they say. I don’t know who they are, but at 3:00 am, as I lay in bed wide awake, on the morning of Sunday April 6th, I could have strangled them with the shoelaces of my running shoes.
The Marathon de Paris embarks from the famed Champs-Élysées, or as my friend Jarrett calls it, the chomps. I was signed up to run with the 4:00 hour pace group, the largest subdivision of the 50,000 runners expected that morning. I arrived three hours early because, well, I was up.
As it turns out, arriving early was wise. The French extend their liberal views on all things bodily to race-day facilities. In our coral of approximately 15,000 runners, there were two portajohns. Two. 1 + 1 = 2. That was it, for facilities with a closed door. But, for the gents, there was a bank of plastic, portable urinals. Imagine, if you dare, a knee-high plastic trough, facing the hoard of people…well, at this point you should probably stop imagining.
So, there we were. 50,000 new friends, forged in excitement and anticipation of heavy legs, swollen feet and soon-to-be heaving lungs, standing in the morning sun’s shadow of the Arc de Triomphe.
The race organizers were apparently smitten enough with a French cover of Mackelmore’s Ceiling Can’t Hold Us to put it on repeat for the morning. For two hours, we listened to Guillaume Lorentz’s version of the jam. The announcers crackled to life. It was time for the pre-race warm up. Like a well heeled squadron of the North Korean army, we pumped our arms into the air, in sync to the beat.
As 9:30 rolled around, our group of 4:00 runners marched towards the start. With the decided lack of ceremony with which every marathon commences, we toed the startling line and were off towards the Place de la Concorde.
My plan for the first leg of the race was to queue up an audiobook. Spoken word should keep me slow and out of my own head. I settled in to Peter Carlin’s bio of Bruce Springsteen and started counting steps per minute.
My goal was to start off around 9:30, maybe 9:00 mins / mile. Our hoard snaked past the Concorde monolith and towards rue Rivoli.
Bruce’s first band, Steel Mill, had a huge following in Richmond, Va. Who knew? Apparently it was the only place they got gigs outside of the Jersey shore…
1…2…3. I check my pace, I’m doing a steady 8:30/mile. Too fast, but I feel fine. Hey, what’s the worst that can happen?
Is that a marching band all dressed like Mario and Luigi from Mario Brothers? Yep, apparently it is!
Oh wow! We’re running along side the entire Louvre museum!
At mile 4, we narrow to squeeze past the crowd and into the expansive Place do la Bastille. I’ve heard people say to be careful about running the chicanes in a marathon. Take too many curves too wide and you add up to a quarter mile to your race. In the Bastille’s 500-foot wide roundabout, it’s easy to see how that could happen.
Paris is flanked on the East and West by two large public parks. At mile 6 we enter the Bois de Vincennes. I’ve had about as much of Bruce’s history as I can take, I’m ready to rock out. When I pull my phone out of my pocket, I see a text from my friend and fitness coach:
I hit shuffle on my Paris Marathon play list.
Top 40 pop helps me turn my feet over faster and faster. Throughout the park, every half mile, there are more preposterously strange musical ensembles. We pass a group dressed like they are ready for a medieval hunting expedition, and they are all playing the french horn. I imagine them, along with the Japanese drum circle, playing along to my mix.
We leave the park around mile 10 and head back towards the city. The course follows the Promenade Plantée, a collection of beautiful shops tucked into the old roman viaducts.
Since Parisian streets can be quite wide, the race directors paint a blue line down the absolute center of the course. It is there, primarily for the elite runners, so they run the shortest, most direct route; a true 42.2km.
I pick up the blue line at mile 10. For a mile, I try and make each step land on the line. Keep on the blue line I tell myself.
I check in on my legs. Feeling ok. But something’s not quite right. I push the idea out of my head.
If you wake up and don’t want to smile…if it takes just a little while…open your eyes and look at the day…you’ll see things in a different way
To take my mind off whatever is creeping in, I decide to focus on the crowd. For everyone with whom I make eye contact, I try and think of something nice about them. Oh how nice, they brought their young kids out to see the runners… For others, it was something like, that’s wonderful, a whole family holding a sign for their dad.
I’m counting on a karmic bonus, and thinking good thoughts has to help, right? Still, you’d be surprised how quickly you run out of nice things and dip into the observations about appearance, those sunglasses look great on her.
At the 20km mark, the Europeans celebrate the race’s halfway point. Now, I’m no mathematician, but 20 is not half of 42.2. I refuse to celebrate their false victory.
A smaller, less ceremonial marker notes the passing of mile 13.1.
Shake-shake-shake-ah-shake it! Shake-shake-shake-ah-shake it! Shake like a Polaroid picture.
Heeeyyy-yaaa! Was that out loud? I think I just sung along out loud!…oh look, there’s the blue line!
Mile 14 has a water stop. The French, ever the ones for elegance and ceremony, don’t hand out cups of water. No, instead they hand out full bottles of French mineral water. With the caps still on. For nutrition, they offer orange slices, banana segments and marshmallows.
Now, at this point, if you are thinking: hey, a full bottle of water and healthy snacks, what’s not to love about that? I offer the following:
That, dear reader, is what happens when 50,000 water bottles are opened, and orange rinds, banana peels, and marshmallows are cast underfoot over the stretch of a quarter mile of cobblestones. It is, in short, an orthopedic surgeon’s dream come true.
It’s alright if you love me…It’s alright if you don’t….I’m not afraid of you running around, I get the feeling you won’t…
Back around the Bastille. The water is doing it’s job. Bruce’s guitar is slamming and I get a second wind.
I prove it all night…
We’re running along the river again. I’ve lost track of what mile or kilometer we’re passing. I’ve run out of nice things to think about people in the crowd. How much further? Damn-it! It’s too early to think that thought!
En mass, we dip off the main road and down to the footpath along the river. Suddenly the crowd is high above us, looking down from the flood walls and bridges. French race supporters, as I’m learning, are an austere lot. Most don’t smile, or cheer. While there is a non-stop wall of people, only a scant few hold signs, or ring bells.
For the first time, I have a straight shot view of the masses of runners in front of me. This is my tribe, these are my people
When I arrived, in my own set of clothes….I was half a world away….Do not fear what you don’t really know…
We enter one of Paris’s underground tunnels. This one happens to be the longest, almost a mile. After a few seconds, things get pretty dark. I take my headphones out so I can hear the cacophony of feet and moving bodies.
Is that…? Naaaahhh. But wait….I think I do hear something….and there seems to be lights….laser lights in fact… and a disco ball…and….fog?
It is at this point where I start to question things. I cannot see daylight in front or behind me. And yet, the sounds of Abba are growing louder the closer I get to what appears to be a discotheque. And there, in the middle of Paris’s longest traffic tunnel, the one where Princess Diana perished in a horrific car wreck, is a mid-race disco.
What sort of Dali-esque nightmare is this? That is the actual thought crossing my mind. But instead of picturing the real Salvador Dali, I keep seeing Adrian Brody pop into my head.
At last, up ahead, daylight breaks. We’re out of the tunnel and back on the streets. The Eiffel Tower is in front of us. And that’s when it all comes together.
In french, pacers are called rabbits, or more correctly, les lapins. Rounding a slight curve, I see the 4:00 rabbit. That’s my rabbit! Survivor’s Eye of the Tiger starts playing.
I’m chasing Monsieur Lapin. My pace recovers.
9:25….9:15….9:00…8:50… I’m shoulder to shoulder with Monsieur Lapin.
Rising up…back on the street….did my time, took my chances… I’m air-guitaring for all I’m worth.
Together, we tick off two miles, me and Monsieur Lapin. Mile 17 turns into 18 and 18 into 19. I might just run this race today….
At mile 21 we enter Paris’s western most park, Bois de Boulogne. Bois de Boulogne is home to Roland Garros Stadium, where the French Open is played. It is also known for its large gathering of transgendered sex workers. And now, it can additionally be known as the site where I hit the wall…hard!
It is a hurting thing…you don’t want to talk about it….pain in your heart, well it’s taking your breath away…
Really, I’m conscious enough to ponder, that’s the song that comes on my iPhone at this moment? Thanks for nothing John Hiatt!
Did I mention my no-fast forward policy? Yeah, I’m regretting some of these song choices now.
We pass a German oom pah band, all in lederhosen, many with a horn in one hand and a glass of Riesling in the other. I kid you not when I say a good number were also holding sausages.
I could be hallucinating.
Mile 22. I’ve slowed to a crawl. I’m trying to put one foot in front of the other. It’s not happening. Not today. pas aujourd’hui.
and I don’t think its weird….that the one thing you fear…is losing the one thing….
I make a pact, a d’accord as the local say. Next water stop, I’m walking. Seriously, not that psych-myself-out-keep-running-BS from the Richmond marathon. This. guy. is. walking!
Why are there still so many people?
Where is that water? Why don’t they drink more water? Why don’t they… and that’s when it hits me. Why don’t they drink electrolytes? There has’t been any Gatorade, no Poweraid, and not a salt-covered pretzel in sight. Where was that oom pah band? Surely they have pretzels. They held out on me!
That’s when I notice runners dipping sponges into buckets of ice water along the course. Where the hell did they get spon…..oh damn it! That’s what the foam rubber sponge was for!
I need water badly. At mile 24 there’s a station. I slow. I stop. I grab two bottles and ask the volunteer to take the caps off. I’m done.
It’s going down…I’m yelling timber….you better move….
I move into a walk-run cycle. I make myself little deals.
If I can get to that lamp post, I’ll walk 100 feet
I couldn’t will my thumbs to reply even if I wanted to. Though, I’m nonetheless grateful for the encouragement.
I start to think about what isn’t working. I keep giving myself permission to fail. Pas aujourd’hui, I tell myself, not today.
Oh where do we begin, the rubble….or our sins….and the walls kept tumbling down….
I start to list off the poor decisions I made. I started too fast. That glass of wine last night, what was I thinking? I regret racing (and setting a PR) in the 10k less than a week before. Absolutely don’t arrive 36 hours before a marathon in another country you bloody idiot!
As we leave the park, Paris is laid out before us. I’m still shoulder to shoulder with 50,000 of my new best friends. Slowing or walking requires darting to the shoulder or grass to avoid being run over. And there’s something different about the crowd. Is that actual cheering?
It is cheering! And its coming from the transgendered community who call the Bois de Boulogne home. They are standing on 8" platform shoes, decked out in Elton John-style sunglasses and they are screaming their heads off.
The blue line! The Blue line is back! I pick my head up and see the Arc de Triomphe in the distance.
through the mud and beer…the blood and the cheers…so if you’ve got the guts mister…if you’ve got the balls….if you think it’s the time, to step to the line….then bring on your wrecking ball!
I’m going to run Paris today. I’m going to finish this race. It’s the first time it feels real. I choke up.
I speed up.
The crowd narrows. More Parisians join in and are cheering. I’m running non-stop. It’s not my ideal pace, but I’m moving forward.
I sprint towards the finish with borrowed energy.
I cross the sensor pad and crash into a wall of other finishers. Many, like me, are dripping with tears and sweat. We push and shove. And there’s more effing cobble stones and banana peels. Oh Paris, I love you!
Je n’ai fait celle-ci plus longue que parce que je n’ai pas eu le loisir de la faire plus courte. —Blaise PascalTranslation: I have made this longer than usual because I have not had time to make it shorter.
A while ago I was challenged to write about what an Apple-like approach to healthcare might look like. That challenge has been weighing on me. For starters, we’re all over Appled aren’t we? Maligned anecdotes about Steve Jobs and the iPhone make their way into almost every presentation remotely related to innovation or technology. Triteness aside, I’ve been stalled because Apple is really a philosophy, not a series of steps or lessons learned. (Although, they are nonetheless methodical.) Instead, what I’ve been kicking around in the ole noggin are three notional predictions, which I’ll assert are inevitabilities which will fundamentally disrupt healthcare delivery as we know it today.
What follows is about as Appley as I’m likely to get. Despite big-bang product launches, Apple actually plays the long game. They introduce small features into products to affect user behavior years before a flagship product takes advantage of those reprogramed behaviors. That’s how they disrupt.
I believe there are three meaningful, unstoppable trends, in our current world which will significantly alter healthcare. The steps taken towards these inevitabilities, along the way, are the what will define the innovators and leaders. They are the ones who see this future and know how to drive towards it. The three trends are:
Don’t worry, I’m not going to leave you hanging. I’ll attempt to rationalize each of these points and explain why, particularly when considered as a bundle, they are a powerful force for disruption. And to prime that pump, we have to talk about Gordon Moore.
Moore, the co-founder of computer chip foundry Intel, in 1965 posited computer chips would double in speed every two years. Moore’s Law The speed increase, according to Moore, was inevitable; a fact, it will happen.
Before we put on our propeller hats, and geek out over processor speed, suffice it to consider a few examples of how this actually plays out. Sure, computers have gotten faster. Remember that first home PC you had, with its external disk drive and green-screen monitor? What? You aren’t old enough to remember that? Get off my lawn! We also see Moore’s Law in effect in the general progression of technology. Consider how cell phones have advanced, exponentially, since the 1990s.
What Moore’s Law describes is a general absoluteness about the advancement of technologies and processes. It might be thought of as Newton’s First Law applied to manufacturing and society, rather than mass. In other words, some things continue to advance, and that’s the fact, jack.
The three prognostications I’ve laid out are examples of trends which I believe will follow Moore’s law. They will continue, they will evolve and they’ll be an increasingly powerful force on healthcare.
The internet is a wily enabler. Its vast interconnectedness, often terminating at the tips of end user fingers, works like a stream of water slowly eroding mountains of rock. When we step back and observe with some time or distance, we call that erosion disruption. Nearly every industry has been affected by the rapid increase in our technological interconnectedness over the past 20 years. Although, how we view the effects depends entirely on if you are the stream or the mountain.
Consumers are the streams. Customers, end users, call them whatever you like, they are the ones seeking the path of least resistance. In healthcare we call them patients. They want what is most effective, simple, desirable and affordable to them.
Mountains, on the other hand, prefer not to be moved. It takes a long time to build up a granite wall. And, according to Newton, an object at rest tends to want to stay put. Companies and industries —intentions and altruism aside —are often large, resting forces.
There was a time when, if one wanted to travel, particularly on a complicated international trip, one used a travel agent. Sure, they still exist and can provide a great deal of value, but according to a 2010 survey Travel, nearly 78% of airline tickets were purchased online. 40% were sold directly through the airlines and 38% were sold through online channel partners (think Expeida and the like).
Anyone who remembers the days of travel agents remembers the travel industry didn’t love this trend at first. But consumers did. Travelers showed what they desired was affordable, simple, direct access to shop for travel and make their own choices in the comfort of their own homes.
There was a time when we had to go to a shopping mall for things like books, wrapping paper, and new jeans. Enter Amazon.com. There was a time when buying music meant buying a physical object. Enter Limewire and Gnutella. And you thought I was going to say iTunes didn’t you? The online music sales industry grew out of a consumer hack. People wanted to download music because it was easy! It was the path of least resistance. The desire path as designers say. Figuring out how to sell it online only came after the stream eroded a path through the mountains.
The internet provides us the tools for increased consumer empowerment. If we look to Amazon, iTunes and Expedia, we affirm our culture already favors consumer empowerment. Today, we see this in healthcare selectively, although it is more evident on the fringes.
In the main stream delivery system, providers are implementing patient portals to view notes, lab results, and share some limited communication with their providers. Avant-garde and large provider organizations with sophisticated resources are starting to crack that most desired nut: online appointment scheduling (see above re travel trends).
As consumers of healthcare observe what they can do in other industries, they begin to seek those same experiences in healthcare. These desires include online scheduling, easy asynchronous communication (think emailing your doctor), one click prescription refills, etc. Put it this way, if you are given the choice between shopping on Amazon or driving across town, waiting for an hour, disrobing, waiting some more, and walking out with a piece of paper you now have to physically deliver to another building and wait some more…. well, you get the point. The stream is starting to eat away at the mountains.
On the fringes of healthcare, we see some examples of consumerism empowerment in action. Several companies are experimenting with online, Skype-style doctors appointments. We also see empowerment taking off among quantified selfers, those of us who casually (or…cough…obsessively) track data about our steps, diet, sleep, etc. The companies who provide those services are inherently customer-focused and provide easy to use tools and direct services to customers.
For a last example, consider the genetic testing company 23AndMe.com. I’ve called 23AndMe.com the Netflix of spit. You go to their website and purchase a kit. They mail you the kit, you spit into the test tube and return it in the provided mailer. A few weeks later, you get a rich genetic profile. Setting aside concerns about their process and the presentation of the data, it doesn’t get much easier than the 23AndMe.com process. You never leave you house.
It is simply inevitable. As a matter of culture, we will continue to seek out paths of least resistance to enable consumer-centered solutions.
Patient experience, the movement around re-centering processes and healthcare deliver around patients, is an example of this trend towards true empowerment. And, while it is an early bellwether, many who are deeply involved on the front lines of patient experience will attest, it’s still about getting a proverbial seat at the table.
Real empowerment comes when consumers of a service are able to get what they need or desire in different ways; ways which short circuit the people who didn’t let them sit at the table in the first place.
A friend recently remarked: “the real economic product of the healthcare system is a diagnosis.” In many ways, that is in effect what is being purchased. Without a diagnosis, or a working hypothesis, doctors cannot order labs, or tests or write prescriptions. A diagnosis is the widget which the factor produces.
Clinician readers may take rightful umbrage at the following oversimplification. A diagnosis is the logical conclusion of a series of data inputs. Blood pressure + lab results + family history + observational data = diagnosis. Are there other, extremely important, more nuanced points to consider when making a diagnosis? Of that, I’m 100% positive. Nonetheless, a diagnosis essentially a distillate of data points.
Take, for example, strep throat. The generally accepted way to determine strep is through a rapid strep test. The rapid strep test can be done in a doctor’s office and provides results which are definitive enough to conclude a diagnosis. The data point is the test result + your sore throat and fever. Your doctor then writes a prescription for whatever is generally regarded as the best antibiotic for step these days.
What happens when a version of that rapid strep test is made available to home users? If the test has the same degree of accuracy, isn’t the home diagnosis just as valid? What if the testing device could electronically transmit its diagnosis to a pharmacy? Couldn’t then the pharmacist -if our regulations allowed it- dispense the appropriate medicine?
By the way, this isn’t pie-in-the-sky stuff. This year, the Scanadu device will come to market. Scanadu is an in-home diagnostic device which includes a small, hockey puck-like sensor and an in-home urinalysis machine. Scanadu have also announced ScanaFlu, an in-home rapid strep test. How long do you imagine it will take before Scanadu enables patients to transmit those in-home results directly to providers and pharmacies?
Dr. Petrov: [Ramius has taken the Political officers Missile key and kept it] Sir! The reason for having two keys is so that no one man may… Captain Ramius: May what, Doctor? Dr. Petrov: Arm the missiles Captain. Captain Ramius: Mmm, thank you for your concern Doctor
I get it. There are laws and stuff about this today. Yawn. #SorryNotSorry. They will change. It’s inevitable. Our laws, regulations and processes often evolve to match the current state of the art. See also the power of consumerism. When the traditional players don’t keep up, the stream finds a way to erode the mountain. Maybe the local mega pharmacy won’t accept the Scanadu diagnosis, but I’m sure an enterprising mail order pharmacy will.
We see further support for the automation and commoditization of diagnosis in IBM’s Watson. From IBM:
Physicians can use Watson to assist in diagnosing and treating patients by having it analyze large amounts of unstructured text and develop hypotheses based on that analysis. Watson can then identify the key pieces of information and mine the patient’s data to find relevant facts about family history, current medications and other existing conditions. It combines this information with current findings from tests, and then forms and tests hypotheses by examining a variety of data sources—treatment guidelines, electronic medical record data and doctors’ and nurses’ notes, as well as peer-reviewed research and clinical studies. From here, Watson can provide potential treatment options and its confidence rating for each suggestion.
Hummm….that sounds an awful lot like automated diagnosis to me. But it will never take the place of a physician’s expertise, right? There was a time when pilots didn’t have GPS instrumentation. Today, I don’t know a single pilot who would consider going up without a GPS. Can you still fly a plane without GPS? Absolutely. But GPS allows you to focus on actually flying, rather than navigating.
If Watson can make an accurate diagnosis, what does that change? It means patients can know their diagnosis without leaving home. They can research treatment options, if they so desire. They can research which providers are the best at treating their condition. Providers, in the mean time, can start treatment plans, rather than spending time on the diagnosis. Pretty soon, both patients and providers are copiloting the plane, rather than looking at the map.
When we apply Moore’s law to something like 23AndMe.com, Scanadu and Watson, its not far fetched to imagine a small bluetooth gizmo into which one feeds a single hair. In a few seconds, you get genetic data on your phone. A few seconds later, a cloud service renders a diagnosis. Within five minutes, an evidence-based, personalized treatment plan is emailed to you. But Nick…DNA sequencers are huge and expensive and the tests take forever to run… To which I offer the cell phone picture above.
At this point, there is also an obvious connection between these first two themes. If consumers of healthcare desire more empowerment and autonomy, and we short-circuit the traditional process by putting reliable, accurate tools in their hands, then they also become more responsible for the end result. Isn’t that what we in the empowerment movement so desire? Isn’t that also what providers who speak about patient activation also want?
Just as technology has enabled connections which make our world feel smaller, so too have advancements in travel. From the US, we can be in Europe in less than a day. We can fly from coast to coast in less than six hours. And, increasingly, people are considering if a few hours by car or plane is worth it for better, newer, or more cost-effective treatment options.
Consider the following:
In 2012 Lowes hardware stores inked a deal with Cleveland Clinic. Cleveland Clinic became the sole provider for Lowes employees with specific heart conditions. The value proposition goes something like this: Cleveland offers a recognized name in quality —we’ll set aside an analysis or discussion regarding the validity of that assumption —and Lowes offers a statistically predictable amount of business. A special price is agreed to. Lowes, even when covering the travel cost for employees and a family member, saves money and gets better quality results.
Aravind Eye Hospital in India does more eye surgeries than any other place in the world. It treats nearly 2 million patients a year, for remarkably less than most hospitals in the United States, and it treats nearly two-thirds of those patients for free. It is generally regarded as one of the best facilities for eye care quality in the world.
Rochester Minnesota is a town of roughly 150,000 people. Most towns that size which are fortunate enough to have a towered airport, have runways averaging 6,000 feet. The main runway at RST is over 9,000 feet long and capable of landing medium sized international jets. RST also has immigration services for international flights. What’s in Rochester that warrants a such a sophisticated airport? The Mayo Clinic.
Meanwhile, where I live in Richmond, Virginia, we have 11 licensed hospitals. Eight of which are large, traditional community hospitals and one is a large academic medical center. Of those eight, seven offer most of the same services: OB, general surgery, diagnostic imaging, orthopedics, emergency care, etc. At the risk of sounding anti-capitalistic, does it make sense for seven hospitals to all do the same thing, with different processes, standards, outcomes and costs? Or might I be better off flying to India for my eye surgery?
My point in these vignettes is to consider the globalization of treatment options. As our world gets smaller, our ability to specialize treatment options and concentrate them into true centers of excellence becomes not only a reality, but an important consideration.
In fact, the VA has had this model for many years. The VA recognizes it is better for quality and costs to concentrate expert providers in key centers, and move patients and families to those centers for treatment. We also see this today in cancer care. May patients, albeit most often those with resources, consider traveling to the Kennedy Center, Sloan-Kettering, MD Anderson or Stanford. Steve Jobs famously traveled to Tennessee for his liver replacement.
See! I told you every discussion of disruption had a mention of Steve Jobs.
As an inevitability, these high-volume, high-quality centers will increasingly emerge. Insurance companies will recognize the bang for their buck and deals will be stuck where airfare, hotel and treatment are bundled into one payment. Need a knee replacement? Your options may be Denver, Bar Harbor and Juno. Or something like that…what do I know, I’m no cartographer.
There will, of course, be intermediate steps along the way. You might travel 2,000 miles for a knee surgery. But you probably aren’t going to get on that flight 3 times a week for physical therapy. Some things, like politics, are local. But, as our national discussion of quality and cost evolves, we’ll be forced to ask when volume, specialization and concentration matters. Maybe all hospitals don’t need to offer the same services.
These three inevitabilities play off each other, don’t they? We desire consumer empowerment, we’re building the tools to circumvent the system and enable that empowerment and we’re seeking out the best options for acting on that empowerment. These things will happen, because they always happen. The technology will come to enable them, because Moore’s Law shows that it always does. And we’ll broaden our geographic view of our options. After all, the best sushi restaurant I’ve ever been to is in the middle of Colorado. If my Yelp app on my iPhone tells me FedEx can get raw fish to Aspen, we can surely get the blind to India.
I know what you are thinking. Seriously, right now. You are all like how can I make a hard choice between supporting two compelling organizations while encouraging Nick to run an extravagant race in an exotic local?
See, that’s my gift. I’m good at getting inside the minds of people. People like you.
Since you were thinking it anyway, I have an idea. Bear with me here. You’ll probably need your iPhones or Spotify playlist. Go ahead, get it. I’ll wait.
Here’s the deal, I’m running…or attempting to run… the Paris Marathon on April 6, 2014. Yeah yeah, dans les printemps and all that jazz. But the fundamental truth is, among the 49,999 other people sloughing it out, I’ll really be alone. Oh look, I’m at kilometer…wait…kilo-what!? And look, there’s a sign? Or is it a baby smoking a Gauloises? Where am I? …Says the devote francophile.
But, I have a solution to this courir un marathon conundrum of mine. In fact, I’m proposing you come with me. And here’s how it will work:
This will be my first marathon avec headphones. I need some jams yo. In the comments below, you: * suggest a pumped up track and a reason why it matters to you * place your bet…nay…donation amount * you suggest a mile marker and time at which I should listen to said track. For example, you write: Rocky IV Training Montage Song, Mile 14, 1 hour 20 minutes. (First of all, good choice!) * I’ll program it, using my mobile internet communicator device, to play at your proposed time
If I beat your time, you donate. Big bucks people. This isn’t messing around time. If I run the frickin’ Paris marathon faster than either of us expects —and lets face it, I haven’t exactly been training —then you should pony up, right? And, being a free market society, you have two options:
If I fail to beat your song, at the proposed time and mile marker, I’ll match whatever donation you propose *
It’s that simple. Your song, your time/mile marker…if I beat it, you win, if you beat my pace, everyone wins.
Thank you for considering this. Any song, encouragement and, most importantly, donation, you can provide is extremely appreciated. Running, despite its simplicity, is a luxury. There are far too many people who, for whatever reason, don’t get to enjoy this sport. If we can rock out while we race and raise some help for them, then we’ve done a good thing.
Your friend, -N
American songwriter and folk hero Pete Seeger has died.
One of the first songs I remember hearing and learning as a child was Froggie Went A-Courting. It was a family song, sung a bedtimes, upon dad's knee or on walks. ...and he did ride, muummm hummm
Later, in 2006, Bruce Springsteeen —my favorite muscian, bar none —recorded Froggie as part of his Seeger Sessions album honoring Pete.
Pretty hard to deny, Pete Seeger was a musical legend, a rare breed and an unyeilding force on music across many generations.
Two weeks ago, my Grandma Grace and I sat together and discussed life, and how much we meant to each other. She also shared with me —as she had done with her children and other grandchildren —her wishes surrounding the end of her life. There is, perhaps, no greater conversation one can have in life than to tell someone you love how much they mean to you. And there is no greater honor than helping someone honor their wishes.
Engaged, with Grace.
In recent years, it has become tradition in some internet circles for bloggers to post about the One Slide Project on Thanksgiving. The One Slide Project is also know as Engage With Grace.
Its aim is simple, provide a very simple tool for families to discuss end of life wishes. And, taboo as it may sound, what better day to have the discussion than Thanksgiving when we are together with the ones we love.
Yesterday, my grandmother, Grace, passed away peacefully at home. In the weeks before her death, she spoke clearly and openly to each of us about her wishes. She wanted to be at home, with as little intervention as possible. There was no ambiguity about her choices.
While we’re all very sad, and will continue to be so for some time, there is a comfort in knowing we honored her wishes. Knowing her wishes gave us a collective shared purpose in how we cared for her and in how we remember her now. She was also clear about who should make decisions on her behalf and how those decisions should be made. Her doctors supported her choices.
She passed at home, in her bed, surrounded by people who loved her very much. She was comfortable and her dignity was never compromised. Her passing was the definition of a good death, very befitting a woman who lived her life so intentionally and with so much purpose.
Today, as you gather with your family, friends and loved ones, my wish is for you to have the conversation. Tell each other how much you mean to one another. Talk about your favorite memories of one another. And ask each other, when the time comes, how you would like to be cared for at the end of your life.
I promise you will never regret having that conversation.
Stilts, tracker rides, hay forts.
The Lizzard of Oz.
Coconut cake, cheese toast, cranberry sauce.
“A horse bit off my finger.”
Peacocks, armadillos, kittens.
Being together for every Thanksgiving meal of my entire life. Until now.
“NICHOLAS, I DON’T LIKE HOW YOU ARE TREATING ME!” Its an early memory, I was probably five or six, but I remember clearly it was the loudest anyone had ever spoken to me. I started crying.
“Grandma,” I sobbed, “why did you yell at me?”
“Because you yelled at me first and I didn’t like how it made me feel either.” She was right, in the bold defiance only a spoiled 5 year old can muster, I had slammed the refrigerator door in her face.
She paused and then cooed, “let’s make a deal…you don’t yell at me and I won’t yell at you, ok?” It seemed reasonable and I agreed, we’d never raise our voice to each other ever again. A few days later, before my parents arrived to collect me she leaned in and whispered, “this can be our secret.”
And that’s how I learned how to treat people. I won’t yell at you, and you won’t yell at me. I hope I’ve lived up to the promise she and I made. …
When we need them most, memories have a way of retreating to their caves, cowering in fear of being exposed to light and disappearing in spontaneous combustion. Our brains are cruel that way.
Right now, I want more than anything to remember everything. I want to remember every single memory of every visit and every conversation with my Grandma Grace. But there are themes, very clear brush strokes making up one of the most amazing women I’ve ever known.
What follows is an attempt to capture what comes to mind on this somber evening.
She always had a project.
My Grandma Grace was a maker before being a maker was a thing. Every problem life presents was a challenge, a puzzle, to be solved. The farmhouse was always a playground of sorts. You never knew what kinds of projects she had cooking and how you might get roped in.
When the farm moved to its current location, Grandma Grace wanted to line the driveway with maple saplings, mimicking the dogwoods of Dogwood Lane Farm where my father grew up. The problem is that saplings require water. During my visit that summer, we drilled holes in the bottom of several five gallon buckets and placed the buckets near the trunk of each sapling. Every few days, we picked up a big container of water with her John Deer tractor. I’d sit in the tractor’s bucket and fill the pales with water, allowing it to slowly trickle out of the holes and into the soil.
As she got older and the aging process began to present its own challenges, Grandma Grace turned her making skills towards hacking her own life. She built ramps around the house. She made improvised grabbing tools and wrapped kitchen implements in duct tape and rubber bands to improve her grip.
She also designed and built ways to keep us occupied. As young kids, my cousins and I would visit the farm for weeks at a time. One summer, she introduced us to stilts. She had made them from 2x2 posts, some wood scraps for platforms and lag bolts. We spent our time that summer trying to master walking on stilts. She kept joking once we were good enough, she would make us wash the windows. There’s a chance it was not a joke.
I’m convinced most of life’s problems can be solved with things you can buy at Nichols Hardware Store. At least, Grandma Grace could have solved them that way. For Grandma Grace, no problem was insurmountable.
There’s no such word as can’t.
It was a favorite expression, usually offered as a retort.
“Grandma, there’s no way someone can balance on the top rail of that fence. I can’t do that!”
“There’s no such word as can’t.”
At the end of World War II, two young Russian girls arrived on her doorstep late one evening. They had a note from her husband, my grandfather who had been helping place refugees from concentration camps, asking her to care for them. She had two young boys of her own she was caring for alone while he was in Germany. “There’s no such word as can’t.”
Just before my dad underwent a Whipple procedure for his cancer diagnosis, she told us, “there’s no such word as can’t.” I sent friends and family email updates and closed each note with her favorite phrase. A family friend sent us a package of tee shirts she had made with the line printed across the back.
Last week, I ran a marathon. On the morning of the race, I awoke thinking of Grandma Grace; we knew she was growing tired. I clipped the back out of the tee shirt —which reminded me of the day I s my pilots license which has a similar tradition —and pinned the phrase to the back of my race jersey. “There’s no such word as can’t.”
There are stories. So many stories. Never in the history of people has one person had so many myths, legends and tails associated with them. And they are all —ok, almost all —about caring for or giving to others.
In my personal beliefs, heaven and hell aren’t places; there isn’t a fluffy cloud city or fiery burning depts. Rather, its how we are spoken of and remembered. I take comfort knowing my grandmother, our Grandma Grace, will live forever, always being spoken of fondly and loveingly as someone who touched the lives of so many.
For now, as those of us left behind struggle to go on in a world without hour hero.
“There’s no such word as can’t.”
The following was originally posted on Facebook, here. ___________________
Sick of my marathon posts yet? Ok last one. Saved this for last: the 'Thank You' post.
It's rare, at least for me, that one salient truth rings out above the rest. There wasn't a morning when I said, "self, let's run 26 point 2 effin' miles". Instead there were many small moments. There was a script for high blood pressure, someone else's cancer journey, the discovery of my own competitiveness, and some lofty thinking about the general human condition. Those things, apparently, go into a blender and come out as the goal to run a marathon. Although, I have a confession —when I signed up for training, I didn't think I'd actually do it. Then again, it is kind of a dumb thing to do... 23 point 2 effin' miles.
Yesterday was amazing. I'll remember it for the rest of my life. The start was almost a non-event. Michelle Muse walked us to broad street. We pushed our way through the crowd and someone suggested we hold hand like a line of kindergartners. So...we did.
There was no gun shot or otherwise ceremonial start. We just sorta started jogging (pronounced with a soft j, like yogging). Suzanne Spiller set the pace [Thank you Suzanne!], "are we doing this? We're running a marathon." Yep. We were.
[But, we were also in ‘missing man’ formation. “Where’s Pat?… How’s seen Pat?… I texted him last night, I know he’s running…” We were a man down, and we knew it.]
At mile 2, Mary Ellen Kinser snuck up from behind. By the way, we're you doing a scuba dive later? Mary Ellen helped us get our nervous heart rates down. We were cool by mile 3, which is where we passed Jennifer Lemons-Driskill. Thanks Jen for being out there _every_ week, manning the SAGs, always saying "hi" and for looking after my favorite running jacket.
What is it they say? Don’t do anything new on race day? Yeah, about that. I dropped my longstanding armband carrier for my iPhone (and various apps) and opted instead to try my Pebble watch. The Pebble is a so-called smart watch, which isn’t a watch at all, but rather a second display for your phone. For most of my run, it was perfect, showing me milage and pace from the RunKeeper app. But I didn’t expect a very wonderful side effect. Every time a friend like Olivia, Bryan, Marc, Dana or Dennis tweeted, texted or Facebook’ed, my watch vibrated and showed me their virtual cheer. Boom. Speed up!
@nickdawson good luck, Dawson!
— Ryan Smartt (@rsmartt) November 16, 2013
Run @nickdawson Run! Sincerely, your Ortho’s yacht broker.
— Shane (@ShaneJesq) November 16, 2013
— Marc R Katz MD,MPH (@marcrkatz) November 16, 2013
@nickdawson starts Richmond marathon at 8 am this AM. Go Nick!!
— George Dawson (@georgewdawson) November 16, 2013
Jessie and Mallary - wow. You two are my personal MVPs! From mile 2 - 12 we were like finely tuned diesel engine. Speedy, and we turned over the miles one after the other like it was nothing. Every few minutes one of us checked in, "how we doin'? Good pace? Yep!" Monument turned into Westmorland (ah-hum, Ryan Smartt!!!), which turned into Grove, then Maple. We debated, restroom break? Nahhh line's too long. So we kept going. And we kept going all the way down Lee's Revenge, across a foggy but beautiful Huguenot Bridge and down towards Pony Pasture; all the while checking in with, "how we doin'? Good pace?"
The three of us trucked up Riverside Drive together. We caught up with Gail Schechter who was having a fantastic 2nd marathon.
The three of us —Jessie, Mallary and I, pressed on. As we crested the hill and turned on to Forest Hill Ave I confessed, “this is where I started to unravel on my 20 mile training run.” But, thanks to them, we kept on keeping on. Milestone #1, done!
About mile 12.5, I saw my pooch, Ippa, and connected via leash, my dad, George. Never underestimate the huge burst of energy you get from seeing your family! Dad, I’m sorry, but I think I blurted, “that’s my dog!….oh, and my dad!”. The order wasn’t significant. #OxygenDeprivation
We first saw Sue Miyashita at mile 13. Then again at mile 14. “I’m adjusting my music,” she said, “everything from Metallica to P!nk.” Rock on Sue! That’s when we saddled up next to Jersey Boy Ray. Ray’s a machine, keeping amazingly consistent pace. “I’m doing this!” I was excited with him, even if he admitted, during a slough of a training run, to not bleeding Springsteen blood. And that’s when we saw the blue shoes.
At mile 15 we found our de facto leader Pat. If our Blue Bandits had a secretary of state, Pat would be it. Every run, every mile, he knew everyone. “Hey Marcos! Hi Paula…” Pat is the ambassador of MTT. He’s also the leader of our gang, a mishmosh group of newbies, vets, blistered and subsiding on Aleve. So it was that Mallary, Pat and I crossed my nemesis, the Lee Bridge, without my even noticing.
The Lee Bridge ends with a slight uphill,which was fortunate; it positioned my head upwards. That’s how I picked out Andrew in the crowd. But I didn’t expect my friend, the semipro triathlete, to jump into the road. Boom! We took off. My 9:50/mile pace dropped a good 20 seconds in the 1/2 mile we ran together. I think I complained about running out of gel packs. The rest is a haze. Thank you Andrew for kicking my 2nd half into over drive - negative splits, here we come!
I caught Sue again around mile 16. I’m not sure how. I think she had some kind of dark magic that allowed her to keep skipping ahead. Regardles, she shared the secret of the Cold Towels. “Oh, its the Boy Scouts,” she shouted. “Tell me…” I panted, “about these towels…you…speak of?” We were rewarded with what I described, at the time, as ‘the greatest thing that ever happened.’ Cool, wet wash cloths. Wow!
Coach Chris appeared out of nowhere. “Doin’ ok?” “We’re great,” Sue responded. I flashed a thumbs up. And, like that, he was gone. Boom, another burst of speed.
We passed Postbellum where my parents and I ate the night before. Kit and Caitlin passed. “How’s your run going?” “We’re doing this!”
I’m on the boulevard, 'how’d that happen?' I’m passing people. I hear Pat’s expression: ‘everyone you pass is a kill, keep hunting them down.’ I pass my old apartment, #215 and wonder, ‘is the ‘Echo Chamber’ still there?’ [don’t ask…]
Suddenly, I’m alone among a stream of people. I’m two blocks from my current house, on streets I walk every day, and I’m alone. My team, my crew, is gone. My current pace is unsustainable, except I’m still running it. Boulevard crosses Broad. There’s Dad and Ippa, “you are speeding up, do you mean to be?” “Yes!” (‘but do I really?’).
I look down at my watch. ‘If I can keep this up… If I _could_ keep this pace… if I could run THIS 10k in under an hour, I’d be below 4:30. Insane! Put that thought out of your mind and s l o w d o w n.’
There’s the hill, Milestone #2. Whomever thought this was a good location for a billboard of a bacon breakfast sandwich should be beaten with a rubber hose. That, from a person who practices nonviolence. Rubber. Hose!
The Megans. I see The Megans. Two runners, both named Megan, both alluding me for the entire run. Another kill.
Lost a contact lens!
“…And boom, like that a coach appears!” He said that. Out loud. I’m too tired to fake niceties. “What?” “I’m coach Greg, I’m the technical coach!” He’s too chipper. “Ok, then talk to me about form.” “You’re doing great! Just keep going forward. Even last week as I was running another marathon and next week when I run another…. His voice trailed off. This dude had so little body fat, I started to fear he was looking at me as a source of fuel. I decided to cling on to my spare tire, least he source me for his unyielding appetite for asphalt and portly runners like me that he must consume like so many gu packs.
Mile 20. The Pope Arches. Milestone #3, ‘The Most Beautiful Street You Don’t Know In Richmond.’ At least that’s how I wanted it to be. “Beware of the camber…” That’s the last thing I heard from Greg. 1 2 3, 1 2 3, 1 2 3… my mantra when things start breaking down. Maintain cadence. 1 2 3. 1…2…3.. ‘you can walk at the next water stop…’ 1…2…3.
22 miles. ‘Didn’t Kevin say he always walks, even if its to the water station, in every marathon? I’m going to walk…’ 1 2 3. Watch says I’m not slowing down. I’m trying to slow down. Didn’t walk.
Mile 23. People, but can’t see their faces. Greg, a different, non precious body fat as nourishment coveting Greg, appears in the median. “Heeeyyy Greg!”
Slight, but imperceptible burst of energy.
Next runner in front is 100 feet ahead. Not going to be a kill. Alone.
Coke and junk food station. ‘What a miserable idea.’
Beer. “We’ve got beer!” ‘What the F, it’s going to be a PR anyway, right?’ “Hey, is that Natty Light?” “You know it brother!” “Beer me!”
‘I’m drinking beer… on a marathon… I’m drinking beer!’
1 2 3, 1 2 3… ‘going to walk at that next block.’ Didn’t walk. ‘I must be slowing down, need to slow down, ok to slow down…”
My watch battery died. Technologically alone.
‘This road won’t end. Where are we anyway? What’s her shirt say? This damn contact!’
That’s when I see Tony, the golden deer of the Blue Bandits. Tony is THE most consistent runner in our guild. He’s the stuff of legend. I once saw him sprint up a hill, duck behind a gas station for a rest stop, and then pass me again 2 miles later. “Hey man, we going to do this together?” “I’m cramping, but I’m finishing!” He swallowed some salt and a glugg of water before insisting I go on.
‘I don’t sweat, I sparkle,’ If I read her shirt one more time… 1 2 3… 1 2 3… ‘I never noticed how much open land there is over here… I can’t take much more of this!’
The back of his shirt had a swath of tape with ‘Danielle’s Husband’ and my first thought was, ‘is he sweating enough to be Adam?’ I didn’t feel guilty about the thought, its how he introduced himself, or at least how Danielle introduced him on our first 9 mile training run. “How’s your run going man?” “I’m hanging in… she’s up there somewhere…this is cool!” We cut through the round-a-bout and head toward Broad Street.
‘Not sure I can keep this up…’
‘Holy shit! I’m going to run a marathon today!’ Tears. 1 2 3. 1 2 3. ‘I’m….going to run… a marathon today!’
My mind goes back to running. ‘Is that a cramp?’ My right quad is tight. I’ve never cramped up. It’s the stuff of legend. Not now. Not going to happen. ‘Kinda wanna stop’.
“NANCY!” “Hey Nick!!” She cheers me on, two steaming cups in hand. “Did you bring me a coffee too?” My faux incredulity might have been lost my gasping for air. “Really, you want a sip?” “No, just kidding!” Boom, speed! ‘Where’d that come from?’
Mile 25. There are more folks cheering. The street is maybe more narrow? Or am I shutting down? A homeless man —maybe? —is giving high-fives. I make a point to swerve to catch him and just barely make contact with his gloved hand. “Thanks brother!”
I start to think, maybe too much, about it all. Life, the universe and everything. ‘I’m going to run an ‘effin’ marathon today!’ Tears. I start thinking about what’s been on my mind - homelessness. ‘This is my next thing, the next thing after public health that I want to understand and try to affect.’
Another man, seemingly homeless, is cheering, “one more mile! You can do it!” And, I want to know him and how he has anything to give, like a cheer, to me, a total stranger. I hold up a finger, and gasp “one more mile.”
This, at this most improbable of times, feels very right. ‘How can I be clear about something so important right now? And…is that… the “The Final Countdown” ‘?
Someone is playing Europe’s ‘Final Countdown’. I resist the urge to reenact G.O.B. Buth. Barely. Seriously.
We turn, everyone turns. Tall buildings. ‘I’m going to run a marathon today!’ 1 2 3, 1 2 3.
Kevin appears. Wow. Kevin. In June Kevin opened our first run honestly, “I’m not going to lie and tell you this is going to be easy and that you’ll feel great…. is isn't and you won’t.” He never stopped pulling punches. Trust me, don’t ever make a wrong turn on a training run, you won’t live it down. “You got this,” he said, head turned starring at me. I keep focused straight ahead. “Say it! Say, ‘I got this this’”. “I go this!” “Say it again!” I’m kinda choked up…I got this!” “You are going to finish a marathon, say it!” “I’m going to finish….a…marathon!” “Good, now make this turn, and you are done.”
We turned. One last time.
Silence and cheering. Signs. People. Slow-mo clapping. There was no more pain. There was no cramp. There was nothing but speed. I went from breaking down to Ferrari (or reasonably facsimile) in a split second.
Time sped back up. Normal. Then double time. I’m passing people left and right. “Look at that guy go!” Kill. Kill. 123, 123, 123. “He’s taking off!”
I pass Valorie, cheering.
‘Move your arms, keep in control.”
‘This road is wet, don’t fall’ We’re barreling straight down hill. ‘Knees, check in. Reporting for duty sir! Then give me 110%!”
“You got this!” I see Andrew from the corner of my eye.
Camera crane. ‘Try to smile, don’t fall’.
‘Knees? Yes captain, we’re going to 120%. Clear for 120% sir!’
My arms start to windmill.
“Ladies and gentlemen, let’s cheer him on…” but the announcer's voice isn’t for me. An older runner has fallen at the finish line. They bring a wheel chair out onto the finish line.
“Folks, he’s going to finish…” and the crowd erupts as the fallen runner climbs to his feet.
‘I had plans, crossing the finish…what where they? Sing some song? Yell something? What was it?’
There it is, a nothing line. A radio sensor of a marker.
And its done.
“Here’s your blanket”
‘I’m going to stop, put my hands on my knees and give a primal scream!’
But I didn’t. I was a normal citizen again. Whatever super powers I may have acquired start to fade away. But, I am changed. I am a marathoner, and that’s pretty effin cool!
My parents came running to great me. “Hey hey, way to go!”
“Ive got to keep walking, or moving…” I hobbled next to the railing where another finisher was beaming.
“I just ran my first marathon! I didn’t think I could, but look at me, here I am!” She had on a NBMA jersey. I recognized her. “I know you ran it, I followed you for the first 5 miles, way to go!”
There’s no secret handshake. It’s a look in the eye. We knew we were both members of the club.
I meandered for a while, taking in the sights. I got to talk to Don and Scott, who both had awesome runs. Patrick and I reconnected and spent a good hour talking about the race, our training and what it means to be a runner.
Later, after the crowds died, I went to crash the party of dear old friends Rachel Michael Brown. Nothing like showing up at a brunswick stew party as the only guy in running cloths.
“Oh this medal? Yeah, I ran the full…” My friends, that phrase does not get old!
Thank you to all our coaches, friends and family. What a life changing experience this has been!
Next stop: Paris, April 2014!
Last night our marathon training team, the Blue Bandits, had our pre-race pasta party. I confided in one of the coaches, “I don’t feel like a member of the real runners club.” I added, “then again, I’m not sure what the qualifications are for membership.” For starters, there are what I refer to as bones. You know the bones, they look like graceful, gazelle-like skeletons and are most commonly found at the front of races.
Submitted for your consideration, a bones specimen this summer’s Cul-de-Sac 5K:
Together, Peggy an Brooke Battin wrestle with their own beliefs and wishes every day. Sometimes, they change by the hour.
What I find so moving about their story is the multiple truths with coexist in their relationship. You can want to live and be tired of an unpleasant existence at the same time. You can be resolute in your thinking and understandably flexible at the same time. We can be both clear and confused, strong and conflicted, hopeful and scared, all at the same time. And the truth is, none of us knows exactly how we’ll feel one any given day, until that day comes.
Here are some of excerpts from the article which stuck with me:
At the heart of [Peggy’s] argument was her belief in autonomy. “The competent patient can, and ought to be accorded the right to, determine what is to be done to him or her, even if … it means he or she will die,” she wrote in 1994 in “The Least Worst Death,” the third of her seven books about how we die.
That’s the way she saw it after Brooke’s accident too, but with a new spiky awareness of what it means to choose death. Scholarly thought experiments were one thing, but this was a man she adored — a man with whom she shared a rich and passionate life for more than 30 years — who was now physically devastated but still free, as she knew he had to be, to make a choice that would cause her anguish.
“It is not just about terminally ill people in general in a kind of abstract way now,” she wrote after the accident; “it’s also about my husband, Brooke. I still love him, that’s a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off ?”
Brooke has good days and bad days. When friends are around playing blues harmonica or reading aloud to him, when his mind is clear and his body is not in pain — that’s a good day. On a good day, he said, he feels even more creative than he was in his able-bodied life, and his relationships with Peggy, his two stepchildren and his many friends are richer and more intimate than before; he has no time or patience for small talk, and neither do they. Every so often he’ll turn to Peggy and announce, “I love my life.”
The tangled, sometimes contradictory nature of Brooke’s feelings has led to subtle shifts in Peggy’s scholarly thinking. She still believes that, whenever possible, people have the right to choose when and how to die. But she now better understands how vast and terrifying that choice really is. “What has changed,” she told me, “is my sense of how extremely complex, how extremely textured, any particular case is.” This realization is infinitely more fraught when you’re inextricably invested in the outcome and when the signals your loved one sends are not only hard to read but also are constantly in flux.
So here’s something I’ve never found a satisfying answer for… Why did Pink Floyd so obviously use the melody from John Prine’s Sam Stone in their song Post War Dream?
Here is Prine’s Sam Stone
And Pink Floyd’s The Post War Dream
Floyd’s Roger Waters doesn’t have a track record of doing things haphazardly. In fact, he’s quite intentional about most artistic choices.
But despite a few mentions on forums and a Wikipedia reference to the shared melody, this link isn’t widely discussed online (that I’ve seen).
I’m not saying it keeps me up at night. I just want some answers!
This morning I ran somewhere between 7 and 8 miles —vagary owed to oxygen deprivation —down the C&O Canal Tow Path. The old C&O Canal connects Ohio to the Atlantic by way of the Potomac River. I started at Harpers Ferry, WV and, in theory, could have run all the way into downtown Washington DC. I did not, for the record, run to DC.
The Appalachian Trail shares a section of a few miles with the canal’s tow path and the CSX railroad runs, at points, precariously close.
On my run this morning I passed young through hikers with monstrous packs on their backs. I passed old through hikers with even bigger packs. I passed locals who used the trail to walk their dogs. There were families on bikes and some serious rides who looked like they were clocking the miles. There were also some homeless men who used the railroad trestles as shelter. A guy in waders, just off the trail looked like he had a fish on the line.
It’s interesting to think about. We can all be on the same path, but experience it in very different ways.
I took the first picture on September 10, 2000, the night before I flew home from my first extended stay in Paris.
In 2008 I wrote about the picture and its signifiance to me:
I took the train back into Paris for one last meal and stroll around some favorite spots. To this day, I cannot recall where, let alone what I ate (for those who know me that may come a shocker). But, I do recall taking this picture as vividly as if I were there now. I took a walk that I came to know like my own street in Richmond; through the Latin quarter, around St. Germain (my adopted arrondissement) and across the Pont Neuf to the Ile-de-la-cite. When I paused and rested my camera on the stone railing I made a promise that if I ever forgot that moment, that feeling then I would board a plane to Paris right away.
Two weeks ago, June 2013, I had the chance to take the same picture.
I don’t know if Thomas Wolfe was right when he wrote you can’t home again. But going back to Paris always seems like a good idea to me.
I think I like the first picture better.
NOTE: This post is intended as a companion post to the session recap from Doctors 2.0 & You here.
I recently published a recap of Doctors 2.0 2013. I’m no Bob Woodward, but I tried to take a neutral observer role in relating the content of the panel. When I asked for feedback, my friend Liza suggested my personal passion around the topic was missing.
I keep telling this running joke (and it keeps flopping. Note to self…): there’s probably a German word for that concept of once you understand an idea, its hard to imagine a time when you didn’t think that way, and it probably has 7 syllables.
Yeah, not that funny, is it? But the point is still true. The term patient-designed care came out of the first Medicine X IDEO Patient Design Challenge. Through Stanford’s Medicine X program, about 40 conference goers spent a day collaborating with ePatients and IDEO designers. I was lucky enough to observe. As the group was wrapping for the day, one of the designers remarked:
"I think this is the first time we’ve had the people we design for participate in a design challenge. We hear a lot about patient-centered care…” one designer started, “but that’s kind of a hollow phrase. What we discovered today was something new: Patient-designed care”.
The idea has grown, and is still pretty simple. Involve patients in designing anything affecting them. It might be a process, or tool, or space, or service offering, or strategy. Whatever it is, make sure there are patients on the committee.
How could it be any other way?
Regrettably this is still a pretty novel idea to the healthcare industry. I’m as guilty as anyone. I can think of dozens of projects during my time working in hospitals where we set out to do patient-centered things. We had the best intentions. Let’s make this bill more patient friendly… or Let’s add patient-centered training to our new employee orientation.
That kind of work, despite noblest intentions, is inherently based on assumptions. We made assumptions about what patients would want. They’ll love this furniture… and If I got this bill, I’d want it to say….. Don’t get me wrong, that’s not a bad start. It’s still an empathic approach. But why didn’t we involve patients, asking them about their experiences and to share their suggestions?
It’s time to start.
I’ve been using the phrase patient-designed care for almost a year now. I’ve also been trying to put it into practice. For example, In 2012 I was still in an operations administration role in a hospital. When it was time to schedule an off-site team meeting, I invited a former patient to come speak to our group and participate in the meeting. I met the patient when she came to my office to voice a complaint one day. She went on to become a strong proponent of our department.
In my role helping lead a start-up focused on staff and patient experience, we’ve included ePatients in all of our project proposals. We sneak them in as experts consultants, or sometimes directly identified as ePatient experts.
On a personal level, I count many ePatients among my personal board of advisors. (How fun is that term? You should have a personal board of advisors too, if you don’t already.) When I’m stumped and need to bounce ideas around, I call on my friends. When I’m excited and need someone to share with, or poke holes in an idea, I call on my friends.
Here’s the bottom line: I cannot, anymore, imagine doing anything in healthcare which affects patients without involving patients. And that’s the idea I wanted to explore at Doctors 2.0 this year.
My hope for the panel was an honest conversation involving ePatients. I knew some of my Medicine X friends would understand the term. And others, despite doing participatory design work, may not know it yet. I wanted us to get representatives from those groups together.
Largely, I think we pulled that off. The discussion was made richer and more well rounded by our moderator, Michael Seres. Michael is an ePatient - sometimes he prefers iPatient - who takes an active role in designing his care plan. Liza Bernstein, a student of product design, understands the concept inherently. She sees how patients can play an active role in the design of processes and things affecting patients. Kathy Apostilidis is using her patient-acquired expertise to participate in designing European policies.
Maybe we need to find that german word I jokingly alluded to earlier. It’s hard to convey in a talk or panel discussion something so profound (and yet so simple). From my perspective, the next big hurdle is getting healthcare provider organizations (hospital, health systems, clinics, etc) to really embrace this concept. I’m unsure if we need to increase awareness, or reduce fears, or facilitate the formation of formal ePatient hospital advisors.
Hospitals have focus groups and patient advisory boards today. Those are admirable starts. But doesn’t it seem silly to have a meeting about improving the experience of a department or facility without including the people who have been through as patients? It’d be like going to a restaurant where the chef assumes what you want to eat without asking.
Panels like ours help start the conversation. And they broaden it. While I’m focused on integrating patients in hospital process and service design (strategy), others are focused on policy, or research or treatment plans. We need to have these conversations and I’m really glad Doctors 2.0 & You and Medicine X are among the first programs to host these dialogues.
If there is a universal language, its words are human feelings and its sentences are shared experiences. Healthcare, the state of being a patient or caring for someone who is a patient, is surely part of that universal language. At some point, each of us will have someone else put their hands on us with helpful, healing intent. Some are lucky enough to have skilled hands they can use deliver care to someone in need. This happens everywhere. It transcends language. So, it was not a surprise when Liza Bernstein told me, during a break at Doctors 2.0 & You, she had immediately felt a bond with other patients from around the world, at the conference.
Doctors 2.0 & You is a conference, anchored in Paris, focuses on future-facing healthcare trends such as mHealth, HCSM and participatory medicine. The conference is an interesting juxtaposition of the setting’s medieval-styled center of Paris’s CIUP and modern healthcare innovations. Perhaps that describes all of Europe.
On the first day of the conference, I had the fortune of participating in a panel discussion titled patient designed care. The wording was carefully chosen. We wanted to imply that the next logical step in the evolution of patient-centered care is one which patients will participate in developing.
Traditionally, throughout the Western world it seems, healthcare has been delivered paternalistically —a top-down, assumptive approach. We’ve only recently begun using the term patient-centered care to refer to care planning, environments and processes where the patient is at the center. Our panel wanted to share some of the avant-garde trends each of us is seeing and what they portend for patient-designed care.
What is patient designed care and how is each person advancing it?
— Doctors 2.0 & You (@doctors20) June 6, 2013
Liza spoke about going from being overwhelmed by the healthcare system, "gobbled up by the machine," in her words. As a patient, she had the medical problem, but not a lot of insight into how the medical process would unfold. That led her to think about how she might hack the system to her advantage.
Liza applied design-thinking to her patient experience. Her goal was to find ways to take back power and choice in places where she felt she had lost both.
After Isolation, Liza says she moved to global engagement: "Twitter and Hashtags became my Gateway Drugs; I found my people, my purpose".
— Paul Tunnah (@pharmaphorum) June 6, 2013
Kathy spoke about her experiences as a patient in Greece. When she discovered her physicians were not using electronic medical records, she began to take her own notes.
I made my own medical record, which I stored on my computer.
Kathy went on to discuss her passion for policies which help move away from a paternalistic system to a participatory one.
— Doctors 2.0 & You (@doctors20) June 6, 2013
I began by sharing that I don’t identify as an ePatient myself. But my career has been profoundly shaped and influenced by active, engaged patients.
Early HCSM experiences, like fielding patient complaints on twitter, exposed me to ePatients. Those experiences helped move me from a place of designing healthcare services and offerings by assumption to a place of designing though participation.
— Kristina Curtis (@KristinaCurtis) June 6, 2013
Michael shared his own experiences while directing the panel as its moderator. For Michael, access to his care team via social media and texting allows him to participate in care planning from anywhere.
Liza spoke about the need to move away from an approach which pays lip service to patient experience, without providing meaningful impact. To Liza, including patients in the design process would help uncover those areas for deeper impact.
Kathy addressed her vision for a more patient-centered European care system. For Kathy, an ideal system would not only exchange data effortlessly, it would allow patients to see and contribute to their own records. We need policies which support this too.
I’ve been a broken record lately. 2013 is the year of the ePatient. That’s my line. We’re starting to see ePatients involved in the design of care services, care plans and healthcare delivery.
Once someone gets exposed to the idea of including expert patients in the design of healthcare processes and services, its very hard to imagine how it could be any other way.
Conferences like Doctors 2.0 & You and Stanford’s Medicine X are leading the pack with their patients included strategy.
Elsewhere advisory firms, like the one I work for, include ePatients in the design and delivery of work we do for healthcare clients.
From a policy perspective, regulatory and advisory boards like PCORI are promoting and funding patient-identified research efforts.
NOTE: a more personal, objective view of my thoughts on patient-designed care can be found in this companion post.
Michael helped close the panel by reiterating that his success with his transplant team can serve as a model, anywhere.
And what a fantastic model it is!