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Medicine X 2013, my view

My Medicine X recap is different. It’s different because my view was different. I got to see things you may not have seen. Were I less inclined to my vegany ways, I might say I saw how the sausage was made. But that’s not exactly what I mean either. It is true, I got to see the luggage tags before you. It is also true that I know where in Palo Alto sells 80 lb. test fishing line. What I mean, about my view, is that I got to see amazing people do amazing things. I got to see it from a vantage point many did not have access to.

And I wouldn’t trade my view for anything.

The preamble

I arrived in Palo Alto a few days before Medicine X and asked Dr. Larry Chu to put me to work. (I’m afraid, if you were to ask him, he’d tell you he got what it paid for in my volunteer efforts). Regardless of my heroic contributions —those welcome packets looked nice, didn’t they? —I got to see a high-preforming team at work.

Dr. Chu and company have taken over a space in the 4th floor of an old part of Stanford Hospital. His AIM lab, at least a week before Medicine X, is a Grand Central Station of activity, comings and goings. Boxes arrived. Then there were more boxes. Then there were more people. And somewhere behind a wall of food containers, Pelican boxes and new TV monitors, were Monique, Will and Jeff. They formed a mind meld, finishing each others’ sentences and predicting Dr. Chu’s next moves.

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Great teams don’t just get work done. They flow. When the Med X crew is in the zone, there is a sense of mission and purpose to their work. It’s exciting to watch.

There was, of course, Zoe

Hanging with @therealzoechu for some pre #MedX prep work.

Wednesday, before the conference, is load in. How can there be even more boxes? Where do they all come from and, more importantly, where does the universe store them when they aren’t at Stanford? So many boxes!

Load in

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Projection artist Josh arrived with The X. The X needed to be hung, at a specific hight and with a specific proximity to the screen. It should appear to be floating. According to its manufacturer, The X weighed 62 pounds. According to the airline Josh gave it to as checked luggage, it weighed 102 pounds.

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Med X stage manager Kam and I went on a mission. Team Monofilament beelined it to Palo Alto’s big box district where we found fishing line in weights up to 80 lb. test. Double the line, load weight divided by gravity, carry the one…screw it, it has to hold, right?

I’m not saying we saved the day, but…

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The Team

That evening the rest of the Medicine X ePatient Advisors arrived. I picked up Sarah, and we were quickly joined by Liza and Britt. Boots on the ground!

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“I’ve got concerns…this has to be perfect, some of the patients are already arriving.” Britt Johnson doesn’t mess around.

Over the next four days, I took a selfish front row seat (literally, for those who noticed) and watched Sarah, Britt and Liza and Hugo shine. I watched them organize, with extreme prejudice. I watched them comfort, with extreme kindness. And I watched them be their very best selves, with extreme pride.

Sarah works behind the scenes. She coaches ePatients gingerly, but without mincing words. Who has time for fluff? Your talk is good, but have you thought about…? You should think about it! Sarah coaches all of us the same way. She sits quietly in our discussions, waiting to slip in the one sentence that brings everything together.

Hugo confided, “this is the conference we were meant to put on. I’ve been waiting for this.” Hugo likes to work quietly, slipping influence in between warm smiles and self-deprecating humor.

Britt, whom we’ve already established doesn’t mess around, took the lead on the engagement track ePatients. It was, as they say, her baby. Britt has the leadership art; when she says be at this place, at this time you know its because she cares about the experience you have.

And Liza…well, it’s the Year of Liza. Liza brought an intellectual purposefulness to Medicine X this year. She knew who should speak on which topics and why they needed to be heard. She knew which ePatients should meet certain other attendees. She applied a sense of design to her interactions and leadership.

There’s a thing that happens sometimes in life, when we are lucky enough to experience it. Its that sort of out of body feeling when you almost float above the conversation and observe yourself in it. I had that feeling for four days straight as I watched Liza, Sarah and Britt.

After a late strategic dinner (Code Urkel, I repeat, Code Urkel) one night, I thought to myself this must be what working with a highly functional team feels like, because this doesn’t feel like work at all!

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Rare Air

I have a friend who, in reaction to my boasting about shoulder rubbing, says: “you breath a lot of rare air.” She’s right. I somehow get to spend time with some of the brightest and most inspiring people in healthcare.

Take, for example, Emily. You think your travel story was bad? Emily’s has it beat. I met her on the tail end of her horrible travel day. “My legs are three times their normal size and my pain is off the charts.” Then she started laughing. Who does that? Who laughs through pain? Emily did.

The next day, from the main stage, Emily used that same objective calmness when she told the audience here pain was at an 8.

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I also got to meet Joe, the Prosthetic Medic. “I wanted one in camo, you know, real redneck style,” said Joe, showing off his prosthetic leg. Joe’s disarming humor makes him a secret weapon. While he has you laughing, he slips in something like, “I had to fight really hard to get the leg I deserve.”

Medicine X gives some of us special credentials which include access to a VIP room. This year, our ePatient scholars used the VIP room to convene every morning and during lunches, for open debriefs. Tom Lee, from Symplr, was not one of our ePatient scholars. Yet, Tom, often accompanied by his colleague Audun, showed up to every ePatient meeting. Tom sat quietly; I even wondered if the others noticed he was there. But he was there. Every day, for every discussion. Tom, you were noticed, appreciated and cared for.

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From my back stage, behind the scenes, VIP badge, hardest working team in healthcare conference view, I got to breath the rarest air.

I saw Chris do what he is born to do on stage, expertly weaving together a conversation about what it means to be an ePatient. (He’d shoot wry grins when he knew he’d found a theme).

I watched Jody exude poise, charm and leadership.

I met Niki who sees her cane as a fashion accessory.

Deb wins the award for most perky ePatient ever.

Karen bought us Mexican candy.

Katie, er Gerald, you made us laugh, while Alan sat quietly, tweeting profound insights, next to Casey who never sits quietly.

Michael and Marion —yes their stage talk was great —both giggled like school kids when they slipped on Google Glass during a break.

These weren’t the only experiences or people I observed. I saw a mentor find his tribe. I saw two big thinkers bump brains and spill out ideas. And, I saw icons become iconoclasts. It’s a snapshot, a sampling.

The icing on the cake

My friend Jason and I sat up way too late the night before his talk. We were chatting about our time in graduate school, his treks into the Minnesota wilderness and our shared passion for the human side of healthcare. We got deep, comparing the rewards of helping patients to Buddhist meditation. And we were light as we sipped his homemade cherry brandy. “I’m pretty nervous about tomorrow,” he said.

The next day, I watched Jason give one of the best talks of Medicine X 2013. “Once you start involving patients and families,” he projected, “you won’t stop because it just feels good…it feels right”.

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On Thursday, before the conference, a small group of ePatients and attendees went inside IDEO. IDEO, a famous design and innovation firm, led a design challenge for the group. That’s where I met Laura.

“I guess I don’t really think of myself as an ePatient,” she told us. “I’m still trying to figure this all out…”

Went spent the day learning about Laura and her condition — autoimmune soup, as she calls it. “I’m not really out, as a patient, you know. Its new to me, having all this attention.”

Really powerful, Laura shows trend of her lab results. Good that she has access, bad that doc didn't review #Med

Over the next four days, Laura sat in the front row for every main stage talk. She participated in every discussion and every breakout session. She was not only present physically, but also emotionally and mentally. I could see, on her face, the connections being formed and the ideas spinning.

On the last day, from the stage Dr. Chu issued an assignment: before you leave Medicine X, find one person and tell them why they made an impact on you.

I went to Laura and said —tried to say, I’m sometimes lousy on the spot— “Thank you for being here. I am inspired by the courage you’ve taken in being here and your openness and I cannot wait to follow the big things you will do.”

I mean it Laura. You will do big things for patients.

Thank you Dr. Larry Chu for your vision and for creating an environment many described to me as: “the first place that has felt right.” And thank you for pulling together the best team I’ve ever had the privilege to work with.

And, finally, I got to see my dad experience Med X. Meta, I know. “You are Nick’s dad? I want to meet Nick’s dad!” The taller Dawson always gets more attention.

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Reflecting

I had a pretty good view.

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NOTE:

For a comprehensive list of blogs and links related to Medicine X 2013, visit Catherine Rose’s wonderful compendium.

The First (unofficial) Medicine X walk & run

MedX Walk Run Stanford’s Medicine X is a workout for your brain. For those who want to workout their bodies too, now you have an option. Here’s an unofficial Med X walk run option.

As a reminder, the conference begins at 8:00 am sharp. Breakfast is offered starting at 7:00 am. Many runners eat breakfast before their run. But, do keep the conference schedule in mind when considering your walking or running pace. Since this is unofficial and loosely organized, you are welcome to start a route earlier - we'll find you out there!

  • When Saturday September 28, 2013 starting at 5:00 am and 6:00 am (depending on distance).
  • Where Each distance starts from the Palo Alto Sheraton which is next door to the Westin.
  • Who anyone interested in walking, run-walking, or running before Saturday’s sessions.
  • Meet Nick Dawson and others at 5:00 am or 6:00 am outside the Sheraton
  • But I’m not a runner! Don’t worry! We’ve got a plan for everyone.

Med X is about community, participation and health. There is no pressure to walk or run at a certain pace. Whether you prefer a slow stroll or a brisk run, the goal is to spend some time together outside to wake up our bodies in preparation for waking our brains.

Routes and Distances The routes and distance options start with the longest, so the crazies among us can get in some miles and the more sane can sleep in a bit longer.

The entire course map can be found here.

11 Miles

The course for the 11 mi option Starts at the Palo Alto Sheraton at 4:50 am. We’ll head out around Palo Alto, following the linked route (above) in reverse order. We’ll run along the creek and then through neighborhoods and past some parks. We’ll join the 1mi, 3mi and 5mi groups as we loop past the Sheraton.

5 Miles

The course for the 5 mi option Starts at the Palo Alto Sheraton at 6:00 am. We’ll join the 3mi and 1mi group and head out towards the stadium. We’ll make a loop up Palm Drive and then head around the Medical Center before heading back towards the hotel.

3 Miles (5K)

The course for the 3.2mi/5k option Starts at the Palo Alto Sheraton at 6:00 am. We’ll join the 1mi and 5mi groups and head out towards Stanford’s iconic football stadium. We’ll head up the famous Palm Drive and around the Medical Center to complete a loop down football Rd back towards the hotels.

1 Mile

The course for the 1 mi option Starts at the Palo Alto Sheraton at 6:00 am. The 1mi route will visit the Stanford football stadium and beautiful entrance to campus along Palm Drive.

Doctors 2.0 & You - Patient Designed Care Recap

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.

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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.

The Panel

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.

Meet the panelists

  • Liza Bernstein — Liza is South African by birth, American by residence and French through her education. Liza has a background in design, which she applies critically while thinking about her experience as a three time breast cancer survivor.
  • Kathy Apostilidis — Kathy is from Greece where she participates in many European healthcare policy endeavors. Kathy is also a cancer survivor and a passionate advocate for participatory medicine.
  • Nick Dawson — I live in Richmond, Virginia, USA. My background and education center around hospital administration, specifically finance and strategy.
  • Michael Seres Moderator — Michael, from just north of London, is the 11th person in the UK to receive a bowl transplant. Starting with his blog, he has developed a strong social media presence including connections with his doctors and clinical care team.

What is patient designed care and how is each person advancing it?

Liza

 

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".

Kathy

 

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.

Nick

 

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.

Michael

 

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.

What is your vision for the future

Liza

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

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.

Nick

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

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!

Patient Designed Care - The Story of Medicine X 2012

Prologue: I've been digesting all the intellectual and emotional morsels from Medicine X for about a week now. I've written, discarded and re-written this post several times. There are several well thought recaps online. It doesn't make sense for me to try and create one of my own. There are also videos of the entire program on the Medicine X site, so I don't need to summarize all of the talks. And, thankfully, there tweets galore which tell the behind-the-scenes stories and offer colorful commentary. No, for me this post is about one thing...one theme which I cannot (nor do I want to) shake: Patient Designed Care. I'm pretty sure that term was newly minted at Medicine X and I'm tingling with the promise it is a trend just on the verge of taking off. There is so much potential energy in the idea of patient designed care and this year's Medicine X was the kinetic kick to inspired many to fan the flame.

I'm looking forward to the next few weeks and months. This is going to be big!

-N

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“I think are just made to work this way…” The smile crept up on M.A. Malone. “…this is how people are supposed to be.” She wasn’t referring to being surround by post-it notes. M.A. was feeling the vibe of Medicine X. Untitled

Healthcare is inherently about humans. It is, at its raw core, people talking care of people. And that should feel good. As M.A. would say, it’s how people are supposed to be. And yet, we find ourselves in a world where healthcare is often about everything other than the people on the giving and receiving end. KERN-120929-144_MA_Malone_11

 

Speakers like Michael Graves do not see an impervious membrane between a patient-friendly world and the current state of healthcare. In fact, he sees opportunity. During his talk he set a tone for the next two days —one of human-centered design in healthcare.

Wonder [Triplet] powers, activate!

#MedX IDEO design thinking is a balancing act. Starts with understanding people

On Saturday evening, IDEO’s Dennis Boyle, Massive Health’s Aza Raskin and ExperiaHealth’s Kim Petty each took the stage to discuss design thinking. When Dennis Boyle talks about design, he says we have to consider what is viable, feasible, and most importantly, desirable. Desirability is the human component —what do people want an experience to be like?

Big-thinker, particle physicist and designer Aza Raskin echoed similar themes when we spoke about designing support systems for those with chronic conditions.

Kim Petty made no qualms about it, healthcare is about people first. How caregivers feel, how patients feel, how the spaces, terms and tools make us feel…that’s what matters. Design for experience, and the rest will follow.

The importance of design

Before the conference officially started, select attendees were given the opportunity of a lifetime. They were embedded in renowned design firm IDEO to experience a design challenge. The group of fifty or so conference goers was divided into teams. Each team centered around one of the Medicine X ePatient scholars. Through the day, the IDEO team introduced participants to their process, starting with their philosophy.

“We’re not experts in anything,” they extoll, “we just have a process and it always works.”

IDEO starts with interviewing end users of a thing or process. Groups listened intently to the stories of the ePatient scholars in their group. What challenges do they face with healthcare? What is their biggest burden? What workarounds have they created?

 

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Next comes the problem statement. How might we…. * make accessing your records easier? * avoid preventable harm? * make it easier to get in and out of a chair? * educate children on a parent’s medical needs * feel better about an industry which purports healing and human life

For hours, each group immersed themselves in ideas, or ideating as IDEO calls it. It was a blizzard of post-it notes.

IDEO designers continued by taking participants through the brainstorming phase. Just like improve, the number one rule of brainstorming is never say no. There are no bad ideas, in fact, you should encourage the zany ones. Just keep ’em coming.

#medX IDEO - ideo's rules of brainstorming:

An important part of any innovation process is rapid iteration. Groups prototyped the designs which resulted from their brainstorming. Let’s practice this interaction with a doctor. How would this device look and feel? What should this website look like?

Quick, grab the hot glue gun and let’s make this thing!

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IDEO experts taught the groups about the importance of storytelling. This is your design and innovation, you have to sell it to others. How is the world better with this new thing? What problem does it solve? Groups presented their design in the form of skits, mockups and storyboards.

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And that’s when the magic happened

As the day at IDEO, itself a precursor to the main event at Medicine X, came to a close, designers, participants and patient scholars reflected. Unlike other group events, these MedX’ers were emboldened by a day of creative energy; of working how people are supposed to work. One after another, the emotions came pouring out.

Thank you for showing me what the future can be like

Thank you for giving us this day

Thank you for creating a day when no one said no

The impact of the day was not lost on IDEO’s team. Designers, each and every one, had that kind of infectious smile which comes from deep within the soul. It was the kind of smile which suggests we did something special today, magic happened here…

“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

If that new term was born that day, it could have just as well been celebrating an elder birthday among it’s close friends. It was as at home in that space, among patients and newly-minted designers as ones own pulse. And so too it took root as a theme, a heartbeat itself, through Medicine X 2012. Nothing about me without me. Let’s talk about what can be. How might we incorporate patients to create …. patient designed care.

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Medicine X 2012 Reading List (missing yours? Leave it in the comments and I'll update this list)

Ask Paxton | Medicine X Stanford

A few weeks ago Dr. Larry Chu asked me to write a blog post for Stanford's Medicine X. Medicine X is an exciting conference focused on healthcare design, innovation, patients and technology. I'm honored to be a part of their advisory board and ePatient committee along with a bunch of other folks way smarter and more qualified than I am.

I'd been kicking the story of Joseph Paxton around in my had for a while. Here's a guy, totally unschooled in classical architecture, who designed and built a structure they said couldn't be built.

According to Bill Bryson: “The finished building was precisely 1,851 feet long… 408 feet across, and almost 110 feet high along its central spine-spacious enough to enclose a much admired avenue of elms that would otherwise have had to be felled. Because of its size, the structure required a lot of inputs-293,655 panes of glass, 33,000 iron trusses, and tens of thousands of feet of wooden flooring…"

He did it in 1851.

So, what does Joseph Paxton have to do with Medicine X and the future of healthcare? Everything!

Click here for the full post. 

Paxton, without any formal training, changed the face of London and, in many ways, global architecture. He gained so much acclaim as an innovative problem solver “ask Paxton” became a comment retort when people asked challenging questions.

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Joseph Paxton was a passionate self-advocate. Rather than relying on the committee, he showed his design right to the people of London. Does that sound like ePatients to you too? This year, Medicine X will make 35 scholarships available for ePatients to attend the conference. ePatients are engaged, informed, empowered and most of all, connected. Just like Paxton, ePatients know the power of self publishing, sharing expertise and involving others. Having ePatient scholars at Medicine X means the event will be patient-focused, all the way.

The Crystal Palace pushed the bounds of what people thought was possible. Medicine X is all about healthcare transformers – those boundary busters who think beyond what is possible today, and create the future they envision. This year’s Medicine X will feature presenters who don’t settle for the status quo. Instead, they are fueled by a passion to design patient care experiences in a whole new way.

via Ask Paxton | Medicine X Stanford.

Social Media for Healthcare Conference - Washington DC, October 5-8

ALI Banner

I am prepping my slides! ALI is hosting a four day conference on social media in healthcare on October 5th - 8th. The speaker line up is exciting. I know many of these folks and expect to hear a some insightful and unique content coming out of this event. My presentation is still in the oven, once its baked look for the slides here on my site.

Unfortunately, I am a tad delinquent in sharing this announcement. There is a speaker code - "SPK" that was good for 50% off the entire conference. Feel free to try it or to mention my name, it might still be valid.

Most importantly, if you are attending, please drop me a line. If you are interested in my presentation, I would love some prior input on what would make it valuable to you.

Edited to add this important detail from Amy Gerstein at ALI - Thanks Amy!

Just to clarify -- yes, the 50% discount is good for registering at any time. Attendees just need to mention code SPK or "Nick Dawson" and it will be applied to whichever rate is current - - earlybird vs. regular rates. To all those interested in registering... please note that the early bird discount (a savings of $400!) is only good through today, August 12th. After that please see the regular prices at: http://www.aliconferences.com/conf/social_media...

Hope to see many of you in October!

Originally posted as a comment by Amy Gerstein on nickdawson.net using Disqus.