#TheWalkingGallery : Stories in Video

These are the stories of The Walking Gallery, painted by Regina Holliday (@ReginaHolliday), told in 11 second segments. Pick your story.

Have you ever felt like you are in the right moment, in the right place, in the right part of history? This was like that, albeit with a little bit of terror, as I uploaded each video in real time, and it mostly worked. Life is one big prototype here in our nation’s capital.

Twitter handles of our storytellers (please add yours in the comments if I wasn’t inclusive): @fredtrotter , @tedeytan , @motorcycleguy , @Lygeia , Isaac Holliday , @kymlmartin , @RossMartin , @2HealthGuru , @BenMarion1 , @HealthcareWen , @jess_jacobs , @drnic1 , Courtney , Joan Holliday , @joshcrubin , @kcmackrn , @gilmerhealthlaw , @kaitbr , @kaitbr , @ctorgan , @goodmanwood , @MsWz , @EnBloomMedia , @lindseybh , @iowastater , @ryukirby , @thepatientsside , @kenonhit , @susanchull , Jon , @reginaholliday , @susannahfox , Everyone , @craiglipset , @claudiawilliams , Moira , @ReginaHolliday , Everyone

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Non-compliant: The story behind #Teds2ndJacket , told side by side by Regina Holliday and Ted Eytan

Here’s the story of my second Jacket. Regina Holliday’s ( @ReginaHolliday ) version on the left, my version on the right. Comments always welcome.

“Non-compliant,”by Regina

This is a jacket for my friend Ted Eytan. This is his second jacket and it depicts his story.

"Non-compliant" a jacket for Ted Eytan
He has been a member of the Walking Gallery for the past year. He has walked all over the country wearing Surgeon General Regina Benjamin’s story. He did an amazing job. So many people know more about our Surgeon General because this man was willing to wear the trials of another on his back.

It is so Ted. He is one of those amazing people who questions everything, and through those questions purifies thought and distills a million pleas for help into a coherent strategy. This skill is not without price, and Ted has paid and paid again.You know how you learn to see a problem from the outside?

You learn by being the outsider. You learn by years of darkness. You learn bravery while hiding in closets avoiding fists or taunts. You spend years standing out within a crowd, not fitting in. You learn in the lonely time of introspection that these other children see a different world. Their faces are not finished yet.

When I was young, I loved to paint and draw old men. My friends wondered at my fascination. I said “I love to draw their beautiful pain.”

Regina and Ted
Ted has one of the most beautiful faces I have ever seen, and he had it as a child. In this painting, I stand behind Ted. My hand rests upon his shoulder. I too look to the side with a worried glance and question what is coming.

We are non-compliant. Do you know what compliant means? It means docile, willing, obedient, manageable and submissive to an excessive degree. Ted may be a doctor. I may be a patient. In this we are one, out and proud.

We are non-compliant.

Non-Compliant

“Non-compliant,” by Ted

After I ask questions, I often wonder if I should have just kept quiet. But then I meet people like Regina.

My face in the jacket is taken from the photograph below. I think I’m getting ready for my podcast with Regina that will take place 40 years later.

Ted s first podcast  1972
I am a first generation American, raised in a home where English was a second (or third, or fourth) language, by immigrant parents, who were refugees from their homeland.

My mother tells me I was an excellent student. I could never sit still though. I remember her coming to pick me up from first grade one day, finding that my desk had been put outside. She says I was making the other kids laugh too much.

I trained in medicine when it was pronounced that my minority status was “the last accepted prejudice,” and the President of the American Medical Association, Nancy Dickey, MD, told the world that the AMA would not admit gay, lesbian, bisexual, or transgender physicians into membership. I and many other physicians are still not members. Love always wins.

In 1985, I didn’t wear the same shirt as all the other kids.

Anytown 1985 highlighted
In 2005, I didn’t either. Total coincidence. My rationale was that I wanted the patients in my organization to see me wearing their shirt, not another organization’s.

Medicine and Management 2005
The worst presentation I have ever given was one where I was told to not talk so fast. That was the last time I tried to talk differently than I normally do.

I appeared in this magazine talking about giving patients their own health data in 2002.

Healthleaders outside the box
When I joined the CCHIT EHR Working Group and later co-chaired the PHR Workgroup, I was told:  “EHRs are for doctors, PHRs are for patients.” My opening statement was that customer of the EHR is the patient, not the doctor. This didn’t seem to go over well in 2006. In 2012, a patient is being recruited for the United States’ HIT Policy Committee.

Unlike Regina, I received a champagne education, paid for by society. I got into social media because I wanted to be honest about what health care isn’t good at so we could get better. I started the organizations’s first blog before it was allowed.

Welcome to the Daily Kaizen
I asked Regina Holliday to be in my jacket because she’s part of my story now, which is fantastic. It’s an unlikely pairing on one level.

Ted and Regina

 

Every day, Regina and I are “asked” nicely, sometimes not so nicely, to be like everyone else. This is hard, sometimes lonely, sometimes painful.

I think we’re both pretty good at adapting ourselves to a situation (and my social styles profile confirms this). Our problem is that we don’t know how to live someone else’s life.

On the other hand, I am ecstatically happy to live in a diverse community, in a family and with friends where the duty to rescue is the norm, in a society that has become more tolerant, where love always wins, Prevention is the new HIT, and it’s possible for doctors to be comforted by patients. That a life like this exists is a cool discovery.

2012: Whatever privilege we have we’ll use to make sure it gets better

 

See you at The Walking Gallery and everywhere it’s possible to walk. I’ll be wearing my jacket with pride. I’m the one with the perennially untied shoes.

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Taking care of business at #HealthFoo: Nomination Letter, Regina Holliday, Health IT Policy Committee

Almost 3 years to the day (May 28, 2009), I wrote a blog post entitled “Is it meaningful if patients can’t use it?”, that detailed my first meeting of Regina Holliday ( @ReginaHollidayblog ). In it, I wondered if the then-unannounced Meaningful Use standards would recognize the important role of patients and families in the health system.

3 years later, I am writing a letter of nomination to the General Accounting Office of the United States of America, nominating Regina Holliday to become a member of the Committee that sets direction for Meaningful Use. In 2012, it appears that a lot of other people think that electronic health records aren’t meaningful unless patients can use them – great to see that this is a statement rather than a question :).

I’m posting my letter below, so that you may copy, improve, and nominate Regina or the patient advocate of your choice. You can read the Federal Register announcement for this vacancy here. Letters are due in just 5 days, May 25, 2012, so be sure to do this as soon as you can.

I just spent 3 days with Regina at HealthFoo (post on that coming later), and I took the photograph on the right during our daily #walkwithadoc-and-an-artist. I noticed a person who’s able to enjoy her life and the people around her. She brings optimism, energy, and compassion to literally every conversation we have. At the same time she tells me she is on a mission – she will do whatever it takes to change the role of patients and families in health information technology and health care.

Comments, as well as a link or paste of your letter, are welcome below. Just make sure you send a copy to General Accounting Office like I did.

May 20, 2012

General Accounting Office
441 G Street NW Washington, DC 20548
Also via email: [email protected]

RE: Nomintation: Regina Holliday, Health Information Technology Policy Committee

Dear Gentlepersons,

I am writing to nominate Ms. Regina Holliday to fill the current vacancy for a patient advocate on the Health Information Technology Policy Committee.

I have known Ms. Holliday for 3 years, when she began her work advocating on behalf of patients and families impacted by the lack of access to information in their health care. Since that time, she has become a national expert in Meaningful Use, patient and family engagement in the health care system, and communicating the benefits and challenges of health information technology.

Ms. Holliday brings value and diversity in her voice in that she represents the interests of patients and families based on her own personal experience, rather than as an employee or an affiliate of a consumer advocacy organization. In my opinion, her unaffiliated state will make her representation accessible and responsive to the public who she will serve. She has already demonstrated the ability to successfully collect, synthesize, and communi- cate the most vital information necessary for an informed policy conversation. I have per- sonally observed Ms. Holliday in dialogue with health professionals, health IT leaders, health system leaders, patients, families, and consumer advocates and feel she is able to engage in detailed conversations about use of Health IT in medicine to improve patient care and overall health.

I believe Ms. Holliday will make the best contribution to the Health Information Tech- nololgy Policy Committee, with lasting impacts for Americans seeking to acheive optimal health through a health care system enabled by the technology.

I am disclosing, with Ms. Holliday’s consent, that I am an employee of the organization where Ms. Holliday receives her health care. I am not involved in the provision of her health care and this letter is written on behalf of myself.

Feel free to contact me with questions about this nomination.

Kind regards,

Ted Eytan, MD MS MPH
Washington, DC, USA

HTTP://WWW.TEDEYTAN.COM • TWITTER: TEDEYTAN

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It’s here! The Regina Holliday interviewed by Ted Eytan StoryCorps Interview (audio)

Regina Holliday before StoryCorps Interview

Right before the interview

StoryCorps Certificate Ted Eytan and Regina Holliday

It’s “in” at The Library of Congress

Play

(click here to download directly into iTunes)

At long last, I have acquired the audio (as has the Library of Congress) for the interview of Regina Holliday ( @ReginaHolliday ) that we did, in April, 2011, for StoryCorps ( @storycorps ), in conjunction with the opening of the Kaiser Permanente Center for Total Health ( @kptotalhealth ) that month. The Library and StoryCorps do not routinely make every recording available online, so I am posting it here.

There were tears, there was laughter, and I am even more deeply honored to listen now than I was to be there with Regina in April. The photograph on the right was taken right before we sat down that day.

One of the questions we were both asked to answer was “What is Total Health to you?” and it’s still the same answer, being able to stand up, walk from my home, and have a conversation like this. I got to ask Regina some of my burning questions about the future of health care, medicine, and social media and her answers then are still guides for our future.

More importantly, I got the opportunity to listen to Regina talk about her art, her family, and the love of her life. She mentions in the interview that she needs the entire internet to get the level of engagement that she got from one person, Fred Holliday. And even that’s not enough. It will never be enough….

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Photo Friday: A focus on pharmacists, at Howard University, Washington, DC, USA

This week’s photograph is of Whitney Bowman-Zatzkin ( @MsWz ) and Regina Holliday ( @ReginaHolliday ), who along with myself were special guests at Howard University College of Pharmacy. Whitney led us in guest lecturing in a course on “applied concepts in health policy,” taught by Samuel Stolpe, PharmD.

I’m prototyping new lenses these days, and my fixed-lens, wide aperture model caught Whitney in its narrow depth of field, which is a good metaphor for our time together. When Whitney and I spoke before the session, we agreed that the focus would be on the connection between Whitney’s work as the Manager of Policy and Advocacy at American Association of Colleges of Pharmacy and the patient involvement/support. That’s where Regina came in.

I have been living in the shadow of Howard University, in the Striver’s Section neighborhood of Washington, DC, since I moved here, so it was a great honor to be invited last week. As great an honor as any dialogue I’ve ever been invited to be a part of. I have known Whitney since we code-a-thonned together last year (See: Don’t forget the hot sauce! Washington DC’s Health 2.0 Code-a-thon), sharing the technical and leadership challenges that come with innovation in a short time span. She is a great teacher and integrator of the patient perspective across all the health professions.

My other photographs of Howard from the day are a little random – remember, new lens, just learning how to make it work….:)

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#TheWalkingGallery – Day 2 of #dchealth DC Health Innovation Week

I don’t know what else to say except “huge success.” As I was talking to Susannah Fox (@susannahfox) near one of the technology alcoves at The Center for Total Health (@kptotalhealth), I was struck (again) at how far we had come from a borrowed conference room and a donated delicatessen wall. Or really what I mean is, how far Regina Holliday (@reginaholilday) has come.

The jackets were inspiring, moving, heartbreaking, full of life and love.

I would say my two favorites are David Hale’s (@lostonroute66); I am drawn to it because of the similarity to the album cover of Gerry Rafferty’s Baker Street (link to iTunes) (“And when you wake up it’s a new mornin';The sun is shinin’ it’s a new morning;You’re goin';You’re goin’ home.)

 

And Lygeia Ricciardi’s (@lygeia). The moment I saw it I was moved by the mother-child bond between herself and her daughter Ada.

After Regina made her remarks, we lined up along the walking wall, and covered it , 80 feet worth. And then we went for a walk (some ran), of course.

Thank you Regina for letting me be a part of your work and world, and for the great start to DC Health Innovation Week. With thanks also to Marsha Goodman-Wood (@goodmanwood) who entertained us with her music; the children standing in front of the walking wall in the photo below are hers.

The rest of my photographs are below. Feel free to use them in your blog posts, tweets, or other work


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Riding DC’s @bikeshare to give @ReginaHolliday the jacket I will wear at #TheWalkingGallery – quintessential #epicenter

It was very important that I not take any fossil fuel transportation to deliver the canvas which Regina Holliday ( @ReginaHolliday ) will transform with her talent for The Walking Gallery event on June 7, 2011, and thanks to Capital Bikeshare, (@bikeshare) I didn’t have to.

We talked about the event, about what we think it means, and how we would introduce it to people we talk to. We plan to open the event on behalf of Kaiser Permanente and the artists, respectively, and could use your help. Regina suggested that ask the crowd how we should frame things, which I think is a splendid idea, so if you wouldn’t mind writing in the comments what participating in this event means to you or what it should mean to others, we would both be appreciative.

Mostly, though, I enjoyed visiting with Regina about what health means and how important it is to embrace our health in daily life, as passers by said, “Happy Mothers Day,” on this sunny Washington day.

From a donated gas station wall to one of the most technologically sophisticated digital walls in existence, the collaboration in the #epicenter never disappoints. Plus look at that smile!

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