The Partnership with Patients Agenda

The Partnership With Patients Summit:

The first patient summit in Kansas City supported by crowd-funding, designed using social media with art by Regina Holliday

Patients, Providers and Health Professional from all over the United States will convene in Kansas City, Missouri, from September 21through September 23 to present speeches on Health Information Technology, Patient Safety and Quality and Media and the Message of Patient Advocacy. 

For too long patient input has been an afterthought in health policy.

We are changing that.

This summit focuses on education, networking and partnership—of patients, providers, vendors and explains the relationship between government policy and patient advocacy.  Conference attendee’s will suggest ways to promote patient participation, learn about the effect of change and growth in the tech sector on patient advocacy, and use social media to further the voice of the patient in national health policy.

What makes this a must attend event?

The Partnership with Patients Summit is organized completely using the free tools of social media and by a loose confederation of advocates, providers and vendors volunteering their time.

The registration page is on eventbrite: http://partnershipwithpatients.eventbrite.com/

Partnership With Patients partially crowd-funded by both Medstartr and Health Tech Hatch 

The non-profit partner is the Society for Participatory Medicine who is helping fund patient travel scholarships, http://participatorymedicine.org/about/donations/

Internationally recognized patient speakers such as Dave DeBronkart, Trisha Torrey and ReginaHolliday will be presenting.

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group     

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Thank you to our Sponsors!

Event promotion, Patient Travel Funding and Sponsoring Lunch Saturday
















       

Thank you all of our other sponsors 


Friday 21, The Walking Gallery: 6:00pm to 8:00pm

To begin this conference The WalkingGallery gathers on Friday night Sept 21, Kansas City Marriott Downtown 200 West 12th Street, Kansas City, MO 64105 light refreshments will be served

Twitter hashtag: #TheWalkingGallery

The patient voice — in the form of the Walking Gallery of Healthcare art event —will arrive in Kansas City as walkers from throughout the nation will display the stories painted on their backs of business jackets. Internationally recognized patient rights art advocate Regina Holliday will debut her latest works. 

  

"It will be exciting to see so many new members of the Walking Gallery gather for this event. At this point, we have 160 walkers around world representing the patient view within medicine. I am proud to be a member of the Walking Gallery," said Holliday, the Washington, D.C.-based patient rights arts advocate.

Saturday 22, Registration begins at 7:30am

Cerner will host the Summit Saturday and Sunday at their educational facility at Cerner Educational Building 6711 NE Birmingham Rd  Kansas City, MO 64117

Coffee and breakfast will be served in the exhibition area 

Saturday Morning 8:00 am in room A  (this room we will record.)

Panel presentation by Society for Participatory medicine 8:30-9:10 

A series of 4x4 presentations from sponsors 9:15-9:45

Explain dividing into three tracks

HIT and Policy

Session 1

10:00-11:45 am first group of 25 patients go on shuttles to experience theatre on Cerner Campus

Session 2

12:00-1:45 pm second group of 25 patients go on shuttles to experience theatre on Cerner Campus

Patient Quality and Safety Room A

Session 1

10:00-10:45: Pat Mastors and Partnership with/for Patients

Session 2

11:00-11:45: Patient Speakers and SpeakerLink Panel: Trisha Torrey, Dave DeBronkart, Tiffany Peterson, Kait B Roe

Media and the Message Room B

(Social Media/Activism/Public Speaking)

Session 1 Bunny Ellerin  on media

10:00-10:45

Session 2 Social Media speaker TBA

11:00-11:45

Lunch

11:45-12:15

HIT and Policy Room C

Session 3

2:00-2:45 Roy Foster: HIT and Meaningful Use 101

Session 4

3:00-3:45 HIT Pannel: What does tech have to do with it? Rosh Rubin, Joe Ketcherside and Jim Hansen

Patient Quality and Safety Room A

Session 3

12:30- 1:45 Device Safety Panel: Tobia Gilk on MRI, Joleen Chambers on Implantable Devices

Session 4

2:00-2:45 Ann Becker-Schutte, PhD and Bart Windrum on Hospice and End of Life

Session 5

3:00-3:45 Jari Holland Buck on Patient Safety

Media and the Message Room B

Session 3

12:30 -1:45 W. Ryan Neuhofel, DO, MPH: Doctors and Social Media

Session 4

2:00-2:45 Lisa Fields: Rocking the Power Point

Session 5

3:00-3:45  Michael Millenson on new media meets traditional media

Closing Remarks in Room A

4:00-5:00

Dinner Served 5:15-6:15

Ignite-style speeches, (20 slides 5 minutes) begin 6:30-8:00

Shuttle back to Marriott 8:15

  

Sunday Registration begins at 7:30 am Breakfast in exhibition space

HealthCamp, an unconference will be held on Sept 23rd in Kansas City as part of the Partnership with Patients summit. Mark your calendars for the weekend of September 21st -23rd. HealthCamp will cap off an exciting weekend at Cerner’s educational facility in Kansas City. Continuing the innovation learning approach from the previous days, patients, physicians, nurses, technologists, health system and policy leaders, payers and suppliers will create session topics the day of the event focused on "Empowering Patient Engagement." The unconference process and the Center for Total Health itself will create a flexible and energetic collaborative environment for participants. Check out the HealthCamp Foundation home page for other HealthCamp information. 

Greeting: 8:00 in room A

Break into unconference sessions 9:00 am/patient speaker boot-camp

Session rooms B,C,D,E,F,

Patient Speaker Boot camp stays in room A to record speeches

9:00 am to 12:00

Grid times for Unconference

9:00am -9:45

10:00-10:45

11:00- 11:45

12:00- 12:45 Lunch and good byes to early departures Exhibition space

1:00pm - 1:45

2:00-2:45 Wrap up in Room A

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group       

For more information about the summit and to receive media access with press credentials, contact @ReginaHolliday on twitter or 202-441-9664

About Partnership With Patients

http://partnershipwithpatients.com/home/

This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy. You can read more about this on our website 

Cinder Blocks and Patient Summits

When I was a child I went to an elementary school that had few resources.  In fifth grade our class was donated a large amount of books.  We were very pleased to have them, but we had no bookshelves on which to place them.  My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinder blocks so we could make shelves.  The lumberyard manger said yes with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.  

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard.  Some of us grabbed the two by fours, some of us cinder blocks and some us combined the two to make a carry yoke for two students to heft.   We walked those blocks all the way back to school and up three flights of stairs.  Then we assembled those shelves and placed the books upon them.  We stood back and looked proudly at our work.  I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed.  It wasn't pretty, it wasn’t perfect, but it was ours.

Recently, I wrote Pecking Order, a post recounting a webinar call on May 22nd between patients, a contracted PR firm and CMS officials.  The call was supposed to be a collaborative webinar session replacing an in person patient summit due to severe restrictions on federal travel. Sadly during the call patients did not have much time to speak. That changed an hour and a half in, when I spoke out. The patients took over the call and spoke about our views on the CMS funded initiative Partnership for Patients. 

It became a call to action.    

In the 22 days hence we have done quite a bit.

On May 22 we grabbed the domain name for Partnership with Patients and began the facebook group.  At this point there are over 300 members in the facebook group from every field of healthcare: patients, nurses, programmers, doctors, venders, transcriptionists and lawyers.

On May 23^rd I posted Pecking Order.

On Thursday May 24^th I spoke with Kathleen Siedlecki on the phone.  I encouraged her and her team to attend Mark Scrimshire’s Healthcamp on June 4^th in DC.  

On Friday May 25^th I spoke to Dennis Wagner, co-director of the Partnership for Patients Initiative.  He apologized about the direction the webinar had taken.  He also said he would be joining the Walking Gallery.  I told Dennis we planned to crowd source patient ideas for how to best promote this patient safety agenda.  We scheduled a meeting with the P4P team at CMS offices on June 13th.

Over Memorial Day weekend, Kathy Nicholls, CMT, AHDI-F, Certified Inbound Marketing Professional, was hard at work volunteering her time to build the Partnership With Patients Web Page.  We bounced emails back all weekend.  I also spoke with advocates such as Helen Haskell and Julia Hallisy by phone.  Many of the advocates like Martin Hatlie, Pat Mastors and Amy Berman, that were part of the original call emailed back and forth throughout this time and in a spirit of sharing I looped the whole PR team into the email thread.  I got Out of Office replies from them all.

It was a holiday weekend, but for many advocates this is more than a job, it is a mission that we ply 24-7.

By May 31^st the Partnership with Patients webpage was up.

Friday June 1st, Kathleen Siedlecki, who ran the P4P webinar call, visited the mural 73cents. I heard about the constraints both she and the government work within.  More than ever, I appreciated the freedom of being an independent advocate that collaborates with others.

Saturday, June 2nd, I spoke with Chuck Denham, MD from TMIT and Jeni Dingman, patient advocate about this new collaboration.

June 3rd -6^th, Lori Nerbonne and Lisa Morrise would attend the IPFCC (Institute for Patient and Family Centered Care) Conference. And crowd source thoughts there.

Monday June 4^th, During the HealthcampDC we created a collaborative dialog in real-time and designed a session on the spot talking about Partnership with Patients and Partnership for Patients.  Kathleen Siedlecki attended, as did many advocates. Attendees included Ted Eytan MD, Whitney Zatzkin, Greg Masters, Kait B. Roe, Susan Hull RN,  Fred Trotter,  Kristen Andrews, Robin Miles-McLean, Tiffany Peterson and Pat Salber MD.

We were trying to build a grass roots strategy aligned with CMS and ONC goals ideally within one week.  We wanted to inspire regular folk to join the movement, like Robin Miles-McLean who jumped in feet first. Gregg Masters spoke about videos that could engage.  We spoke about connecting communities and connecting forces.  We spoke about sharing info on up coming events, as we did not know when meetings and conferences were being held both locally and nationally.

Fred Trotter told us about his focus on writing software for patients that reduced medical error.  We spoke about bringing the e-patient community into this dialog.  Susan Hull shared her experience of sitting on airplane ride beside a mother of 2 kids with cystic fibrosis, the mother had the marvelous idea she should administer drugs at the hospital and receive education she could carry home.

We spoke about creating a patient safety poster series for placing hospitals that are visually stimulating and not patronizing.  These posters could be images donated by artists.  We also could create a competition; young children could enter and receive a prize for best posters that support the Partnership for Patients initiative.  We acknowledged that many patients do not know their rights or safe practices within a hospital setting. We also spoke about QR code hijacking and other edgy ways to get the message across.

1-800 number for healthcare harm was an idea that was very well liked by the group.  We also wondered if that could be used to create a database of regional healthcare harm.  We talked about the potential of viral twitter attacks on hospitals with reports of harm, yet are not responding to those they injure.

We talked about the power of Engage with Grace.  We also talked about Honoring Choices programming from PBS coming out of Minnesota and Gunderson Lutheran’s amazing compliance with Advance Directives.

We spoke about a board certification in patient safety that is now available and wondered if any patient had taken the course.   We also spoke about SpeakerLink.org and the importance of including patients as paid speakers.  We spoke about the Plantree model of care and IHI open school and how that applies to this movement.  We finished up focusing on a photo resource that would show real pictures of patient care.  That has already begun on flickr, but it needs to be on Pinterest as well.

From that discussion and prior phone discussions with other advocates, I created this power point that was presented before CMS: Partnership for Patients meeting yesterday.

Partnership with patients

View more presentations from Regina Holliday

It was well received.

Dennis Wagner said he could see that some of these suggestions were immediately doable.  He said the next slide set he designed would have no stock photography within it, only crowd-sourced real pictures.  He would visit our flickr page and learn more.

The CMS team re-iterated that they did not believe the next meeting would be an in person one and it would need to be webinar again.  I then specified they must try to open it up to more people, so they should create a twitter hashtag so many more voices can be part of this discussion.  Kathleen thanked me for coming to the meeting and said she really enjoyed hearing our strong voice in this space.

I also announced that we were creating our own Partnership With Patients Summit in Kansas City September 21-23, 2012.  I spoke with Clay Patterson and Amy Burgess at Cerner and the folks at Cerner have approved hosting us in their continuing educational facility on the Riverfront property and former address of Sam’s Town Casino in North Kansas City.  


I loved that facility when I visited it one year ago. Think Kaiser Permanente Center for Total Health, but even cooler, with more neon lighting, a town square and some music from Tron.  Some of the Cerner team looked at me quizzically when I told them how much I loved the space, they said, “You do know this is just an old failed casino, right?” 

But I see with new eyes.  I see it with the eyes that saw cinder blocks become bookshelves. 

I see what can be without old prejudice.  When I look at Cerner I don’t see an old legacy EMR system.  I see a future cloud/ legacy composite that could save lives.  I see one company among many, many companies willing to collaborate with patients.  I see what amazing things we can accomplish if we all work together and shoulder this task.  I see a space where we can come together and educate patient speakers about HIT, patient safety and health policy.  I see the potential of helping 200 new patients advocates as the next generation of e-Patient Dave’s, Trisha Torrey’s and Regina Holliday’s.

So here it is the ask:  Who will take up their cinderblock and follow me? Register here.

The Birth of an e-Patient

I met Ileana Balcu or @yogileana at HIMSS12 in Las Vegas and I handed her gallery jacket. 

I met Ileana and looked into her kind eyes and held her in my arms.  She sat within my session room all day and never failed to ask the most piercing questions.  She would speak slowly and with great determination and a slight accent. Some might think she and her questions could be brushed aside; after all, she is only a patient. Some might think her soft, yet she is as unbending as steel.

And she is so very brave.

For many years, she wrote a blog called: “Beating Social Anxiety.”  On that blog is post after post of Ileana coming to grips with asking questions in public.  It details the extreme stress she feels when asking questions of simple service personnel, let alone authority figures. 

This beautiful soul, always the outsider, was willing to wear a painting on her back depicting worst moment in her life in a room filled with strangers while asking tough questions about healthcare.

This is the patient story of Ileana.

There is a bible of expectation that many pregnant mothers read.  It tells us to avoid caffeine and eat whole gains.  It tells us all about the wonder and joy of carrying a child.  It tells us to avoid reading the back of the book where all the complications are explained.  We should avoid the extra worry that reading will bring unless we already are having problems. 

But who tells we are having problems?

Ileana Balcu was nearing her sixth month of pregnancy when her blood pressure began to rise.  Things were said, comments made, but the veiled innuendo of worry did not permeate Ileana’s happiness and denial was easy.  She and her husband were not told to monitor Ileana’s blood pressure or watch for certain symptoms. 

They did not know what to expect.

On Valentine’s Day nine years ago, Ileana’s heart was broken.  Whilst you and I ate chocolates or went to our children’s school parties, Ileana was in the hospital horrified at what the nurse was trying to tell her.  She must deliver immediately as she was suffering from preeclampsia.  Her husband was taken aside and told by the attendee that they would do everything in their power to save Ileana’s life.  At that moment he realized that he might lose his wife and child.

Their little Angel was stillborn at 24 weeks.   Ileana and her husband went home alone without their firstborn son.

In her sorrow, she sought out answers.  She joined a wonderful patient community at preeclemsia.org  She found doctors who specialized in her condition and worked on creating a database of information on early onset preeclampsia.  After three years of research, she and her husband decided to try again as fully informed parents.

They sought out a treatment team consisting of a PCP, specialist and a high rick OB.   Ileana insisted on the best care, often shuttling records herself from practice to practice. She was horrified that often computer systems did not work with one another inside of the same hospital.  She charted her blood pressure and was aware of every nuance of her body.

Robert was born at eight months and now is a healthy and happy six year-old.

A new Ileana was born as well; she was now an e-Patient.  She had walked through the crucible and came out the other side.  She would spend the next years studying HIT and defeating her social anxiety so she could advocate for others.  She would do everything in her power to stop the suffering.

She would blog.  She would tweet.  She would stand before us all asking such powerful questions. 

Yes, Ileana is so very brave and we are all blessed to know her.

Cost Benefit Analysis

Yesterday, I had the pleasure of attending several sessions at the Aligning

Forces for Quality: National Meeting in Washington, DC.   Upon arriving at The Grand Hyatt, I was greeted with the utmost welcome by Alicia Aebersold and guided to a session hosted by Mike Painter, or as I have known him on twitter for these past few years @paintMD.

The session was entitled Stakeholder Perspectives on Addressing Health Care Costs.  I set up my easel while Mike introduced the panel of Speakers: Andrew Webber (National Business Group on Health-Moderator), Kathy Hutcheson (South Central Pennsylvania Alliance), Vince Kerr (United Health Care), Karthik Shyam (AIR), and Barbara Tobias (Cincinnati Alliance).  As I was assembling my supplies the lovely Kalpana Ramiah, DrPH, MPH, Principle Project Specialist for Health Policy and research at the American Institutes for Research offered to help me in any way and proceeding to get me water for my brushes.

And so I began painting this piece “Cost Benefit Analysis.”

I started painting the lovely swooshes of color that Aligning Forces used on many of its session handouts.  I listened to Vince Kerr take us to a fictional other world where diseases affecting all newborns and valedictorians were overcome by this society’s concentrated effort.  And then he brought us back to our world with the cold fact that all income increases in the past decades were wiped out by health care costs.

So, I painted deep space and the constellation that was most apparent is symbolic of the dollar sign.  In the extreme right foreground of the painting a green planet revolves with its surface deeply scored by such monetary symbols.  Here our valedictorian rests and looks upon the viewer.  He is unwell, yet graduating. And if not for health care reform his insurance coverage would lapse upon re-entry into a jobless economy.  The valedictorian throws a babe in the air in that timeless favorite game of childhood.  The baby smiles at the viewer, blissfully unaware that without a change of course in the arc of spending, there will be no healthcare dollars left for his adult life.

I then painted that arc as a rocket spiraling ever higher.  The conversation on the panel then turned to patients and their part in this mess.  The lack of transparency in pricing and use of EOB forms that read more like hieroglyphs than billing documents was remarked upon.  Patients could compare and choose a dishwasher by quality and price but not their healthcare choices.  Vince continued on, listing inappropriate procedures and wrongly prescribed drugs that waste money and unfortunately lives as well.    

Patient awareness of true cost was considered a key element in creating future payment models.  And that means more than just being invited to the table, that means patients must know the plan in its entirety.  Otherwise, we are only a pawns within a larger game.  At this point the health care spending rocket gained a rider.  An old cowboy sits upon the rocket straddling it like a rodeo bull as he tries to understand a medical billing record with the aid of a magnifying glass.  He fails in the attempt as the rocket spirals ever onward.  Some of you might recognize this homage to another piece of work.

Dr. Strangelove anyone? 

The image of Major Kong riding a nuclear bomb to his own destruction is rather iconic in film circles.  Do you know character actor played Slim Pickens that role?  Further, did you also know that the director Stanly Kubrick only let Slim see his part of the script and Slim played the role “straight” not knowing he was in a comedy?  When Slim arrived in England to film in 1962 he was wearing a cowboy hat and western clothes and the cast and crew marveled that he had come in costume. 

They had no idea that Slim wore his western cloths as regular attire.

Slim’s character is a determined patriot who fulfills his mission regardless of many system errors and dies in the attempt, with no knowledge that he has set off a series of events that will insure a complete destruction of the world.

I could not think of no better representation of patients in the current world of healthcare.  We are often the straight players in this farce, given only enough information to launch the rocket but not to steer its course.

Finally, I heard a phase that I have come to revile.  “Patients need more skin in the game.”  So I painted a woman completely bare.  Her body has become a part of a Monopoly game as she prepares to roll the die and land on chance.  In one hand she holds the die in the other the play money from the Monopoly game.   You know the gold color bills, greens, the blues, the ones you hoard trying to win the game.  She will pay them out having no idea how much she will have to spend or how effective her treatment is within a national aggregate.

How could she possibly have more skin in the game?  She is the one laid bare upon the examination table.

After the Health Care Cost Session, I saw the luncheon plenary by ePatient Dave. DeBronkart.  It was entitled “Let Patients Help: Engaging the Ultimate Stakeholder.  As usual Dave was amazing.  His speech took the audience on a rollercoaster ride of information, facts and figures and the emotional reality of the patient experience.   I quoted his phrase within the painting: “Patient is not a third person word.”



And while listening to his tale I painted one last constellation in the sky. This was the patient.  He stands with his hospital gown gaping open, his face concerned as he offers you his hand.

He has nothing left.  His hair is gone, his clothes removed.  Yet still he offers all he has to make healthcare better.

All any of us have in the end, ourselves alone.

Meeting e-Patient Dave

It was the day before The Walking Gallery and I still needed to paint 15 jackets. 

On evening of June sixth my apartment was in total disarray. I was painting in the kitchen.  My friend Courtney Mazza was painting in the living room and children were running back and forth occasionally screaming for toys.  In the midst of this chaos, I heard a knock.  I thought might be the take out we had ordered, but no it was Bob Filley, Anita Samarth’s husband.   He currently works in Commercial real estate, but he majored in fine art.  He had offered weeks before to paint, and here he was in the 11^th hour.  He stood before me in the hall wearing a nice suit and lovely cotton shirt.  Behind me the room erupted with the jealous squeals of small children.

“Is it a bad time?” He asked.  I practically grabbed him out of the hallway.  “NO, it is not a bad time we would LOVE it if you could paint a jacket or two, or three.”  Bob looked around the chaos of the room, and carefully removed his jacket and nice shirt.  He stood in his t-shirt at my dining room table and began to paint.  He painted e-Patient Dave. As he painted I explained the life of e-Patient Dave.  I told him of Dave's Advocacy

"Wonder Twin powers, Activate!"

 And I told him of Dave's history of fighting cancer:

The Man Who Lived

It was amazing.  Have you ever scene that scene in a war movie where the bullets seem to be flying by the hero in slow motion while he bravely soldiers on unfazed by his surroundings?   That was Bob.

And he painted such a joyous Dave.  This is Dave De Bronkart’s Jacket by Robert J. Filley.

I love this jacket.  Bob filled the back ground with a series of descending kidneys.  He then began using sunshine tones to build up the smiling visage of Dave.  Using a wet into wet technique often used by oil artists, Bob built layer upon layer of wet paint into the shinning countenance of e-Patient Dave. He then worked a deep blue capital “E” into the background of the piece. 

Upon my table lay a piece of impressionistic fine art.  Bob finished Dave’s painting looked up and said “Next.”  Bob would finish two more jackets, before succumbing to exhaustion later that evening.

Dave loved the jacket and l wore it throughout The Walking Gallery.  But Dave and I go way back, and often it seems our stories are twined one within the other.  So, I painted Dave an additional jacket.

This is “Meeting e-Patient Dave.”

I met e-Patient Dave on May 4^th 2009.  I went on Twitter for the first time on May 3^rd, and wrote my first tweet: “I am trying to talk with Christine Kraft and epatient Dave.”  By the morning of May 4^th Dave had found me.  He sent me emails throughout the day as we exchanged details of my husband’s cancer care.  Within each missive he seemed more and more concerned. By that evening, I was talking with Dave on the phone.  By that night I was speaking with Dave’s own oncologist.

It was such a sad night.  As I talked with Dave I was making macaroni and cheese for dinner.  My three year-old Isaac was constantly wrapping his arms around me as I cooked and tried to talk.  The poor little boy he was so starved for time with Mommy in this the eighth week of his father’s hospitalization.

And as I danced around the kitchen balancing both motherhood and patient advocacy, the phone cord spiraled around us both.  As I recounted horror after horror to Dave, I looked down at my phone cord bondage.  It seemed like I was being embraced by hundreds of little “e’s.”  

That was an important night.  That night I learned about the term e-patient.  I learned about ACOR (Association of Online Cancer Resources).  I had been doing research for eight weeks but had never found ACOR.  I would converse via email with the list founder Gilles Frydman and would see post after post from people across the world fighting kidney cancer.

And I learned from Dave’s Doctor that soon it would be the end, sometimes there is nothing that can be done. Sometimes it is too late. 

So much happened on May 4^th 2009.  I stood within a kitchen wrapped within a cord of old technology whilst embracing the new.  I became an e-patient.

And two days later I would create a blog called “Regina Holliday’s Medical Advocacy Blog.” 

The weeks would pass and Fred would die, but I have never stopped talking with e-Patient Dave.  We are twined together because of Kidney cancer.  His story is light and ours is dark.  But both stories are so very important. 

So Dave has two jackets: one light and one dark, because to create great change within the culture of medicine we have to accept them both.

Not long ago Dave gave an amazing TED speech and it caused a lot of ripples in patient advocacy circles.  A few of those who felt those ripples emailed me and told me, "You should really meet this guy called e-Patient Dave."

I chuckled and said, "I have met him.  We go way back."

The Walking Gallery

We are the Gallery that walks.  We are the Patients that wear our stories on our backs.  Soon we we shall to come to a city near you and and create gallery space in moments.  We won’t pound a single nail into the walls to hold the art.  Dozens of people will walk into a space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30^th 2009.    That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

On August 20^th she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I'm so happy to have a wearable badge of courage - just wrote an index card for myself to remind me of the importance of patient advocacy by "any means necessary."  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30^th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street. 

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  ”Data Prison” on October 5^th 2009,

“Titanic” on December 14^th 2009

“First Responder” on January 12th 2010.

As Jen and I began to tweet about the jackets, Elizabeth Cohen from Empowered Patient on CNN would see our twitter stream.  She said she would write a piece about the jackets on CNN health as they captured the zeitgeist of the patient data access movement that @ePatientDave had so apply entitled: “Give Us Our Damned Data.” 

Due to Jen’s very public appearances wearing patient advocacy jackets, two other thought leaders would contact me to obtain images they too could wear.  Chiara Bell from Enurgi, later to become part of Univita Health, would ask to have a jacket of her own.  She wanted to show the importance of the caregiver in patient care.  I made for her the “Caregiver’s Clock” a painting that depicts both the family member as caregiver and the professional caregiver caring soothing the terminal patient.

Finally, Roni  Zeiger from Google Health would contact me.  He wanted a jacket that depicted the passionate need for data access felt by the patient/caregiver.  I painted for him “Data Cloud” that recreated my desperate feelings to find out the truth via the Internet.  Roni Zeiger then wore that jacket at the Community Health Data Initiative event on June 3^rd 2010 before a crowd of hundreds including Secretary of HHS Kathleen Sebelius.  Roni would finish his presentation about the Combining of HHS Hospital Compare with Google’s Fusion Tables Cloud Database App, by turning his back on the audience and saying, “The last thing I would like to mention is that, let’s not forget all of these data points tie back to individual people and their stories.  And many of you probably know of the work of Regina Holliday.  She is an incredible woman I met recently.  An artist. She made- I am not a fashion guy, but she made this jacket for me.  Feel free to come up after to get a closer look.  We made a deal.  She would make this jacket for me, if I would wear it at important conferences.   This is the first time I am wearing it.   And it is about the importance of data and the importance of talking about data and the importance of technology in the future if health care.”

So, that is the story of five jackets that I painted to spread awareness.  Five jackets. They bring the “patient” into the room and onto the panel, when no patient was invited to attend.  They remind me of the encaustic mummy paintings from 1^st century CE found in Egypt.  These amazingly real and poignant faces stare out above dried sinew, wrappings and bone.  Their eyes sear our souls and remind us, I was once one of you who lived and played, who laughed and loved before I met this fate.   They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real.  The jackets worn by these brave few do the same for data, and pie charts and graphs. 

When you sit in an audience listening to a power point presentation, and the faces on these jackets stare back at you; it changes things.  It adds an edgy sense reality to dry recitation of data.  It wakes you up.

Perhaps you will have the honor to wear one of these creations.  It can be quite unsettling.  People will stop and stare.  You can now enter a conference and feel like an outsider.  Ostracized.  You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room.   People will point and talk about your back like you are not even there.  You are a “case,” an object, you exist to be described and critiqued.   And after being at a conference all day, you can take that jacket off, and be normal again.  Or not.  You can “come out.”  You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit.  You can cease to be defined as the cog you appear to be in the machine called medicine.   You can be simply patient.  You can tell your personal story and reach your inner center as a patient.

Perhaps my painting will help you.  Perhaps it will be the icebreaker you need to let go of the ubiquitous black suit that blends in at a medical conference.  Perhaps it will be way to open up about why we are doing all of this important work.  We are doing this to help patients heal.  We are doing this so we can all live happier lives.

So… CALLING ALL JACKETS!  CALLING All ARTISTS! I need your jackets, I need your stories.  I need other artists who would like to join a movement.  Never let anyone tell you, that you do not have a voice.  Step up and Speak out.  We get great change by doing great things.    You will be surrounded and loved by others just like you.  It shall be a great fellowship of those deeply invested in patient empowerment.    

And then you shall go forth and wear your jacket at other conferences spreading the word about the importance of patient data access and truly patient centered care.  And sometimes you will be the only “patient” in the room.

But you will be brave and you will be proud, for you are a member of The Walking Gallery.