The Web We Weave

On January 29^th, 2014 I was honored to present at the 1^st Health Informatics Tri-State Summit on the campus of the University of Southern Indiana in Evansville.  The room was filled with energetic folks with interesting questions.  I was honored to present and paint.  This was of those venues where I painted in the front of the room and occasionally threw out questions to the speakers whilst painting.

At the event, I painted this piece entitled: “The Web We Weave.”

Gabriela Wilson began the day by greeting us warmly.  Peggy Graul explained the schedule of the day.  She even mentioned the twitter hashtag: #hitsusi and that made me very happy.  You can see it archived on Symplur. While they spoke I painted a swirling winter sky. As they explained the foundation upon which they plan to build future conferences, I painted the new earth ready for seeds.  Then I put down my brush and began to speak.

I delivered a speech entitled the “Power of Stickers” at 9:15.  It was very well received.  After my presentation some audience members spoke to me during the break.  One was a lovely woman mentioned she was going to DC soon with her life partner to be married.  I painted her into the painting at the upper left holding a small rainbow flag.

At 9:30 I was so excited to see Jeff Donnell, President of No More Clipboard speak.  This is my third time to see him speak and he is always great.  He began by blasting bad stock photography of patients used by so many healthcare institutions.  He explained what was happening in the HIE (Health Information Exchange) in Indiana.  They are doing some great work. They are also working on a pilot that got me so excited I copied its title right from the state of Indiana HIE site: “Implantable Cardiac Device Consumer Data Integration -- Use HIE to engage the patient in care management for chronic conditions and diseases by allowing health data to flow from an implantable cardiac device to both an EMR/patient portal and the patient’s PHR.”

While Jeff was discussing these topics I began to paint and HIE web into the painting.  This wasn’t the beautiful web of the orb spider. This was a cobweb.  I have attended HIE meetings all over the country.  Some systems are successful some are not, but most were built in fits and starts without a concept of over all design.  But like the common cobweb these structures still do the job of catching things. 

Then Jeff spoke of his work trying to incorporate patient data access to the HIE as part of an ONC Challenge Grant.  He said he now knows why they are called Challenge Grants because there was no blue print for patient access.  Then I realized the metaphor of a cobweb was more sweeping than was intended.  Unlike orb spiders, cobweb spiders do not live in their webs; they just use them and abandon them.  I fear HIE’s may suffer a similar fate if the patient is not made at home within their structure.

I painted a circle of people holding up the web.  Peggy Graul is front and center since she brought us the conference.  Jeff stands, clipboard in hand to the right distant side of the web.  He stands beside our next speaker Andrew VanZee.  

Andrew is the statewide Health IT Director. He elaborated on Jeff’s point and informed us of his focus on folding rural communities into the structure of an HIE that was designed with metro areas in mind.

Next we had a lovely lunch.  They sat us all in the same room at long tables instead of table rounds.  It was great!  It felt a little bit like eating in elementary school when friends surround you. 

Next up was Sunny Williams, VP of business development Telemon Corporation.  This was a high level talk about technology and telecommunications and how they apply it to healthcare. I placed Sunny to the far back left of the painting.  Her speech was a good speech about an interesting topic, but seemed out of phase with the other speakers.  This crowd had a relatively low adoption of social media and needed more information focused on their unique needs.  I did tweet my disagreement with her statement: “Who has time for social media with all you have to do?  There is a paid (marketing) workforce that does it.”  Social media is always more real and therefore successful when it is done by the individuals within an organization.   If social media is done well, you will have more free time, not less.

Next Keith Kelley, VP Professional Services, Indiana Health Exchange began to speak and I painted him into the lower right side of the painting.  He was a great speaker and as he spoke the room became more informal with folks joining in shouting out questions and answers.  He added greater nuance to the words spoken by Jeff and Andrew earlier in the day.  

Giving examples of HIE was working in Indiana, he mentioned that some towns with competing hospitals are sharing info with their Cerner systems. He ended his talk with stating consumers would be the ones to change health care. While Keith spoke, I realized a focal point was missing from the center of the painting.  I decided to stick the torch from Indiana’s State flag right in the middle of the web.  It would act as a beacon to other HIE’s in the nation.  The torch shoots out sparks to its border brethren and in the distance we see the flags of Ohio, Illinois, Iowa and the United States.

Next Robert Hoyt, MD, Director of the Medical Informatics Program School of Allied Health and Life Science at the University of West Florida began to speak.  The last time I heard a speech with the breadth and detail that Rob gave was when I saw Eric Topol present at HIMSS in 2013.  His title was : “The Future of Health Informatics Don’t Blink.”  He covered so many things from sensors to legislation to culture. These were all important topics, but the part I painted was about a patient encounter.  Robert shared that when he was a young doctor he saw an elderly patient who had been seen by so many providers but not one of them had told the patient he was terminal.  Dr. Hoyt went over the man’s medical record and explained what things meant and that these tests and these treatments meant that he was dying.  The man thanked him.  The man just wanted to know.  So I painted the man holding hands with Robert.  The man’s bag is packed and he is ready to go.

 

The last element in the center above the torch is an LED light.  Right now in my life I am moving into a new house. The old 1930s light fixtures need 10-watt bulbs. 

A few years ago, that would have meant ripping out fixtures and replacing them.  Now with LEDs that is no longer necessary.  This is the beautiful thing about technology.  When it works well, it allows us to take more time for other things like caring for others.  It gives us the light to appreciate old-fashioned things and concepts, like holding hands while someone is dying.

Out of Reach: a jacket for JoAnn Klinedinst

JoAnn Klinedinst strides tall through the corridors of HIMSS.  She is the Vice President of HIMSS Professional Development.  She is accomplished and muti-talented, able to compose works of great beauty with the keys of a computer or the keys of a piano.  She holds multiple degrees, and not much in life is out the reach of JoAnn.  But this was not always the case.

This is JoAnn’s jacket for the Walking Gallery: “Out of Reach.”

When JoAnn was a little girl she ran and played like other girls.  When she was nine years old her stable world was rocked with a diagnosis. Her mother had MS.  JoAnn’s mother was only 38 year old and terrified. 

When JoAnn was 11 her mother could no longer walk, and she was confined to a wheel chair.  Little JoAnn had to take on adult responsibilities.  Her father worked during the day and cared for his wife at night.  JoAnn would do the cooking and cleaning and the shopping for the family.  He mother would send her to the market to get cheese and meat.  The counter would loom high above her and she could not see over it.

There I stuck her in a painting.

She is always reaching and is too small, whilst her mother’s shoulders hunch in sorrow for her little girl.   This was not the way it was supposed to be.  JoAnn should have her parents at her side.  The mother should walk with pride those few steps to the counter.  The world should be a brighter place of with sunny years filled with school concerts and two parents clapping in the audience.

But that is not JoAnn’s story.  Her story is standing tiptoe to reach up to a counter and returning home to mother who cannot do all the things that mothers do.

The years past and JoAnn married at 19 with her mother’s blessing.  “Go, live your life, “ she said.  JoAnn moved to Chester County, PA and she went to college.  After four years she graduated and both her parents attended commencement exercises.  JoAnn was so happy. 

The years went by and JoAnn had two children of her own.  She would gather up the children and “Grannie” for field trips to the Mall.  Toward the end of Grannie’s life, she was confined to a nursing home.  Her body was now paralyzed but her mind knew no bounds.  It would soar, her beautiful soul brought joy to all those around her.

JoAnn’s mother left this world on April 11, 2008.  She left a prison of pain and paralysis.  She left a little girl, now a woman grown.  She left a little girl who could play a piano.  She left a little girl who loved her so.

That little girl walks the halls of HIMSS inside a woman’s body, and nothing is out of reach for her. Nothing.  And she will dedicate all her days to helping little girls and mothers in their patient journey and she will do it with the music of data.   

The Island of New Jersey: HIMSS day 2

I rose early on February 23^rd and weighed down with luggage and painting gear trudged through the hotel lobbies and casino floor to the room in which I would be presenting my speech at HIMSS.  As I walked along, I noticed that the man in front of me had the tailor’s tacking stitches still in place on his suit.  I mentioned it to him and he thanked me profusely as he wanted to make a good impression that day.  Not long after, a woman mentioned to me that my large backpack was causing my skirt to rise in the back.  I readjusted skirt and bags and thanked her.  My son would say that’s karma.  I would say it is taking care of one another.

I was so excited to see many members of the gallery filing in to attend my session and was uplifted by their well wishes

As I arrived in my presentation room, I said hi to David Collins from HIMSS.  Then immediately began setting up my easel to paint that day.  I was the first Keynote in the session called Leading From the Future. Fellow Walking Gallery member Donna Scott introduced me.

Dr. to Dr.

View more presentations from Regina Holliday

I presented my speech combining together our personal patient story with the world of HIT using icons of pop-culture and images of art. 

The next keynote was Regina Benjamin, and I painted her Journey to Joy.

Soon there was a break for lunch, which I enjoyed in the company of Mary Ann Sterling.  Then I ran over to the room where Todd Park was supposed to speak, as I wanted to hand him his gallery jacket. 



When I arrived I saw Wil Yu from ONC speaking with HIMSS Staff and I asked if I could hand Todd his jacket backstage. 

They thought it would be even better if I handed it to him onstage.  So I surprised Todd with his jacket right before he began his speech.  It was a beautiful moment.  Then I went back to paint the next panel at in the Leading From the Future venue.

I began the painting “The Island of New Jersey” based on the presentation "Creating a Framework for Patient-Centered Health Information Exchange."  Linda Reed, RN, MBA, FCHIME, Vice President/CIO, Atlantic Health System, Robert Irwin, CIO, Robert Wood Johnson University Hospital and Lou Hermans, VP & CIO, JFK Health System delivered this presentation.  

I listened to member after member stress the name New Jersey far more than the concept of HIE (Health Information Exchanges) and so I began to paint a lonely island.  The focus of the speech was supposed to be: “The exchange of health information is important to our healthcare system, but more important still is helping patients become engaged, active participants in their care. As organizations exchange information, how can they ensure that the patient remains at the center of the HIE?“

Well, that was supposed to be the focus…

I began by painting a patient in the center of the island.  He looks slightly worried and is holding a puzzle piece.  He is the missing piece of the puzzle of HIE.  The panel spoke of the importance of e- prescribing, and coordination of the care team and so I began painting pills and doctors.  Then they spoke about the importance of some kind of patient portal and I painted a laptop computer, the blue button symbol and a scrolling patient story.  One member stated that patients could provide another set of eyes if we just let them see the medical record.  I painted a set of eyes to represent this concept.

Soon Q & A began and things got really interesting. 

Ileana Balcu or @yogileanna asked questions from the audience about the poor communication of the current system.  The panel answered broadly suggesting portal solutions for facilities in general.  Ileana then made it very clear that she was a patient in New Jersey using their system and it did not work well. 

The conversation devolved into a conversation about legal ramifications of data sharing and a lawyer entered the picture.

Then a member of the panel uttered the phrase I absolutely detest: “Patients need more skin in the game.”  So I wrote that phrase upon the Island of New Jersey.  Then I painted skin.  I painted skin around the eyes above and surrounding the blue button.  Now it seemed as though the blue button was less of a portal, than it was a ball gag wedged between the lips of a patient.  It is not enough to pour data into us; we must be able to respond back. 

An HIE must function as an exchange between provider-to-provider and patient to provider.  The data waves pound upon the Island of New Jersey and surround it.  How will it communicate with the outside world filled with patients?

Next Mark Scrimshire, co-founder HealthCamp Foundation spoke about the intersection of social media and patient engagement.

Empowering Health Care Engagement

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He described a new concept called AEIOU a recipe for engagement.  Actionable, Easy, Immediate, Open and Unobtrusive. So in the painting I created #HIMSS12, a ship of social media propelled by the twin sails of facebook and twitter.  Upon the ship a patient reaches out to the island of New Jersey and tries to communicate.  The ship is embraced by the data waves. 

Finally Rick Skinner, VP/CIO of Cancer Care Ontario, Cancer Care Ontario finished the day by telling us about healthcare providers who are engaging their patients through social media and other strategies.  Then the attendees filed out of the room.  I spent the next hour finishing the paintings as the tech team worked around me on the next day’s presentations and the custodial staff threw away the detritus of a conference.  Around 6:30pm I cleaned my brushes and said good-bye to the nice fellows running the sound system.  I was alone with my luggage preparing to spend an evening in the airport before my red-eye back to DC.

Then Antonio Fernandez from the Puerto Rico REC called me.  He asked if I would join the Puerto Rico team for dinner. I said yes and we had a lovely evening talking about what health is all about: friendship and community.

Slides and Ladders

Some people think we live in linear time. Those of us who have sat up with the dying ones know better. We know that as the weeks; turn into days, the trudging march of death limps on and the mind escapes. Our loving father or mother might become a child again as liquid fills their lungs and they gasp for breath.  There is a reason so many last words on the battlefield are the endless echo, “Mommy, Mommy Mommy…”

And as our loved one’s mind returns to youth and fairer days, so do we often do as well, seeing vivid memories of days gone by. It is like this outrageous game of Chutes and Ladders that is played upon a deathbed. We progress forward with each a gasping breath to our end, only to fall back in time within our mind to lollipops and summer days.  

This is “Slides and Ladders, “ Linda Stotsky’s jacket story for The Walking Gallery. 

Shall I tell you Linda’s linear life? I can tell you she was a good child. She is a mother of three. She dedicates her life to healthcare. She is @EMRAnswers on twitter. She personally saw to the installation of electronic medical record systems, knowing full well how positively they could impact care. Then she focused on HIE (health information exchange) implementing the first payer based HIE which included e-prescribing in Tennessee to help improve coordination of care. But before she did all of these things she was a loving daughter.

She was a child who loved her uncle I.O. Silver who was a compassionate doctor.  Every time she visited she would sneak down to his office and take a lollipop. At 13 she was a candy striper who helped the sick at the local hospital. As a teen she became a drummer and filled the home with music. 

She had her first two children when she was young, and grew into a woman at their side. “Mother” was the greatest job she ever had. Later she would have another child who was a child of her heart she named Micah from the proverb, “justly, love mercy and walk humbly with your God.” At 14 months they found out Micah had NF1 (Neurofibromatosis-1). It is a mysterious gene disorder that affects one in 3- 4,000 births. Many afflicted with this disease have benign tumors that grow at nerve endings throughout the body. Most often a symptom of this disorder is 7 or more café-u-lait colored birthmarks greater than 1.5 cm. Linda and Micah spent years informing others about this disorder. Micah has a mild case of NF1 and thankfully is tumor free.

When not caring for her children Linda spent years working in the medical field. She was an administrative assistant to a private psychiatric hospital, then a clinical practice manager. She waded through reams of paper and medical records constantly on the phone arranging pharmacy changes and trying to contact patients.

During this time she also became her mother’s caregiver. She juggled taking Micah to preschool and overseeing her mother’s care in the nursing home. Care coordination was non-existent. She became her mother’s walking medical record. Her mother was routinely left without needed medications and Linda would have ask to see the orders and administration record. She was constantly fighting for reinstatement of orders and proper care. 

Linda would often have to rescue her mother “Against Medical Advice.” She would check her out of the nursing home and into a hospital to get her mother stabilized.  The years went by and Linda saved her mother again and again.  Micah got so used to the hospital visits he knew where toys were kept at each facility.

This was their life: preschool, work, home and hospital. Up the ladder they went. Stabilize the patient, and then down they went again. Finally the day came when the doctor said it was time to let pneumonia run its course.  No more saving.  It was time to welcome the old man’s friend.  So Linda sat at her mother’s side for three days and watched her die.  The morphine would drip and the breathing would slow and each of them would visit another time within their mind. 

Why call this Slides and Ladders?  As a child playing Chutes and Ladders it always bothered me that the ladders never rose up to meet the slides; there were so many spaces between.  The game was so long and it seemed an eternity of rolling the dice, plodding along and only occasionally zipping ahead or falling behind.

In death it all combines.  The ladder, the slide, the woman and the child all exist within one moment.  Time stops.   Roles are revered and a child becomes the mother. With such grief she sends her charge into that dark of night, comforted by the milk of the poppy and nighttime prayers.

And the night watch never ends.  As the years go by, Linda relives these days within her mind.  Wondering how it could have been better.  Why not rescue her mother one more time?  Why listen to the doctor?  Again and again she climbs the ladder.  And within her sleep she slides and calls out: “Mommy, Mommy, Mommy…”

One of Us. One of Us.

Have you ever worked a flea market stall? I did for many years as a child. At the flea market we accept all sorts of folks. It is sort of like a carnival or fun fair. We put on the show, sell product to the marks and do not bat an eye at the deformed among us. I worked flea market back in the seventies and eighties. This was years before the Americans with Disabilities Act would be signed into law. Each weekend we would serve customers that rarely frequented traditional shops and establishments. All were welcome to roll a wheel chair onto our concrete slab where there was no small doorways to impede their course. And I would talk about Frankhoma pottery with a woman covered in severe burns or haggle about the price of shovels with the man whose face was a ruin of boils and warts. These daily scenes informed my childhood and taught me about the vast array of individuals who live within our world. I felt honored to help those who had suffered so.

Later in life, I saw the 1932 film Freaks with my husband Fred. It is considered by many to one of the most disturbing horror pictures ever made, as the director Tod Browning used actual circus freaks to perform various roles in the film. The film itself is endearing and disturbing in turn as the audience sees daily life in the world of a carnival. In an important scene within the film there is a wedding feast for the midget Hans and his fiancée Cleopatra the trapeze artist. As Cleopatra is a “normal” the freaks sing an initiation chant to her as they accept her into their ranks. The assembled mass of the disfigured and deformed raise their glasses in a toast of “We accept her! We accept her! One of us! One of us! Gooble gobble, gooble gobble.” Cleopatra does not take kindly to this welcome and throws wine in the faces of those assembled.

Last week thanks to an invitation by RTI’s Cindy Throop, I had the opportunity to paint onsite at the RTI Forum “Patients as Partners in Care: Engaging Patients through Health IT” at the National Press Club in Washington DC. As I set up my easel and began to depict the things I heard swirling around me, I thought of those long ago flea market days and the carnival in Freaks. My past informed the present and I began to depict the concepts that the various speakers presented as acts upon a carny stage.




This is One of Us. One of Us. It reflects my impressions of a HIT panel that included not one, but two patients.



In the center of the painting hangs a vintage side-show poster promising that, strange but true, RTI would have two patients on their panel. This is depicted in an over-the-top fashion by using a two-faced woman combining the faces of Donna Cryer and Ann Barlett. Both of their speeches were so powerful that they almost overwhelm the painting.

From Ann Bartlett we learned about the challenges of being diabetic and balancing life and a chronic condition. She also informed me of the power of massage in treating everyone from athletes to terminal patients. Her heroic form stands in the front of the piece providing a massage to a cancer patient. Ann is depicted in a gaping patient’s gown as she continues to provide care to others while she herself is a patient. Her patient/client is perched on the seat of a massage chair, as the client’s head rests upon the shoulder of a child. This is the child Donna Cryer.



Donna Cryer is a well known speaker and patient advocate that blogs and tweets as DCPatient. She is a liver transplant recipient and is well-versed in the challenges of providing chronic care. She presented a speech about busting myths about patients. Her speech was powerful and concise and focused on five myths.

The 5 Myths of Patient Engagement with HIT
DCPatient (As defined by Donna’s blog):

“Myth One: “Potato/Patato”

The most fundamental myth when discussing patient engagement is assuming that patients and consumers are interchangeable when asking the question what a segment of the population wants from HIT.”

I depicted this myth as two snakes twinned around each other. One is labeled patients, one is labeled consumer and an equal sign connects them. Together they form a type of caduceus. There have been many arguments in the world of e-patients about the nomenclature in discussions of patient terminology, but I must admit that I agree with Donna these terms are not the same. To use the word consumer instead of patient relegates the role to one of commerce, when the word patient means so much more than just a transaction. This path is very similar to the one the caduceus itself took. The twinned snake is an ancient symbol representing the dual nature of man, the sexual power of woman and man combined and the tantric points of the spine. Through years and cultures this symbol came to represent the God Hermes and eventually Mercury in Roman iconography. It became equated with a God who was a guide for the dead, who protected merchants, liars, gamblers and thieves. This became a symbol of commerce instead of a symbol representing the whole of man. The two meanings are not interchangeable.

“Myth Two: “If we build it they will come”

Most HIT vendors have a Field of Dreams mentality: “If we build it they will come”; making no attempt at patient engagement in the design of HIT systems, or mistakenly trying to get input on technical aspects rather than end user experience and functionality goals.”- Donna Cryer

I depicted this myth with the baseball from Field of Dreams. Baseball is an amazing unifying force within the history of the US. It united fans of all economic backgrounds and became America’s pastime. EMR venders should remember the lessons of the past. For a good game of ball everyone must be invited to the field, and all of us must have a role.

“Myth Three: “Just say no”

A very pervasive myth is that patients are only concerned about data privacy and are opposed to sharing of data.”-Donna Cryer

I have been continually amazed by this myth and it is presence at every level of discourse. I was so honored to present at the announcement of the final rule of Stage one Meaningful Use on July 13, 2010. I felt the HHS and the ONC was really taking patient access very seriously. But I was very saddened when I read a post by Andy Oram @praxagora called Health and Human Services finalizes meaningful use for electronic health records. In this post, Oram mentions “There's now also a meaningful use microsite at the HHS's Health IT site.”

I went to the site, and at the top of the page you can click on a large link field with a picture of a stethoscope labeled Information for Providers or you can click on a field with two faceless Caucasian avatars labeled “Information for Consumers”. On the provider side you will learn about the importance of accurate patient data, the power of CPOE and CDS and the money saved by implementation. You will see that CMS has incentives tied to implementation. You will see the ONC is available to help you. You will find out about REC’s, HIE’s and Beacon Communities. There are 22 active links on this page that will lead you to hundreds of other links that will explain the legislation and process more fully.

But if you hit that faceless link for Consumers you will see two Paragraphs. The first is a very brief overview of the power of EHR’s to improve medicine. It has one active link to a dead end pdf explaining EHR’s more in depth. The next Paragraph is about Privacy. If you hit that link it will lead you to a page entitled, “Privacy and Security.” This page contains 20 links to various white papers and Pdf’s about privacy in relation to the EHR.

Has comparing two links on HHS page ever made you cry? It made me cry. It made me cry to see so little was expected of patients. On those pages it seems as though we are only consumers worried about privacy and security and little else. It seemed our research paths are one way communication only and not open to discourse.

So in the painting of this myth, I depict a patient with her face contorted in pain as she tosses away the key to a lock beside her heart. She is so much more than privacy and security.

“Myth Four: “Look but don’t touch”

I applaud those institutions that have set up a patient portal or otherwise allowed patients access to view their EMR either in whole or in part. However, as any patient who has looked at their records can tell you there are often inaccuracies, gaps, or redundancies that make the record misleading or downright dangerous.” –Donna Cryer

Here, I depict this lack of data input of another form of CPOE “computerized patient order entry” in the electronic medical record, as one of those don’t touch signs. As a parent I have frequently been in shops with my children, where a concerned shop-keep has posted signs throughout warning off the children. The sign in the painting states “EMR: Visitors should look but not touch.” Here is that paternalistic statement heard by many patients that we have nothing of value to add to the EHR, but due to months of effort, lobbying and legislation we can finally see some of what is written about us. Yes, we want to read all that is written, but we want more. We want to be viewed as a valuable part of the medical team.

Myth Five: “It’s not for you”

Just as the whole notion of e-patient activism has come under fire for being the domain of only an elite segment of tech-savvy individuals, many claim that HIT does not serve low income or minority populations.

Did I mention that DCPatient Donna Cryer is not only a patient speaker, but that she is an African American Woman Patient Speaker? She stands before us all exploding the myth that HIT is only for an elite group. Within this painting a Caucasian blond woman in mink coat, blue tooth in her ear and a Gucci style handbag strides importantly away. That handbag is marked HIT. That is the image of the e-patient that many people in the EMR industry and the world of medicine think of when they talk of the HIT tech savvy, and it is very wrong. Due to tools available through mobile health, access is becoming far greater for minorities, the under-educated and the poor than ever before.



Next to this myth-busting scene, An elephant proudly balances a ball upon his trunk marked “Patients: No longer the Elephant in the Room.” An amazing stride forward had happened at this RTI event as Donna and Ann were accepted as equals to the providers speaking on the dais.

Beside the elephant is a health care spending rocket that careens into space. This was the first archetypal image to be depicted within this painting. It is the words of Senator Whithouse from Rhode Island as he said we must get in control of our health care spending. This rocket is placed on the patient side of this painting for a reason: patients are the untapped resource that can help contain costs.



On the left of the painting, is a triangulation of the relationship of government/technology with providers and patients. Above the crowd stands Lygeia Ricciardi, Senior Advisor for Consumer e-Health, Office of National Coordinator, Health and Human Services. Lygeia stands as the Ringmaster of the show, her hair waving behind her and becoming the logo for HHS. She stands balanced upon an old-fashioned printing press. She stated in her speech to the crowd that we are in a time very similar to the reformation, where tools of technology can create great information access for the citizenry. So like a carnival of old, piles of one-sheet posters are being printed. But instead of “the circus is coming to town,” you read: “HHS Public Comment is Open.” In Lygeia’s left hand she shows one of the posters to the audience. In her right hand, she presents the crowd an I-pad using a twitter app to spread the same message. She is willing to use any tool available to connect with the populace and discuss the importance of the EHR.

A provider stands in profile to Lygeia’s right. He represents the three medical doctors who spoke before the assembled. Moderator Douglas Kamerow, Chief Scientist of RTI, Ed Glynn, Ambulatory Medical Director of Informatics at Bon Secours Health system, and Jonathan Wald, Director of Patient-Centered Technologies at RTI. They become the plate juggler. Each plate is emblazoned with the logos of their current or prior workplaces. These plates fly through the air while the doctor tries to keep them all afloat. He must focus so much attention and energy on his work place that little is left for participatory medicine. But within his scant free time he is here and he is upholding the idea of patient as partner. He realizes it would be easier to juggle so many plates with another set of hands.

To the far left and behind the printing press, a patient balances upon a unicycle. He is holding his IV tower as balancing pole. His face is stern, and he stares with intense concentration. His act is a solo act and if he falls the consequences are dire. When my husband Fred was in his first hospitalization, he could walk with help for about a week. Each day he was encouraged by the nurses to use his IV tower as method of support as he limped down the hall, as we waited in vain for a walker that never came. When we finally transferred to another facility it was made clear to us that we should never use an IV tower for balance and support. That was against fall prevention guidelines. The second hospitalization staff realized patient care is not a solo act, for the provider or the patient. This must be a team activity.

Throughout my time at the RTI event I felt welcomed and part of the whole. I may be the “freak” at the back of the room explaining HIT with an easel and brushes instead of a just using a lap-top, but I was greeted with warmth and kindness. The work I did was appreciated as another way to dialog about health, and that is what we are really talking about. And just as I felt embraced by this group, I hope my fellow e-patients and social media health activists will reach out to RTI and assure them, “We accept you. We accept you. One of us. One of us.”