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Friday, April 22, 2011

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 fiancĂ©e 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.

"One of Us, One of Us."


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

RTI Presents

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.

The Five myths about patients

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.

Patient locking away access

“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.

Healthcare Spending rocket

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.

the Printing press

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.”

4 comments:

  1. Another tour de force, offering an inspiring journey through art, history, politics, society and - of course - health care.

    As usual, your post sparked several memories of other related insights.

    One is from a book I recently used in a course I was teaching on Network Security. On page 8 of Network Security: Private Communication in a Public World (2nd edition), by Charlie Kaufman, Radia Perlman and Mike Speciner, in describing the Internet Engineering Task Force (IETF), they write:

    The [IETF] protocols are specified in documents known as RFCs. (RFC is an abbreviation for "Request for Comments", but the time to comment is when the documents are in the more preliminary "internet draft" stage. Nobody wants to hear your comments on the RFCs.)

    I'm also reminded of some penetrating insights from Dr. Brene Brown, author of The Gifts of Imperfection, that I wrote about in a post on the differences between fitting in vs belonging, and the costs and benefits of conformity.

    Finally, I'm also reminded of some related inspiration from Oriah Mountain Dreamer, author of The Invitation and The Dance, which I also wrote about in the context of one world: disasters and responses. Most relevant here is her observation that we can either try to identify and empathize with others, or seek to differentiate others from ourselves; essentially choosing to view others as "us" or "them".

    Thanks for your efforts in providing such an effective platform - your inspired and inspiring series of "painting parables" - to help more of us understand, well, more of us.

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  2. Great art. Great post. Seriously creepy movie.

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  3. I can't think of a word for how lovely and profound this post and painting is. Myths are perfect. Thank you.

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  4. Hi Regina,
    I always love your work. The online explanation is great too since there is so much that one would miss otherwise (I never was very good at artistic interpretation.) Great concept too with Health IT as carny. Odd coincidence, I too sold pottery as a child at flea markets. Indeed, it was a great experience.

    I particularly liked your melancholy Donna with a book representing the self-education by patients. You really captured the feeling one gets when reading about one's own or a loved one's medical condition.

    Thanks for making this and sharing it.

    Be Well,
    Alex

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