The Stone Soup Method

Once upon a time a poor man entered a village and asked if the villagers had any food to spare. The villagers said no. It had been a hard winter and each family was hoarding what little they had. The village was small and the man was strange so though they would not help him, they began to watch him.  Perhaps he would leave if no food was forthcoming or perhaps he would try to steal.   The man did neither of these. He merely gathered firewood and built a fire.  He put his cooking pot in the stream and hoisted the water-filled pot to his fire.  Then while all the villagers peered around doors and out of shuttered windows, the man made a big show of searching for some rounded large stones in the stream.  He exclaimed upon finding each one. He rubbed them on his worn tunic and praised their color and delicious odor and then tipped them into his pot. 

The villagers were quite intrigued by his actions and slowly found reasons to walk past the stranger’s fire. As they would pass he would run a spoon into the water and state that his stone soup needed a little seasoning.  If only an old withered carrot or bit of potatoes were available it would be an excellent soup.  As the villagers returned to their cottages they would ponder the man’s words and realize they perhaps had something to give.  Each in turn began to offer a bit of this and that.  He would exclaim his appreciation of each ingredient. The villagers were a competitive, yet caring lot and seeing their neighbors praised encouraged them to give even more. As the day progressed the pot became thick and hard to stir. 

The stranger soon told the milling crowd the soup was perfect and ladled a generous helping of soup into everyone’s bowl.  All ate well that night filled with sustenance and camaraderie.  Everyone praised this new recipe called Stone Soup.

So how does the stone soup method apply to my work medicine?

I don’t know if you have seen me paint at a medical conference but I often think of the stranger in this tale as I paint.  When I enter a room, I come burdened with blank canvases and a heavy easel. People watch me set up my station intrigued by an artist painting at a conference.  As the conference day begins my canvas is blank then slowly the words of the speakers and attendees fill the air and I begin to paint.  Soon the attendees come to the easel and share their thoughts and feelings.  My painting fills with imagery just as the stranger’s pot fills with food.  It is an amazing process.  

In a little over two months the Partnership with Patients Summit will be held in Kansas City and we will be using the stone soup model.  We will have a gathering of the Walking Gallery, a traditional conference day and an unconference day.  People who self-define as patient/patient advocates will congregate with partners.  The partners could be providers, techies, venders, academics, organizations or health policy wonks.  We will gather together to make a conference with everyone throwing something into the pot.  There will be a non-profit partner, business partners and regular people creating a crowd-sourced and crowd-funded conference.

The idea of a stone soup/crowd-sourced conference has confused a few people.  We are once again practicing some creative destruction of the traditional form.  This event is not funded by CMS Partnership for Patients, yet we are reporting back to them and focusing on their goals.  This event is not organized by a non-profit, though the Society for Participatory Medicine has agreed to create and oversee a travel fund to help patients attend medical conferences such as this one.  Cerner is hosting us in their space and acting as a partner, but this is not a Cerner conference.  This is a patient summit; and I may be stirring the pot, but I am one of many around the fire.

The Venue

Cerner has graciously offered to provide the “cooking pot” for our conference in the form of their Riverside educational building.  This once was a casino many years ago, and is a rather appropriate venue to place a bet.  We are betting  that we can do much if we just work together. The building has been retrofitted with rooms and technology that supports educational opportunities. You can register for the conference on eventbrite at Partnership With Patients and ticket proceeds will pay for the overhead costs.  The overhead cost will include food, transportation, shuttles and conference materials.

Travel Scholarships

 I asked the Society of Participatory Medicine if they would consider being our non-profit partner whose responsibility would be to create a patient travel scholarship fund.  The board agreed that this was a good use of their energy and was in step with their mission.  They further added they would like to create such a fund and continue to solicit funds for future conferences.  Please send donation checks to The Society for Participatory Medicine PO Box 1183 Newburyport, MA 01950-1183.  Please make checks payable to the Society for Participatory Medicine and mark in the memo line "Travel Fund.".

Or you can donate online at the donations page, just click on the Travel Fund button. The Society for Participatory Medicine is a 501(c)3 public charity. They will present a panel discussion during the conference explaining the concept of the society and participatory medicine. For the Partnership With Patient Summit they will be offering a limited number of $500 travel grants.  The quantity they will be able to offer will be based on donation amounts they receive.  Those who wish to receive such grants will write an essay explaining their need. Grantees will be chosen based on review by a committee from the Society.   

I am asking you today to please donate to this fund.  No amount is too small.  Everything is appreciated.  If you are able to give more that is wonderful. 

The Walking Gallery

On Friday night September 21^st,  we will have a Kansas City gathering of The Walking Gallery.  This will take place at the Kansas City Marriot.  I will be asking for financial support to cover expenses for this venue on Medstartr, a new funding model created by Alex Fair.

   The Traditional Conference Day

On Saturday the 22^nd of Septemeber  we will have a conference day that will break into three tracks focusing on HIT, Patient Quality/Safety and Media/Message.  These sessions will be taught by many different individuals who are volunteering their time and are leaders in their fields.  I will post the full agenda as it forms.

The Unconference

Mark Scrimshire and Maumi J.Cannell Chatterton will be hosting a HealthCamp KC unconference on Sunday the 23rd. That is the ingredient they are adding to this stew of advocacy.  

Speakers Boot Camp

Simultaneously, patient speakers will be given the opportunity to present 5 minute speeches during a patient speaking session. These speeches will be recorded by Cerner staff and uploaded to youtube.  These speeches will be a great asset to beginning speakers who have just joined Speakerlink.org and are building up their online presence.

Many other folks have offered their time and skills to help this process.  As they send me their offerings I will post them here, but suffice to say we are making a lovely dish. 

By the way the hashtag for this event on Twitter is #cinderblocks.  It rather fits doesn’t it? When making a stone soup, you must begin with stones.

And this story began many years ago when a little girl was in a class without books shelves...


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. 

Yep #cinderblocks is perfect.

All Fields Required

The lobby in my building is under renovation.  It was pretty to begin with, but the management of the building has decided to make it glorious.  Now, when a friend comes see me or a potential tenant waits within the lobby they are surrounded by beauty, comfort and welcome.  The management of my building understands that first impressions are important and affect the entire experience.

Design matters.  Words matter.  The equivalent of my welcoming lobby to a webinar or conference is the registration page.  Have you taken a good look at your registration page? The way organizations and events design their registration screen reflects their view of the attendees.  I filled out quite a few registration pages in the last two years and have come to dread a simple phrase: “All Fields Required.” 

“Please list your terminal degree.  Please list your medical facility.   What is your position in your organization? How many beds are in your hospital?”  As I stare at the blinking cursor, I wonder if they even want me here.   Where are the questions for patients? 

And try as I might to make my high school diploma and patient experience fit within the field for terminal degrees, I cannot.   I must give up and contact the conference or webinar and beg for a manual entry. 

It seems as if the event organizers are saying:   “Yes, you can be part of our event but patients must enter through the back door. “

Time and time again, I have heard organization say they want to include patients, they want to address disparities, but yet what has been done to include us as an intrinsic part of the process?

When I am in a meeting, be it a webinar or a physical conference, I am there as a patient activist.  I may be tweeting, blogging or painting, but I am there to fulfill the honorable duty of representing the individual patient voice.  I will ask the hard questions, I will make myself the fool, if only to voice the concerns of those countless ones who suffer beside me.  I have neither an organization to represent nor clinical job title that could interfere with my singular purpose of voicing the patient view within the healthcare discussion.

And I am angry.

I am frustrated that my compatriots and I beg to attend conferences and events when we should already be included on the master list.   Often we are invited as only an afterthought.  If we truly wish to see patient-centric care in this nation patients must be included in the design phase and not as part of the epilogue. 

I will take the phrase of the establishment and twist to include a new meaning.  If we are to change healthcare, then indeed “All Fields Required!”

I want to see artists and poets, mechanics and clerks at conferences.  I want them to stand before the crowd as the patients they are and bring the voice of truth and pain.   I want to see a board of directors with a single mother that is caring for a sick child.  I want to see ivory towers leveled and those precious white stones used to pave a path for the sick, injured and suffering. 

Indeed, I demand you use that phrase to plant seeds.  There is not a patient among us who could not be a fertile bed for ideas and solutions to the current problems in health care.  Leave no field fallow within this debate.  You want to create measures that track adverse events and medical errors?  Involve the patient.  Ask Trisha Torrey who would have caught her diagnosis before Chemotherapy; no one caught it but her.  Ask Alicia Cole who realized the spot on her flesh wash not a black dot of a sharpie marker, but instead the threat of imminent death.  She would tell you it was her mother who saved her life.

I dare you.  Live by your words.  Make all “fields” required.

The Man Behind the Camera

If you are as old as I am, you remember those special days in school: the movie days.  The days the teacher would walk to the head of the class and pull a projection screen over the outdated world map.  She would roll a squeaking metal cart to the rear of the room.  We would watch in awe and amazement as her deft fingers would unreel the spool of film and place it on the carriage.  She would turn on the film projector and each dust mote would gleam in the air.  Then she would advance the film and that wondrous noise: that pleasing repetitive fftht, fftht, fftht would fill the room. 

For the next thirty minutes we would fall into the world of the documentary. 

We would learn about big cats on the Savannah, or the division of a cell or the mathematics behind the construction of large buildings.  For thirty minutes the room would cease to be a slightly musty space filled with chalk dust, but instead became a theatre.  As a child, I would smile in delight on movie days, and be so thankful that the projector worked and the film did not break.

As an adult I thank all the documentarians that have created such delight in others.   I am thankful to know a handful of such amazing people.  One of those is Matthew Listiak (@MatthewListiak on Twitter) and this is Matthew’s Jacket in the Walking Gallery:  “The Whirling Dervish.”

I have known Matthew for almost a year, and for much of that time he was represented by face consisting of only one eye with a shock of red hair behind a camera.  He was the quiet one; he scurried between cameras and applied make up before the last shot.  He would look at the world with a furrowed brow.  He would pick the best light or angle for a shot.  He was like many filmmakers I have met, but one thing sets Matthew apart.  Matthew not only cares about the subject of his films, he is actively helping make the world of medicine a better place.

Matthew works with TMIT (Texas Medical Institute of Technology) as a Senior Producer.  He is intimately involved in the creation of the various quality and safety videos on the SafetyLeaders.org website.  He is one member of team creating the patient speakers portal that will go live in December.  He was a producer of the documentary Chasing Zero: Winning the War on Healthcare Harm that aired on the Discovery Channel.  And is a producer of the upcoming Documentary in the series: Out of the Danger Zone: Winning the War on Healthcare Harm. 

And all of these things make Matthew so very special.  For I have known filmmakers in my life, and many of them sadly shake their heads when they hear a patient’s tale of woe and sorrow.  But that expression of empathy is not followed by a call to action.  They do not funnel every bit of time or talent into a campaign to ensure cessation of harm.

But Matthew does.

Here is Matthew.  His bright blue eye looks upon the viewer with such depth of caring.  His other eye is mechanical: the camera itself, and he is recording.  He will ensure change by the active creation of new media.

To the right of this painting are the Whirling Dervishes.  These women spin first in meditation.  As they spin faster and faster they begin to relate to the divine.  Writ upon their skirts are the topics that fill the world of patient centered care.  “125 Million people living in chronic illness, disability or functional limitations,” says one quote from the Aligning Forces for Quality Conference.   Others skirts are adorned with websites and twitter hashtags.  Some of the Dervishes look up as a small child would, some look straight ahead focused on their own internal conversation.  And they spin and spin becoming a sort of projector for the media that Mathew creates.

At this point I feel the fright of the child inside me.  For I see the film has twisted, and I know it soon shall break and movie day will be undone.  We will no longer learn about these amazing things if the projector breaks.  If we stay too focused on our own conversations in our own closed medical communities, if we continue to merely spin our wheels and talk in a circular fashion about patient care, we shall fail.  We must each exist as a device to propel the story forward.  And through ourselves project the light we wish to see in others.

So this is Matthews Jacket. 

And this is the website Safetyleaders.org

It is filled with amazing content and media that Matthew has helped create.  And if you watch these films you will learn more about patient care and lives will be saved.

The projector only breaks when you fail to use these films as they were intended.

Stories: Christine Kraft's Jacket

I paint in within my kitchen: it is the hearth, the heart, the home. 

On the night of June 6^th, I painted Christine upon her own linen jacket.  I painted without priming.  I could make no mistake.  I painted her attentive face and piercing eyes.  I painted the face of girl, who is also a mother and she had eyes as old as time itself.

I painted her while surrounded by chaos, as deadlines loomed and children ran and played.  She appeared like sea of calm within that painting, just as she had within my life.

Christine stepped into my path and cemented my future on May 3^rd 2009.  I was selling toys on one day out of the three, I worked in as many months.  I felt compelled to talk to her, to tell her that Fred had kidney cancer.  The air around us was electric.  It was meant to be. 

We barely knew each other.  I was the nice shop-keep.  She was the nice customer.  We were consequential strangers.

She told me of e-patient Dave.

She told me to get on twitter.

She organized my first Health 2.0 meeting.

She made my 36^th Birthday Cake, while Fred lay dying.

She came by hospice and talked with me.

She was there at the first mural.

She blogged one of the first blogs the day after it was placed.

Who would you call in order to talk from the depths of your soul?  Who would you pour out your grief to, your fears to?  I would answer: Christine.

So I painted Christine telling stories, painting stories.  These are stories as old as time, painted in ocher and painted in blood.

“I can tell you something about Stories they drive engagement, “ so says the oracle Christine.

Lygeia’s Jacket: Rosetta Stone

This is the first jacket to be completed for the Walking Gallery on June 7^th in Washington DC at the Kaiser Permanente Center for Total Health.  It is called “Rosetta Stone. “ This jacket is about reclaiming things lost so very long ago and translating them for a new generation.

This is a story about a regular gal named Lygeia Ricciardi who is now Senior Policy Advisor for Consumer e-Health at US Department of Health & Human Services.  When I met Lygeia she was a consultant at Clinovations.  I would go to many meetings about Health IT and I would see her.   I would wave and smile.  Occasionally she would chirp up with a very astute comment, but mostly Lygeia seemed quiet.  Or perhaps in contrast, I was rather loud.   Maybe circumspect would be the best descriptor for her behavior.

When I heard that she was hired for the newly created job of Consumer e-Health Advisor at the HHS, I was happy for her.  But then I heard her speak at the Institute for Federal Health Care, IFHC roundtable, The Healthcare IT Puzzle: Something is missing... “Oh yes, the patient!” on March 4^th, 2011.  I was ecstatic.  Lygeia had stopped being quiet.  She had become a mamma lion.  Before a crowd of health care professionals she recounted in great detail her birth experience having her second daughter.  She explained the many steps she had to take to ensure that her delivery was as natural as was possible.  It was an amazing story and it opened the floodgates in that room.  Other members of the panel began sharing intimate details of their patient experiences as well.  Due to Lygeia’s willingness to be open and honest, retelling many personal details in her account, she gave the entire room permission to step out of their roles in government and medicine and to simply identify with the patient inside of them all.  It was a wonderfully centering experience.     

Not long after the IFHC meeting, I attended the screening of the film “Who Does She think She Is?” at the Center for Green Urbanism.  While watching the documentary I learned about the amazing history of women drummers.  For thousands of years women used frame drums. The beat of the drum mimicked the heart of a Mother to the child in the womb.   The beat of the drum called out warning to the tribe.   The practice of drumming was tied completely into the experience of divinity and defined the role of women.  Fast fore ward a few centuries and the mythos of female drummers was completely lost in the sands of time.

Sort of like the Rosetta Stone.

Now if you ask the Google search engine what Rosetta Stone means, the first answer will be the world’s  #1 language learning software.  If you ask a weary airline business traveler, they will probably point you to the closest Rosetta Stone kiosk in the terminal.  An endless electronic sales pitch on the wonderful learning potential of Rosetta Stone will fill the space within five feet.  A bored sales clerk will often look up from her smart phone to see if you are interested or just passing by.   That is the meaning of Rosetta Stone in our world today.

But this painting harkens back to its older meaning.  In 1799 this stone was found with text written in Ancient Egyptian hieroglyphs, Egyptian demotic script, and in Ancient Greek.  The stele was studied for 20 years and finally fully translated in 1822.  With this translation, other ancient Egyptian Hieroglyphs could finally be translated.

So, why I am I using this ancient history to explain a jacket painting?  Well, simply put Lygiea is our woman drummer and our Rosetta Stone.

How many Healthcare hieroglyphs do you think the average patient can recognize and understand?  We need some like Lygeia to explain what is going on in healthcare.  We need her to beat the drum in warning if the patient view is not being represented.  And we need her to do all of this from that wonderful patient center of a mother with babe at breast.

Lygeia, thank you, you say it all and speak so well.  I can think of no better drummer for the cause.  I can think of no greater translator between the world of patients and the world of Health Information Technology. 

The Quilting Bee

There are some brave people in this country who invite me to attend their conferences and meetings. They invite me to speak while not knowing which things I will say. They invite me to paint while unsure of what the final image will be. They know that when a patient or caregiver comes to the table the paradigm will change. And for many people, change is very scary.

Before coming to Bellin Health, I had a conference call to discuss the upcoming event. We talked briefly about what I would paint. I explained that I paint the things that I see and hear and that can result in good images or negative images based on the words and the culture I am depicting. I could feel hesitation on the telephone line. The folks at Bellin wondered what kind of picture they would get. Would it be bright? Would it be happy? I told them, my paintings reflect the words you say channeled through an artist’s eyes. If you want a bright painting you just need to be true and genuine, I only paint the things I see and hear. There was a moment’s pause. They agreed to my onsite painting, believing their culture would show as brightly as the sun. And it did.

This is Quilting Bee. The day I arrived at Bellin Health I was able to tour an allergy and asthma clinic that installed an Epic EMR system 10 business days before. I got to be privy to their last onsite meeting with the Bellin Epic installation team working in concert with the clinic staff. I often get to sit around a table and talk data and tech, but this was the first time I did that with only women present. As Anne Hale and I left the building I remarked how much the dedicated women around that table reminded me of a quilting bee.

You have probably heard the word bee used this way before. It was once very common to unite a community in a common task to help each other. There were barn-raising bees, spinning bees, quilting bees and spelling bees.

The quilters in this painting are patients, informatics professionals and doctors. They are stitching P for patient into the blocks. One patient looks in wonder at her painted nails. This image is referring to a story one of the IHI fellows told us. A young girl was asked what was the best thing that had happened while she was in the hospital. She answered, "The day they came in and painted my nails."

Some blocks are quilted with the with the letters for HIT, BETTY and EMR, because that is what these quilters are building. Other blocks refer back to the slave quilt code used during the civil war. One block is a shoe-fly representing the message that this is the one you should follow. One block is the cross roads representing this is a point of decision upon the path. Another block is the North Star that points the way to freedom. These blocks create a message to patients: this is a safe place.

Other blocks in the quilt represent the companies that Bellin Health works with such as EPIC, The Green Bay Packers and Georgia Pacific. The square depicting the logo for Dominoes Pizza is actually alluding to their old 30 minutes or it’s free campaign. This refers to a speech given by one of the IHI fellows who mentioned that ambulances in the UK were so determined to get a patient delivered in the “right” amount of minutes, often did not deliver them to the most appropriate destination. Dominoes Pizza changed their policy because of the negative public perception of driver collisions due to the time constraints. People were injured or dying because time limit for a pizza delivery. Imagine giving up your entire motto and branding campaign, to save a life. That was the choice that Dominoes faced and it sounds like it is one the NHS is facing as well.

The matriarch at the head of the quilt is Betty Bundy. She is a stroke survivor and the face of the new Epic EMR rollout at Bellin Health. The yoke of her shirt is the IHI triple aim. It is displayed upside down. When Betty was seen at Bellin no one connected the dots in her care. Later, when the stroke team began to get feedback about her experience it allowed healing to begin.

The center of this painting is framed by two figures. On the right side of this painting stands Everett Davis. As the conference day began I learned about Everett Davis. He worked at Bellin for 44 years. He would sweep out the stairs and everyday he would say, “Have a Good Day, My Friend.” He died on September 2, 2010. In lieu of flowers a memorial fund was created at Bellin. So, in this piece he holds his broom. On the left side, wearing clothes from the 1970’s, stands the Bellin Health CEO George Kerwin. In 1971, he started at Bellin as the head of housekeeping. He is facing Everett with a mop in hand. Both figures stand at the same level looking eye to eye across an expansive plain.

Above and behind these two figures are a series of connected silos. I often hear at HIT events about the need to “tear down silos.” The Oklahoma gal in me is quite upset. We don’t want to tear down silos. Silos are important. They store grain before transport. We need to connect the silos. So, out of each of these silos a telephone pole rises above and transmits data.

The wires themselves suspend and pierce three items and wrap around the figures in the scene. One item is a heart. It represents the love we feel for families and heartache we feel watching patients suffer in pain. Next is a clock. Ann Hale mentioned in her speech that as we bring patients into councils and work groups it is very important that we respect their time.

Finally, there is the compass that alludes to the North Star above it. During the afternoon session Linda Roethle and Randy Ronsman spoke about the new partnership between Bellin Health and NorthStar. The NorthStar group spent a year looking at options and navigating the waters of care and decided a partnership with Bellin would help patients in both geographic regions.

The wires then extend out and connect George Kerwin and Everett Davis. One coils down to Betty Bundy and allows her to communicate by phone with the Bellin Health stroke team. The final wire becomes the thread that allows the quilt to be to be connected in the health information exchange.

The Silos end in a Dark Tower. This symbolizes the Beam Project. On March 10^th I met with Nan Bush from the Bellin Foundation and Allison Gyrzen from the Bellin’s Cancer Team and the Beam Project. Allison has a degree in art education and works at Bellin creating and implementing an arts for healing program called the Beam.

As she described the mosaic work the patients and family members have created as they work their way through recovery, healing or grief, I thought of Fred. I thought of the window stickers we had made with him to adorn the windows of his room. The light shown through those stickers as if they were stained glass, they helped make a clinical room sacred. We had painted things that would make Fred happy. Fred was a huge Stephen King fan and his favorite tale was the Dark Tower.

This sticker was put in his window in hospice and stood for our unending love and reminded us both that no matter how bad things seem as it is written in the Dark Tower, “All things serve the Beam.”

Thank you Bellin Health for inviting me to Green Bay, Wisconsin. I will spread your tale far and wide. Everything happens for a reason. And Stephen King was right, all things do indeed serve the Beam.

The Cake is a Lie: Thoughts on Incentives and Change

I think about patient access to the electronic medical record often. I might even be called a Meaningful Use Groupie. I have heard David Blumenthal expound so often on this subject that I have memorized elements of his speeches. But when I think of Data access, core measures and menu sets, I see pictures of diners and data. Often those pictures can illuminate or disturb. Sometimes they do both.

The painting The Menu Set reflects a lot of my thoughts on Meaningful Use after speaking with organizations affected by it. This is a very divisive composition. It has a right side focused on the patient and the left side that focused on providers.

To the right of center is an image of Secretary Kathleen Sibelius dressed as a waitress. Her gaze is riveting and concerned. Her face is incandescent. She is the mother and the mage. She is the servant and the leader. Her eyes capture the viewer with a piercing gaze, seemingly asking each of us, “What are you doing to help?” I have talked with Kathleen about patient centered care and I have talked with her about the best way to pack dresses when traveling to speaking events. She is equally conversant on both topics. She is one of us and knows that for medicine to change we must serve the customer. In her right hand Kathleen holds an apple pie before a patient guest. Behind her on a long stainless steel shelf, are 15 apple cores. Those 15 apples are the main ingredients for the pie. These are the core measures and this is Meaningful Use. In her left hand she prepares to pour coffee. Here is coffee – a stimulant. Here is HITECH and stimulus funding. And she is doing all of this for the customer, the patient.

Beside Kathleen is David Blumenthal, MD. During Stage One Meaningful Use David was a driving force for adoption as the leader of the Office of the National Coordinator for Health Information Technology. David is dressed as a cook and a manager and in his hand is the Menu Set: a menu of additional requirement from which 5 must be chosen. David’s gaze is fixed as if looking at some far off goal. I had seen this fixed gaze before in Chicago at American Academy of Ophthalmology 2010 Joint Meeting.

Here is the description of that event:

“SPE57 Finally, a Meaning for Meaningful Use: Learn How to Qualify for EHR Incentives

Synopsis Incentive payments for adoption of electronic health records (EHRs) provide up to $44,000 over 5 years per physician. Starting in 2015, if you have not adopted certified EHR and demonstrated meaningful use, you will receive a reduction in Medicare payments. Past certifications for EHRs do not qualify for automatic certification; they need to be certified under a new certification program. Physicians need to meet EHR functionality measures and clinical quality measures. Our speakers will address exactly what you need to do to qualify for these incentive payments and what you need to watch out for in Stage 1. David Blumenthal, MD, the Department of Health and Human Services’ national coordinator for health information technology (HIT), will speak during this FREE session. Dr. Blumenthal leads the Obama administration’s implementation of a nationwide, interoperable, privacy-protected HIT infrastructure that was established in last year’s stimulus bill. The session will also feature Derek Robinson, MD, CMS Region 5 chief medical officer and physician liaison for quality/HIT initiatives.

Date and Time: Monday, Oct 18 2010 12:15PM - 1:45PM

Location: McCormick Place

Room: GRAND BALLROOM S100A/B

Chair/Moderator: Michael F Chiang MD”

I had been invited to attend this event by the really nice folks at OA systems an EMR Company that specializes in e prescribing. (Full disclosure: they did pay for my travel to Chicago, lodging, babysitting and an honorarium for my speech the day before.) I sat in this Grand Ballroom beside Brian Ahier, a fellow speaker and rather famous HIT evangelist and Omar Ahmed, the CEO of OA Systems. Do you notice how many times the words referring to payment, incentives or money were used in the paragraph above? Did you see the title? The meaning of Meaningful Use is incentive payments? I was aghast. The meaning behind Meaningful Use is the patient story and patient centered care. David Blumenthal faced a room full of angry specialists demanding a higher ROI. At one point the entire room burst into a thunder of applause as a question was raised about when past CMS incentives would be paid. David Blumenthal responded to their anger with a level gaze and defended Meaningful Use concepts such as checking vitals as life saving measures. He said “You maybe the only Doctor who sees this patient in a long time. If you notice he is suffering from dangerously high blood pressure you could save his life.” I began to clap after David said this. In that room of 1,000 people, I clapped in silence and looked into David’s far-seeing gaze.

To Kathleen’s right stands Omar Ahmed himself. He is taking the patient’s order; he is trying to provide service. In his hand he holds a small mobile device and is entering the order with a stylus. His head is bowed with respect and concentration. For this is how I saw OA Systems in the long day on the exhibition hall floor in Chicago. As many other EMR booths contained all the sincerity of a used car lot, OA systems staff were quietly answering questions and asking for patient input.

Before the Trio of David, Kathleen and Omar sits a patient. She is thin and ill. Her gown gapes open and you can see a skeletal back and her bare buttocks rest on the vinyl-covered stool. She has no face and she has no name. She represents all of us desperately trying to get care. Where are her arms and hands? Are they bound? Are they raised in prayer? We do not know because we cannot see this data mote in the system. Her unique identifier has been removed and the painting is HIPPA compliant.

To the left of the painting is another vignette. A waiter is trying to serve two Doctors. The waiter is Clay Patterson from the company Cerner. Cerner is an EMR company based in Kansas, City. I have been to visit the folks at Cerner two times (Another disclosure, they paid travel, lodging and babysitting.) The company has always been very open and willing to share information about their system and take patient feedback. Today, I learned a new fact about Cerner from the blog of the refreshing Kourtney Govro, CEO of Sphere 3 Consulting in Kansas City. Kourtney blogged. “I was inspired recently by the move of KC Sporting – our local soccer team. Soccer, unlike many sports, has few borders and internationally reaches into all socioeconomic levels. KC Sporting recently named their new stadium LIVESTRONG field, the first time in history a professional sports team has taken a not for profit as their field namesake and not the sponsorship of a major company. For those of you who don’t know – two of the team’s owners are men who started Cerner. If prideful ambition had been their desire, they could’ve paid homage to their achievement and we could’ve had Cerner Field. Instead they chose to be leaders of change and part of a larger social awareness movement.”

So this is Cerner, and this waiter is Clay. He is trying to give an apple turnover to the two medical professionals. If you look closely at the plate you will see the Cerner logo is part of the plate design. The two Doctors are deep in a worried conversation and do not look up. Clay has decided to look above them and communicate with an audience of end-users directly. This a company that invites me to speak for 45 minutes at a time about the failings of a medical system that does not allow patients to have a portal to their own records. This is a company that names a soccer field LIVESTRONG. This is about a man named Clay who walks me through product demos, while at home his step-mother is suffering from Cancer. I am very thankful of the time I spent with Clay and the folks at Cerner. I am grateful for the information I learned from them about back channel support for patient portals. They are the first company that told me about the ability to have a visual avatar on every EMR, and that any hospital could turn on that function. All the CMIO had to do was pick that function on the Menu.

Behind the two patrons and wait-staff are a series vintage signs. They advertise many things. You can get old-fashioned 100% paper medical records for only 73 cents per page. Or perhaps you would like a refreshing draught of HL7 coding? Don’t know about HL7? As wikipedia defines it “HL7 is an international community of healthcare subject matter experts and information scientists collaborating to create standards for the exchange, management and integration of electronic healthcare information.” It is sort of like an international quilting bee working on informatics and standards.

In front of all these signs, are those apple cores I mentioned earlier. And here is where disturbing really kicks in. My 12 year-old son Freddie thought they were rats or mice. Only upon closer glance did he see the cores. Even the cores are disturbing. These are the cores, the leftovers. This is what remained after months of pairing away to reach the final rule of Stage One Meaningful Use. A lot got left out to make the pie, as we head to stages 2 and 3 it is very important that people demand that patient access stay in the recipe. And to the far left of the shelf hangs a diners’ checklist: the entire timetable through 2019 of incentive payments for Meaningful Use. Note how this check is pushed to the side and is in darkness.

In the center of this painting is another dessert. You can eat cake. Do recognize that cake?

That, my friends, is the Portal cake from the blockbuster computer game created in 2007. I have a 12 year old and long before I spoke about EMR systems and patient portals, I was talking about another kind of portal with my son. In this game the character Chell must break through layers using a portal gun that allows her to transport herself. All the while the somewhat insane AI: GLaDOS heckles Chell while she attempts to solve puzzles. Failure in solving these puzzles will result in death. GLaDOS assures Chell that if she succeeds she will get cake. The game progresses and the taunts become more vicious, such as, “You've been wrong about every single thing you've ever done, including this thing. You're not smart. You're not a scientist. You're not a doctor. You're not even a full-time employee. Where did your life go so wrong?” Along the path Chell realizes the cake is a lie. The promised reward is not cake, and the goal of the game is not to solve a puzzle, the goal is to live another day.

When I see Portal.

I see this.

This the Blue Button Down Load supported by the Markle foundation. This is your entire electronic medical record being down loaded to your very own portal. Now, you can take those records where you will. There are a lot of Chell’s out there desperate to be treated well, desperate to live. Due to tools like Meaningful Use and The Blue Button, they can use their portal guns and get the help they need quickly. For to quote GLaDOS once again, “You appear to understand how a portal affects forward momentum, or to be more precise, how it does not. Momentum, a function of mass and velocity, is conserved between portals. In layman's terms: speedy thing goes in, speedy thing comes out.”

That is a big deal. Timely access to personal health information can make all the difference to patients throughout the world. And to all those out there who think Meaningful Use is just about incentive payments, The Cake is a Lie, my friend. This game is not about money.

It is about life and death.

The Power of Naming Names

What is Bellin Health? That question was asked of me last night as I ate dinner with my friends and fellow members of The Society for Participatory Medicine. I was sitting at a table of people very dedicated to the concept of patient centered care and the e-patient movement. Ted Eytan, MD from Kaiser Permanente, Susannah Fox from Pew Research Center, Danny Sands, MD with Cisco Systems, and Christine Kraft from Perfect Sense Digital all looked at me as I explained my visit to Green Bay, Wisconsin to meet with a hospital system so dedicated to patient-centered care that it named their roll-out of a new EPIC EMR system after a patient.

I tried to paint a picture of words describing what I saw at Bellin Health during their Strategy Day Away on March 11, 2011. I knew my language was not enough to describe the experience. So I am very glad I also painted a picture while at Bellin.

If you Google Bellin Health you will find it described as an “Integrated healthcare delivery system consisting of primary care clinics, hospital services, and mental health care. Located in Green Bay, Wisconsin.” If you click upon that link you will see this picture:

It is a nice screen shot, but it does not capture Bellin Health.

And if you research further, you may find out their CEO is George Kerwin, and he has been their president since 1992, and he joined the organization back in 1971. But you will not know that this gentle and gracious executive meets guests in his office around an unassuming round table, not a large cherry desk. Nor will you find that George Kerwin was one of the forces behind the Bellin Run, a timed race that has become one of the top 10 largest 10k races in the nation. Nor indeed, will you find that when George began at Bellin, he was in charge of housekeeping.

If you search even further, you may even find the name Betty mentioned. And here is where things get very interesting. You see, Bellin Health has these Strategy Day events a few times a year, and unlike some organizations that view such days as a break from the daily grind, Bellin uses them to determine how well they have served their patients. This process led them to someone very special.

Bellin Health wants you to know about a patient named Betty Bundy, a wife, mother, grandmother and great grandmother. On Christmas of 2005, Betty Bundy fell. A few months later, she realized that she had lost her sense of balance and went to her doctor. A MRI was ordered, and the results determined Betty had had a stroke. In 2009, she had an extreme feeling of vertigo. The decision was made that she needed to go to the ER. The hospital treated her the same as they had three years before. They gave her multiple tests and could not find anything wrong, and they sent her home on a Saturday. Within an hour she was back, having almost collapsed trying to go home. Upon her return to the ER she was back to square one with a new doctor and staff. There was no coordination of care between the two visits. The entire protocol began again. She was sent home again on Sunday. On Monday she called her primary care doctor and was told to come in, and by this time she could not walk. She managed to make it to the doctor’s office. He took one look at her and said she needed to be in the hospital. She was transported by ambulance and had a heart attack on the way.

As Betty puts it, “I was inadequately treated. One should not have to fight and go through that type of crap to get into a hospital. When I came back and was having the same symptoms, only intensified, somewhere along the line someone should have looked and said, ‘uh-oh, we better go a little bit farther than we’ve gone. We better not go in the same route.’ My whole history was available if they had bothered to look or to ask. I think a central repository of patient history is vital. Those personnel that I do see on a systematic basis need to know that I have these other people working with and on me. It’s got to be a teamwork affair. So when you centralize that, when that information is available, it doesn’t really take all that much time to determine who this person is medically.”

What makes Betty’s story even more interesting is how Bellin Health discovered her. You see, Bellin Health has an award-winning stroke program. By the all the traditional measures of care, Bellin Health was providing excellent service, but they wanted to know how their patients felt six months or a year later. When the staff decided to follow up with several patients after a Strategy Day Away, they found Betty. And she gave them an earful. Now, many hospitals would have turned a deaf ear or blind eye to her complaints. Not Bellin Health. They asked her to join their patient advisory group for the stroke program.

She had so much to say and add to the conversation that they were inspired to ask her if she would be the face of a new electronic medical system at their facilities. They met it literally. They used her stylized visage on a logo for the installation of the new record system and called it Betty. At other hospitals I often hear disparaging references to new system implementation. It is the new “big monster.” It is the reason for frustration and work flow disruption. It is hard to hate an EMR named Betty. As the staff says this name, they are being reminded. This is being done to create better patient centered care. This is Betty’s story; this is the patient’s story.

They did not stop there. As they have been working through the installation, they have been including patients in their meetings about the entire process. I had the pleasure of viewing such a meeting as Team Leader, Anne Hale, took me on a tour on March 10.

The organization had procured an old retail store in a local shopping mall. In the empty sales space a large crowd had gathered and was working through workflow set after workflow set. The room was filled with all the different staff of the hospital from data techs to nurses to patients.

The space was filled with dedication, energy and freshly baked cookies. These folks had learned something that Ted Eytan and I tried to impart at a recent health care round table in DC. In order to think outside the box, sometimes you must remove the box. Whether you sit in a circle in the Hall of States building in DC or in a huddle in low-tech empty store in Green Bay, the informal friendliness is real life. When we talk health, we are talking about applying it to real life situations.

I also met with the amazing Kari Barrett, RN, who is involved in Patient and Family Participation and Femi Cole in Communications. We had a great conversation about the power of nametags. I mentioned my painting The Onion and the Orchid.

I told them how giving me a name tag that just said “visitor to room 6218” was dehumanizing and took my personhood away. Just as giving my husband Fred Holliday the moniker “the patient in room 6218” was also dehumanizing.

I mentioned that I include speaker’s nametags into my paintings as they let me reclaim my name -Regina Holliday. I also shared information about the wonderful nametags they print at LeBonheur Children’s Hospital in Memphis, Tennessee. They print your name and face on those tags, thereby showing a concern for security and respect. I am very proud of my LeBonheur nametag.

As our conversation continued, Kari shared that even the members of their patient advisors have nametags that are as professional as the staff tags. At that point, I shared one of my greatest concerns with institutional hospital nametags for staff. I call it “nametag flip.” It is the accidental or purposeful flip of the tag so that the patient cannot view the name of the provider. It drives me crazy. There is an easy fix for this. Even the folks at conferences like Health 2.0 know to make the tag double sided so the name always faces out. Femi mentioned it might be one-sided because of a magnetic strip or perhaps it was cost prohibitive.

Then Kari mentioned it could be done as it already was done. Every patient advisor’s tag was double sided, so no matter where they went or if their tag flipped you always knew who they were and that they were patients or family.

I had so many wonderful conversations and saw so many great things at Bellin, but I was there to paint and speak. So on the morning of March 11, I began to paint the words that I had heard spoken at Bellin Health, and those words became the painting Quilting Bee.

And as we already at 1,500 words… the explanation of that piece shall be a post for another day.