Megan’s Jacket: Lost in the Slough

Yesterday was Mother’s day and tomorrow is my birthday.  After painting most the day, I went down to the mailbox.   There was a card from my Mother.   I had just spoken to her yesterday on the phone to wish her a happy Mother’s day.  She never writes very much.  This time it was “Happy Birthday With Love, Mom.  P.S. Wishing you many more Happy Birthdays.” 

My mother only has an eighth grade education.  She doesn’t like to write very much although she has excellent penmanship.   She often laughs after making a statement. As though to say, if I didn’t say that right, it was only a joke.  I tend to do this too, especially if I am nervous.  She has the sweetest crooked smile that resulted from a case of Bell’s palsy long ago when I was only five years old.  I remember the eye patch she wore as she helped me with my homework.  I was trying to learn my letters.  I had written them all backward.  She held the sheet up to a light and turned it around and said,  “See, that is the way it is supposed to look.”  After teaching me my letters, she felt out of her depth as the curriculum became harder and harder.  But she would read to us at night.  I would cherish the times I would nuzzle against her with my sister as she read us the entire Little House on the Prairie Series by Laura Ingalls Wilder. 

I vividly remember one scene in the book “The Long Winter.”  In that chapter Laura and her younger sister Carrie decide to take a “shortcut” through the tall swamp grass or “slough” (rhymes with new.)    Prior to entering the grass they could see their Pa across the field, but as they waded deeper into the tall grass, they realized their very dangerous mistake.  They could not see above the grass around them.  They walked on and on tired and thirsty.  They had no idea if they were going in the right direction.  This image came to my mind last week as I heard Paul H. O’Neill Former Secretary, U.S. Department of the Treasury speak at the New Frontiers in Patient Safety, a Rosenthal Lecture presented by the IOM (Institute of Medicine.)   

I had been invited to attend this IOM event as I had attended some prior events hosted by the organization.  It was on Wednesday the May 4^th, 2011 at 5:00 pm.  Now, it is rather hard to find a sitter at that time.  I went through my regular list of sitters and then contacted Megan Mitchell to see if she could watch the boys.  Megan is 14 but very dedicated and responsible.  She has been helping me host art workshops and community art projects for the last four years.  

She and her friend Eleanor helped create the nametags for the Clinovations Art Show last July.

They were even at the Gallery Event that night, though, as they are quiet and young I am not sure how many people saw them.   Megan said she could watch the boys, so I dressed in my best suit and left for the lecture at the Keck Center at 500 Fifth Street.

As I approached the building I saw incised into the wall a quote by Albert Einstein, “The right to search for truth, implies also a duty; one must not conceal any part of what one has recognized to be true.”  I thought this a very important and a centering statement to read prior to entering the building.

When I entered, I saw some amazing art as I climbed the stairs.  I stopped to peruse this piece on the second floor while the tide of attendees rushed up the stairs or sidestepped the experience by taking the elevator.  The piece was an amazing tromp l’oeil by Robert Van Vranken created in 2002 and though untitled it is subtitled: “Where do thoughts come from and where do they go?”  It pictures an airy laboratory filled with the ephemera of life and the inclusion of such mundane accruements in such a vast piece elevates these items to a level of great importance.  

The speakers at the Rosenthal Lecture were very accomplished in their fields.  I was pleased to see them announce at the very beginning the Twitter hashtag for the event, and then saddened to see only four of us live tweeting.  The keynote speaker was the Honorable Kathleen Sebelius.   She delivered a powerful speech.  She pointed out that although pockets of excellence are nice, they are not enough.  She reminded us that this room was filled with national leaders in patient centered care.  She challenged us to raise our expectations.  Our goal ten years after the IOM report was not to reduce line infections it was to eliminate them.  0% is the acceptable rate for hospital injury.  She went on to say, “If we only improve care in the next decade as much as the last, we are FAILING.”

Harvey V. Fineberg, MD PhD President of the IOM then introduced the rest of the panel.  Donald Berwick, MD Administrator for CMS, Carolyn M. Clancy MD from AHRQ, Brent C. James MD, M Stat CQO Intermountain Healthcare and Paul H. O’Neil former Secretary of the US Department of the Treasury.  And they all had a lot to say about institutional morass.  I looked up to count the patients on the panel.  I counted 4 MD’s and Paul.  I counted 4 men and one woman, even though 70% of caregivers are women. 

When Paul began to speak I was very happy to hear a voice as frustrated as mine often is, as he applied the standards in business to medicine.  He said before the crowd,  “It is like there is a Mountain in the middle of a prairie and no one seems to see the mountain!” And in that moment I saw Megan’s jacket for The Walking Gallery.  I could see a way you could miss a mountain in a prairie.  I could remember Little House.  When you are stuck in your traditional workflows and processes it is really hard to see the larger problem.  If you want to see the mountain you might need to work together as a team and stand on the shoulders of the patient community.  You might want to include a patient on a panel at an IOM lecture.

After Paul wrapped up.  The floor was open for questions and I waited patiently to ask a patient centered question.  They called on two gentlemen to speak and as was about to get to ask a question when the delightful Danielle Turnipseed, an IOM staffer was flagged to the front to hand the Microphone to another man.  Then time was up.

I went to Harvey Fineberg afterwards, and thanked him for the event and told him in the future he might want to call on a few women in the audience.  He looked at me quizzically, his kind face wrinkling in concern, “I hadn’t noticed that I had only called on men.”

Sometimes when we are in the slough we don’t notice things, we don’t see things.  I know I have a closet full of jackets I need to paint that are the property of some pretty important people, but I painted Megan’s jacket today.  I painted her jacket because she is young, kind, and oh so very quiet.  She is exactly the kind of person you might not see.  She will turn 15 a few days before she wears this jacket.  She will be the same age Laura Ingalls was when she finished her education, the age my Mother was when she too had to stop learning and start working.  I want I want a bright future for Megan, for she is mighty and solid like that mountain. She is that invisible patient, that hidden mountain anyone of us could see if we only stopped and looked above and beyond our daily life.

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.