Half Past Midnight: Mark's Jacket

When my eldest son Freddie was born, my Mother-in-law Joan desperately wanted to create a name for him that was all her own.  So she began calling him her “little blue-eyed angel.”  That worked for a while, until he was able to talk.  He would often grimace or look at her with worry when she used her loving name for him.  One day he told her, “I’m not angel, and he is scary.”  Have I mentioned that Fred was writing a dissertation on the Buffy the Vampire Slayer at this time?  He was often watching episodes of Buffy and …Angel.  You know, the blood-sucking vampire who started out brooding, turned evil, and then went back to brooding?  No wonder, Freddie did not like the pet name his Grandmother had bestowed upon him, it was a matter of context.

Well a few years later Joan was given another opportunity; we had a second son named Isaac.  She began calling him her “little blue button.”  He too put up with it, until he could speak.  He told her, “I’s not a blue button, I’s an explosion button.”  Then he threw his arms up in the air to mime a massive explosion.  At that point Joan gave up.  I thought that was the end of the Blue Button.

But lives change, and children grow.  Yesterday, I talked of Blue Buttons again but this time it was with a film crew who are working on a short video for the Markle Foundation.  The Blue Button is currently used within the Veterans Administration to provide vets with a complete download of their medical records.  It is a major step forward in information access within the patient community. The VA developed the Blue Button working with the Centers for Medicare and Medicaid Services (CMS), and the Department of Defense, and the Markle Foundation's Consumer Engagement Workgroup.   I was glad to get a chance to speak with them as I was designing a jacket for Mark Scrimshire  (@ekivemark on Twitter) the creator of Health Camp DC for his participation in The Walking Gallery.  

After the film crew left our tiny apartment, I celebrated my birthday by finishing the painting on Mark’s jacket. Mark’s jacket is leather one.   This is somewhat not quite the vision of The Walking Gallery, but it is a fine leather jacket, almost a business suit.  Mark loved this jacket, and was saddened when he placed a nametag upon it and ruined the front left lapel area.  The residue left a very obvious mark, and Mark’s beloved jacket was relegated to the dark inner recesses of his closet.  Then I told him about the Gallery.  The jacket was saved!  I painted a little logo on the front to hide the offending blemish.  Then painted the back with Mark’s message.

This is Half Past Midnight.  In this painting, time is flying.  The blue flames and heart of health camp are in the wake of the clock’s journey.  Numbers four through twelve on the clock-face are written in Roman numerals.  I wrote the numbers in this way to denote a file conversion and the toppling of an antiquated system of thought.  I learned how to tell time on a Roman Numeral Clock and remember the painful thought process as I converted the concept of time into a number sequence and then converted that into its Roman numeral equivalent, quite a heady brew for a five year-old’s mind.   I think it is a good visual of the translating challenges we face as we use ASKII files and claims based data and try to utilize them in a functioning personal health record.  

In the center of the clock face a female patient flies posed like Superman.  Her foot points down to VI, as her arm points to XII.  In her other arm carries a baby pressed close to her ribs.  The numerals I, II and III, have been replaced by buttons; First the Blue Button, next the Green Button and finally the White Button.  These buttons form the Rainbow Button Initiative. 

On March 21^st 2011, Mark had attended Health 2.0 in San Diego.  There he heard a lot about the Blue Button.  But he also heard patient advocate Dave De Bronkhart speak about a potential new button:

“At a recent round table looking at Patient Centric Health Care. Dave DeBronkhart (@epatientdave) mentioned the idea he and some Health Change Advocates had proposed of the Green Button. The purpose being to allow people to easily share their health data in anonomized form for research and other purposes.  I mentioned this at the Patients 2.0 session and connected this with another initiative....”

#Patients20 @health2con The Rainbow Button Initiative- build on @toddpark idea.Hosted by Healthca.mp Foundation

by Mark Scrimshire

Soon after he added to the conversation with the concept of  a white button:

“The White Button builds on the concepts behind the Direct Project which is about creating "specifications for a secure, scalable, standards-based way to establish universal health addressing and transport for participants (including providers, laboratories, hospitals, pharmacies and patients) to send encrypted health information directly to known, trusted recipients over the Internet. The Network is a set of standards, services and policies that enable secure health information exchange over the Internet. The project itself will not run health information exchange services. Several Federal agencies and healthcare organizations are already using NHIN standards to exchange information amongst themselves and their partners. The Direct Project will expand the standards and service descriptions available to address the key Stage 1 requirements for Meaningful Use, and provide an easy "on-ramp" for a wide set of providers and organizations looking to adopt. At the conclusion of this project, there will be one nationwide exchange, consisting of the organizations that have come together in a common policy framework to implement the standards and services. This project is open government, and as such, contains avenues for a broad range of public participation. See below for more information on participation.

The simple idea is to take the concept of the Direct Project and surface it for Patients as a White Button.  When you put these together you have the Rainbow Button Initiative as a simple concept for Patients to manage their Health Data.  Let's work on these ideas under the auspices of the HealthCamp Foundation. We can progress the ideas at upcoming HealthCamps and provide an update at HealthCampSFBay and Patients 2.0 in conjunction with the Health 2.0 Conference this coming September.” ~Mark Skrimshire

So on this jacket, Mark’s Rainbow Button initiative begins.  His vision could change the way patients receive their data.  It demands timely access while channeling the flow in helpful ways.  And that is the difference between a tool that can help us and a button that leads to a random explosion of data.

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.