Not Your Father's CMS

Several times I have braved the sticky DC heat to trudge up the street towards the headquarters to Health and Human Services (HHS).  Currently there is a great deal of construction in the area.  Street grit and dust assail those who arrive by the metro tunnel.  It is very bright at street level and everywhere I looked stark concrete reflected the summer sun.  I walked up the street to the Herbert H. Humphrey building that houses HHS.  It was designed in the brutalism style.  The building is a white box with a repeated series of box like windows.   The grounds surrounding the building are white granite and concrete.  There is nothing of nature, no tree, no grass: all is hard angular lines.

I walked through the doors and passed through security.  The interior of the building is a classic space with warmer friendly colors.  Here the dark wood counters and floors of polished granite welcome the weary health enthusiast. 

Beyond security is the Great Hall.  This large open space was designed for change and the seating is modular.  High above large portraits of the former secretaries of HHS loom larger than life.

I came to HHS this day because John O’Brien, Senior Advisor of the CMS Innovation Center had emailed me an invitation to attend a National Stakeholder Briefing on Health Insurance Marketplace/Exchanges.  I took a deep breath and prepared myself for the next 2 and ½ hours of what I would assume would be a lecture about the Affordable Care Act.

I should have realized that this would not be a traditional meeting when I was handed a CMS packet containing only three sheets of paper.

Let me repeat that: Three sheets of paper.  That is quite odd.

I took my seat and then began to read my packet and practically squealed in excitement!  Written under a CMS logo were words I knew very well!

“Rules

1.     Whoever is there is the right group.

2.     When it starts is when it starts.

3.     Whatever happens is all that could have happened.

4.     When it’s over, it’s over

The Law of Two Feet

If you find yourself in a situation where you are not contributing or learning, move to a place where you can.

THIS WAS AN AMAZING DAY!  CMS WAS HAVING AN UNCONFERNCE!

I could not believe my lucky stars. The facilitator began explaining this process was an open space technique and they would be using it to discuss messaging around insurance exchanges.  He then asked the crowd of two hundred if any of those in attendance had experienced this process before.  I raised my hand proudly as did about ten other audience members.

He then asked for a volunteer to pitch their idea for a session and place it on the board.  There was quiet for a few seconds and then I jumped up and went to the front to grab the microphone.

“Hi, I am Regina Holliday and I am an artist who paints about healthcare.  I spent a great deal of my life uninsured and I would love to speak about how we can use art to reach people who are uninsured and need help.”

I then grabbed a marker and created the sign for my session.  People began to stand up in the crowd and slowly come forward to propose sessions and in about ten minutes the board filled.  Then we began to rearrange the chairs in the room in order to create session space. I went over to my session space to wait for our group.  Four people showed up. I know full well the rules of an unconference: “Whoever is there is the right group.” I quite enjoyed the conversation in our small group. 

The next session I attended was about the role of the Church in helping folks understand insurance exchanges and there were about 20 people in the group.  So in case you ever wondered at CMS talking about Art is scarier than talking about GOD.

The session on religion was great and was facilitated Lisa M. Carr, Associate Director of Faith-Based and Neighborhood Partnerships.   We had a wonderful group full of diverse perspectives.  Some people worked for CMS, some in advocacy and we even had a Reverend in the group.  We talked about Men’s Ministries, the importance of messaging from the Pastor and the different neighborhood groups that can be reached by one Church body.

All too soon it was time to place our chairs in a circle and report out.  A few people stood and expressed their excitement using this new method.  I spoke out too saying how happy I would be to tell patient advocates that CMS used this disruptive form. 

Before I left, I gave John a big hug and thanked him for inviting me.  HHS maybe shaped like a big brutal box, but the people who work there are thinking outside of it.

A New Day

I have two names.  I have always introduced myself as Regina.  Once, I was Regina McCanless.  Now, I am Regina Holliday.  But to my late husband Fred, I was someone else.  I was Reggie.  I was Reggie who worked in a Toy Store and read books with him on dates.  But when Fred died, I put Reggie away.  Oh, the folks who knew from years before and had met me through Fred still called me Reggie, but no one in Health 2.0 or patient advocacy did.  And that was okay, because Reggie died with Fred.   

That is no one in my new world of advocacy called me Reggie, until I met Chuck Denham.  I guess he saw my email handle and figured out my other name.  He began calling me Reggie and I called him Chuck- not Dr. Denham.  Then he began introducing me to others as Reggie.  I got some strange looks from Health 2.0 friends who always knew me as Regina.

Then Chuck introduced me as Reggie before the assembled crowd at The Partnership for Patients-NPP kick-off Meeting in Washington DC on June 16^th, 2011. 

Everyone began calling me Reggie, just as Fred had. 

Today is the second year anniversary of Fred’s death.  I am sure Fred would be proud that his Reggie represented the Patient Voice in such a meeting.  And I am really glad that I had the chance to attend, but 24 hours before I wasn’t invited.

I got an invitation to participate from John O’Brien at CMS on Wednesday evening.  I met John last July at my e-Patient Ephemera Gallery Show at Clinovations.

He spoke with me briefly and I began to follow him on twitter.  In March, I met him again and asked him if he would be interested in participating in a new patient-centered art action called The Walking Gallery.  He said he would love to.  He dropped off his jacket, but alas I did not get to it in time.  He walked with a fail whale on his back and I promised to paint his soon.

I told John I would love to attend the meeting and paint on site as well.  He said yes I could paint.  I told him I would paint his jacket that night.

This is John’s jacket: A New Day.

In this painting there are three John’s.  The John in the back was from years ago when he worked in sports broadcasting.  The next John is becoming interested in medicine and is studying pharmacy.  The final John is working at CMS and is involved in national health policy.  This John holds out a welcoming hand and invites the patient in.  In the background, a patient stands. 

She stands on the threshold of an open door.  Her arms are raised as if embracing a new tomorrow.   She has been invited in.

When I arrived at the meeting, I handed John his jacket.  Which he promptly dressed into and wore for the remainder of the meeting.  I was wearing my “Little Miss-A-Type-Personality” jacket.  So there were two uniformed members of The Walking Gallery present.

I set up my easel and began painting.  Everyone seemed very receptive to this.


I began by redefining the logo of the Partnership For Patients. You see the current logo depicts doing something to a patient rather than working with a patient.  So within the painting I painted the Doctor checking the patient’s heartbeat.  And the patient is embracing the Doctor and providing emotional support.  As I was painting this part, Helen Darling and Bernie Rosof Co-Chairs of the National Priorities Partnership were speaking. 

Soon Carolyn Clancy Director from AHRQ was up next and then Joe McCannon Senior Advisor, CMS.  Both of them said some very powerful things about the potential for positive change if we all worked together.  Next Dr. Paul McGann and Dennis Wagner spoke and they were dynamite, they lit the room with their energy and passion for the partnership.  I continued painting while they recognized my presence within their speeches.

Around 10:00 am Debra Ness, from the Partnership for Women and Children spoke.  I was so glad to see her speak again and hear her amazing passion.  I had just seen her present at the Annual National Partnership for Women and Children Luncheon on June 9^th, and she was just as dynamic at this event.  Next up was Richard Foster informing us about happenings in South Carolina Hospital Association. Mary Eagan from Honeywell presented a strong business case for supporting the Partnership for Patients.  And then the driving change session was finished by a presentation from David Pryor from Ascension Health.

At this point I was pulled aside to speak backstage for a few minutes with Don Berwick.  I said how much I enjoyed seeing him again.  Then I held his arms in mine as I told him that millions of patients were praying for him.  I locked my brown eyes with his hazel ones and told him to never give up.  I watched his eyes shine with sheen of unspent tears, for all the Ann’s, all the Fred’s and all those that suffer on this day in the current system.  He asked me if I would like to come up to the podium and speak during his allotted time and I said yes.  I also told him when he was ready to join The Walking Gallery I would paint his jacket.

Not long after Don Berwick called me to the front of the room.  I spoke of Fred and medical record access.  I spoke of the power of involving the patient and caregiver in medical model.  I explained the name given to me by an uncaring doctor and then spun around to show them I had embraced the term “Little Miss A-type- personality.  I explained that if we could have had daily and realtime access to his medical record Fred would have gotten better care.  I ended with a call to action asking them invite patients and caregivers into the team.

Soon the afternoon session began.  I painted the dual goals of the Partnership for Patients: a 40% reduction in Hospital Acquired Conditions and a 20% decrease in readmissions by 2013.  And I depicted them as children’s slides on a playground. 

The afternoon session was filled the ideas of attendees.  Everyone began networking and sharing thoughts and making individual commitments to what they would do to help.  Chuck Denham stepped forward and mentioned the Patient Speakers Portal that TMIT is creating with the help Trisha Torrey, myself and other amazing patient activists.  Each person stood to offer his or her commitment.  One gentleman stood saying, “I didn’t know I was coming to be part of an altar call.”  The crowd laughed, but I have never heard a statement more true.  There was such a spirit of giving in the room.   

I painted a joyous doctor sliding down the 40% reduction slide.


I painted a patient waving and looking over her shoulder at patients far off in the distance.  Soon it was time to conclude the meeting and I was asked to come to the front of the room and do a short speech explaining the painting.  First Paul McGann and Dennis Weaver spoke summing up the power of the day.

 Before, I spoke someone asked what was the “thingy that would hold this six pack together.”  Would we email, create a list serve?  What would it be?

I began to speak.  I asked those assembled, “How many of you are on Twitter?”  A smattering of hands rose.

 I said, “Look at this painting.  Do you see what is in this patient’s hand?  That is a smart-phone and this patient is live tweeting from her appointment.  You ask how will we spread the message?  Do you see that belt in this painting, and all those people standing…. outside the Beltway?   You want to know how we will stay in touch and spread the word?  We will do it by social media.

Did you know while we were here at least three people were live tweeting this event?  BunnysGotMoxie (Lauren  Murray), John O’Brien and myself are already spreading this.  And due to a photo that John tweeted, there has already been a blog written about this event.  Get on Facebook, get on Twitter.  The Partnership for Patients working with Patients and social media can change the world!”

I bowed my head in thanks to all those amazing folks, as the audience rose to their feet in applause.

And 24 hours earlier, the patient voice hadn’t been invited.  See what a difference a new day makes.

(This is dedicated to the memory or Fred Holliday II PhD. I love you. -Reggie)