Thank God for Mississippi

I have attended quite a few medical conferences over the years where health professionals from states that are struggling to improve their healthcare ratings remind the crowd that they may be bad, but Mississippi is worse.  They may be 48^th out of 50 on obesity levels, diabetes care, low birth weight; but they end their speech with: “Thank God for Mississippi!” 

These words draw a chuckle from the crowd because Mississippi ranks last or ties for last on rating systems.  United Health Foundation and The Commonwealth Fund both place Mississippi as having the worst score on numerous measures and Mississippi has held this position for over 10 years.

So I was very glad when Cheryl Hamill, RN MS Clinical Outreach Coordinator from UMMC School of Nursing in Jackson, Mississippi reached out to me.  Dave DeBronkart recommended me as a good choice of speaker for a potential keynote speech.  The focus of this event would be heath literacy. She thought my background and health mission focus would be a good match for the needs of their mostly rural and very underserved population.

Now with most busy conference planners after this initial outreach and securing my agreement to present, the planner would hand me off to a subordinate.  Cheryl is not like most conference planners.  She kept me in the loop through two very informative planning conference calls with the speaking team.  She communicated changes and new ideas through 177 emails in a six-month period.  She friended me on Facebook and I began to know her as regular person.  She joined twitter and began to tweet.

She was very organized and willing to try new things, which is such an unusual combination.  Upon hearing my explanation of the importance of twitter in patient advocacy and the power of using twitter hashtags in communication during a conference, Cheryl decided to encourage all attendees to open twitter accounts prior to the event and raffle several prizes only eligible to those who “live-tweeted” the event.  She even helped organize a pre-event tweet chat focused on how to “live tweet” a conference.  I provided twitter guidance online as well as through a 1(800) number Cheryl set up just to facilitate tweeting.

Cheryl did not stop there. When I suggested we complete the conference by hosting and “unconference” session, she wholeheartedly endorsed the idea.  So Bonnie Westra PhD, Associate Professor University Of Minnesota and I would teach the concept of open space to 89 unconference virgins in a little less than two hours. 

That is what I call a brave conference planner.

On Monday June 17, 2013 we would meet just outside of Jackson Mississippi and discuss health literacy in this state.  Our day began with Libby Mahaffey, PhD, saying opening remarks focusing on Cultural Awareness & Health Literacy...the Journey Continues. Next we would hear from Deb Washington, PhD, RN, Director of Diversity-Patient Care Services, Massachusetts General Hospital. Deb was an amazing speaker.  Her power point deck had a crisp easy to read large font and she expounded on the difference between the Democrat belief in system design and Republican philosophy of individual responsibility within healthcare.  She also showed us an advertisement from her Sky Mall magazine that informed travelers how to pack a suitcase with a built in compartment checklist for every need.  We need this kind of organization in healthcare, she told the crowd.

Next Tonya Moore, PhD, RN, Chief Learning Office, UMMC spoke about Mississippi county health rankings and spoke in-depth about internet access within the state.  She would soon introduce me and I would find out that she is the grand niece of Medgar Evers.  She mentioned my mission focus of improving patients’ rights in relation to the history of civil rights.  I was so very honored.

This was a special day for a keynote.  This day was the fourth anniversary of my late husband Fred Holliday’s death.  I could think of no better a crowd to share our personal story with on such a day, for I was in a room of those who had suffered and they understood pain.

When Terry Davis, PhD, Professor LSU Health Science Center began to speak she had the most amazing videos to share of patients with low health literacy being interviewed.  One of the most poignant was of a young mother who did not know what a milliliter measurement was when dosing her children with ibuprofen.  We also heard an elderly lady tell us she never bothered to read the warning labels.  (On one of her bottles of medication she was advised not to drive and she had driven to the appointment)

Then I began to paint “The View From the 50 Foot Patient.”

The title of this piece was based on a corporate phrase and a B-movie title.  I have been to quite a few events where I hear the phrase “Let’s take the 50,000 foot view.” I must admit I want to roll my eyes, because if you are taking this view you are in a highflying jet and way out of sync with those of us living in the daily grind of healthcare.  I also felt a kind of exploitation of the b-grade movie when we watched the videos of those with poor health literacy. It made me think of the poor heroine of that film when no one would believe her due to her past history of alcohol abuse.   So our lovely patient kneels down dressed only in a banner of drug warnings like some contestant in a pageant no one ever wishes to enter.

 

Behind her is a cloud of warning based upon the presentation of Melissa Stewart, DNP Faculty of Our Lady of the Lake College.  She showed us her UPP (Understanding Personal Perception) to gauge a patients understanding using the image metaphor of a range from a bright sunny day to a deeply cloudy sky.

The second painting is based on the presentations of the second day especially Jonathan Vangeest, PhD, Chair Department of Health Policy and Mgt., Kent State University College of Public Health.  This painting is called “Altar Call."

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In this conference, unlike may others, the conversation of faith in was concert with questions of health and we benefited greatly from such dialog.  We also heard the powerful story of Jonathan’s medical history.  He was a promising student with an engineering bent when he was working in a workspace that all equipment was being sealed with a toxic sealant.  Due to his hours spent in such an environment Jonathan suffered frontal lobe damage, which resulted in life long epilepsy.  So within this painting a young Jonathan stares out of a stained glass window with the supervisor wearing a gas mask.  Jonathan also spoke about the marketing of McDonalds and how they used a friendly clown to convince children to come and bring their parents to eat at McDonalds.  So within the painting’s shadows I worked in an arched M and the clown’s face.

 

To the left is another M.  It came from a speaker’s story about a local public health group that wanted to reach out to the “Mexican” population in their community.  They built an entire health literacy program in Spanish.  When they went to the community they realized the residents were Mayan not Mexican.  I finished this painting quickly as I need to help Bonnie host the unconference session.

The unconference session was marvelous with 9 different individuals pitching sessions. I was able to host a session on how to crowd fund in healthcare, introducing the attendees to the wonders of Medstartr and HealthTechHatch.  It was great.  Bonnie was a wonderful facilitator making sure every session concluded when it should so the next could begin.

 

 But everyone in the room learned it is not over until it is over.  Then the raffles were won and I looked at the amazing reach of the hashtag on Symplur.  You can see the analytics here and the transcript here.

The conference day finished and I thanked Cheryl for inviting me and I thanked God for Mississippi, not as some trite phrase or laugh line within a speech to inform.  No, I thank God for Mississippi.  I thank God as Jesus would.  For in the parable of healthcare Mississippi would be the tax collector, the poor widow, the leper and Jesus saw the greatest hope with such as these.   

The folks in Mississippi know what it feels to be the lowest of the low and from there anything is possible. Thank God for Mississippi.

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.

Social Justice Camp II: On Water Ripples and Spider Webs

Social Justice Camp II: The Empowered Are Back is less than a month away. It will be on two weekends. It will have two locations. These two weekends will bookend and support the work of some amazing local activists and artists. On January 15 and 16, the traditional social justice group will meet. On January 21, we will collide worlds, and social justice will meet health at 7:30 pm at St. Paul’s Lutheran Church, located at 4900 Connecticut Avenue. There will be an ignite speech session. These speeches will only be five minutes long and will ignite the passions of the diverse audience. The next day, on January 22, we will start at 10:00 am in an unconference and do many breakout sessions about health and social justice topics until 3:00. We shall build an amazing web of advocacy.

Have you ever truly stared at a spider web? Have you seen it glistening with dew at sunrise? It is a thing of beauty. It is amazing that such a small creature could create something so immense, so beautiful, and so connected. The small spider may seem to work alone on this, dutifully extruding the silk that shall become the web; but all would fail without supports, without connections. Would there be a web without the branch, the shed, or the fencepost to provide a purchase? The web does not exist without a network of support. The web is an amazing tool; it catches sticky thoughts and activates people, and it grows.

I was invited to attend Health Camp DC by Mark Scrimshire (he is part of my Twitter web) on November 12, 2010. It was a wonderful event. It was hosted in an unconference format and the participants were from diverse health and tech backgrounds. I went to several breakout sessions, and in each session people began to focus on what health services were available to the poor, underrepresented, or disadvantaged within our community. As the conversation went further, I realized most of the people had never worked with the activist community in DC. They had few contacts with those people already making a difference in the public health within community. I was amazed. I asked if anyone had attended Social Justice Camp. I learned that only one attendee, Cindy Throop, had. I decided at that moment that Social Justice Camp must meet the Health 2.0 movement.

What is Social Justice Camp? It consists of an ignite session of short speeches and an unconference. Last year, I was invited to attend Social Justice Camp DC on MLK weekend by Aaron Ginoza. He read about my work on Twitter and thought I would be a good addition to the ignite session of Social Justice Camp. I went with my friend Cindy Throop. It was an amazing night! I met so many empowered and energized activists like Greg Woods and Kelli Shewmaker. They were so inspiring. Then sixteen people gave rapid fire five minute speeches with twenty slides, and I got a very fast immersion education about public health, homeless causes and the power of social media in Washington DC.

I left that meeting energized and made so many wonderful connections that would dramatically affect my life in 2010.

I met Chai Shenoy and Shannon Lynberg with Hollaback DC. They would inform me of the dangerous impact of sexual harassment on the citizens of DC. I would agree to work with them on a mural project, and at this point we are waiting for a wall on which to paint our vision. I would present with them at a Chispa event and blog talk radio.

I would meet Joni Podschun and Greg Bloom with the Save Our Safety Net campaign. They would invite me at attend city council meetings to show support for keeping city services intact for our poorest citizens. They created a branding campaign where our council leaders who supported the safety net were depicted as super heroes. So I painted a large banner for them of all the council members who had supported the concept. We then stood arm in arm around the Wilson Building supporting the safety net and holding up the banner.

Due to my work with Greg and Joni, I would talk with Lance Kramer, who would ask me to work on the healthy food in DC schools campaign. Lance and I came up with a great arts action but would not get to complete it due to a city council decision, but Lance would contact me over the summer to place a show of my advocacy art in the local coffee shop Modern Times in the Politics and Prose bookstore.

I met Eric Sheptock at Social Justice Camp. He was recently profiled in The Washington Post, and would learn firsthand of his homeless advocacy while being himself homeless. He would become a good friend on Facebook and would inspire me to host several events at my church St. Paul’s, that would fund our homeless shelter and homeless causes in DC.

In February, I would begin working with the 6^th, 7^th and 8^th grade artists at Deal Middle School on a series of six social justice murals. I would get to talk and work with fifty youths as they focused on, discussed, and then painted about social justice issues throughout the globe. These six paintings are on permanent display at the school. They look so pretty when you just glance at them, but if you take a moment and truly look at them, you can see the sadness they convey.

I would meet Amanda Jones from Out of The Boat Ministries, and she would alert me to the homeless youth who must couch surf from home to home as they do not have a safe place to live. Then during the blizzard in February, I would see a tweet from Amanda saying that she would need a place to stay once she came home via Union Station as none of the over-ground Metro stations were working. I replied that I was only five blocks from Van Ness/UDC, so she trudged over four foot drifts to come to spend the night. She played for hours with Isaac and filled our house with joy as she couch-surfed into our lives. In March, she would rally with me for patient’s rights. In May, she would come back to help me run a rummage sale at St. Paul’s Lutheran to help homeless ministries.

I would meet Ben Merrion who works with the non-profit DC Learns adult literacy outreach at MLK Library. I would find out that Ben was on the board of Hollaback DC. Ben too would rally with me in March for patients' rights. He would also attend my gallery show at Clinovations in July even though it meant missing a church choir practice. I would find out that in addition to being an activist, he was as geeky as the rest of my friends and family. He would come over and watch long Doctor Who marathons with Will Kemp, Michael Wenthe, Rebecca Boggs, and our little family. He helped bring back joy and laughter to my boys and me, and I can happily say that we both have Facebook profiles that state we are in a relationship. I think of the "trouble" we can cause together.

So, I can rightly say Social Justice Camp rocked my world. I made so many contacts that opened my eyes and sent me into new directions of thought. So, I would like all my health friends to meet all my activist friends so we can create some great ripples together. That is why I have teamed up with Social Justice Camp.

I would like to throw a stone in the water and watch the ripples grow. I would like to see what happens when we get such amazing people together and create an intricate web. I hope you can join me…. You can register to attend at here.