SpeakerLink.org

When I think of SpeakerLink.org, I think of the strength of a chain.  I think of the power inherent in each link and of the smiles of a little boy named Isaac.

When my son Isaac was only three years old his favorite toy was not a toy at all.  It was a chain.  It was a heavy 16-foot-long chain. He would drag it along the floor and pretend it was a boa constrictor.  He loved that “snake.”  He would lift its heavy coils of links and smile in ecstasy.  I suppose some parents would not let their children play with a heavy chain and lift its steel links.  But, I thought that as long as it was supervised play, it was a great type of play and fulfilled Isaac's need for deep pressure.

After all, as a child I too lifted chains.  My father was a junk dealer and he sold many types of chains.  I remember some links that were as big as my fist.  Those chains were so very strong.  I learned a lot about chains.  They were strong but flexible: able to bear great weight.

They were so strong because of the links.  Those beautiful curved zeros of steel would glide out of my hand as I placed them on the flea market stall floor.  One link after another would fall.  First on its edge then on the flat, I remember it as a repeating series of 1's and 0's gliding by like some type of iron-age binary code.   

The links were important in that they made the whole. A great burden could be lifted by the strength of such a chain.

I am inviting you to be part of a chain today, a really important chain.

For the past six months, the team from TMIT (Texas Medical Institute of Technology) and I have been working on a project.  Well, really they have been working on many projects.  They have made films on patient safety, worked on standards, and went to meeting after meeting with thought leaders on better patient care. 

But the one project I have worked with them on is Speakerlink.org.

Six month ago TMIT CEO Chuck Denham, MD, asked me what did I think was the most important thing TMIT could do to improve patient care, safety and advocacy.  I told him we needed a patient speakers bureau.  He and the rest of the team broadened that vision to include speakers from every segment of society who identified with a patient centric view.

Today our dream is a reality.  This is what you will see if you go to 

SpeakerLink.org

And if you click on find a speaker you will see this. 

If you scroll down you will see more speakers.  You will see more amazing people who have decided to change the world, who refuse to accept phrases like “that is just the way it is.”  You will see mothers who have lost sons and wives who have lost their husbands, you will see people who have lost so much. 

But they have not lost hope.

You will see people who have dedicated their lives to guiding health policy.  Individuals who have devoted years to health information technology and patient safety legislation have profiles on this site. And you will see regular citizens who have no training in rhetoric here as well.  They speak because they must.  They speak because they are brave and are willing stand up and speak out if they can make a difference by sharing their story.

But this site is missing something.  It is missing you.

Register as a speaker.  Speak for those you love.  Speak for the anonymous millions that exist as a cold data set with no emotional impact.  Be a speaker from experience with patients you have helped or as the patient you have become.

Be a speaker for the dead.

But most of all speak.  For your voice is mighty and true.  It swells and fills the auditorium and fills the mind.  You have the power to change things.  You have the power to be part of a chain reaction.

For the hospital boards, the-C suites, the QIO’s, the Physician and Nursing Groups, the Venders and the Patient Communities are all links in a mighty chain of care.  Speakers connect these groups, speakers go from place to place introducing new ideas, different cultures and share the wisdom stored in so many silos of medicine.  You can become the link I know you are; for you have been through the crucible and have come out the other side.  You have been forged into the finest steel: flexible yet strong.

So, here is my request.  Sign up.  Become a speaker.   Change the world.

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)

Painting at Microsoft

If you were to enter my small kitchen, you would see paint, brushes, and a canvas upon my counter leaning ever so slightly onto the cabinets above. If you opened one of those cabinet doors, you would see a birthday card taped inside.  My husband Fred gave me that card almost 2 years ago on May 10, 2009.  My mother-in-law Joan picked it out, as Fred could no longer leave his bed.  And being well-meaning and an always dedicated mother, she even signed it for him.  In her lovely penmanship, she wrote his name upon this card as she had on scores of childhood Golden Books and pile upon pile of school photos.  She wrote it here as she had done many times before, but this would be one of the very last times she would write for him: “Love, Fred.”  But my Fred was not represented well within his mother’s elegant cursive signature. So, scrawled in Fred’s uneven hand was his added comment, “Love, (Forever), Fred…" And beside that were three symbols: Alpha Omega Infinity. 

For that is what I was to Fred.  I was his Alpha and Omega, his everything.  He signed cards to me this way during our 16 years together.  I look at this card every day when I open up my cabinet.  Taped beside it is the last hospice nurse instruction from 6-16-09.  I can give Fred Atropine every four hours… until he dies 12 hours later.  Both the card and the note await my glance in silence.  I have never taken them down, and daily they remind me of why I paint and why I speak.

Last week I had the honor of painting at the Microsoft Connected Health Conference 2011 in Chicago.  The experience was a little unusual for a conference painting, because I was not in the main hall where I could hear the speeches.  Instead my easel was placed in the very back of the exhibition hall.  This was as close as I could get to the speakers.  And it would have to do.

I was at this event because Mathew Holt introduced me to Luisa Monge, Director, Business Development and Strategy Health Solutions Group, Microsoft HealthVault , prior to Health 2.0 in San Francisco.  Luisa is a kind and charming woman.  She and Garrett G. Clarke, Business Development Manager, Health Solutions Group, even came to DC and saw the December show of my work in Politics and Prose Bookstore.  We had a lovely evening together, and they asked me if I would like to attend a Health Partner Summit in February and speak at the Connected Health event in April (full disclosure: they would pay me an honorarium for my speaking at this event.)

In February, I listened to some amazing folks say some amazing things about what is possible in a PHR.  After two days of listening, I was able to tell the staff at HealthVault my takeaways.  I was very concerned about their use of faceless avatars.  I was disturbed that one of the only graphics representing HealthVault in the many slide sets was a closed lock.  I remarked, “When I hear HealthVault I do not want to see locks.  I want to see the vaulted ceilings of sacred spaces.  I want to be uplifted.”  Finally, I wondered at the meaning of the purple, blue and green ribbons that scrolled across each frame.  What did they represent?  Well, they meant nothing really, just branding, just …decoration. 

I told Luisa I would love to come and paint at Connected Health.   And it really did not matter all that much that I would not get to be within the conference hall, because I had come to paint what HealthVault could mean to the people who would use it.  

Prior to attending Microsoft Connected Health, I had a few conversations with Chuck Denham, MD from TMIT.  I talked with him about his new program CareMoms on SafetyLeaders.org.  According to the site,  “More than 70% of healthcare decisions are made by women in our communities. One in four Americans is a caregiver of someone else, and 80% of the caregivers are women.”   Inspired by this information, I decided to depict HealthVault with an empowered female image.

This is Alpha and Omega: The A to Z of Me.  It is a powerful piece.  The woman here is dynamic.  Her head is thrown backward; her eyes stare at the expanse above.  Her chest is thrust forward and she is positioned like Clark Kent changing into Superman.  The Clark Kent/Superman image applies mostly to the left side of her body, and this is in direct reference to the one speech I listened to that morning.  Craig Mundie, Chief Research and Strategy Officer, Microsoft, talked about the need some patients have for an avatar.   These patients desperately want to use the Internet for research and support, but only if they can have a secret identity or an avatar to protect their privacy.  The right side of her body represents the patients who have “come out” online; they use their own name and are metaphorically bearing their naked self before the world.  Both types of patients would like to access and share data, but their paths toward a health exchange are slightly different. 

The right and left arms of this woman appear to be pulling open the vault of her chest.  As I was painting this part of the picture, many of the men who walked by seemed a bit perturbed by this graphic imagery.  One gentleman even asked me if I was painting the chest-bursting alien from the film Aliens.  I said no.  I am painting a living healthvault.   This is the vault of her chest--here the major organs should reside.  Within this vault, the ribs curve round behind to reveal the vaulted ceiling of a church.  Upon this ceiling is a modified image from the Sistine Chapel.  This is unfinished depiction of a doctor sending the spark of life through the computer to a patient.  It mimics the positioning of God and Adam in The Creation of Adam.  The doctor is God, and the patient is Adam, and both are faceless avatars.  Other than this vignette. the vaulted ceiling is empty; the composition is unfinished.

Soon after I was painting this element, Archie Galbraith from Calance Corporation walked over to talked to me.  As we looked at the painting of a woman craning her neck, Archie shared a tale of his evening at the Sistine Chapel a few years ago.  The company he was working with at the time had a private viewing for two hours (I have never personally seen the Sistine Chapel, but I was speaking about it with a fellow pre-k teacher/artist Courtney Mazza a few days ago.  She bemoaned how much there was to see and how little time she could stop and stare when the crowds of people poured through the space.).  Archie got two hours to look up, and that sparked an idea that it really should be viewed while being pushed on a lying upon a gurney.   As his neck began to ache more and more from the strain, he thought of a better way.  I think Archie is right.  We need to support people as they try to stare upwards.

Below the empowered woman stand two daughters.  They represent the future generations.  They are the reason to work toward better health.  Each of the girls stares out at us with a serious expression as if asking, ”What are you doing to create a better world?”.  Each of the girls and the woman hold a gymnastic ribbon.  These are the Microsoft HealthVault ribbons, and they mean something.   Each awareness ribbon represents various diseases, treatments, or problems. 

Green is labeled: with terms like Childhood depression, open records, and kidney cancer.  Light blue is childhood cancer, prostrate cancer, and Trisomy 18. Purple is pancreatic Cancer, testicular cancer, ADD, and domestic violence.  Have you ever played with a gymnastic ribbon?  They are fun, and you want to play with them.  The key to people utilizing a PHR is to make it fun yet meaningful.  I am glad I got a chance to paint this vision of a PHR, and I am glad Microsoft purchased this painting via a charitable donation to the Society for Participatory Medicine. 

As the conference wrapped up,  Liza Sisler came over to speak with me as she had many times throughout the day.  She is a friend of mine on Twitter and is Microsoft National Sales director at Perficient.


She is an amazing lady whose accent rambles back and forth from an Irish lilt to an American flat nasal tone.  She works at a company that tries to help providers use the Microsoft technologies already at their disposal to create a better working environment.

As I stood before the painting, I said, “Do you see it?  Do you see how her body forms the Alpha and Omega?  See how her hair is blown back to form the omega sign.  See how her shoulders, arms and chin form the Alpha?”  This patient stands before us reminding us, “I am the first and I am the last.”  That is a vital lesson as we look at the PHR within the scope of a health information exchange.  And coupled with that other saying, “Nothing about with me, without me.”  It makes quite a powerful point. 

Praying with Chuck Denham

I have told you before that as a child I worked at a local flea market in Sapulpa, Oklahoma. It was hard, dirty work, and it made me despise at a very young age any passing fad or craze. You see, every couple years after a fad died the over-abundance of certain products would crowd our stall and be almost impossible to sell. I, to this day, cannot stand termite shoes, Rubik’s cubes or feather earrings. But I truly disliked the many mugs, wall hangings, and decorative pillows emblazoned with the words to “Footprints in the Sand.” As a child, I found distasteful the hokey 1970's imagery of the beach sand and the disappearing footprints next to text written in mass-produced faux calligraphy. I am sure you are familiar with the tale. In it a man walks with God along a beach as the memories of his life pass him by. He notices in his darkest times there is only one set of footprints. He questions God, “Why did you leave me at my saddest moments?” God responds that when there was only one set of footprints that was when God carried him.

As a child, I really did not like “Footprints in the Sand.” In many of the pictures, it seemed like Jesus was carrying the dead- their arms limp and dangling. I did not want to look at this, and I did not want to be carried. Perhaps, as I was young, that memory of being carried, that loss of control or will was too fresh, so I could not accept this image. When I was a child, I spoke as a child; I understood as a child, I thought as a child…

Now, I am often asked "How do you do all that you do? How do you have the energy to balance teaching art, advocacy, blogging, giving speeches, and painting?" Well, I do not do walk alone. I pray, and God gives me the energy to sustain this life.

I remember one point when Fred was in the hospital, when all things within this life seemed so very dark. I remember praying for the peace of God, that it fill me and uplift me. And it did. I remember the moment. I was walking through the hospital cafeteria praying silently when I was filled with the love and light of God. My face was lit with an inner peace and even the hospital workers remarked upon my visage. The footprints artist had gotten it all wrong: when God carries you, you float.

Time has passed, and I no longer burn with this inner fire. I smolder. The journey is long, and I know the spirit is still within. I listen carefully and watch for “God moments.” My sister Esther and I call those moments of divine direction that happen with our lives “God moments.” I listen, I am open to direction, and I know the freedom of putting one’s life in God’s hands. So when I was invited to speak at 2010 CMS QualityNet Conference on December 2 in Baltimore, I said yes.

And that is how I met Chuck Denham.

Do you know Dr. Charles Denham? He is an amazing man. He worked with many cancer patients over the years as he has a background in oncology. He is founder and Chairman of TMIT (Texas Medical Institute of Technology), a non profit driving adoption of patient safety solutions and in this capacity he teamed up with CareFusion and AORN (Association of periOperative Registered Nurses) to produce “Chasing Zero” for the Discovery Channel.

“Chasing Zero” first aired in April of 2010. It stars Dennis Quaid in his new real-life role as a patient’s rights advocate. It is a very strong documentary about patient safety, and it made quite a splash in the world healthcare and patient advocacy. I had seen parts of it before meeting Chuck. I knew about the reason why Dennis Quaid was acting as a spokesman for patient safety as well. I had seen a repeat of his March 2009 appearance on Oprah while Fred was sick in the hospital. I heard him speak about the fateful overdose of his young twins due to a case of look-a-like bottles of blood thinner. The twins were mistakenly given a dose from a 10,000-unit bottle instead of a ten-unit bottle… and it happened twice. The twins did live, but this acted as a wake up call for Dennis, and he decided to help so others would not have to suffer as his family did. Dennis Quaid’s inclusion helped a strong documentary become a must-watch call to action.

Chuck asked me how I had gotten invited to CMS. I couldn’t tell him at that moment as I had forgotten the complete course of events, but now I see clearly.

I spoke before CMS, because on Sunday, May 3, 2009 I worked at Barstons Child’s Play- the toy store. I only worked at the toy store for three days when Fred was sick, and one of those days was May 3. Fifteen minutes before the store closed, Christine Kraft, a long time customer, came in, and I told her about Fred and kidney cancer, and she told me about Twitter, blogging, Health 2.0,and ePatient Dave. After Fred entered hospice, Christine put together a small Health 2.0 get together on May 27, 2009. That day I met Ted Eytan, MD. I would later find out he worked at Clinovations in DC and he would introduce me to Greg Fuller who would pitch patient participation at CMS on November 8. Greg would give them my name.

So on December 2, I spoke before CMS about Fred, patients’ rights, Stephen King, social media, special education, and Cub Scouts. I would tell them that putting the “H” in HIT requires remembering… Holliday, Fred; not the patient in room 6218. After I finished, a slow standing ovation spread through the room. Then Chuck Denham can over to speak with me about how he would like to spread this message far and wide. We spoke briefly, and when he learned we would both be at IHI on December 5, he asked me to film a small piece we could send to clinicians about why it is so very important that patients and caregivers have access to the electronic medical record.

Then Chuck did something very few people have ever done. He asked me how I was feeling, and he really listened to my answer.

I told him that when I paint or speak I go into that gray, sad place, and I walk in darkness for a while, but I come back renewed and refreshed. Chuck told me he has worked with many advocates, and he is concerned. He is concerned about our continual revisiting our deepest sadness, just so we can tell our tale to others. He worries about us and wants help us. So when we were filming on December 5, he asked what is it that helps me and inspires me and what supports me in my sorrow? I looked him in the eye, and I said God does.

So Dr. Charles Denham did something that no other doctor has ever done with me. In all the hospitals we stayed in, no doctor ever reached out and prayed with me.

In the many hospitals Fred stayed in, we were asked during admitting if we would like “a spiritual consultation.” This was asked with all the presence and compassion as the familiar phrase, “Do you want fries with that?” Even at hospice, when the bereavement coordinator spoke to me, she focused on my emotional support system. I told her that God sustains me. She rephrased it to me, “You mean that your belief system helps uphold you.” “No,” I said. “My belief system does not hold uphold me. God enters my soul and gives me peace.”

So, I sat there with Chuck and we prayed, and once again, I felt that wonderful peace of God.

CMS Presentation putting the H in HIT

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