@Medstartr

"Iron rusts from disuse; stagnant water loses its purity and in cold weather becomes frozen; even so does inaction sap the vigor of the mind."
~Leonardo da Vinci



Medstartr: a Poem and a Painting

We sit at u-shaped tables, round-tables, head tables. 
We talk of health.  
We sit within hallowed halls and gilded ballrooms. 
We attend summits, conferences and symposiums 
in a desperate need to change the world of care.

And we talk, talk, talk.  

We shiver in rooms too cold 
and shake from impatience more than chill.  
My dress shoe tap, tap, taps 
a morose code of fury, 
that three years have passed and yet we talk.

When my outrage can no longer be contained 
I text, text, text.  
There are others like me, 
who refuse to sit still.  
We will turn these tables.

We plan to act, act, act.

We've found the wisdom of the crowd,
to fund our disruptive treason
and confound the reason 
of those who think change can only come from up above.

Because we love, love, love
Those whom we've lost.
Those whom we sought
Who sadly thought
that you could talk, talk, talk.
and stop the grieving.

We are those who seek backers
whilst our backs press against the wall.
We will not retreat
as you retweet
our clarion call to act, act, act.

Did You Wash Your Hands?

I don’t remember the exact day I met Marsha.  I felt as though we have always known each other.  Perhaps we met at Child’s Play the toy store or on the Murch elementary playground picking up our children.  I know I have followed her on facebook since 2010.  She is kind and loving.  She walks with an easy stride with her children at her side and a babe within her arms.  I know she is very busy juggling a career of singing and playing an instrument with the duties of a mother.

No, I do not know the moment I met Marsha, but I remember very well the day she joined our movement.  I was in the grocery store fruit isle and I told her about this idea I was hatching to create a Walking Gallery.  I asked her to join us and consider writing a song.  She could focus on hand washing, as it was so necessary to fight infections in the hospital setting.

Now, often when I tell folks about the world of healthcare and patient advocacy on playgrounds and in stores, they shake their heads sadly agreeing something must be done.  But the weeks pass and I do not hear from them again.  I am sure they mean well, but the price is too high, time is too dear and they do not make the leap from a world play-dates and sippy-cups to the world of health activism.

Marsha leapt.

This is Marsha Goodman-Wood’s jacket: “Did You Wash Your Hands?”

I painted this jacket in my hotel room days before The Walking Gallery first gathered on June 7^th 2011.  I had agreed to deliver a speech at Cerner that week and had no idea how busy I would be painting, so stuffing a few jackets into my luggage seemed a smart move.  I painted this jacket thinking of how beautifully Marsha sings to children.  She sings clearly and her voice sparkles. She never condescends, but instead sings to children at their level and her large smile is reflected on the faces of all who hear her.

In this painting a small child looks in awe at the water before her.  Her hands are frozen in the air, bar of soap in hand as she stares at a little person in the flowing water stream.  The small figure stares at the child as if to say, “Did you wash your hands?”  Small children do this task with such joy.  They rush out of washrooms arms held high saying,  “Smell my fingers!  Look how clean I am!”  Then they smile and run away, to other joyous tasks. 

As adults we lose that joy.  Water is just there beneath us, a quick splash, a squirt of soap, a quick rinse and on we go to put out another fire or endure another hour on the job.  I wonder what happened.  Did we get too tall to appreciate the wonder of the lifesaving flow of pure clean water?  Would we appreciate it more if it poured before our very eyes like in this image of a child? Would we too experience awe if our arms we raised in supplication of the cleansing flow?

Unlike the other 163 jackets in The Walking Gallery this one has an accompanying song.  Marsha wrote “Nobody Likes Viruses and Germs.” She placed it on her most recent album “Gravity Vacation.”  She sings a song designed to limit patient harm at children’s birthday parties and school fairs.

So many people in healthcare sigh in frustration and wonder what can be dome to reduce readmissions and lower hospital acquired infections.  I want sing out in response: “Look at Marsha she is doing it!”  She is playing her guitar and singing what we should do.  She is telling children and their parents.  She is making safety messaging joyful and fun.  She has taken her talents and abilities and applied them to healthcare.

Look at beautiful Marsha signing and changing the world!  And imagine how fast healthcare would change if every one of us would use our talents and abilities and apply them to preventing healthcare harm.  Imagine that world.

#OccupyHealthcare

Tuesday September 20, 2011 I met Ben Miller at the annual AHRQ meeting near Washington, DC.  You might know him as @Miller7 on twitter and his social media voice is loud and powerful. I have followed his wisdom for years, but on September 20th I had a chance to meet him in person.  He is a kinetic flame caught within a human form.  His slight body moves through the crowd like raindrops on a windowpane.  He is quick, unpredictable and oh, so very graceful.

He was wearing a three-piece suit and I offered to paint his jacket then and there.  He cocked his head to the side and smiled with an impish grin replying, “My wife would kill me if you did that.  This is my good suit.”  Not wishing to create martial discord I offered to paint another suit as soon as he could send one.  Then Ben invited me to attend his Mental Health Town Hall meeting the next day and I would paint the session.

I came to Ben’s session with my French Box Easel in hand prepared to weave through crowds in order to set up in the back of the room.  I was dismayed to arrive and find a room designed to seat 300 with about 50 attendees.  The room next door with its presentation about Partnership for Patients was filled to capacity.  Was there so much stigma attached to mental health that even attending our session was verboten?  I furiously began to paint. 

I painted the jacket The Stream during that session.  I spoke to Ben afterwards saying I would like to help him in anyway I could, and especially would like to spread the word on what he was trying to accomplish in the world of mental health and patient access to data and health records.  

Not long after he contacted me about his new twitter initiative and blog: #OccupyHealthcare inspired in part by the #Occupy movement on Wall Street.   Quite a few outspoken patients and providers had been saying some rather revolutionary things for quite a while now.  We would tag them #hcsm or #ptsafety, but now we had a new tag #OccupyHealthcare.  Ben created a site that would gather our words and magnify them and in the months hence he has taken on a lot of issues.

So this is Ben’s jacket: #OccupyHealthcare.  In this painting the ivory tower is personified.  Three careers stand tall before us.  A primary care doctor, a surgeon and an academic loom large within the composition.  They barely see the little people arrayed before them.  Their eyes seem disconnected and distracted; the surgeon cannot even stop from checking her smartphone in this moment.  Her eyes dart to the side as the small crowd forms beneath her.

The crowd consists of patients and providers waving banners that say things like: “ #Occupy Healthcare” and “Join Us!” with a twitter bird emblazoned on the sign.  All those in the crowd face the monolithic ones and we cannot see their faces.  But even with this limited ability to read intent, the viewer can see that is crowd is not angry.  This is a crowd of collaboration.  These arms are raised in welcome, not attack.  They are occupying the space.  They may be small and slight but they are many.  If you think small and slight cannot wreak havoc on old forms, ask any homeowner their feelings on termites.

Nature is designed in such a way that which is old and dead will be recycled into something new.  This can happen gradually through rot, mold and small creatures working diligently to deconstruct.  Or destruction can come in a wildfire of change, but even then nothing is wasted.  Cinders make great fertilizer and they are a key element in cinder blocks.

I am so happy Ben joined the gallery.  He is one of 148 Walkers that scurry to and fro from medical conference to medical conference.   At HDI in Washington DC on June 5-6, 2012, quite a few people were amazed how many jackets were at the conference.  One attendee said, “I used to only see a couple of these jacket paintings at a conference, and now they are everywhere I look.”

You see we paint on business jackets for a reason, they a type of Trojan horse.  A walker is invited to a conference.  He or she looks normal from the front.  They are allowed in and only then does it become apparent that the patient is in the room and the dialog must now change.

The Walking Gallery is a very simple concept; we are occupying Healthcare.

Lives not Livelihoods in Meaningful Use

If I were to die tomorrow and all that was left of me was my right hand, you would know two very important things about me.  You would know that I am a painter and I was a writer.  No matter how often I scrub my fingers the patina of paint discolors my cuticles and the cracks in my skin.  And though I left a childhood of writing lines 30 years behind me, I still have the finger callus of a longhand writer. 

If I were to die tomorrow, and all that was left of me were these words that I write.  You would know I learned how to type on a typewriter.  The two spaces behind each line is a tell.  I learned to type in an age where uniformly sized keys created unevenly spaced letters.  Hence two spaces were necessary to signify the end of a sentence.

I do not need to do that anymore.

Yet, I persist.  I have tried and tried to change my ways and press the bar only once, but I fail.  I have fallen into the siren sway of habit.  My muscle memory runs ahead of my mind and leaves my thoughts to rest two spaces behind the last.

Today while working on my public comments for Meaningful Use Stage 2, I saw once again that the American Hospital Association has decided to promote livelihoods over life itself.  They do not support our rallying cry that patient data access must be part of Meaningful Use and it must be timely.  In stage one Meaningful Use the rule called for access within 4 days of request.  As we head toward defining stage 2 many patient advocates are asking for data access within 24 hours or real-time.  The AHA (American Hospital Association) is asking us to go back in time and accept data access 30 days after a care episode as was codified under HIPAA.

AHA is stuck two spaces behind us. 

 This organization is living in a world of 30 years ago, consisting of typed reports and hands that are marked with the callus of a scribe.

Their very insistence of a return to the rules of yesteryear demonstrates the dangerous path of habit itself.  Once you begin to design systems without patient inclusion it becomes habit to leave us out.   Habit tends to settle like concrete, pliable only in it early stages and hard as rock as it cures.  Like concrete, habit crumbles in time, but often it takes decades or jackhammers to remove it.

I urge those who are in a position to create the final rule of Stage 2 Meaningful Use to be brave and leap beyond a past care model that left patients out and embrace a new tomorrow of patient inclusion.

I urge everyone to publicly comment before May 7, 2012.  Please send a message strong and clear that we are all patients in the end and we deserve to see our own information.  Do it for the ones who died due to simple errors hidden within closed records or comment for the children yet to come who will live in a different tomorrow.  They will not comprehend an education system that creates a writer’s callus. They will expect timely information.

You are setting the concrete upon which these children shall tread.  You decide.  Shall they lead the world or shall they walk two steps behind? 

Long Stories: The Story Of Meaningful Use and Why the patient voice matters..

View more presentations from Regina Holliday

Never Enough

A few years ago, I saw a vey funny episode of Dexter's Laboratory.  It was entitled Star Check Unconventional and the episode took place in world where a Star Trek-style science fiction convention meets a Barbie-style convention. This episode introduces the important concept of NRFB.  If you are one of my science fiction, Doctor Who-loving, uber tech geek friends, you will know exactly what that means.  I will explain the phenomena and abbreviation to the rest of you. It refers to the pinnacle of any collector: Never Removed From Box.  Oh, the exquisite joy of owning something no one has touched since manufacture! 

There is only one moment that is better: When you finally open the box.

I was the perfect audience for this episode, as I am a huge Trek fan and also am a big fan of Barbie.  When people gave me Barbie dolls as gifts as an adult, I kept these collectibles in their boxes for years.  I had a pretty big stash in the closet that I would lovingly caress each plastic and chipboard exterior.  In addition to my Barbie collection, my husband Fred had a whole shelf of Stephen King books that no one was allowed to read for fear of cracking their spines.

When my eldest son Freddie was four, he mostly stayed away from his father's "scary" books; but one day he found my Barbie stash.  At first he was merely perplexed as to why I would keep perfectly good toys in boxes for years in a closet.  Next, he reasoned that I must have been waiting for him to get old enough so we could play with them together.  I began explaining that they were special, collector’s items.  I even had Olympic gymnast Barbie 1996 and very special Ballerina Barbie with the palest skin and gown.  These dolls were too important to play with.

Freddie was outraged said,  "You play with toys! Let's open all of them now!" For a moment of indecision I held back.  Then we ripped into the boxes and began the Barbie Liberation Movement. Oh, what a glorious day!  I waited so long to smell the plastic of their bodies and run small brushes through their hair.  They were so perfect!   We played with those Barbie’s for hours, then weeks. I returned to one of the greatest joys of my childhood and I took my little boy with me on the journey. 

The thing that is better than NRFB, is holding your greatest happiness in your arms to feel it and caress it.  And this memory is linked to another in my mind: the birth of our son Freddie.

I had carried him inside me for 36 weeks.  I held him so long without being able to touch him.  I loved him and fantasized about his beauty for months.  And finally at 36 weeks, I went into labor.  After five hours of natural childbirth I delivered him.  He was so beautiful.  His new skin amazed me.  He was fresh from the package.  As I rejoiced at his little body in my arms, I traced my fingertip along the peach fuzz of hair across his brow.  Then his temperature began to plummet and they took him away.  About one hour and 45 minutes after I had Freddie, I was sitting at his side in the NICU. 

He was in big plastic box attached to wires.

And I could only touch his little hand.  I could feel a little bit of his perfect skin.  And I would watch as they would stab his little feet again and again to take a large enough daily blood sample.  I felt a kind of impotent rage as his little mouth would curl in pain and would see a silent scream in the moment before he took a breath and his cries would fill the room.  And after seven days in the NICU, we could take him home.  He was still underweight and his bilirubin was high, but we could take him home. 

I would rejoice and hold him in my arms and trace the peach fuzz upon his brow.

And all of this I thought of when I painted Mary Ellen's Jacket: Never Enough.

In 2001, Mary Ellen Mannix was a happily married mother of three when she found out that she was expecting her fourth child James.  At 20 weeks James was diagnosed with a possible coarctation of the aorta.  The doctors were not overly concerned because it seemed as though James did not have a severe case of this hourglass shaped malformation of the traditionally long-tube shaped structure.

Mary Ellen did as much research as she was able to do.  This was 2001, so like many of their friends they did not own a home computer.  She utilized a network of friends to find out their recommendations for the best hospital for delivery.  Mary Ellen and her husband were assured time and time again, "We are not talking open heart surgery here. Your child does not have a life threatening heart defect IF he even has one at all. This is very minor."

 James was born on October 2^nd, 2001.  He was a large baby.  At birth, he had a loud raspy cry. The delivery team took James away for an ECHO and would not let Mary Ellen’s husband Mike attend the procedure.

After three hours with no communication as to the results of the examination or being told the whereabouts of their son, Mary Ellen and her husband began looking for him.  Their current hospital had already arranged transport for James to be admitted to another hospital where a world-renown surgeon that specialized in this disorder could treat him.  Mary Ellen was upset.  The parents had not been informed about nor consented to transfer.

Mary Ellen expressed her desire to keep her son near her.  They spoke to a Pediatric Cardiologist in the hallway who assured them, “Oh he is fine. James looks great. We just figure they can monitor him down there the next couple of days."  Mary Ellen again expressed her concerns and desire that baby James stay near her.  The cardiologist responded, “If he were my baby, I would want him there. Just in case something happens."

Mary Ellen felt disempowered, and pressed into a treatment path not of her choosing.

James was eating and doing great, and he continued to do so for the next 36 hours.  He was a beautiful baby with such lovely skin, so loved by his parents.  There wasn’t an emergency situation.  When the hospital asked for consent to “correct the coarct,” Mary Ellen and Mike were told a catheterization procedure - like a balloon angioplasty would be preformed upon James.  Or perhaps, medication could be prescribed instead of surgery. They were assured that procedure was a minor one: "We are not talking open heart surgery here."

The next day they took him.

At this point Mary Ellen and her husband learned nothing more about what happened to their son until after they hired a lawyer

The staff at the new facility performed open-heart surgery with deep hypothermic circulatory arrest.  They used a broken ventilator during surgery.  After surgery the family was not allowed to be with James, as it would “excite him too much.  The family was briefly allowed to see him at 4:00pm.  A nurse said, "When you come back you will be able to feed him."  As Marry Ellen was still adjusting to the knowledge of all that they had done said, "That is okay. I can wait. Don't rush him. So long as he is ok, I can wait."

When Mary Ellen and Mike left the room, the unit staff electively extubated James.  His CO2 went up and his oxygen saturation went down.  They took blood gas after blood gas every 15 minutes for the next 3 ½ hours.  Then they dosed this little baby with a huge dose of morphine. 

Things went from bad to worse.  Staff members who had left for dinner were paged back.  They did CPR.  They had to open his chest again and gave James several epinephrine shots straight into his heart.  A doctor who a few moments before had been enjoying his dinner, was doing cardiac massage to James walnut sized heart.  

Then they put him on ECMO.  This is used in intensive care medicine and is an extracorporeal technique of providing both cardiac and respiratory support oxygen. This is used with patients whose lungs and heart have been severely damaged and is considered a treatment of last resort. James was back on a ventilator after having been taken off one too quickly.   Then he was placed on it too long. He developed ventilator-associated pneumothorax (preventable).  He was brain damaged.

As Mary Ellen’s lawyer phrased it, "It was a parade of horrible." Things kept getting worse: more medication errors, another surgery without consent, hospital acquired infections and sepsis. The evening of Oct11th, James was starting to look better. He was taken off the ECMO. The staff finally asked for breast-milk for James.  He looked so beautiful.

Mary Ellen fell asleep while expressing, and was woken on the morning of October 12^th by two Doctors informing her that James had been take into emergency surgery.

Later that morning, Mary Ellen saw her precious James.   He was black blue and purple all over. He skin was taunt and swollen to the size of a nine month old. His one hand was completely black. He had an open wound from the surgery on his right side.

She knew he was gone.

They put him back on ECMO.  It was a Friday.  The surgeon was not to be found. Mary Ellen and Mike kept asking to talk to him.  Eventually they left the CICU and in the hallway we tracked him down. 

Mary Ellen’s husband Mike asked him, "So you will oversee James's care this weekend?"

He said "No."

Mike said, "Then who will be in charge?"

The Doctor responded with, "I don’t know."

Mike said, "Really, we just want to know who will oversee our son's care this weekend."

The Doctor answered with, "What difference does knowing that make now?"

Mary Ellen and Michael turned the machines off the next morning – Saturday October 12th.  James had lived for eleven days.  Marry Ellen and Mike gathered their things in silence.  No social workers, no clergy, no doctor or nurse would help them in their darkest grief.  Just silence.

In the weeks and months that passed, more silence.  No one would tell them what had happened.  No one would tell them anything, until they had a lawyer and went to court.  The Mannix family was offered 750,000 dollars to settle the case. To get that sum, they must agree to silence.  There was a gag rule attached to the settlement.  They must never speak of the case again.

They turned down the settlement.

That would never be enough.  Mary Ellen knew she must tale this tale, for her family and for everyone else who was suffering.  She must tell it for all the other families who had the same story, but to due financial reasons accepted silence in exchange for needed recompense.  She would write a book and spread the tale. And that would not be enough.  She would found a non-profit called James’s Project in order to get books such as hers and the work’s of other advocate patients in the hands of medical students, doctors and other families.  And that still would not be enough. She would walk in the Walking Gallery with a picture of her baby on her back.

It would never be enough, never enough.  Because I know where Mary Ellen’s mind goes at night.  I know the memories begin to unspool.  The moments begin in utter normality of breakfast cereals and children’s cartoons and it goes so very wrong.  And each night we relive the silence and the poor decisions, and fill our minds with might have-been.  It will never be enough because James had been NRFB.  He had been perfect and loved and had such beautiful skin. 

And they turned him black, blue and purple.  They destroyed James and broke the hearts of his family members.  And they did it in silence.

No, it will never be enough. 

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)

This is how a movement starts: Becca's Jacket

I am so excited to repost this entry as a guest post on my blog. This is Becca Price's Blog:

My jacket, my story for #TheWalkingGallery

from May 4th, 2011.  It is my honor to have such an amazing woman and artist as part of The Walking Gallery

When Regina Holliday puts out a request for painted jackets for The Walking Gallery, the response is obvious: of course! A couple of years ago, when Twitter lists were just getting “hot,” Regina and I joked we should start a list of “patient safety advocate artists from Oklahoma” – a short list which would contain us both and that’s about it. Because of this shared odd convergence of experience and interests, I’ve always felt an unique closeness to Regina, whom I’ve never met other than virtually. Take the time to read her blog and you will become acquainted with one of the most energetic and gutsy people I know.

The image I painted is based on the website Dead by Mistake, which estimates 200,000 people die due to preventable medical errors in American hospitals every year. Statistically, there is a broad range of estimates of how many preventable deaths occur in hospitals each year, and there is plenty of controversy over how to define “preventable” and “error.” However, the lowest estimate I saw was 32,000 -- even that figure should be enough to drive change -- and there is no controversy over how to define “death.”

But Regina’s vision is to put the patient at the center of our healthcare, through the sharing of our individual stories. With that in mind, just one of the patient stories we can see on the Dead by Mistake website should be enough to drive our determination to improve healthcare. The image on my jacket is based on the imagery of Dias de los Muertos, when the spirits of our deceased loved ones return to visit us (and no, it’s NOT “Mexican Halloween”). My hope is the deceased family and friends of all who view her will return to us, to empower us to keep working toward change and improved patient safety.

Thanks to Regina for the opportunity to participate in The Walking Gallery.

Becca Price

@Tully3000

Crossing the Quality Chasm

When I talk about shared decision-making and patient centered care, I often talk about the differences in the way doctors and plumbers speak about their work.  Especially after reading Atul Gawande’s article "Letting Go", I felt empowered to say, ”Suppose your basement was flooded and your pipes were bursting.  The plumber would not forgo or delay telling you the truth about the extent of damage due to concerns about your emotional distress.  He would not suggest just pumping in chlorine to 'medicate the pain' and ignore searching for the cause of the flooding.   He would consider you educated enough to understand the potential treatment paths.  And he would let you know all your options and give you a price estimate before beginning repair.”

So imagine my joy today at Health Affairs’ Briefing: Still Crossing the Quality Chasm, when the first speaker, Carolyn M. Clancy, Director of the Agency for Healthcare Research and Quality presented using a quote about plumbing.   ”The society which scorns excellence in plumbing as a humble activity and tolerates shoddiness in philosophy because it is an exalted activity will have neither good plumbing nor good philosophy: neither its pipes nor its theories will hold water.”

John W. Gardner

And that quote became the foundation for the painting I created today.

This morning, I dressed in my nicest business dress and carried my French-box easel in one hand and my brief case filled with paint in the other.  I climbed the carpeted steps of the Capitol Hilton Hotel and stood in line with those that came at 8:30 am to listen to sixteen speaker views on the quality chasm in medicine.  They checked me in, and I grabbed my packet.  I rapidly walked to the back of the room and began to set up my easel.  I set up next to the cameraman, as I too had come to create a picture.  Several nice Health Affairs staffers looked at me quizzically.  A couple of them even came over to talk with me.  But no one stopped me from painting, and that was good. 

I was doing something a tad subversive.  I had not been invited.  If it hadn’t been for Trisha Torrey and a blog post she had written, I would have had no idea this meeting was taking place.  

On March 31,  Trisha Torry  wrote a blog piece “Time to Recognize Us Not So Invisible Patients.”  She had been invited to attend a briefing by Health Affairs called “Still Crossing the Quality Chasm: Update on the Progress in Improving the Quality of Health Care.”  She was rather astounded when she read the speakers list.  As Trisha phrased it “VERY impressive list of speakers.  Except.... No patients.  Not one individual who can speak for patients from a patient's point of view.”   Trisha‘s  blog is well-read in the patient community.  She had hoped that with her post Health Affairs would change their lineup and include a patient speaker.  She also was hoping local DC patient advocates could attend if we were only made aware of the proceedings.

Trisha continued to blog on the topic writing:

Health Affairs Briefing: Patients Becoming Less Invisible.

Here she stated: “Eventually I received an email from Sue Ducat, representing Health Affairs, telling me that one more 'expert' had been added to the panel - someone who has proved her chops in patient safety.”   That speaker was Diane C. Pinakiewicz, President of National Patient Safety Foundation.  In addition to this speaker there would be a patient in the audience; Ilene Corina, President of PULSE of NY and long time participant of the National Patient Safety Foundation Patient and Family Advisory Council also presently a member of the NPSF Board of Governors.  

And in the back of the room, I would paint.

I was very happy that Susan Dentzer, Editor-in-Chief of Health Affairs, mentioned early on that the Twitter hash tag was #HA_Quality.  A nice twitter commentary ensued, which allowed far more patients to participate.  So between brush strokes I would periodically tweet and enjoy the give and take of social media.  At one point Christopher Fleming, Social Media Manager at Health Affairs came up to me and asked questions about my work.  He would be the only Health Affairs staffer who gave me a card.  I told him I would send him my blog as soon as it was completed and thanked him for his frequent tweeting.

I quickly painted the cliffs, the chasm and the sky.  Soon we began to hear about plumbing.  So pipe works began to emerge on the left side of the painting.    This was the patient side.  A number of patients upheld the pipe works and tried to curtail its uncontrolled gushing.  An elderly figure dangles from the pipe; he represents the 1/3 of the senior population that gets to access care. A child dangles from the man’s foot.  The child is holding a bucket under the gushing spout.  That bucket is labeled PHR.  She is trying to take some information out of the data stream as billing codes and data gush into the valley bellow.  Above him a child valiantly tries to turn the spout; she represents the 47% of children who can access care. 

Throughout the pipe works are areas of disruption that point to systematic failure as data and services drain away from their needed destinations.  Safety Net Hospitals, Ambulatory Care Settings, and medical education are suffering from a lack of clear communication between providers and patients.

In the lower left area ACO is depicted as a mythical beast, for that is how a panel speaker defined it, as she begged the moderator to forgo asking her to comment on Accountable Care Organizations.    As I tweeted this description on Twitter, @faisal_q or Faisal Qureshi responded, “@ReginaHolliday Mythical? hmm... the monster is real and it’s right in front of us.”  So I painted an ACO unicorn because our pop-culture often depicts these beasts in glitter and rainbows.  And they can be positive--Kaiser Permanente is an example of a conceptual ACO.    Elizabeth A. McGlynn, Director of the Center for Effectiveness and Safety Research at Kaiser Permanente gave a great description of this type of care model.  She explained that while calling to make one appointment she was encouraged to schedule her mammogram and other needed tests.  She described in glowing terms the power and patient-centered nature of accountable care at KP.  But unicorns can be tricky.  They are wild and complex and cannot be tamed by man.  People often forget they tend to gore to death those humans who are well-versed in the ways of the world. 

Across the chasm on the right side stands an executive juggling; He juggles the balls of trust, improvement and reporting as they circle in the air leading to RPI (robust process improvement).  I wondered as I learned about this new acronym if people considered that failure to follow these simple measures, for example hand hygiene and better hand-off communication, could lead to that much sadder acronym RIP.

Above the juggler, providers hold up a philosophy scroll.  A doctor proudly stands in the center.  To the right, a nurse or tech faces away holding up an end of the parchment.  On the left side, an informatics professional types away while balancing the sheet on her head.  The plumbing from the right side of the panel becomes an old-fashioned dip style pen.  And these words are written in cursive: “I wrote a white paper.  I wrote a white paper…” These words a cascade down the page like some academic Jack Torrance.   Again and again, as the speakers spoke I would hear about the papers they had written.  These papers seemed to be the passport to speak in such an august setting.  And I sadly thought of all the patients who would never write a white paper, but had such important things to say.

We had a break at 10:45, and I saw via email that Ilene was trying to get a question asked during Q&A.  I too had raised my hand for a question, but they had been taking few from the audience.  After the break and during the Q&A of the next session, the moderator mentioned that she would like for Ilene to get a chance to speak and ask her question.  Ilene asked what ways were the panel members involving patients directly in bridging the care chasm.  In response, one panelist mentioned that they were now involving patients in all their hospital panels.  This was the first time patients were referred to as a team member and not as a participant who needed to have better compliance.

 After 12:20, the session was running over, but the sun rose on this painting.  At this point the panel “Where Do We Go From Here? “ began.  I wondered if they had any idea about the Buffy song of the same title.  That is the song we used to dedicate the mural 73 Cents.   That is the song I am singing on the NPR broadcast of November 9, 2009.   My answer to the question was simple.  Patients and caregivers must have access to their own information and must spread the word about the need to treat patients with dignity and respect using every form of social media.

Soon Peter J. Provonost from John Hopkins University began to speak. Finally, we saw a picture of a patient. He showed the picture of a baby.   Her smiling face reminded me of the Teletubbies.  As any parent who once had an 18 month old can tell you, babies are just mesmerized by the Teletubbies and the golden sun with a baby’s face.  Oh, how it giggles and they giggle and the room fills with joy.  So there is a painting of the sun in this piece.  And that sun is also a clock that marks the time that the smiling face of Josie King stared out at us twelve feet tall upon the screen.

I was sad and angry, because by this point so many people had left.  Josie’s face should have been the first slide.  This panel should have been the first panel.  That would have centered this day and this event.   And that speaker that Trisha fought so hard to have included should not have been the last to speak.  Finally after the room cleared, I was the last to leave the hall as the hotel staff cleaned the room of the remains of breakfast.   


Patients had been left for the end, and it seemed like an afterthought.

"Patient Centered Care" at IHI

“Patient Centered Care” as shown above is in progress on the 5^th of December, 2010 at IHI Conference in Orlando, Florida.

I paint about health data. I paint about patient stories and better healthcare practices. I paint about these concepts on public walls by city streets or on the backs of business jackets of healthcare advocates as they attend medical conferences. And sometimes I paint on canvases in the middle of a conference. When I paint onsite, I listen carefully to that which is said and incorporate the spoken meme as well as the twitter feed into the painting.

This painting is “Patient Centered Care” and I painted this at IHI (Institute for Healthcare Improvement) during the Patient Activist Summit and during two mini sessions on Health IT, Meaningful Use and Patient Data. If you look closely at this painting you see the background is the deep purple outline of the IHI logo. As the patient summit began the power point display was one slide. That slide was the IHI Logo. It loomed large above us as each activist introduced himself or herself. There were 50 or so activists and they were supposed to introduce themselves with a Twitter intro, keep it short only 140 characters. Not many were on Twitter so perhaps they misunderstood as they spoke too long during introductions. Perhaps they understood perfectly well, but after being in situations where no one listened while they or their loved ones where medically harmed, they were desperate for the chance to talk. So the “I” in the painting began to radiate circular waves of communication like a radio tower set to transmit. So we spoke, some tweeted and I painted.

I stepped back and listened to the patients and clinicians in the room who were willing to grasp hands and support the changing world of healthcare. So within the painting stand two beings. One is male and one is female and they are golden and seem almost holy and they clasp arms to support the world above them. On the right side of the golden female figure, a doctor stands. He is serene. His hand is placed under the golden women’s arm supporting her and joining in her effort. To the left, a young boy supports the arm of the golden male figure. In his other hand he holds an I-pad as this is the way the child communicates within his world. Both the boy and the doctor are people of color. Their inclusion is viewed as instrumental in creating balance within healthcare. Though they are on opposites sides of the canvas, they are the same person at different stages in one life.

To the far left, a suffering cancer patient leans on the shoulder of the golden male figure. Her gown back is gaping, but she is far beyond caring about this embarrassment, as she is deep within the final stages of her disease. She is leaning on the system for support and has no more energy to give. In front of her stands a child. This girl holds a children’s book about Phineas Gage. Do you know about Phineas Gage? He was a man who lived in the nineteenth century and had a metal rod driven through his brain. His story- the patient story- greatly affected the thinking of the times in regards to personality and the lobes of the brain. The child knows this story, she has read it in a children’s book. She knows about the power of stories.

The world in the center of the painting is the dot of the “I.” It is forms a yin and yang symbol within IHI where we are struggling to find balance. On the left side of the world North America is represented because that is where IHI began. An eye looks upon you from the continent. It is looking at you, demanding you use vision in creating better care. To the right side is a clock. The numerals are in Latin and the choice to depict time in ancient increments represents the current lack of clear communication and a reliance on old antiquated systems within many medical institutions. Both the hour hand and minute hand point to three ‘o’clock as we try to support the “triple-aim.” The clock itself represents an oft-heard clarion call of the activist: the time for change is now.

In the center of the world clock resides a call bell. Bart Windrum brought this bell so each activist could ring it after recounting his or her tale. It reminds us of to the old call bells patients used before modern technology introduced the silent, efficient and sometimes ignored call button. This bell is red and it represents warning. It is also a Liberty Bell and emblazoned upon it are the words “Information Liberty.” Above and connected to the bell are the scales of justice and they too point to the desperate need for balance between the provider and the patient.

Below the world is a table set to explain why clinicians need to consider EMR adoption. This element is based on the talk given by Ann Lefebvre, called “Integrating Health IT into a Statewide QI Program.” She mentioned that they invite their clinicians to discuss systems and EMR’s four times a year. So the table is set with plates saying things like EMR and HIT. The two candelabras at the table light the surroundings but they also contain the symbols of money and percentages. Often these kinds of talks can be more about incentives and dry data bytes and less about the actual patient outcomes.

Below the table is the Twitter feed for the conference and that pours into the patient centered medical home. The roof of this house is the IHI triple aim: population health, experience of care and per capita cost. The Cub Scout character connection of know, commit and practice surrounds it. I threw that in as I am a Den Leader and know that change only happens when you promise to do your best and you keep your promise. At the door of the home stands a very small patient. Patient centered care was discussed in an in depth fashion by Laura Adams, J. Robson and Jaquelyn S. Hunt during “Whose care is it anyway…and Can Health IT Help.” The patient is holding up a ruler and trying very hard to be centered, but if you look closely, you see the center of the painting and the home is slightly off kilter. This lack of center exists in the painting because that is the current experience in US health care. But there is hope. Due to the work of the folks from IHI and Patient Activists and Clinicians we have hope of attaining balance, and making this vision of the future a reality.

The finished piece can be viewed here. I hope you get a chance to look at it. This photo was taken right before I addressed the room about our family story and the meaning of the painting. I was not on the agenda that day, but the speakers were so gracious as to ask me to present. I told them about the very personal reason I advocate and I explained the painting.

The entire room of attendee's to the session "Who's Care is it any way...." gathered around the painting. You will see me in the middle, slightly left of center. I suppose that is a good place to be as we strive toward patient centered care.

Caregiving

I am very honored to post a guest post on this blog. This post was written by Alisa Gilbert.

What A Caregiver Taught Me About Human Connection

This past summer, my best friend lost her grandmother to old age. She died a few days before her ninety-third birthday. She had suffered a serious stroke the winter before, and had been shifted from her nursing home to hospice care later that spring.

A team of caregivers rotated through their shifts to care for her, to change her bedding and diapers, to feed her and make her as comfortable as possible, in what I used to think of as a simple, perhaps distant activity. Now I understand that much more can come of proper care-giving. Towards the end, after her grandmother had suffered a series of minor strokes, my friend described how they used a miniature vacuum to clear mucus from her mouth. I had never understood the emotional and physical toll that hospice care can have upon everyone involved—the staff, the patient, and the family members—until I had to comfort my friend through that tough half of the year.

Each day she returned from visiting her grandmother, I heard stories of one specific caregiver, Mary, who seemed to have taken her job and utterly transformed it into a lifelong calling. My friend's family had dealt with other caregivers that seemed less interested, a pair of which had quit in the final days because they decided they'd be better off looking for more work, so to hear the talk of Mary seemed encouraging despite the sadness of the situation.

One day that final month my friend asked me to visit her grandmother with her, so I steeled my nerves and went along. Besides I wanted to meet Mary. When we entered the room, we were greeted by a short, middle-aged woman with brown hair and tears in her eyes. She immediately hugged my friend, and then hugged me, after which I was introduced. Mary gave us an update on the day, all of its tiny particulars, and then my friend sat by her grandmother.

Mary gave us a moment alone, and when she returned, my friend left to use the restroom, so I was alone with Mary and my friend's sleeping grandmother. Mary made small talk with me for several minutes, and then I watched as she quietly reached over to my friend's grandmother and with a cloth gently wiped at the corner of her mouth.

I understand that this is not necessarily a unique gesture, but it still struck me for the power I felt in the room. I will never forget the way Mary sort of filled the room with her emotions that day. She struck me as the kind of person who had a deep, deep respect for both her patients and the family members of her patients. I'm not sure I have ever witnessed in someone a sympathy for others as strong as hers. In a way, her example, the way she acted in that little hospice room made me rethink how I consider those who are sick and those who take care of them, and the warm connections that can exist between them.

By-line:

This guest post is contributed by Alisa Gilbert, who writes on the topics of bachelors degree. She welcomes your comments at her email Id: alisagilbert599@gmail.com.