Painting Your Words

On April 24-26, I was honored to attend the Fifth Annual South Carolina Patient Safety Symposium.  I flew in a bit early, so I was excited to find out I had time to walk around the neighborhood around the conference hotel.  I was staying at the Columbia Marriot, so before going on my adventure I asked the concierge if she recommended any local destinations.  She told me if I drove 15-20 minutes I could go to a nice shopping center.  I replied, “I am walking (as my friend Ted Eytan often encourages).”  She looked at me and said, “Well, there is not much around here.”  Then reaching under the counter she said, “You might like this place.”  She handed me a brochure for the Mast General Store.

Then I began my adventure.  The area surrounding the hotel was an aesthetic gem of texture and history.  I past some shops that were shuttered with soap covered windows.  But time and time again, I peered into shops that looked as though they began their life in the 1960’s and had not closed or renovated in the past 50 years.  I walked by the most dapper men’s suit shops and saw jackets that would look so fine on the backs of The Walking Gallery. I counted three wig shops that my friend Tiffany would love. 

I stepped briefly in the Mast general store and it presented like a Cracker Barrel if it opened in Downtown Annapolis, MD.  It was very clean and very well displayed and very touristy.  I did not stay long.  Nearby there were several independent art galleries and a small independent art store.  I was so happy.

Next, I found a wonderful dress shop.  It is called Coral’s. In that shop there was the most helpful staff that showed me glittering dresses of every hue under the sun.  Then they listened to the story of Fred Holliday and learned the reason why I speak for patients. I bought a new dress and then headed out the door to the local beauty shop for a little “maintenance.”

Whist I was in the beauty parlor, I thought of Surgeon General Regina Benjamin as I spoke to the stylist about healthcare and HIT throughout the entire appointment.  When the stylist was helping other clients, I listened to the local radio station play six advertisements/announcements relating to health in South Carolina. 

Then it was time for dinner and it was like old home week!  I saw Christine Bechtel VP of the National Partnership for Women and Families, Jennifer Sweeny also of the National Partnership, Maureen Bisognano President and CEO of IHI, Rick Foster Senior VP of Quality and Safety at the SCHA (South Carolina Hospital Association) and Helen Haskell Founder and President of Mother’s Against Medical Error.

As we sat down for dinner, I noticed a large number of people went to sit at Atul Gawande’s table and Helen’s table, I went over to sit next to Mary Stargel the Administrative Coordinator of SCHA and Cheryl J. Dye a professor at Clemson University.  I was so excited to meet Mary as I have exchanged quite a few emails with her over these past many months.  I learned that not only was Mary handling details of the conference she is also a young mother and enrolled in college course work. Cheryl made a great dinner companion as well and spoke of her work at the Institute for Engaged Aging. It was a delightful evening.  I said thanks to our hosts and headed back to the hotel.

The next day was the first conference day and I painted “Silos.”

In this painting the silos that separate providers, patients and professors are breached.  Hands strain far above the green grass as each person tries to connect with each other.  To the far left is a cowboy.  He is a reference to Atul Gawande’s speech focusing on safe surgeries.  In medicine certain doctors are called “cowboys” when they do not function as team players.  This is alluding to the wild-west where a man is a law unto himself. But Atul recently interviewed a real cowboy and let us know that a working cowboy is more pit crew than lone gun.  He depends on the work of a team to save the cattle in the herd, and even the lowliest member of the team can call out an alarm when things are going wrong.      

The next figure is a nurse holding a child.  Here is the voice most often missing in the conference speaking agenda.  She is trying to balance so much and rarely has someone to speak for her at events like this one.

The next figure is Atul Gawande himself.  His is straining to create a connection between the child and a young mother.  Upon his chest he has a check mark representing the surgery checklist.  During his presentation he showed a great clip from ER showing how very important it is to have a surgery check list. Atul’s goal is to drop surgical death rate below 1%.  He mentioned in the world-wide launch of the surgery checklist the biggest pushback has come from physicians.

Between the nurse and Dr. Gawande is the community.  During the second keynote Eric Coleman, MD said that the majority of healthcare occurs in the community, not in the clinical environment.  If we want great changes in health we must begin at a community level. 

Holding Atul’s other hand is a pregnant woman wearing a shirt that says “39weeks.”  This image referred to a fun video that started our conference day.  In the video staff and children showed the importance of triple aim concepts like hand washing, the surgery check list and postponing elective cesareans.  They tied each film vignette together with an Olympic theme.

Holding hand’s with our pregnant mother is a patient.  The patient is holding out a balanced level.  This is a direct reference to Eric Coleman’s remark that we must meet patients at their level.  This was closely followed by a demand that should be a rallying cry for the e-patient movement.  “We must retire the word non-compliant.”  It is an excuse to give up on a patient, and whenever this word is used it reflects badly on the provider who uses it.

To the patient’s left is Cheryl. J. Dye holding a fishing pole and a FedEx box. The FedEx box is a reference to Eric Coleman’s remark about the word patient at it is used at medical conferences, “Could we just replace the word patient with the word FedEx package and have the same conversation?  I think yes.”  Cheryl holds a fishing pole to reference the old adage that we should not just give the starving man a fish to eat, but instead we must teach him how to fish.  This adage applies to caregivers and patients alike, 42 million caregivers provide 80% of the care for chronically ill.  We must be given the tools and support to do our jobs and be part of the care team.

To Cheryl’s left is Ethel from Maureen Bisognano’s speech.  Ethel was a patient in a care facility who was wasting away after the death of her husband.  She was given more and more pain medications and medicine, but nothing stopped her failure to thrive.  Each day Ethel would make one request of her nurse.  She wanted a dog.  One day her nurse was near an animal rescue on her way to work.  She found a dog for Ethel. Ethel made a miraculous recovery in a matter of weeks.  She now plays the violin for the other residents instead of wanting to die. 

That is the story behind “Silos.”  Next it was time to move my easel to the Awards banquet luncheon. Helen Haskell would hand out Patient Safety Awards in the name of her son Lewis Blackman.  The South Carolina Philharmonic serenaded us with an amazing triumphant eulogy as we ate and I painted “The Fame of Hope.” 

In this painting, I place Lewis within a flame.  He is slightly older than the day he died from a medical error.  His face is brightly lit and turns from the viewer to the woman he holds in his arms.  A young African American woman with babe at breast looks with a worried glance into the eyes of the young man before her.  She and her child represent all the lives saved by the safety initiatives that have been enacted in the name of Lewis.

I painted this while crying for a Lewis I never met, as a friend from his childhood sang:

“I've heard it said

That people come into our lives for a reason

Bringing something we must learn

And we are led

To those who help us most to grow

If we let them

And we help them in return

Well, I don't know if I believe that's true

But I know I'm who I am today

Because I knew you...

Like a comet pulled from orbit

As it passes a sun

Like a stream that meets a boulder

Halfway through the wood
Who can say if I've benn changed for the better?
But because I knew you
I have been changed for good." 

“For Good” from the musical “Wicked.

We must all have hope of a change for good.  That flame of hope burns brightly and is fueled by those who died untimely deaths.

On April 26, I painted the final painting “Awards of Transparency.”

Here the background is filled with an endless expanse of circles.  They are Olympic circles, they are microbes, and they are the dots that represent each one of us.  Before these circles, a figure stands.  She is a medical provider clothed only in the awards of excellence.  She has embraced fully open and transparent care.  She accepts the patient and caregiver as team members and using every tool at her disposal to fight against infection and medical error.

This painting is a challenge.  Could you walk down the street wearing only the awards of excellence in patient safety?  If you did so would you be “clothed?”

I thank the team that brought me out to speak and paint in South Carolina.  I leave inspired by the life of Lewis and the courageous campaign of his mother.  I will do the best connect Silos, because though my arms may be short, my heart is large. I will do my utmost to always remember the awards of transparency are not silver and gold medals, but instead represented by lives lived.

The Patient Speakers: More Than a Fly in The Ointment

This week I spent hours on the phone with some of the great minds working within patient advocacy.  I asked them a series of 17 questions.   Designed by the wonderful staff at TMIT (Texas Medical Institute of Technology), these questions are helping to create the nuts and bolts of an online vetted registry of Patient Speakers at a regional, national and international level.

In the midst of this process, I received a twitter mention from @cascadia also known as Sherry Reynolds.  She lead me to an article on the Health Affairs blog entitled:

Patient Advocates: Flies In The Ointment Of Evidence-Based Care ...

by Jessie Gruman.  I must admit I was rather taken aback as I follow Jesse on Twitter and she has always supported patient empowerment in the past.  Jessie Gruman is the president and founder of the Center for Advancing Health.  Its mission statement is: "CFAH conducts research, communicates findings and advocates for policies that support everyone’s ability to benefit from advances in health science."

So, I was feeling rather stabbed in the back by being called a fly, and not just a fly, but also a dead one spoiling a perfectly good ointment.  Jessie had decided to use a slightly incendiary tone in order to promote debate.  For within her post discussing the testimony of patients before the Food and Drug Administration regarding the drug Avastin, was a critique of the power of the individual patient voice in relation to the combined power of evidence based medicine and governmental regulation.  

The patient voice can be a very powerful tool.  Some may see a patient speaker as a Mayfly: here today and gone tomorrow.  They may see us as the current tale of sorrow to be trotted upon the stage and then fall into obscurity.  Or perhaps we are viewed as the buzzing fly.  The persistent drone of patient advocate babble in the background at a meeting or at a conference, not important just a nuisance.  But what does it mean to be called a fly in the ointment?  Well, that’s Biblical.   That means we have disturbed and defiled the sacred anointed oil of medicine with a corpse.

And then I realized the true power Jesse’s title. 

For my fly is Fred, and Helen Haskell’s fly is Lewis, and May Ellen Mannix‘s fly is James, and Leslie Boyd's fly is Mike and we are disturbing the ointment.  We fly throughout the nation as patient speakers trying to change the status quo from a profit-driven model of care to a patient-centered model of care.   And we form a powerful group, that combined can support evidence based medicine by aggregating our shared stories.

But before you can use our knowledge, you must be able to find us.  And once you are able to find us we must be paid based upon our experience, depth knowledge and quality of our speech.

This is a concern Dave DeBronkart, other wise known as e-Patient Dave, has been writing about since January of 2009.  

The New Life of e-Patient Dave: A Call for a Patients Speakers Bureau

That is the reason we are creating a Patient Speakers Bureau.  The decision to create such a resource was made after a conversation I had with TMIT CEO Charles Denham, MD.  He asked me what did I see as a necessary next step in patient advocacy.  I told him we needed a patient speakers bureau.  In the patient advocacy community we have been talking about this need for a number of years.  My frustration at the lack of such a resource reached its pinnacle as I did dishes one Saturday.  I received a phone call from CMS (Centers for Medicaid/Medicare Services) asking which speakers would I recommend for an event in Texas.  I was in my kitchen in Washington, DC doing dishes as my five year old played with toys upon the floor, and I was the resource for CMS to find a speaker in Texas.

I thought there must be a better way.

I knew there were amazing people throughout the country who could speak on a host of patient advocacy topics and do so from the perspective of a patient.   I knew some of them.  And Dave De Bronkart knew some of them.  And Trisha Torrey knew some of them.  And Charles Denham knew some of them.  If you knew Dave, Trisha, Chuck or Me, you could ask us for our lists.  But that is very cumbersome and it feels like we are constantly re-inventing the wheel.  The beauty of an internet resource is that it advocates 24 hours a day.  And try as hard we can to keep going, human advocates must sleep.

Clean and Simple Web Design

I asked the advocates what websites did they use and what feature was the most important.  By far and wide, the advocates were focused on a using a good search function.  They also loved data filtering and aggregation.  They thought the ability to have communication within a community was important as well.

If you have a cause you must be on Twitter.

Which social media sites do patient advocates use?  They listed Facebook, Twitter, Linkedin, Meet-Up, Slideshare, Google +, Blogger, Wordpress and Posterous as important tools in the patient advocate toolbox.  Unlike many speaker bureaus, we are focusing on promoting the speaker with a well-rounded advocacy platform.  The speech is not an end unto itself, but instead a beginning.  Most of these speakers blog and have an astute command of social media that will allow the concepts of the conference echo for weeks, months and years on the world wide web.  Indeed, hiring a speaker from those listed on this portal can increase the digital footprint of a facility often faster than is possible with their in-house social media team.

“I am one person.”

One of the benefits I often attribute to hiring a patient speaker or inviting them to attend a meeting, is the benefit of the one-person view.  Often organizations become so multifaceted and constrained by the will of the group they become handicapped in their ability to present the individual patient view.  I found it very interesting that many of the advocates I interviewed present themselves across every social media platform as themselves, seamlessly blending professional and personal lives.  The only exception was Facebook .  In about half of those interviewed they said their Facebook usage was more for friends and family with far less professional messaging.

I do not look for them; they find me.

I asked the speakers if any of them had experience with other speaker bureaus.  Most responded that they had little experience with such sites.  Some had visited the Washington Speakers Bureau, NAMI, Alzheimer’s Association and SpeakerGram.  Most of the advocates had never used such sites and relied exclusively on word of mouth to promote their speaking advocacy.

If we build it, will they learn?

I asked about any thoughts the advocates had on continuing education on patient topics and in patient speaking.  I also asked in what format should we teach such topics.  The advocate pool said text based information was a must, interspersed short video and audio clips.  They also said a webinar element both live and archived was important.  The stressed the need for small group interaction and self-directed learning.

We also queried the groups about two planned courses: “A Crash Course in n Public Speaking” and “Narrowing your Speaker Topic.”   Those surveyed said they would be very interested in such courses and would like other concepts as well.  They were interested in learning about their audiences, understanding national patient advocacy strategy, and wanted to see great speeches.  Requests were made to learn how to better harness presentation tools like Power Point, Keynote, and Prezzi.   Most responders thought a best speeches segment and  “What not to do" presented in a short video format would be well received.

Now Playing in Theaters Near You

We wanted to get a gauge on which organizations were currently inviting patient speakers and found out that there was a wide range of venues.  Many of the advocates had spoken before RWJ Foundation, IHI, HIMSS, HealthCamp, and Health 2.0.  They had spoken before hospitals, Quality Care Organizations, Beacon Communities, Legislatures, White House Initiatives, Medical Insurers, Therapy Groups, Medical Schools, Data Users Groups, Social Service Agencies, Venders and Medical Conferences.

Patient speakers were beginning to show up at many venues.  And like any good fly on the wall they were listening for more opportunities to spread the word, often handing out piles of business cards at each engagement.  They also were utilizing their social media contacts to disseminate the information gathered at each venue to spread across the many silos of thought and culture.

From Honoraria to Invoicing for Oratory

As patient advocates are viewed as more than a one-off story, their stature changes to that of a professional patient speaker.  Within this transition, a speaker goes from speaking without recompense, to speaking while receiving honoraria, to a point that their participation has become so valuable that they are working under a speakers/lecturers contract.  Many speakers are doing their advocacy speaking with little business support; I asked our pool if they would be interested in guidance and help within the world of invoicing and contracts.  Almost uniformly the survey respondent requested help.   Many wished to know current appropriate pay scales, and asked questions about tax liability.  Suggestions on bookkeeping, fee negotiation and how to deal with delinquent payment were also very much on the mind of many of the advocates.

On Ratings and Rankings

We asked speakers to consider what would be the most important elements of their speaker profile.  Several of the speakers said they were not interested in a linear format of information, but said the key elements were: Name, 3 Topics, Contact now, Photo, testimonials/Patient Story, audio/video, slideshare, website/social media, location, Bio/short CV, honoraria/speaker fee, contact email/phone and a yelp-like ranking system populated by organizations that had hired said speakers.

The group cautioned against video only, as video is blocked at many facilities.  Likewise some recommended imbedding a Twitter feed vs. a hot button link to twitter as social media sites are blocked at many institutions.  They strongly encouraged the ability to rank speakers.  Some speakers encouraged designing this site to work on smart phone platforms as many of those researching speakers may have to use their personal devices to view blocked video.

Playing “Ring Around the Rosy” on the Landing Page

I asked those surveyed if we could feature speakers on the landing page how should that be done.  This question had very divided answers.  Some thought it should be completely random, some randomized with priority, some based on audience interest using analytics, and others thought it should be based on trending interest. 

"Speak what we feel, not what we ought to say" -William Shakespeare

I asked how should these speakers be marketed and how should we promote the site.  The advocates responded overwhelmingly that they would market themselves and the others in the portal using the tools of social media, during their own speeches and while networking at conferences.  They said they would like it if TMIT would help promote, but they would use their passion, connections and grass-roots activism to promote as well.

As far as creating awareness for the site itself, they recommended a press release, emailing all contacts, partner with consumer organizations and populate the site with an exclusive list of vetted speakers.  They also recommended using technology to create widgets to imbed on sites that support our mission, tag and link back through our blogs and enable a comments section.

What shall we name the Baby?

Like any good parent who has been thinking of the upcoming birth of their child, we have been concentrating in the design and care of our site.  But it also must have a name.  We could call it many names, but the most popular were along the lines of Patient Speakers, Patient Speakers Bureau, and The Patient Voice. 

It was great to talk with so many wonderful folks during this process.  And I would be very interested read your thoughts in the comment section.  I think we are on the brink of cultural shift on how we view patient participation within medical care on a local and national policy scale.  I am glad I met Chuck Denham and the other great folks at TMIT who are realizing a dream that many of us have been hoping for these past years.   I am glad this portal can be part of that, and am proud to be a speaker as well as the “painting fly” upon the wall.


Yes, Dave wrote his post for the need for this portal back on January 24th 2009.  And that same day my husband posted this:





I cannot help but wonder how different our lives would be if this portal was around five years ago instead.  Would Fred have seen birthdays four and five as well?  

A Wishing Well in Never, Neverland: Helen Haskell's Jacket

Memory is a funny thing.  It can be so clear one minute and misty the next.  And I can remember so many things of long ago.  And as I go back to these first memories the things around me grow ever larger as I grow ever smaller.  I remember a trip, to a place in the Ozarks, with water and the wishing wells.  I am throwing pennies in wells.  I remember my older brother grabbing my hand as I strayed too near the edge, and telling me not to drink the water, for he was six years of age and he could read the signs. 

I was only two.

Memory is a funny thing.  And things that may not seem important are flash frozen within my mind, like that 2-liter of Pepsi.  I see it bounce upon the clean linoleum floor of our mobile home.

We couldn’t believe it. It was 1978 and we had purchased our first 2-liter of Pepsi.  And it was just like in the commercials, these bottles bounced- they didn’t break like the glass bottles.  And as my little arms lifted the heavy 2-liter off the floor, I marveled at the weight of it.  So this is what two liters feels like.

I was only five.

I remember the night I found my favorite fairytale.  I was to sleep in the spare bedroom in My Aunt Hilda’s house.  My sister and I were spending the summer with our spinster Aunt Hilda and our widowed Aunt Minnie.  We were far away from our loving Mother and a Father who should not spend long summer days alone with little girls.  I found my Aunt’s collection of Junior Classic Fairytales published in the 1950’s beside her sewing box.  Between the green linen covers of one book I found a Grimm’s Fairytale: Mother Hulda.  I love this tale. 

It was a tale of a young girl who must spin all day for her lazy stepsister and stepmother.  She spins so much that she cuts her fingers on the spindle and covers it with blood.  Her stepmother commands her to wash the spindle in the well.  She tries to wash the spindle in the cool deep waters.   Accidentally, she dropped it into the depths.  She was filled with worry, but told her stepmother the fate of the spindle.  Her stepmother tells her to jump in after it. Filled with despair she jumps into the well.  Instead of splashing into the dark depths, she falls into another world.  It is a beautiful world with blue skies, green grass and flowers.  She walks a while and comes upon an oven full of bread.  The loaves call out, begging to be removed before they burn.  The girl removes the loaves.  She walks further and comes upon an apple tree.  The apples beg her pick them as they are ripe.  The girl picks the apples.  The girl walks even further and finds a cottage with and old woman inside named Mother Hulda.  She serves the old woman for weeks and weeks.  Mother Hulda rewards her for her labors by showering her with gold.  The girl returns to our world, and her stepsister is jealous so she jumps into the well.  She doesn’t save the bread and she doesn’t pick the apples.  She does a poor job of helping Mother Hulda.  In the end, Mother Hulda covers her in tar. 

I loved to read this story in my bedroom at Aunt Hilda’s.  It was unlike any other story I had ever read.

And I was only ten.

Memory is a funny thing.  I don’t remember when I first heard of Helen Haskell.  Oh, I can look back on an email thread and see her name for months before I knew her and what she represented.  I remember in the fall of 2009 Lisa Lindell telling me about Helen’s campaign to make sure all medical providers wear clearly marked nametags as to who they are and what is their job.  In the summer of 2010 when I was researching the painting “Give Us Our Dammed Data,” Helen gave me a list of potential authors for the piece.   She is an amazing resource and advocate in the patient safety community.  And as I got to know the story of Helen I got to know the story of Lewis: her wonderful son who died as a result of medical errors.

And he was only fifteen.

This is Helen Haskell’s Jacket:  “A Wishing Well in Never, Neverland.”

I wanted to finish this jacket in time for the Walking Gallery, but that did not come to pass.  I look at these jackets in my closet, and I pull them out as the vision of what should be depicted flows freely in my mind.  And when I see Helen’s jacket and read her son’s story, I feel like I am looking up from inside a deep well.

Have you ever wished so hard, then threw the coin within?  Have you ever prayed at night that this was just a dream?  Have you, constant reader, stopped the tale and closed the book, before the bad thing happens?   I know that nightly Helen and I gaze within the well.  And one day when the pain became too much we jumped inside and became advocates.  We landed on our feet in another world.  And daily we pick the apples and save the loaves.  We send out articles and speak at conferences.  And Helen does it because Lewis should not have died.

Lewis Blackman is in this painting twice.  He stands within the piece as the boy in green tunic of Peter Pan.  He is dressed as Peter because he will always be remembered as a boy.  Did you know that the character of Peter Pan was modeled after the author J.M. Barrie’s 14-year-old brother David?  David died when he was only 14 due to an accident.  His mother grieved deeply for her lost David, and   Barrie’s life was defined by this experience and it helped create his Neverland.

Due to the death of Lewis, Helen is creating a very different Neverland.  Folks like Helen and The Leapfrog Group coined the phrase “Never Events.”

These are things that should never have happened, these are tales that cannot be told without a wince or a gasp.  Lewis is holding a 2-liter plastic container in this painting, but it is not Soda.  It is blood.  And I think of the weight of that 2-liter, with all the memories of a child.  Helen’s child laid in hospital his abdomen filling with three liters of blood as he died in excruciating pain.  That memory echoes in the mind. 

It bounces.

Below and to the right, Helen clutches a picture of Lewis.  He is happy within the frame in direct contrast to the deep sorrow on Helen’s face.  Lewis was brilliant.  Lewis was a scholar.   He was on the fast track to attend Duke University and for his light reading while hospitalized he brought Dune and Julius Caesar.

He went into the hospital on a Thursday, and his parents had no idea how dangerous a hospital can be on weekends.  They had no access to see a medical record with a nurse’s note that “he was not producing urine.”  They had no access to a medical reconciliation report that would have listed the dangerous side effects of Toradol, a drug that is diluted by urine flow.  These were really important facts.  These were data access points that could have saved a life.  Lewis was given 17 adult level doses of a drug that ended up killing him within four days.

All along Helen asked to see a Doctor.  Instead residents working 36-hour shifts attended Lewis.  She asked again and again to see a veteran doctor. Finally a man appeared that she thought was an attending physician, instead it was a chief resident.  Helen didn’t understand this, as she did not see any nametag making his position nor experience level clear.  She would spend years supporting legislative change in the sate of South Carolina that would require all doctors to wear identification tags.  The Lewis Blackman Hospital Safety Act was passed due to her efforts in 2005.

Above and looking into the well, is a frog.  The frog looks concerned and braces its front foot against the inner lip of the well.  Is this the frog prince?  Is this that doctor who appears as someone they are not?  Or is this the Leapfrog?  Is this the refusal to accept the status quo; is this the deep desire to create a Never Event land?

I am so glad I met Helen.  In patient safety advocacy circles, she is often viewed as a mother to us all: the lady in the well of tears, the founder of MAME, Mothers Against Medical Error.  We shall work so hard with her to create this new world of Never, Neverland.

As a child I loved Mother Hulda.  I loved her even though I did not know her other names: Holle, Hel, Hilda, Holda, the Goddess in three parts (Maiden, Mother, Crone), the Guardian of the Netherworld, the protector of children, the Goddess of the storm, the leader of the Wild Hunt.  Mother Hulda waits at the bottom of the wishing well.  First and foremost she is the Goddess of spinning.   She is making a mighty web.  And when I think of Helen, I think of this web, for Helen is spinning too.  She is making a mighty web of advocacy that I am honored to be part of.