Power Suit

The other night at dinner my youngest son Isaac said from the depths of his seven year old wisdom, “A human is the only animal that wears clothes.”  He then went back to chewing his food as I nodded in agreement.  Clothes and the adornments we place upon them say so much about the person.  They can place a person on an economic scale and give a sense of belonging.  Clothes can mark us as different and rebellious.  If an outfit is strong and becoming it may be called a “Power Suit,” as though the clothes can make the man.

I think its works the other way within The Walking Gallery.  Recently I painted a jacket story for Ian Eslick.  Ian plans to wear that jacket for his dissertation defense at MIT.  Ian is really smart, as in getting a doctorate from MIT smart; but Ian does not flaunt his mental abilities.  He speaks from a patient view as he talks of data aggregation and the possibilities if we harness the power in patient reporting within scientific research.

The painting for Ian is entitled: “The Highest Double.”

In this painting, I placed Ian, his mother-in-law and his two twin daughters.  They are playing a game of Mexican Train.  Have you played Mexican Train?  I love it.  I love it because it looks so hard at first but it is so easy.  Someone had the brilliant idea to color code the dominoes.  Each color is also a number, so seniors, children and parents can all play.  I learned to play this game with my in-laws.  I told my boss at the toy store we should carry it.  He brought it in reluctantly.  He said it wasn’t a very hard game, why would anyone want to play it?  I told my boss it had some good addition drill and it was fun, but most important of all anyone could play.  So if you look closely at these dominoes you will see they begin to morph from regular dominoes into patient reported diagrams.  How can a chronic condition be affected if we remove one agent of causation and compare outcomes?  What if we start comparing patient populations and look for doubles?  Look for patterns? Think of that train of knowledge. 

You see Ian is looking for that highest double.  He is looking at entire patient populations just as you or I would look upon a pile of dominoes.  He is looking for the match, the pattern, the train.

You might notice coins are laid upon this table (you also might notice they equal 73 cents).  My family uses coins as markers when we play Mexican Train.  If a coin is placed upon my domino track, I am unable to play on it and it becomes a train held in common.  Anyone can play on it.  In the game upon this table all trains are private.  Ian has a train and his two daughters have trains.  That final train with its foreshortened perspective facing the viewer; whose train is that?  It is yours.  It belongs to all of you who look upon Ian’s jacket.  You are welcome to join this game of data. 

Ian wants you to play.  

The View From Below

The public comment of Regina Holliday on 

“A Prototype Consumer Reporting System For Patient Safety Events”
(I have placed the slide image below in many of my speeches since September to encourage people to follow your work on this.)

Dear AHRQ Desk Officer and Doris Lefkowitz,

I have spoken at length these past four years since the death of my husband Frederick Allen Holliday II about the need for the patient/family caregiver to have real time access to the electronic medical record and the need for a national abuse telephone number/website for the reporting of harm.  We desperately need this because there are always two sides to every story.   As today is Sunday and the last day to report comment I will tell you this story.

As a child I would sit beside my mother in Church and draw. I know it is important to pay attention in Church, but I thought God would not mind if I drew pictures from the Bible.  Eight years ago my son Freddie began drawing in Church. During one service, I looked down to see a peculiar picture on his drawing pad. The picture consisted of a series of small houses lined up along the bottom of the paper. Above the houses stood stick people and fish in the sky. Along the very top of the page was an elongated oval. I was stumped trying to figure out the meaning of this image. In my best Church whisper I asked, “What are you drawing?”

He looked at me as though I was being particularly dull and said, “Noah’s Ark…from below.”

I have seen many versions of Noah’s Ark in my life; but for the most part each picture contains a boat, animals, sunny blue sky and a rainbow. I never saw a picture of what lies beneath until Freddie’s drawing. I guess it is just a matter of perspective. Both images are equally valid and each focuses on a different part of the story.

Healthcare up to this point has been very blue sky focused.  I commend you for your attempt to help us show the view from below.

I thank you for your request for comment on a Prototype Consumer Reporting System for Patient Safety Events.  It is nice to be asked our opinion on such a important topic.  I read your proposal.  The language is a little hard to follow but to sum up:

The Agency for Healthcare Research and Quality (AHRQ) to request that the Office of Management and Budget (OMB) ask for approval of an information collection project: “A Prototype Consumer Reporting System For Patient Safety Events.”

Patient Advocates heard about this first in September of 2012 and had 60 days to comment, most of us missed this window, as it was not well publicized.  AHRQ did get 45 comments and 65 personal stories in those 60 days.   The project hopes to design and test a system that collects reports of harm using standard definitions and forms.  Local providers can then use this data “to create or enhance their own local reporting systems.”

Now that clause bothers me a bit because a lot of us have already been reporting harm to our local providers and either getting no response or getting the response that our harmed loved ones were treated “within the standard of care.”

You mention that most healthcare systems do not ask for nor promote patient reporting of harm.  I would respond it has been rarely in their financial or workflow interest to do so.  You mention AHRQ is aware of the important and unique perspective of the patient/family caregiver.  I would hazard to say that you recognize it because you are looking at the entire web of care throughout the US.  You see the value in data aggregation from a wide variety of sources.

So it is the best interest of this study to consider large regional or national harm reporting.  We have suffered through the voluntary local provider method for far too long. 

(According to your letter, this research has the following goals)

1. To develop and design a prototype system to collect information about patient safety events.

Great! Let us know how we can help!

2. To develop and test web and telephone modes of a prototype questionnaire.

I would highly recommend you look at what Traitwise.com is doing in the survey world to see a system that has ease of use foremost in mind.  Also please get some folks that are well versed in plain language to look at your word choice.  The problem of being so well staffed with academics and researchers is that your word choice often reflects your worldview.

Also pictures and visualizations can be very helpful in creating greater understanding of the event intake form online.

3. To develop and test protocols for a follow-up survey of health care providers.

This demonstration project is being conducted by AHRQ through its contractor, RAND Corporation, with Brigham and Women's Hospital, Dana Farber Cancer Institute, and ECRI Institute…

Now, I am a mite concerned about the part where you talk about checking a patient report of harm against provider’s incident log. I personally saw a great many incidents of harm that occurred to my late husband while hospitalized but were not reflected in his medical record.  In some cases this was omission in some cases blatant falsifications were recorded.  Are you using the medical record to substantiate reporting of incidents?  If so are you enquiring whether the patient and family caregiver were able to read the record in a real time fashion and able to amend errors in the record?

Those are my most pressing concerns right now.  Please do reach out to us in the world of patient advocacy to help in the next phase of this project. 

I must confess when I think of your organization in my mind I do not see AHRQ but an Ark.  I see a promise to gather data in a kind of binary 2 by 2.  I see a willingness to spread the knowledge that comes from that data.  

Thank you for reaching out to all of us known as “the harmed.“  We will willingly share our saddest moments, our deepest hurt if by doing so you can promise it will never happen again.  

We want to join you in building a rainbow, a spectrum of the many views in health care.

Regina Holliday,

Patient Activist and Artist, Founder of The Walking Gallery in Healthcare

Thank God for Mississippi

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

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

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

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

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

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

That is what I call a brave conference planner.

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

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

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

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

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

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

 

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

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

  ”

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

 

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

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

 

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

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

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

"Independence Day"

My children often laugh at my rather empty cache on iTunes. For a very long time I had downloaded only one song and that was Martina McBride’s “Independence Day.” If you need a refresher on that song you can hear it here and the refrain is written below:

“Let freedom ring, let the white dove sing

Let the whole world know that today

Is a day of reckoning.

Let the weak be strong, let the right be wrong

Roll the stone away, let the guilty pay

It's Independence Day.”

Last 4^th of July, I listened to that song in continuous rotation all day as I painted Julia Hallisy’s jacket: “Independence Day.”

Julia Hallisy is one of the stalwart defenders of patient safety in this nation.  Today I want people to realize how much she and her family has been hurt by the current care system.

Julia’s Father’s Death:

Julia’s journey into healthcare harm began with her father Tony Bajone (legal name was Julius George Bajone) in 1988.  Kidney stones were bothering him and went to the VA in San Francisco for treatment.  It was determined that he needed surgery and pre-op studies were done, including a chest x-ray. Since he was a smoker, Julia asked his doctor if the chest film looked ok and was told the results were fine.

Nine months later Tony started coughing up blood.

A first year resident told the family that it was shame that they hadn't followed up with the chest film results. Julia was stunned and asked what the film had shown.  The results had shown a large mass in his lung. The radiologist had written a report saying follow up would be needed immediately.  Tony’s lung cancer that had gone untreated and at this point was terminal. Julia requested Tony’s medical records and the radiology report was not included. The VA said it was "missing" or didn't even exist. Julia went to the medical records department and told the staff that it did indeed exist.

They miraculously found it.

Julia’s Sister’s Death:

Donna Bajone, Julia’s sister, was born with a congenital heart condition that required surgery as a child. At the age of 25 she developed an irregular heartbeat. Donna went to Stanford University where she had been receiving care since she was 2 years old.  She had no health insurance.  Donna was too old in 1992 to be on her parents plan. (This lack of access has been addressed in the Affordable Care Act or what some folks call Obamacare) The bank she was working in kept her work schedule just below the number of hours to get insurance.  Stanford did place a pacemaker in Donna on an emergency basis, even without the insurance. They released her in a few days and the facility requested she get on welfare if she wished to receive any additional care. Donna continued to experience an irregular heartbeat and several calls to Stanford did not help. They would not see her until the insurance or Medi-Cal coverage was available. 

She died in her sleep less than a week later.  Julia and her family tried to get access to Donna’s medical records after her death and they did not receive them for months.

Julia’s Daughter’s Life and Death:

Kate Hallisy died of Cancer at 10 years of age.

In 1989 five-month old Kate was diagnosed with bi-lateral retinoblastoma, which means she had malignant tumors in both eyes.  This is usually a very treatable form of cancer, but things did not go well for little Kate.  At 18 months Kate underwent surgery to remove her right eye.  She had her right leg amputated in 1997 due to bone metastasis.   In her last months the cancer spread into her brain.  All throughout the family’s 10-year struggle they fought for appropriate care often finding themselves at odds with their insurer.  In addition to being the caregiver of a very sick child, Julia would become the communication channel between the doctors and insurance; all while maintaining her dentistry practice.  As the cancer spread they would have to fight for appropriate drugs to maintain a quality of life as Kate’s small body filled with cancer. 

They even had to fight for access to an oxygen machine in Kate’s last months.

Julia wrote a book detailing her struggle to provide care for her daughter and to help others in their fight entitled The EmpoweredPatient.

For this is a fight.

There are folks who wish to join The Walking Gallery and hope to get a “pretty jacket.”  Julia has this one.  It is filled with beauty and pain.  She has the weight of her family on her back.

I listened to “Independence Day” while I painted this because the pain she suffered is the same kind of terror as living for years in a home filled with abuse.  Trust me, I know, I have suffered through both and they feel much the same. 

Today is that day of reckoning.

This painting and my mural 73 Cents both contain the same quote from the Declaration of Independence:  “Experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to arm themselves by abolishing the forms to which they are accustomed.”

I ask all who read this blog to write in your public comments supporting a need for 

A Prototype Consumer Reporting System for Patient Safety Events here.

We need a safe way to report harm and abuse in they system.  Please comment before July 8^th.

Do it for me. Do it in the memory of Fred Holliday II. Do it for three generations of Julia’s family who did not get to celebrate this Independence Day.