The Walking Wall

Did you know that you could help patients by purchasing an art book?  For every copy sold of The Walking Wall: 73 Cents to the Walking Gallery $10 is donated to the PatientTravel Fund of the Society for Participatory Medicine a 501c3 non-profit.

Yep.  10 dollars.  Now you might not think ten dollars is a lot, but it is all the proceeds on the book after costs are covered.  HISA (Health Informatics Society of Australia) published the book with additional help from the Cerner Corporation.  I wrote the text and created the art depicted in the book.  We make no profit from it.  We want those funds to go to the society so patients will be able to attend more conferences and events.  

This book was the wonderful idea of Louise Schaper, CEO of HISA. When she asked me where I would like to donate the proceeds, I told her I could think of no better choice than The Society for Participatory Medicine.

The book begins by explaining the mural 73 Cents and then shows the story jackets of 40 amazing people who have dedicated their lives to helping others.

You will see the stories of:

Jen McCabe, Lygeia Ricciardi, Cindy Throop, Valarie Barnes, Danielle Cass, Susannah Fox, Amy Romano, Christine Kraft, Keith Boone, John O’Brien, Lindsey Hoggle

Clay Patterson, Kait B. Roe, Brian Ahier, Richard Payne,  Paulo Machado, Helen Haskell, Louise Schaper, Dave DeBronkart, Eunita Winkey, Mary Anne Sterling,

Andre Blackman, Craig Lipset,, Kathi  Apostolidis, David Harlow, Alex Albin, David Collins, Sherry Reynolds, Tiffany Peterson, Ben Miller, Jenny Pettit, Wendy Sue Swanson, Ted Eytan, Marsha Goodman, Trisha Torrey, Kathy Nicholls, Matthew Holt, Wen Dombrowski, David Lee Scher

These are only 40 members of The Walking Gallery of healthcare.  There are currently 195 members walking around the world wearing patient stories painted on their back.  I hope there are future books to come that highlight the work of these other wonderful individuals.  Meanwhile, I will keep blogging about them.

The book is a lovely full color book and retails in the US for $40.00 plus shipping. By my count there are 260 books currently at the US distributor.  If all of those books are purchased, The Society for Participatory Medicine would receive $2,600.00 for patient travel!

That would be a lovely gift to the Society this holiday season.

A, B, C, D or F Leapfrog and the Hospital Safety Score

Three years and eight months ago I sat at a computer trying to compare facilities in the greater metropolitan area while my husband Fred was hospitalized in Maryland with stage 4-kidney cancer.  I could find very little information then.  I knew very little about how to compare facilities or search the internet.  But I quickly learned about the concept of a “pay wall.”  As a family whose primary income was in jeopardy due to a late stage cancer diagnosis, a pay wall was determent enough to shut down my search capacity.

A year later in the spring of 2010 Ted Eytan, MD showed me a link to a health data visualization competition that promoted by Sunlight Labs entitled “Design for America.”  Designers, programmers, medical professionals and artists were asked to create visualizations of health data that compared communities and depicted hospital quality using open and free government data sets.

I painted Apples to Apples.

But before I could begin painting, I had to understand the data sets.  Ted was a doctor so he was able to quickly find data sets I would need and help me understand them.  As I dug deeper and deeper into the data, I would see an acronym HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) and would need to google that.   I would also grow so frustrated to see scores presented as percentages.  Many facilities seemed perfectly happy with a score of 55% on a given indicator.  Now, I only have a high school degree, but I know full well that 55% is an F.  I thought it should be presented that way.

My research continued and in the fall of 2010, Ted and I would attend a CMIO (Chief Medical Information Officer) bootcamp for Medstar.  I was asked to speak and present the patient view of CPOE (Computerized Physician Order Entry) and CDS (Clinical Decision Support.)  I began to research these terms and discovered there wasn’t a patient view of CPOE or CDS.  The closest thing I could find was from an organization named The Leapfrog Group.  They were testing systems to make sure EMR (Electronic Medical Record) systems did not cause patient harm. 

This summer, to my delight, the idea of a report card for hospital quality combined with prior research.  Leapfrog debuted its Hospital Safety Score in June.  The score uses measures of the Leapfrog Hospital Survey, AHRQ, CDC and CMS to present a single overall score rating patient safety.  They also use additional data from AHA annual survey to allow for as much credit as possible toward the hospital safety score.  Which is really nice in view of the letter that AHA president RichardUmbdenstock wrote in June attacking the methodology Leapfrog was using.  Leah Binder president of Leapfrog wrote a response letter that explained the methodology and clarified each point.

Today Leapfrog launched the Iphone/Ipad and Android app for Hospital Safety Score.  They also released information from hospitals that were not ranked in June.  There were some surprises to be seen and now a few D’s and F’s.   There are several rating systems in the market, but Leapfrog is free to the public and is designed for ease of patient use so each family can find the safest hospital in their community.

Key Findings from Leapfrog:

“· Of the 2619 general hospitals issued a Hospital Safety Score, 790 earned an “A,” 678 earned a “B,” 1004 earned a “C,” 122 earned a “D” and 25 earned an “F.”

· 58 percent of hospitals maintained the same grade level as they had in the scores issued in June.   Another 34 percent of hospitals changed by one grade level (some higher, some lower). About 8% of hospitals showed more dramatic change, moving two grade levels or more up or down.

· A wide range of hospitals earned “A’s,” with no one class of hospitals (i.e., teaching hospitals, public hospitals, etc.) dominating among those showing the highest safety scores. Hospitals earning an “A” include academic medical centers New York Presbyterian Hospital, Brigham and Women’s Hospital, and Mayo Clinic. Many rural hospitals earned an “A,” including Geisinger Medical Center and Blessing Hospital.  

· Hospitals with myriad national accolades, such as Massachusetts General Hospital, Duke University Hospital, and Cleveland Clinic Florida each earned an “A.”  

· “A” scores were also earned by hospitals serving highly vulnerable, impoverished, and/or health- challenged populations, such as Bellevue Hospital Center and Detroit Receiving Hospital.  

In analyzing statewide performance, both Massachusetts and Maine showed outstanding hospital safety results. With 83 percent of Massachusetts hospitals and 80 percent of hospitals in Maine awarded “A’s,” it’s clear these states have each put a priority on safety in hospital care.”

In addition to providing this amazing tool for comparison, Leapfrog recommends people report medical errors by contacting ProPublica, an independent journalism organization that is investigating patient safety problems. ProPublica has set up an interactive web survey and special hotline for this purpose at www.propublica.org/patientharmsurvey or (917) 512-0241.   

I find this especially reassuring as we head toward a path nationwide accounting of errors.  In the fall many in the patient safety community were made aware of a White House initiative to create a National Consumer ReportingSystem for Patient Safety designed by AHRQ, the Rand Corporation and ECRI Institute in May of 2013.  So many organizations and people are working together to reduce patient harm.

This is a great day for patients.  This a great day for an artist who once toiled for hours trying to decipher reams of data in order to create one hospital “report card.”

But it is not such a great day for the residents of the state of Maryland.  That state along with districts Puerto Rico and Guam do not report data to CMS on Patient Safety. So if you are trying to compare Maryland hospitals you are out of luck.

Three years and eight months ago I sat at a computer trying to compare hospital facilities while my husband Fred was hospitalized in Maryland with stage 4-kidney cancer.  I could find very little information then and I was shut down by pay walls.  Now I know a great deal about facilities, how to research and Hospital Safety Score is a free service.   If I want to pick a hospital with an “A” rating on the border of DC and Maryland, I guess I would go to Sibley, because I know the score.  I hope hospitals in Maryland think about that and consider voluntary reporting to Leapfrog.

As ePatient Dave DeBronkart would say,  “Maryland, Give Us our Damned Data.”

The Sleeper

A couple weeks ago, I was listening to NPR and was amazed.  Well, I am often amazed listening to NPR, but this was in reference to a specific program.  It was Science Friday, the reputable Science Friday and they were discussing crustal displacement theory.  

My late husband Fred and I were introduced to the theory through the book Fingerprints of the Gods in 1995.  This was a really edgy theory proposed by  Charles H. Hapgood.  Charles even shared his theory with Albert Einstien in the 1950’s and received his support.  Earth crust displacement theory was considered rather odd by much of the scientific establishment.  Unlike plate tectonic theory, the gradual movement of the continents, crustal displacement theory supposes that dramatic sudden shifts can occur.  Imagine if you will, the sections of an orange floating loose within its peel.  Imagine that peel suddenly shifting 155 degrees around.  That would be a polar shift.  Landmasses would be in completely new latitudes.  Antarctica could be temperate.

It was an fantastic theory almost 20 years ago when I first heard about it and I was amazed to hear it had garnered enough scientific interest in the years hence to be debated in the mainstream scientific press.  For many years, it had seemed that people were far more comfortable with the incremental change of plate tectonics than the rapid change in perspective required for understanding a polar shift.

I thought crustal displacement theory could easily be applied to the world of health care.  For many years the world of medicine was a slow world of focus groups and command and control.  But then social media came and the picture began to change rapidly. 

Social Media is the reason I know Emily Hackel.  She lives in New York and works for Edelman, a global marketing and public relations agency.  I met her initially through Twitter.  I met her later in real life and she is a vibrant soul who lights up with intensity as she discusses health care.   

She just joined the Walking Gallery and her jacket is  “The Sleeper.”

I named it thus, because in this painting Emily holds the world dangling on a string.  Here is the moment of tension; here is the yoyo move known as the sleeper.  It is that moment of taunt suspense before the next move begins and the world spins and shifts upon it axis.   Upon this yoyo world the continents are covered with well-known social media sites and the oceans flow with Twitter birds.

When my sister was in high school she wrote an original oratory “Life is like a yoyo, it has its ups and downs.”  I thought about that speech as I painted this.  In our fast world of social media, I see those ups and downs on a daily basis.  I see a world that is very rapidly changing.  Ideas and individuals that were considered too edgy are rapidly becoming mainstream.

I am glad to know amazing young women like Emily.  I would have never met her without Twitter and its currents.  I am glad she lives in time where she can talk about polar shifts and our changing world and be taken seriously. 

Attack of the Living Meme

The Holliday family had a great Halloween this year.  When my late husband Fred was alive, we had so much fun with this holiday.  I always made our costumes and they were very creative, complex and based upon a family theme.  There was an Egyptian year, a Marvel year and of course a Halloween theme around Doctor Who.  We would trick or treat down the avenue by the toy store where I worked as a happy family.

Then Fred died and it was so hard to enjoy Halloween.

I would do my best to sew costumes with a large hole in my heart.  Last year I even missed trick or treating with the kids as I flew cross-country to give a speech in Oregon.  But this year Halloween was great!  Our theme was internet memes.  6-year-old Isaac was a TNT block from Minecraft, 14-year-old Freddie was a creepypasta known as Slenderman and I was “Binders full of Women.”

I wore one of my speaking outfits that is reminiscent of a 1940’s cigarette girl.  I created a carry tray of binders.  People asked me if the binders were full of women. I said, “Yes. Each binder was full of the profiles of women who are SpeakerLink speakers and major voices in Health Information Technology.”  Binders Full Of Women was a very popular costume idea this year, but I was excited to wear it because of an exchange on Twitter.

Many of you are aware that the hashtag #BindersFullofWomen became very popular on twitter on October 16^th.  The next day I was tweeting from a conference in South Dakota, when I noticed that the mHealth summit in Washington, DC was promoting their keynote speaker line up.  I attended and enjoyed mHealth 2011 so I was following their posts closely.  I saw pictures of six men who were delivering keynotes, and not one woman.

So I tweeted, "Do not see any Women or Patient keynote speakers at @HIMSS @mhealthsummit mhealthsummit.org #mhealth #bindersfullofwomen #mhs12"

A conversation began about this issue on twitter between Neil Versel and I.  Very soon after Richard Scarfo, Vice President of Vender Events at HIMSS Media was messaging me.  He wanted to talk about my tweet.  We had a phone conversation about the seeming lack of women and/or patient speakers.  He told me they had reached out to many women but all of them declined for some reason or another.  He told me the schedule was not final and they were still looking for women speakers and would consider my recommendations for patient speakers as well.  I told Rich how happy I was that he had responded.  I told him about speakerlink.  Then I sent him profiles of several very strong women speakers who were patients, caregivers and focused on mHealth.

Soon I was able to tweet the good news.  The folks at HIMSS and mHealth were working with me and using @Speakerlink to ensure a greater balance in speakers.

From the profiles I sent Rich, he reached out to the MaryAnne Sterling, a local advocate well versed in elder care and patient data access.   

He also contacted Donna Cryer who is Patient in Chief to the oldest and largest advocacy organization focused on needs of those living with liver disease and she has a strong background in HIT.

They both agreed to speak and will present on Tuesday, December 4^th, at the mHealthSummit held at the Gaylord Hotel right outside of Washington, DC.  I hope you can attend December 3-5, 2012 and hear their wonderful presentations.  Thank you Rich for responding to a tweet and making the world a better place!  And for helping me have a very Happy Halloween!

Dear patient advocates, e-patients and caregivers,

 

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

 

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

 

 

Background:

 

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

 

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

 

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

 

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

 

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

 

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

 

PWP Notes: (I’ve taken some liberty with order to organize it better)

 

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

 

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

 

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

 

 

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

data access

Demand access to your data by USB, CD or download, etc?

dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We love forward to hearing from you! Please post your ideas in the comment section below!

-Pat Mastors and Regina Holliday

 

Why I paint on site.

I began painting at medical conferences in the fall of 2010. Kevin Kruse who ran ePatient Connections in Philadelphia asked me if I would deliver a keynote speech.  He also knew I painted murals, but wondered if I would be willing to paint on site.   Since that event, I have asked to paint at virtually every venue I have attended.  I have painted in Australia, Korea and throughout the United States.  I have shown up at a great deal of health policy meetings with easel in hand.

But why do I do this?

A Visual Memory of the Day

So many conferences have a similar look about them when photographed.  We usually meet in ballrooms; nicely dressed men and women stand behind podiums.  Most people show lovely smiles to the cameras, regardless of whether or not their slide deck was filled with horrific statistics or pleasing results.  Good or bad, the paintbrush can depict content in a different way.  A painting can capture in one quick glance thoughts and feeling that may take an author pages to describe.   

Embracing “Free Play/Creative Thinking”

I worked in a preschool for many years.  If you are familiar with a preschool room layout, you know there are centers.  These centers allow each child to choose a path that supports creative thought, greater understanding of self and the world around them.  Some centers use blocks and puzzles, some dress up, some reading/listening and some centers have easels with paint.  Have you ever heard the wonderful Tedtalk by Sir Ken Robinson?  He says we peak in creativity between ages 4-5.  I wonder if we peak then because of the world inside our mind or is it because of the world before our eyes? 

At most medical conferences (even the ones with the word innovation in the title), I see only one center open: the reading/listening one.  I am providing a different learning experience as I set up my easel and paint.  Often a small group of people surrounds my easel.  Some of them say they wish they could join me.  They think in pictures too.  Their inspirational thoughts are often relegated to a doodle in the margins of a conference hand out.  Sometimes they do join me and paint at my side.  I hope some day to attend an event at Health Human Services and see a row of easels behind the last row of chairs.

Life is messy and people are unique

I paint from the patient and family view when I listen to content at a conference.  So my painting reflects this worldview.  And gasp!  I have dirty brushes and permanent pigments (though I have yet to have bad spill in the past two years). I offer some unique challenges for conference organizers.  I need to hear content to paint, so upon occasion the venue has strung phone line down a long hall to enable me to paint over a tile floor.  Other venues are fine with the drop cloth I provide.  I have painted from the front of the room near the speaker and had the audience follow my brush as much they follow the keynote’s spoken word.  I have painted in the back of the darkened room; my canvas lit with my trusty smart phone.  As we talk about truly inviting the patient to the table of discourse, we must embrace a willingness to think outside the box of traditional expectation.

The Salon

At events that are fairly open in their presentation and organization, I find a community forms around the easel.  You see there are many of us in the health tech world who are on the ADHD side, and sitting still is a special type of torture.  Well, I stand at my easel and often others stand beside me in the room.  I give folks permission to stand out or do things differently by doing things differently myself.  As the day progresses people will often drag chairs over and tweet about the event from the art salon that forms around the easel.

Welcome to the Table

I have gone to great deal of events and health policy meetings that are in hotel basements or upper rooms of conference facilities.  The tables are arrange in the traditional u or box shape and our names appear on table tents   Here I watch the attendees and speakers eyes light up as they realize I am painting their thoughts as I share my own.  They come talk to me at my easel and thank me for spreading the word about their work to an ever-greater audience.  They tell me how honored they feel to know their words are reflected in paint.

    

The Confessional

Often when I paint, people will stand beside me and tell me their deepest secrets. The horror, the pain, the sorrow all laid bare. I try to include that in the painting too. I tell them to consider joining the Walking Gallery, because when I paint a jacket it is the story of a life. 

Sometimes when I am painting in this way it is a type of prayer and the gift of prophesy is evident in this art form. Sometimes the person beside me tells that I painted something about their life that I could not know. They are right. I do not know; but God does and I listen and paint the vision. 

Art as an action

At certain events for some reason or another it is impossible to paint.  I always attend such meetings with a sense of sadness and loss.   Sometimes, I will show up to a meeting where I am told painting is not an option.  Then I must decide.  Do I set my easel to the side, sit within my chair and listen quietly?  Or do I leave the venue and paint upon the street?  I have done both.  I meet such interesting folks on the street.  I talk with both attendees and a great deal of patients then.  The patients had not been invited into the conference but have the most interesting things to say about health and medicine.  And I do not mind painting on the street.  It reminds me of painting 73 Cents, and after all that is how my painting advocacy began.   

NeuCare

When I was little I cherished my Golden Books.  I loved their compact shape and brightly colored pages.  I would run my fingers over the shimmering gold covered spine of the book.  I would beg my Mother to read it one more time.  

We did not buy many children's books; we could not afford them.  But upon occasion, I would see the Golden Books display in the grocery store.  I would plead with my Mother, 'Please could we get one?"  She would look down at me with her warm brown eyes and smile a half-smile.  I would grasp the book with my pudgy hands filled with anticipation while standing bare-foot on the cool gritty grocery store floor.  And she would say, "Yes."  That night she would read to my sister and me and we would cuddle against her. 

That is what Golden Books meant to me: approachable, affordable and accessible to families.  So when I met Dr. Ryan Neuhofel via the internet and heard about the amazing things he was doing in Lawrence, Kansas I painted his jacket with Golden Books forefront in my mind.  

 

Ryan had opened offices using a model often referred to as Concierge Medicine or Direct Primary Care. Now, I know when a lot of folks hear concierge medicine they think of huge upfront retainer fees, brass door handles, marble floors and fine buildings.  When I hear the word concierge, I think of the kind hard working folks in an apartment building like mine. I recall all the years when I lived in buildings without a concierge.  I remember what it felt like to fend for ourselves, while the hall flooded, the bugs came or packages were returned since no one was home.  

My vision of concierge is defined by a sense of pragmatic appreciation, but my son's vision is defined by the bellman's cart.  One of the cooler features of living in a building with a concierge is access to a bellman's cart to unload deliveries.  We would check out the cart and our son would ride with great joy.  That image, in part inspired this painting.  This is Ryan's Jacket and it focuses on NeuCare his family practice.   It is a vintage jacket and represents a time when house calls were part of life.

 

In this painting the sky is partially night and partially day.  A moon with the face of a clock fills the horizon symbolizing 24hr care.  To the far right in the background a home is upon the hill, because Dr. Neu makes house calls.  From that house a road winds down into the foreground.  Upon the path a group of children are walking along pushing and pulling a bellman’s cart crossed with a little red wagon.  

One of these children is a young doctor Ryan he looks with interest at an Ipad screen his patient is showing him.  Dr. Neu has an amazing social media presence using Youtube, facebook and twitter with equal competence and joy.  The website he built for Neucare has clear and affordable upfront pricing that offers a safety net for so many Lawrence citizens in need of care. 

Perched on the cart a young Mrs. Andi Neuhofel holds a pharmacist cup and pestle, as she is the pharmacist at Neucare.  Pushing the cart from behind a young boy clasps a few bills in hands as he pushes the cart along.  This is the money he has been saving while still accessing the care he needs.

On the weekend of September 21-23 Ryan and Andi took time from the busy practice and their young children, and participated in the Partnership with Patients Summit.  Dr. Neu’s speech on Doctors in Social Media was one of the most popular speeches at the summit.  Lawrence Kansas is lucking to have this fine young doctor who cares so much about the health of his patients, physically, emotionally and financially.

Thank you Ryan for putting all your energy into creating a care model that is accessible to all and in my mind sparkles just as much as the Golden Books of my youth.

A March of Happiness:Million Puppet March

I have attended quite a few marches in DC.  There are often yelling, chanting people delivering soapbox speeches.  People press one upon the other, trying to stay upon the sidewalk and not spill out into the street.  There are occasional arrests and very few children.

The Million Puppet March was a very different kind of March.  People were joyous to be marching, even on blustery fall day.  Children swarmed to and fro within the milling crowd.  We met in Lincoln Park at 10 am.  Our puppet troupe consisted of a lovely neighbor named Renee Dunham (who responded to my posting about the March in The Chevy Chase List Serve),



Megan Mitchell a local high school student and member of The Walking Gallery,


life coach Lauree Ostrofsky  and my six year old son Isaac.



We arrived with two suitcases filled with puppets and several other attendees joined our troupe on the spot. 

Ted Eytan came with his camera to document the amazing visual opportunity and capture the joy and color of the event.  We marched all the way from Lincoln Park to the capitol lawn.  At most Marches people are content to swarm upon the sidewalk.  This march took to the street with marching drums and puppets over 10 feet tall.  Every once in a while folks would burst into song or chant a few times, but for the most part people talked about memories of Sesame Street and the importance of Public Broadcasting.

Several reporters were interviewing the crowd in a very unbiased way, but one gentleman interviewing me seemed angered by the event.  I explained the wonderful health education that PBS has provided.  I showed him information about the Honoring Choices documentary series in Minnesota.  PBS teamed with the local hospitals and due in part to that work, Gunderson Lutheran Hospital has one of highest rates of completed advance directives in the nation.   The reporter walked away.

When we arrived on the capitol lawn, songs were sung and our organizers said a few remarks.  Then children were invited to the front speak about puppets and public broadcasting.  At the end of the event Ted and I practiced our Tedx speech that we will deliver in Detroit on Thursday.

As we practiced, organizer Michael Bellavia walked by with his puppet asking if I was Regina.  I jumped up and hugged him saying thank you for all he had done.  I enquired about fundraising and learned that they still needed more funds to cover the permitting costs.  So I am posting the link once again incase any of you would like to support these brave folks who traveled across the nation in support of puppets and public broadcasting.

Dying at “Home”

Aunt Minnie’s house always smells of flowers, cinnamon and wonder. It always has.  Tonight Minnie Wilgus died, but I know if I could magically transport myself to Enid, Oklahoma I could walk in that darkened house and it would smell like Aunt Minnie and happiness.

Aunt Minnie was my jolly Aunt.  Her refrigerator is covered with magnets from her nursing career, her Lutheran faith and a chubby wooden sheep that said, “ewe’s not fat, ewe’s fluffy!”  The ceiling is ringed with a set of commemorative dishes from Little House on the Prairie.  In the corner is a macramé plant holder made by one of my cousin’s so many years ago.  The kitchen has not really changed in all the years since she moved into the house.  Each Christmas would only add one more layer of homemade gifts from our far-flung family.

The TV would play Wheel of Fortune as my Aunt Minnie would sit upon her recliner.  Her corded phone was extra long to stretch over to her beloved chair.  And that was important because Aunt Minnie is center of our family. She kept 100 plus family members and many friends connected through her calls. 

If you know me well, you know I rarely talk on the phone.  But talk I would with Aunt Minnie for hours at a time about politics and religion, family and love. 

I have always been able to talk to Aunt Minnie, even about the hardest things. 

Aunt Minnie was a LPN in an ICU at St. Mary’s Hospital in Enid Oklahoma for many years.  She worked the 3 pm to 11 pm shift.  I remember being small and visiting her at Christmas and she would eat the family meal with us then dress in her uniform and go to work on Christmas.  I thought it unfair, but she said the patients needed nurses on Christmas.

It was on one such visit I told Aunt Minnie about Dad abusing us.  I was so frightened but I knew I could talk to Aunt Minnie.  I remember her telling Mom.  I remember staring through her glass door covered with its decals of Monarch butterflies as she and my Mother stood by our ‘76 Impala.  I could not hear their words but I watched my Mother’s shoulder’s begin to shake.  I watched Aunt Minnie fold her arms around my Mom in a massive hug.

That was the beginning of the plan. 

Every summer for the rest our childhood my sister Esther and I would stay with our Aunt Minnie and Aunt Hilda.  We would spend day with Aunt Minnie and nights with Aunt Hilda across the street.  They would teach us so many things.  We would do charity work with them at Project Philip; we would bake and help with Church events. They would send us to camp Lutherhoma and buy our fall school clothes each year.  Aunt Minnie was so happy.  My sister Esther was her Goddaughter and was like the child she never had.  Esther was always small for her age so she would cuddle in Aunt Minnie’s lap until she was in high school.

As we grew older, Aunt Hilda would let us stay at Aunt Minnie’s for the night.  I would stay up reading much past my bedtime, sometimes hearing the garage door open at 1:00 or 2:00 am.  Aunt Minnie would gently berate me and then tell me a “do not ever” story.  As a nurse she saw so many things and sometimes she would come home, shake her head and say, “Do not ever jump out of a car as it is driving down the highway.” Or it would be “Do not ever stick your tongue all the way into a soda can.”

As the years past, I would bring the art I did in school to show Aunt Minnie.  She framed a couple of pieces.  One drawing of a native American Indian Man and Wife she loved so much I gave it her.  She was so happy to have it and smiled at me told me I could have back when she died.  I told her, "Then I never want it back."   By high school we stopped spending summers with our Aunts.  We had summer jobs and our Father and Mother divorced.

I would still visit.  The years would pass. I would marry and have children.  My husband Fred loved Aunt Minnie and would always want to stay at her house in Enid.  My son's would love the legos at Aunt Minnie's House.  Every summer we would fly in or drive and spend time with Aunt Minnie and Aunt Hilda.  A few years ago Aunt Hilda began to suffer from Alzheimer’s and Aunt Minnie would take care of her, making daily trips to feed her lunch.  Last September Aunt Hilda died.  Aunt Minnie and Aunt Hilda had lived across the street from each other for 30 years.  They had been inseparable.

My sister Esther suggested a road trip last spring.  Aunt Minnie no longer had someone to care for every day so they could take a trip.  I was delivering a speech in Arkansas and Esther thought it would be nice to visit and see my speech.  I was so glad to see them there.  Even though Aunt Minnie had retired from nursing she still was an active hospital volunteer and was happy to attend a medical conference.  She was a volunteer in the ICU dept and her job was organizing the nurses supply cabinet.  She also mentored the younger nurses.  Even though she was almost 88 her old boss often said she was welcome to come back to work.

I flew out this summer for our family reunion.  I borrowed a few of Aunt Minnie’s photograph albums to create an art project for the reunion.  Aunt Minnie said, “I am not sorting those pictures out before I die, you’ll have to do that when I am dead.”  I told her it would be a shame to take the albums apart.  She had done a great job of putting them together. 

This fall my mother had a knee replacement surgery.  One day Aunt Minnie was taking her to the rehab center.  Aunt Minnie fell from the curb while helping Mom into the car.  She broke her hip.  She had surgery to pin the hip. The pins failed.  She went back in for surgery and had a complete hip replacement.  The site became very infected.  She was readmitted.  She had surgery again and the artificial hip was removed.  They put her in ICU.  She continued to fail.

She decided to enter comfort care in the ICU.  This was the ICU she had worked most of her adult life.  All of her friends were there.  The family stayed by her side all week.  My sister spent two nights with her.  This evening Aunt Minnie stopped breathing and none of the family was at her side.

But I remember where my Aunt Minnie spent her Christmas’s for oh, so many years.  I know she died in an ICU, but she was very much at home.

In Oklahoma tonight, there is a dark house that smells of cinnamon and flowers, where a faint glimmer of the streetlight shines on commemorative plates, upon a wall there is drawing of a Native American Indian Man and Wife.   I can almost hear her voice, “Thanks Regina, you can have the drawing back now.”

Thank You Aunt Minnie.  I love you.