A home at HIStalk

Early in the morning of Monday, April 13, I walked across the McCormick Center in Chicago.  I headed toward the exhibition floor.  I had an exhibitor’s pass, so even at that early hour I was allowed into the mammoth room. I passed glorious booth after glorious booth.  Many venues were filled with plush carpets, large flat screens, food kiosks and even fine art.  I walked through isle after isle until I arrived at the 5300’s.   Then I turned, dragging my art supply case behind me.  I walked up the isle toward the HIStalk booth. 

The HIStalk booth was modest in the extreme.  The booth itself was a 12-foot by 12-foot space.  The carpet thin, the back drapes were a simple white. Two standing panels explained that HIStalk was the site for up-to-date news in HIT and the place to build your brand.  In the center was a foam core cut out of the Tim’s avatar from HIStalk.  A table with one chair graced the entrance of the booth.  The booth may have seemed austere, but I assure you HIStalk spares no expense where it really matters.

I attended my fourth HIMSS conference April 12-15, 2015 because of HIStalk.  This conference is one of the largest in the field of healthcare.  Over four short years, I have seen it begin to transform.  I used to be one of the few self-described patient attendees.  Now there are many of us.  I almost did not attend this year due to costs, but HIStalk came to the rescue.

In the spring of 2014, I did an interview with Tim from Histalk.  In that interview I bemoaned the lack of patient representation at HIMSS and explained that few patients could afford to attend the event. Tim offered to help create a scholarship for patients.  This year I reached out to Tim so we could make that scholarship a reality.  Of the many patients who applied, five were chosen to receive scholarships.  HIStalk also offered me a scholarship to cover most of my air travel and most of my hotel costs. I was still homeless at HIMSS on Tuesday night, but Kourtney Govro from Sphere 3 Consulting came to my rescue (as she did in 2014) with a last minute room.  

When I arrived in that modest booth on April 13, 2015, I began to set up my easel and paint jackets for The Walking Gallery.  Every few minutes a vender would come by and thank HIStalk profusely for what it does.  I would explain that I was working with HIStalk on their scholarship campaign and would give the HIStalk team the messages.  I heard the phrase “We are your biggest fans!” at least a hundred times.  Almost every vender that came by left swag and small gifts for the HIStalk team to give away. 

Lori and Jenn from Histalk arrived around 11 and received many accolades and I continued to paint.  Soon the patient scholars began arriving.  There was Carly Medosch, who speaks on behalf of so many patients with chronic illness.  Tami Rich who advocates for both her aging parents and her son with a heart condition.  Melanie Peron who after loosing her life partner, created The Butterfly Effect: a social enterprise to improve care transitions using art, story telling, and technology.  Amanda Greene who advocates on behalf of the Lupus community. Kim Witczak was the final scholarship recipient, but sadly could not attend due a time conflict at home. 

As each fellow patient arrived we embraced in joy.  Then each patient began the exhausting process of going to vender booth after vender booth and talking about technology from the patient perspective.  I stayed in the HIStalk booth and painted.  I listened to the attendees praise the work of HIStalk as they eagerly spoke about the HIStalkapalooza party on that Monday night.

Of all the parties that happen at HIMSS, HIStalkapalooza is the golden ticket event.  Each year it has grown and grown.  This year it was hosted in the House of Blues. The event was standing room only.  I and the other patients attended the festivities and Melanie even wore a French couture ball gown!  I am not one for crowds, so I stood in a quiet corner by the bar and listened to Jonathan Bush, co-founder of Athena Health and Walking Gallery member, get a pie in the face.  Everyone in the room was so jolly.  It was a lovely evening and I thank HIStalk for inviting us.

On Tuesday, I painted Carly Medoch’s jacket “My Medicine.” In that painting pills that treat pain through chemicals morph into the bunnies that treat pain through cuddles within the swirling cacophony of Carly’s life.  I finished it in time for her to gather in the HIStalk with the other members of the Walking Gallery at HIMSS.

I also painted a canvas for HIStalk.  It is entitled “We are your biggest fans.”  It is painted with the bright hues of the House of Blues.  In the center of the painting is the pie that would soon adorn Jonathan Bush’s face.  A winning sash like a beauty contestant would wear falls from the ceiling emblazoned with the words: “We are your biggest fans.”

I’m not sure who is saying that phrase. Is it the hundreds of attendees that visited this nondescript booth in the hinterlands of the trade-show floor?  Or is it the staff of HIStalk who loves their readers and knows money invested in a fancy booth is money that is not spent on people, patients and parties where we all embrace each other. 

Sending the Card

Today is Valentine’s Day. 

As a child, I rather dreaded this day as would have to laboriously write 30 names of my fellow students on their cards.  I did however cherish the cards I received in return and still have some from 1983 in my memory box.   Cards can make you feel so very wanted and loved.

As I worked this year with my son Isaac on his Valentine’s cards for his third grade classmates, we discussed the many ways he could show his friends that he cared for them.  We also began a rather deep conversation about subtext.  We talked about the facing message that is obvious in a card but there is often a deeper subtle message underneath.

In February of 2013, I began a campaign on Change.org and on Twitter to encourage Hallmark to have a line of hospice cards.  The idea came out of a tweet chat that TedMed hosted that year.   Major media sites reported the campaign that spring.  Hallmark did consider my proposal and made their search engine a bit more user friendly for families looking for cards appropriate for hospice, but they did not create a hospice card.  A competitor, Greeting Card Universe, ended up making 24 different types of hospice cards in the spring of 2013.

When I attended HIMSS in Louisiana in March 2013, I brought materials to begin creating a large hospice card prototype for Hallmark.  So many people who attended the Patient Engagement Track signed the inset that would accompany the card. 

When The Walking Gallery gathered on June 2, 2013 in Washington, DC attendees from all over the nation signed the card insert we planed to give to Hallmark.

When I spoke at KUMC in Kansas City, Kansas in September 2013, I brought the card elements with me.  With help from the amazing folks at KUMC we assembled the card right there in Kansas only miles away from Hallmark Headquarters. 

My dear friend Jari Holland Buck, Walking Gallery Member and patient advocate took the over-sized card to the Hallmark Headquarters in September 2014.  We had tried to arrange an official hand-off in 2013 but were unsuccessful.

 At approximately 11:30 am Central time, September 5, 2014, Jari delivered the hospice card we assembled at KU Medical Center. Jari did try to find the “right” person to accept delivery of the card to no avail.  She hoped a spontaneous visit would net results.

Prior to arriving, Jari verified that they still lacked an identified presence in the hospice cards. Their website stated the following, "These cards are available within several different lines in any store that carries Hallmark products.  But because they haven't typically been displayed together, and because not every store offering Hallmark products carries every card we produce, these cards can be difficult to find. Late last year we began offering new displays to group these cards in a "tough times" zone with signs to help shoppers find them.  These new sections will be appearing in many Hallmark Gold Crown stores throughout 2013."

The front desk security guard asked Jari to leave the card as she was making an “unscheduled delivery.” Jari refused, saying that there was too much pain and too many people behind this gesture to simply pass this work to Hallmark anonymously.

 Jari suggested several possible recipients to the security guard. The security guard responded that she didn’t have the names or roles of department employees. Jari suggested that Media Relations might be a good direction.

Linda Odell, (whom responded to my initial request via several reporters in 2013) Manager of Media Relations, personally accepted delivery of the card.

This is what Jari told Ms. Odell:

“My name is Jari Holland Buck. I am a Patient Advocate and member of Regina Holliday’s Walking Gallery. I am here today on behalf of all hospice patients, past, present and future, as well as the family members who care about and the caregivers who care for them. Facing death is one of the most difficult challenges any of us will face, whether it is ours or that of someone else.

Hallmark has helped us with our inability to express the right message and continues to do so by offering cards that are “appropriate” for those in hospice. When I walk into a Hallmark store to purchase a hospice card, this is not a fun trip. I do not wish to search through the racks or be escorted by an employee who may or may not know where to source the appropriate card on the racks. This is hard enough for me to acknowledge and I just want to get in and get out.  Hallmark has neither clustered these cards in a meaningful way in the stores nor offered a line specifically dedicated to this painful experience.

On behalf of Regina Holliday, members of the Patient Advocacy Walking Gallery, our local community and caregivers throughout the US, please accept “our” card asking you to dedicate your time and attention to this issue.”

Ms. Odell responded that she was working on correspondence with www.caringbridge.org/ for a co-branded line of cards.  She was working on this at the very moment she was contacted by the security guard and thought the timing was fortuitous. Jari asked if Ms. Odell if she was aware of my petition and she said, “Yes. Regina was the one who initiated the change.org petition for hospice cards.”

Ms. Odell stated that hospice cards were still not grouped within Hallmark stores and was aware that there had been “issues” with shelf talkers / inserts that identified their presence within the racks.

Jari told Ms. Odell that she was serving as an advocate for a hospice patient. Jari knew, from personal experience, what it was like to visit a Hallmark store seeking these cards. Jari explained how awkward many of her client’s friends and family members felt expressing themselves to the dying patient.

Ms. Odell acknowledged that the point “This is not a happy trip to the card store and I am not here to shop or laugh,” was a valid one and one not previously considered to her knowledge.

She also said she knew 15 people who needed to see the card. They were spread widely throughout the organization. Ms. Odell then asked for a copy of Jari’s explanation of the card, which Jari willingly provided.

Today is Valentine’s Day and Jari sent me a card.  I don’t get many cards on Valentines day and I thank Jari for being such a great friend.  Her card encouraged me to write this post today and report on the Hospice Card saga of the past 2 years.

Which encouraged me to think about subtext.

I realized that I began demanding cards for our loved ones who are dying in February the month of Valentine’s Day.

I am a Widow. This is a hard month for me.  My thoughts turn to love and loss.  My request to Hallmark is that same as it was two years ago.  Help make a time that is so very sad be filled with love.  I don’t want a memory box just filled with Valentines.  I want to see some hospice cards.

So I write this post today and will tag it with #HealthPolicyValentines.  

Be the change you wish to see.  Never forget you can change health policy with a simple greeting card. 

HIMSS or Bust

Last year I had the opportunity to do an amazing interview with Tim from HIStalk.  It was a wide-ranging discussion that covered a great deal of the HIT (health information technology) landscape.   Toward the end of our conversation, Tim and I began to talk about the challenges patients face attending HIMSS.  Many patients would like to go this enormous conference with its thousands of attendees, great educational sessions and access to numerous health care venders; but cannot afford to pay for hotel lodging, airfare and an attendee pass.  We talked about the possibility of working together to create patient travel scholarships.

So today we would like to jointly announce the HIS-talking Gallery Patient Scholarship for travel to HIMSS 2015, April 12-16, in Chicago!

There will be five scholarships offered for $1,000.00 each provided by HIStalk.  Each winning attendee will also have  a HIMSS attendee badge.  The winners will write a post about why they want to attend HIMSS prior to the event. That post will be hosted on HIStalk.  They will be encouraged to use social media to report out during the event. They will also write a HIStalk post explaining their experience after the event. As the founder of The Walking Gallery, I will offer to paint a jacket for any patient winners who have not already joined The Walking Gallery. The HIS-talking Gallery patient scholarship winners will be walking talking patient thought ambassadors in the hallowed halls of HIT.  Also they will be able to sit in the comfortable space of the HIStalk booth on the exhibition floor whenever they want to rest and recuperate.

In addition, they will also get an official T-shirt!

 How do you enter?

If you would like to be considered for one of these scholarships, please email your request to (one of our newest members of the Walking Gallery): Lorre Wisham at Lorre@Histalk.com.  Your email needs to explain why you should be funded to attend HIMSS and please include your facebook link or Twitter handle. (International patients are welcome to apply but they must be fluent in English and the scholarship amount is a flat $1000.00 regardless of travel distance.)

How is it judged?

The HIStalk team will judge requests based on writing merit and I will be looking at the patient story aspects.

When is it due?

All requests to attend must be turned in to Lorre by Feb 9, 2015.  We will announce the winners within one week on HIStalk.com.  Checks will be issued before the event so winners can book their airfare with these funds.



 Why are we doing this?

I see this scholarship as a wonderful next step in greater inclusion of patients within the HIMSS conference.  I thank Tim and the entire team at HIStalk for their willingness to support patient participation in such a meaningful way.

Now, start writing those emails!

Tip Jars and Sustaining Members

In my line of work and type of advocacy, I get a lot of requests for pro bono work.  I support my life’s mission and a family on the money I earn from painting and speaking.  Though I am always trying to add to the public good, I can only agree to a few pro bono gigs per year.  Some of the venues that ask me to present are small hospitals, non-profits or universities that can only afford to pay travel, lodging and my babysitter’s fees.  I work with these folks because I so deeply want to help their mission as it aligns with my own.  We want to help patients have better lives and end of lives.  We want medical professionals to have joy in their work as they help others.

Some venues don’t have any money for patient speakers.  They cannot afford to pay for travel or lodging or anything else.  They may be very small and operating on a shoestring budget.  Or they could be very large but their advocacy is far reaching and the funds are pressed thin.

For the past two years @HIMSS has asked me to speak.  For the past two years HIMSS has paid my travel and lodging.  This year they cannot.  They would like me to speak, paint and spread the patient story far and wide but there are no funds for travel.

I did the math.  If I sleep on a friend’s couch or even bring a sleeping bag, I could go to Orlando #HIMSS2014 but I need to spend $850.00 out of pocket on travel and sitter’s fees.  I told my friend @ePatientDave I would probably bring a tip jar to set next to my easel in an effort to defray the cost.  Hey, it works for musicians on the subway.   Why not work for an activist artist at an informatics conference? 

Then a friend on twitter asked me if there was a way to donate towards my work.  Did I have a @gittip account?  I did not.  But her question intrigued me.  What was Gittip?

Well, I went to their homepage and my world was rocked!  It is a sustainable crowdfund! I wanted to fistbump the entire Internet! I have done crowdfunding before with great sites like @Medstartr and @Healthtechhatch, but that is a campaign specific and the funds I raise usually go to help others.  Here is the explanation from their page:

"WHAT IS GITTIP?

Gittip is a way to give small weekly cash gifts to people you love and are inspired by.

Gifts are weekly. The intention is for people to depend on money received through Gittip in order to pay their bills, and bills are recurring.

Gifts come with no strings attached. You don't know exactly where your gifts come from, and the maximum gift from one person to another is $100 per week.

Gifts are public. The total amount you give and the total amount you receive is public. Participants on both sides of the equation are rewarded publicly for their participation. (You can opt out of publicly displaying your total giving.)

Give by answering Who inspires you? on our homepage, and following the steps."

Wow!!! This could make a difference in the lives of so many patient advocates and speakers.

So here is my virtual tip jar: https://www.gittip.com/ReginaHolliday/

If you like what I do and want to support it in an ongoing way, this site is for you! 

Thank you everyone at Gittip for your valid work.  So many individuals in crowdfunding feel the shame of holding the beggars bowl; you have rebranded that bowl into a jar we can all be proud of.

**************************UPDATE*********************** 12:31 Feb 2, 2014

Just two hours later and folks are already donating!

@Sphere3 has already offered me a hotel room for HIMSS14!

God is good! I am so thankful and blessed to have such wonderful friends! What a great way to spend a Sunday.

A Hospice Card at HIMSS13

I talk about HIT (Health Information Technology) often.  I am very excited about the potential for HIT to allow patients better access to information so they can make decisions about their health.  I attend a lot of policy meetings on the subject of HIT and the subject of patient safety.  Those conversations are wide-reaching, but one topic that is rarely touched upon is end of life.

Like many people in our culture, policy folks often side step this conversation in favor of a safer topic like “disparity.”  We can have in depth discussions about the need for a reduction in hospital readmission, but not address the panic readmit of a hospice patient when the family is ill prepared for the final days.  I can watch a room full of people hash through clause after clause on Meaningful Use regulations and see them barely touch upon transmission of advance directives.

So, I am bringing a large hospice card to HIMSS13.

HIMSS 2013 Annual Conference andExhibition is March 3-7, 2013 at Ernest N. Morial Convention Center, New Orleans. The HIMSS (Healthcare Information and Management System Society) conference focuses on Health information Technology and Informatics.  The conference is the largest in the field of HIT and 40,000 attendees are expected. 

I will be attending and painting on site on March 5th. I will be in a special session:

 

“PatientExperience through HIT Forum” location: Room 252

Is e-engaging with your patients worth the effort? This one-day forum features three sessions dedicated to the value of enhancing the patient experience.

Making Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives: Case Studies in Patient Engagement

March 5, 2013 
9:45 AM - 10:45 AM

Description:

Speaker(s):

§  Eric Manley

§  Simeon Schwartz, MD

§  David Rowe

The Business Case for Implementing a Patient-Centered Communication Strategies
1:00 PM - 2:00 PM

Description:

Speaker(s):

§  Jonathan S Wald, MD, MPH

§  Dave Chase

 

Building Patient 2.0: Engaging People in Health through Consumer-Facing Devices and Tools
2:15 PM - 3:15 PM

§  Sandra Elliott

§  Christine Robins

§  Jane S. Sarasohn-Kahn

I am really excited to paint these sessions as I know several of these speakers and they have amazing things to say about the intersection of patients and health information technology.  I am happy that Meaningful Use does require that 50% of the time hospitals/doctors find out whether a patient has an advance directive, but I wish it were for 18 and older not just 65 and older.

Many folks at this event will be talking about the power of patient reported data and its importance in a vibrant electronic health record.  But I bet most of those folks will be thinking about data submissions as information from scales and blood pressure cuffs with wifi rather than wondering if their local HIE (health information exchange) can connect with a personal account on MyDirectives.

If you come to the session please sign the hospice card.  I plan to send it to Hallmark via a few of my Kansas City friends as an example of our support of an End-depth discussion on policies that affect us all.  

If you do not make to the Patient Experience through HIT Forum, there will be a post session tweet-up on Patient Engagement at 3:30 at the HIMSS Social Media Center.  I hope to see you there.

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!

Out of Reach: a jacket for JoAnn Klinedinst

JoAnn Klinedinst strides tall through the corridors of HIMSS.  She is the Vice President of HIMSS Professional Development.  She is accomplished and muti-talented, able to compose works of great beauty with the keys of a computer or the keys of a piano.  She holds multiple degrees, and not much in life is out the reach of JoAnn.  But this was not always the case.

This is JoAnn’s jacket for the Walking Gallery: “Out of Reach.”

When JoAnn was a little girl she ran and played like other girls.  When she was nine years old her stable world was rocked with a diagnosis. Her mother had MS.  JoAnn’s mother was only 38 year old and terrified. 

When JoAnn was 11 her mother could no longer walk, and she was confined to a wheel chair.  Little JoAnn had to take on adult responsibilities.  Her father worked during the day and cared for his wife at night.  JoAnn would do the cooking and cleaning and the shopping for the family.  He mother would send her to the market to get cheese and meat.  The counter would loom high above her and she could not see over it.

There I stuck her in a painting.

She is always reaching and is too small, whilst her mother’s shoulders hunch in sorrow for her little girl.   This was not the way it was supposed to be.  JoAnn should have her parents at her side.  The mother should walk with pride those few steps to the counter.  The world should be a brighter place of with sunny years filled with school concerts and two parents clapping in the audience.

But that is not JoAnn’s story.  Her story is standing tiptoe to reach up to a counter and returning home to mother who cannot do all the things that mothers do.

The years past and JoAnn married at 19 with her mother’s blessing.  “Go, live your life, “ she said.  JoAnn moved to Chester County, PA and she went to college.  After four years she graduated and both her parents attended commencement exercises.  JoAnn was so happy. 

The years went by and JoAnn had two children of her own.  She would gather up the children and “Grannie” for field trips to the Mall.  Toward the end of Grannie’s life, she was confined to a nursing home.  Her body was now paralyzed but her mind knew no bounds.  It would soar, her beautiful soul brought joy to all those around her.

JoAnn’s mother left this world on April 11, 2008.  She left a prison of pain and paralysis.  She left a little girl, now a woman grown.  She left a little girl who could play a piano.  She left a little girl who loved her so.

That little girl walks the halls of HIMSS inside a woman’s body, and nothing is out of reach for her. Nothing.  And she will dedicate all her days to helping little girls and mothers in their patient journey and she will do it with the music of data.   

Ashes: HIMSS Day 1

I left for HIMSS12 conference in Las Vegas on Ash Wednesday. 

My flight was at 5:45 in the morning.  I knew I would be spending my entire day at a casino hotel, so I went to get ashes from my Pastor on Tuesday.  I had helped our Church Vicar Cassandra Lamb the year before with the Imposition of Ashes at a local metro stop.  So I felt I could take the “ashes to go” a step further and bring it them to Las Vegas.

You do not blend into a crowd, even in Vegas, with ashes on your face and a painting on your back.

I was not the only person standing out within the crowd; there were several walkers from The Walking Gallery at HIMSS.  They stood out with their declaration of faith in a concept.   They believe that the patient voice must be heard within the halls of medicine and technology.

There were at least 25 members of the Walking Gallery wearing patient advocacy jackets at HIMISS.  As one of my friends quipped we are the 1%.  We were more like the .1% of the 37,000 attendees.

JoAnn Klinedinst, Ileana Balcu, Liza Sisler, Sue Woods, Matthew Browning, Todd Park, Ross Martin, Kym Martin, Colin Hung, Sherry Reynolds, David Collins, Brian Ahier, Gregg Masters, Janice McCallum, Jane Sarasohn-Kahn, Mary Anne Sterling, Dave DeBronkart, Paulo Machado’s, Keith Boone, Kourtney Govro, Lizzie Dunklee, Donna Scott, Mark Scrimshire, and Lygeia Ricciardi were there representing the patient voice. 

We might have been a tiny fraction of all the attendees, but we were noticed. 

The conference space itself was a mammoth construct of hotel wings built one upon the other in an endless maze of hallways and dead-ends.  I was carrying the weight of 10 jackets upon my back for most of the day so the endless circuitous paths were quite tiresome.   I hope that the EHR designers that roamed these endless halls took this lesson to heart: overbuilt structures and switchback paths are not welcome in the world of the weary traveler or the world of data.    

After securing my name badge, I hurried out the exhibition floor.  I saw a lot of booths.  Some had candy, some had cars, some had “booth babes” and some had all three.  Everywhere I turned the air hummed with electricity and the visual field was dominated with computer screens.  It was a very large exhibition floor, and many venders were so busy that I passed through their stalls without remark.

That being said, I had some lovely conversations with folks in several booths.   I spoke at length with Clay Patterson from Cerner about the potential of patient portals to improve health and wellbeing.  Also in the Cerner booth they had healthy snacks and water, which I relished a great deal.  I stopped by AZZLY too to see Turner Dean, and met with him later that evening as the Walking Gallery gathered.  I met Liza Sisler in the Microsoft booth and had a heart to heart conversation with Judith L. Kolde about patient care at end of life.  Then I gave Liza her jacket for the gallery.

I met Jerry Faiella in The JACO booth and we discussed the hygiene advantages of powder coat steel C.O.W.S  (computers on wheels).  I also spoke with Bill Rizos from afc industries, inc. and our conversation encompassed HAI to HIE.  I also got to speak with the nice gentlemen in the Hospira Booth.  Steve Severt and Roddick Adair explained the wonders of IV clinical integration as I praised their pump as the best we had used when my late husband was sick. 

I spent time with several members of the Society for Participatory Medicine discussing patient advocacy and painted stories.  Dirk Stanley, MD has a background in art and we began a very technical discussion about paint quality.  That was super cool.  





Then Keith Boon introduced me to me to his friend who is part of one of the stories depicted on his back.  Keith noticed the ashes on my forehead and said, “Oh no, I forgot it was Ash Wednesday.”  I said “Keith, I have ashes with me.  I am Lutheran, would you like me to give you the Imposition of Ashes?”  He said yes and I spoke the words, “Remember you are dust and to dust you shall return.”  We then parted ways and each of us went to advocate for the least among us.   

Many of us met later that evening in a small gathering of the gallery. It was so good to spend time together discussing our individual missions and our combined goals.

At the close of day, I walked and walked through endless halls and smoky casino rooms to find a taxi to take me to my hotel.  The line for taxis stretched around the block, but near the front of the line I saw my friend Antonio Fernandez from the Puerto Rico REC.  He hugged me warmly and we shared a cab.  He too saw my ashes as we parted and I assured him what was on one’s face was not as important as what was in one’s heart.

I went into my hotel tired in body but refreshed in spirit as a loved and loving member of The Walking Gallery.

Washed Away

I’ll admit it.  I am afraid of the garbage disposal.

I think I shall blame that phobia on Stephen King, as I read Firestarter at a very impressionable age.  There were many visually terrifying scenes within that book, but I think death by garbage disposal was the most gruesome.

How does one die via garbage disposal?  Well, in Stephen King’s work, one of the main characters in the book has a little telepathic ability he calls “the push.”  He can push other people within their mind to do things or see that which he wishes them to see.  Unfortunately, the poor recipients of “the push” often develop an echo that becomes a ricocheting thought.  That ricocheting thought then begins to tear up the poor victim’s mind.  The pressure and confusion becomes so bad that death by garbage disposal seems like a good option.

The first time I lived in a home with a garbage disposal was at my Aunt Hilda’s house as a young child.  I found the bright yellow enameled sink with its dark steel maw a disturbing juxtaposition.  But this dichotomy existed in a happy house, and I could ignore my fears.   After all, Aunt Hilda would just laugh and cook and rarely turn the disposal on.  Almost every summer of my life I have visited Aunt Hilda’s house.  But theses last few years Aunt Hilda had not been there, instead my mother has been staying in the pretty yellow house. 

Aunt Hilda had been living in a nursing home as Alzheimer’s destroyed her mind, just as assuredly as a garbage disposal destroyed the contents of its darkened chamber. 

I visited her only once this summer whilst in town, and that visit only lasted minutes.  Aunt Hilda was methodically chewing food spooned into her mouth by her loving sister Aunt Minnie.  She hadn’t spoken in years.  But she could still remember how to swallow.

I left her in the nursing home and went back to her house stared into the maw of the garbage disposal. 

Then I began to paint Mary Anne Sterling’s Jacket: “Washed Away.”

Do you know Mary Anne?  She is the CEO of Sterling Health IT and was the 2010/2011 HIMSS Institute for e-Health Policy Executive in Residence.  I have seen Mary Anne at many health IT events in DC over the past two years.  She is usually the quiet one in many discussions, biding her time and then surprising us all with her astute analysis and eloquent delivery. 

Her dedication to creating a better healthcare system is very personal.  She watched her father die a long slow death from Alzheimer’s.

She began caring for her parents while in her twenties.  Her father began to suffer the first signs of dementia in his early 70’s.  So began their hellish family odyssey.  The years and years of care dragged on.  The family liquidated all assets to provide care for the father.  Twenty years passed by in decline as his ailing wife tried to care for her dying husband.  Time passed and Mary Anne’s father had no idea that this beautiful young woman was his daughter.  And still her father fell deeper and deeper into darkness.  He was placed in a nursing home on Medicaid while Mary Anne struggled to support herself and her aging mother.

Mary Anne struggles so, and thus I painted her.  One hand reaches out bravely trying to hold her father’s hand before he is washed away, before he is torn to shreds by a disease as unforgiving as a steel in-sink-erator.   She fails in her endeavor and her father dies in 2001, at the age of 95.

In her other hand she holds her mother upon the ledge.  She is supporting her physically, emotionally and financially.  Her mother looks upon the scene with confusion as mild cognitive impairment has begun to cloud her mind.

Behind and above this scene of tragedy is a window.  It is a beautiful summer day and only glass separates these figures from the bright sun and soft breeze.  Only glass as hard and restraining as steel separates those stuck within a nursing home bed from the freeing breezes of a summer day. 

I painted this in my Aunt Hilda’s kitchen in Oklahoma.  A little over a month after I painted this, Aunt Hilda died.  I am glad Mary Anne has worn this jacket to events this past fall.  As she wears it, the story of her father lives on and so in part does my Aunt Hilda.

Minutes of Sunshine

Do you remember the little red wagon of your youth?  I remember mine.

I remember the rusty grit of the metal and the embossed grove design on the bottom of the carriage.  I remember the wagon was an excellent tool to load piles of fall leaves or dozens of Oklahoma’s native pecans.   If my sister Esther and I sat cross-legged we both fit within the wagon as our brother pulled us down the sidewalk.  But oh, I would squeal for joy when I would lay down alone in the bed of the wagon and my brother would pull me along.  The clouds would race in the sky above me and my hair would rip across my face as we careened down the sidewalk.  It would never last long.  My brother was only a child himself and could only pull at racing speed for minutes, but how I cherished those minutes of sunshine.

When my husband Fred was sick he was not pulled in a red wagon.  He was lifted onto a gurney and strapped in place 46 times for transport.  He was rolled out of hospital doors and into transport ambulances where EMS teams would transport him for radiation or other treatment.  I did the math once and realized that Fred experienced an accumulated three hours of sunshine and fresh air during his eleven weeks of hospitalization due to transport.. 

He loved his minutes of sunshine.

Fred was sick during the spring of 2009 inWashington, DC.  If you have ever been to the DC area in the spring, you know our fair city is bedecked with flowers.  I remember transport after transport where the blossoms would gently fall upon the gurney as the EMT would push through the doors of the radiation facility.  Then the EMT team would leave us in the hall.  Gurney after gurney would line the hallway like cattle in their stalls.  I would stand by Fred and hold his hand as strangers and technicians would brush by us headed to the waiting room or the chemotherapy suite.

Fred would close his eyes and avoid the stares of strangers and the fluorescent glare of the blinking lights of above.  He would wait and suffer until it was time for transport again; until it was time for falling blossoms and minutes of sunshine.

All of these thoughts and memories flew through my mind as I spoke to David Collins.

David Collins is the senior director of Healthcare Information Systems at HIMSS, the largest U.S. cause-based, not-for-profit healthcare association focused on the use of IT and management systems for better healthcare.  I saw David in person at the mHealth Summit in Washington, DC.  He wanted to talk to me about potentialy speaking at a HIMSS event.  I wanted to talk to him about joining The Walking Gallery.

Then David did something very few Gallery members have done.  He took the jacket off his back and joined the Gallery.  He stood in a busy hallway in his dress shirt and poured out his heart and told me why he works on HIT (Health Information Technology).

Davis was once EMS.  He provided traditional emergency transport, worked private EMT transport and worked within the hospital itself.  He helped patient after patient.  He saw cancer patients lining corridors like cattle in stalls.  He saw patient information lost between facilities and saw how patients suffered when their treatment was delayed by lost data and poor communication.    

He saw so much that he went back to school to study HIT.

This is David’s Jacket: “Minutes of Sunshine.”

This is what I saw when I stared into eyes haunted with the pain of many yesterdays.  But I am so glad that David did not give up. I am glad that David decided to dive into a field that he thought could create the greatest positive change.

In this painting only the center is serene.  This is the stillness of a moment.  In this moment a younger David pulls the gurney with the help of another EMT.  The patient looks above to a beautiful blue sky filled with cotton candy clouds.  I wonder if this patient feels as I did in my little rusty wagon.  Does he rejoice that he is still alive when death looms so very near?  David looks upon the viewer as he transitions from the stillness of the past into the speeding present.  Time is a smear of paint upon a jacket.  Now time is speeding up.  Now Meaningful Use is marching through its measures, EHR venders pop up like mushrooms after rain and David looks upon it all to judge safety and quality of systems.

As David left the Mobile Health Summit with his Jacket on his back, I saw him from a distance.  From a distance the patient head looked less like a head resting on a pillow and more like an eye staring back at me.  Yes, there is an eye in HIT.  It is the Patient view. Thank God, David has that view firmly in mind.