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

November 28, 2012, 6:32 am

≫ Next: The Walking Wall

≪ Previous: The Sleeper

$

0

0

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 Walking Wall

November 30, 2012, 3:56 am

≫ Next: Partnership for Patients a bed time story

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

$

0

0

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.

Partnership for Patients a bed time story

December 2, 2012, 4:46 pm

≫ Next: "Root Certificate" at ONC Annual Meeting 2012

≪ Previous: The Walking Wall

$

0

0

Every night as my six-year-old son Isaac goes to bed, we say a prayer that he created at the age of 4.  He also designed the way we say it.  We must take turns.

(I am in red and he is in blue)

Thank youGod forbuildingusandlovingusandcaringforus,A-men.

But before we can say our prayer, he wants me to tell a story.  He wants a happy story.  He is very clear about this.  Not a story with a happy ending, no he wants a happy everything.  He says, “Mom, it must have a happy beginning, middle and end.”

I used to try to reason with him.  I would talk about rising conflict, plot, antagonists and protagonists.  He would look at me sadly and I would remember he is 6 years old and for half of his life he has had no Father and Mommy travels a lot for work.  So, I would tell a happy story.  A day where everything goes right and we go to sleep feeling loved and cherished.  It might not have much of a plot but I think so many patients would be happy with such story.

I have painted over 200 paintings in the last year and so many of them are sad paintings.  Many professionals who work in healthcare ask if I ever paint happy pictures. I respond, “Yes, sometimes patients tell me a happy story or I attend a conference that truly embraces us.”

Yesterday was a happy day. 

It was the Partnership for Patients 6^th Quarterly Meeting: Authentically Engaging Patients and Their Families to Amplify, Augment and Accelerate Progress.  The meeting was held in the offices of the National Quality Forum.  I painted this painting: “Organic Change.”

And this is a happy story.

Once there was a land cared for by people who wanted to make the world a better place and a man named Paul McGann and a man named Dennis Wagner led them. 


They wanted patients to live a good life and they worked very hard in a castle called CMS.

Occasionally these people would make a mistake while reaching out to those who had been harmed, but they never gave up and always tried to do a better job listening and helping others.  They worked with an amazing woman named Teresa Titus-Howard who went halfway across the kingdom to meet with patients.  Some of the people who worked at CMS had been doing the same things the same ways for so long that sometimes they stuck like statues or like the Tin Man in the Wizard of OZ.  The people in charge of this land had so much work to do they hired knights and ladies from other lands to help. 

The knights and ladies of Weber Shandwick offered their assistance.  The lovely lady Katherine Siedlecki, ladyJennifer McCormick and lady Karen Oliver and lady Lauren Tate , led the team.  They were not used to the customs of many of the patient communities and at first it was hard to understand each other.  Butthey worked hard to explain the patient views to the kind folks at CMS.  

They worked hardto explain the CMS strategy to the patients and communication grew like a flowers grow and the reaching vines began to connect with distant communities.

So people of CMS and ladies of Weber Shandwick invited everyone to a meeting.  

We sat at round tables because 
no one was more important than anyone else.  

At every table were patients and partners sitting in harmony.   I painted their tables as trees.  Some people wondered at that!  

What messy chaordic tables!  

But they were the best kind of tables for this meeting because they represent organic change.  Debra Ness from National Partnership for Women and Families was first speaker and she said we will get change faster is we include patients at the table.  The morning part of the meeting was formal and those people who were a little stiff from years of doing the same thing felt very comfortable during the morning.  The afternoon was an open space or an unconference session and even though some people creaked to move so much everyone did it without complaint.

I was glad to see John O'Brien at the table.  He works at the at CMS and he invited me to the first meeting of Partnership for Patients in the summer of 2011.  At that meeting I was the only patient in the room.  
 John is a kind man with a background in pharmacy he tries very hard to help patients.  In this painting he looks attentively at the patient at the podium while wearing his pinstripe suit and his dashing bow tie.

He sits beside a pharmacist who is trying to help patients with their pills and does not want to waste precious time when patient education could occur.

On John's other side an elderly patient sits beside a small child.  They represent patient populations that often have little voice in offering opinions on their care.

Finally, across from John a housekeeper lifts her mop and bucket, happy to be included at the table.

There were patients, patients everywhere!   I am sure if I try to name them all I will miss a few, so hopefully someone will help me in the comment section: Evelyn McKnight, Lisa Morrise,  Marjorie Mitchell, Helen Haskell, Pat Mastors Lori Nerbonne,  Armando Nahum, Martin Hatlie, Chrissie Blackburn, Becky Martins,  Beth Waldron, Regina Greer Smith and Knitasha Washington were seeded throughout the crowd and came from many different regions in the US.  I depicted them around a table each holding the parts to a car. One was holding the tire, one a chassis and even though she was not at this meeting I added Sue Sheridan from PCORI holding a steering wheel.  So many times in the past campaigns each held a little part of the solution but no one knew what the other organizations were doing, but here we were coming together. Patients were wanting to speak at the HEN's and I reminded the CMS folks about the work of Chuck Denham, TMIT and SpeakerLink.  Many patients were listed on SpeakerLink that could speak out nation wide.

When we began the unconference format, the group near me spoke about how some patients would do better if they could only be with their pets.  So a little dog joined the painting.  Some of the participants flew from group to group at the unconference and so I painted a swarm of pollinating bees. 

As the meeting closed we began to talk about the name we call ourselves.  
Are we advocates, advisors or activists?

Do we claim a different name or take the name we are given and twist it into the title it needs to be?

Is A for amplify, augment and accelerate? Or is it merely Alpha, the beginning that will lead us toward a glorious end? It leads us to a future where we can reach our goal of eliminating harm and embracing happiness.

Here is a happy story.  

A story where a patient stands at the podium, and speaks from the waiting room to the boardroom.  Patients, as a Johnny Appleseed,  seeding a future where we all sit around the table.  We all have access to knowledge once forbidden.

Some attendees called the first meeting of the Partnership for Patients an Altar Call.  This meeting was one better. It was the Alpha and Omega.  Patients and Partners, more than the sum of its parts.  

But I cannot say it had a happy ending yet, 

because we are still living the story.

Good night.  God bless.    

"Root Certificate" at ONC Annual Meeting 2012

December 12, 2012, 5:19 am

≫ Next: Break Out Session at AMIA

≪ Previous: Partnership for Patients a bed time story

$

0

0

This week is one of my wilder ones and I will wear many hats.

On Monday I worked at the toy store Barstons Child’s Play. I got into several conversations that compared the advances in toy technology to advances in medicine. Throughout the morning, I continued to help people that I have helped for 18 years. The holiday season a Child’s Play can be hectic, but there is a joy to seeing faces that are missed.  For many of our clients are grown now, yet their parents come back at this one time of year.  This is our annual meeting and it is joyful.

But Tuesday came, away went my role as a toy advisor.  I grabbed my brushes and paint and rushed to day one of the ONC (Office of the National Coordinator of Health Information Technology) annual meeting 2012.  When I arrived they had a hard time finding my nametag.  Was I a speaker?  Well, yes but not today.  A stakeholder?  In my opinion a stakeholder is a title for Buffy the Vampire slayer.  Finally they found my tag in the press section of nametags. 

This day was a pre-meeting day and sessions focused on various topics.  I arrived late as I also wear a Mom hat and had to get my kids to school.  Since I was late, I could not attend the State HIE morning session it was standing room only. 

I walked further down the hall and saw there was plenty of space in the workforce development session.  There I set up my easel and began to paint “Root Certificate.”

In this painting a graduate is walking on the path to her future.  In front of her is a sign: HIT ahead.  She has taken many courses in informatics, but will she find a job?  Many of those on the workforce panel complained about the lack of access to work experience on vender systems for new graduates.  In her hand the graduate holds a hothouse flower.  This poinsettia is lovely but can it survive the environment outside the walls of academia? 

Beside the graduate a provider holds a light bulb with a seed inside.  This is a slide reference from a speech by Jon White from AHRQ.  What flowering ideas are we growing?

Soon we broke for lunch and a few brave souls came over to the easel to see what I was painting.  One lady seemed a bit confused, she said, “I thought you were painting this session.” I suppose she was thinking I painted like an artist in court.  I said, “I did paint your session, but I use symbolism and allegory to make a point.”

Next I set up in the State HIE room.  Keith Boone and his teen daughter Abigail came by and asked me to attend the ABBI session later that afternoon.  I said I would love to attend a session focused on the Automating Blue Button Initiative.

After the lunch break people began to stream in the State HIE room.  I had a chance to speak with presenter Brennan O’Banion from the Kentucky HIT Exchange.  I also got a chance to talk briefly with presenter Carol Robinson, Oregon State Coordinator, HIT.  If you have not gotten to meet Carol, you should really make a point of doing so.  She is a firecracker.

Ross Martin was the moderator.  This was his last official responsibility working for Deloitte and he was amazing.  He was also wearing his Walking Gallery jacket that depicted his lovely wife Kym dancing before a background of cancer cells.  A fight she once fought and fights again this day.

As the panel spoke of adoption and the role of HIT, I began to paint the landscape of the acronyms we hear each day. 

Soon Abigail can to help me carry supplies to the ABBI meeting.  We walked through corridor after corridor; soon we came to an out of the way room filled with wonderful people.  The CMS innovators were there as was Claudia Williams, Lygeia Ricciardi, Damon Davis, Peter Levin and Farzad Mostashari.  I set up in the back and continued to paint.

Farzad shared with us the story of his Thanksgiving.  After the meal was finished, Farzad asked his parents if they would like to see their blue button data.  As they were on Medicare, Farzad was able to log on and get the download in its raw form.  Then he remembered the presentation by Bettina Experton about I-Blue Button app by Humetrix.  So he called her on Thanksgiving.  She answered his questions and Farzad used i-Blue Button for his family.  The next day his father’s eye hurt.  They could have gone to ER but Farzad knew full well the chance of seeing an on call ophthalmologist in the ER on the day after Thanksgiving was slim to none.  So they used ZocDoc and were able to get an appointment that morning.  When Farzad’s dad saw the doctor he was able to bring up his medical record on his smart phone because of i-Blue Button.

That was an amazing story and I painted it into the picture on the back of our graduate’s regalia.  There the blue button acts as a dinner plate with a place setting of a knife, fork and spoon.  Prepare to feast upon data.  It could change your life.

Standards and interoperability was also discussed at the ABBI meeting.  So HL7 entered the picture.  Then discussion moved into security and the painting was named “Root certificate.”  Soon a friend of mine named Patrick Grant came to the meeting.   I met Patrick at the Learning Health System Summit in Washington DC back in May.  He is working on creating a patient data access co-op.  He flew all the way from Florida to meet the amazing minds at the ONC meeting.

Soon it was time to pack up my paints and brushes and get my son from school.  I was so glad to have a chance to attend the annual meeting.  The folks at the ONC shine hopeful and bright.  They are planting seeds and growing flowers and it is our job to make sure those flowers survive in the often-harsh reality of the healthcare landscape. 

Break Out Session at AMIA

December 13, 2012, 8:45 am

≫ Next: The Care and Cleaning of your Walking Gallery Jacket

≪ Previous: "Root Certificate" at ONC Annual Meeting 2012

$

0

0

On Wednesday, December 12, I attended AMIA’s (American Medical Informatics Association) 7^th Annual Invitational Policy Meeting: Health Data Use, Stewardship, and Governance: Ongoing Gaps and Challenges.  The meeting began at 7:30 am and I arrived closer to 9:00 am after getting my two sons off to school. 

When I arrived the speakers were just finishing up an over-view of AHRQ (Agency for Healthcare Research and Quality) activities.  I joined in the twitter stream and was pleased to see the AMIA handle actively tweeting.  E-Patient Dave was the king of the comments and I was able to get a quick snap-shot of what had happened thus far by reading the stream backwards.

Soon we were told we would go to break out sessions based on the dot color on our nametags.  I knew a couple of the people in my session but fellow gallery members Dave deBronkart, Deven McGraw, Ross Martin and Josh Rubin were in other sessions.

So I began to set up my easel in the Green Dot Room and watch folks look at me with quizzical stares.  Soon people began to file in and take their seats around the U-shaped table.  I began to paint “Break Out Session.”

I must admit my painting was affected not just by the dialog in the room but also by prior experience with AMIA.

I was glad to be invited to this event because I had not heard much from AMIA since 2010.  Earlier in this fall I had been asked to attend the AMIA Conference event in Chicago, but I had already made plans to present in Detroit at a TEDx event.  These two invitations were my only interactions with the AMIA organization since presenting at their meeting in Washington, DC in the fall of 2010.

You see I was the patient on the panel at an educational session that year organized by the amazing Lindsey Hoggle.  I was the patient, Ted Eytan was the doctor and Josh Seidman represented the view of the ONC (Office of the National Coordinator of Health Information Technology.)  Our moderator was Rita Kukafka, Associate Professor from Columbia University. 

A couple of very important things happened at that meeting. 

If you have ever seen me speak, you probably have seen a deck full of paintings.  I think pictures communicate far more deeply than text for many people.  I try to always present with a picture-filled slide deck so my words can be augmented in this way.  But I had been told early on our panel presentation would not be using slide decks.  At some point that changed with me being none the wiser.  When I arrived to speak both Josh and Ted had decks ready to go.

I whispered to Ted that I had no deck.  Ted rapidly pulled up my slideshare account and began downloading a short deck from my past presentations.  While I stood up to present it was just finishing download and it was ready to use by the time I finished my opening remarks.

It is amazing what you can accomplish using technology and working with friends.

The second important thing that happened was we were exposed to an extremely paternal attitude toward patients that was mind-blowing.  Ted, Josh and I found ourselves at odds with our own moderator and a great deal of the crowd.

Sooo… going into this meeting, I must admit a bit of trepidation.  Upon responding to the invitation, I told the organizers I would want to paint on site.  They seemed to not quite understand what that meant, so I wrote a post entitled “Why I Paint on site” as an explanation.

I took part in the morning discussion while painting a brick wall.  Ever heard that phrase beating your head against a brick wall?  At times that is how I felt as my worldview crash against the entrenched philosophy regarding patient engagement that was espoused by many in that room.  I also remembered so many years ago the fears of the brick and mortar bookstores as they saw online sales rapidly encroaching.  I heard a great deal of the same kind of language in this room as I heard at bookstore conferences in the 1990s.

But this was a breakout session so I smashed a hole through the wall.  I shaped the hole like an anvil.  One member of the AMIA team even asked about the hole.  I told her about the anvil shape.  She said, “I am sorry I don’t remember, is the anvil the one you pound with or you pound on?” I responded, “AMIA is the anvil, the one getting pounded.” Right now AMIA is in an anvil time; so many forces in this new world of healthcare are pressing upon it.  

That is all the painting I could finish in the first breakout session. When I heard that our report out team would be creating a slide deck, I offered to email pictures that would correspond with their text including the one I was working on.  As it was not finished I added a question mark to the painting. 

I poured through the photo cache on my iPad and sent 10 emails to Ms Thorpe who was creating the deck.  Then I started getting failure to send messages as her work email considered my images spam.  I told her of the problem, she gave me her personal email.  I repeated the entire process.  I told her when I finished. She responded there would be no time for pictures as they had spent the entire lunch period on text and they would need to present in ten minutes and her computer was not hooked up to WiFi.

I sighed and thought of Ted. 

He had done similar work two years ago in less than 5 minutes.  I attend so many venues where organizers ask, “How can we better communicate with patients?” Then presenters create complex text-filled decks that list things like plain language and visuals but don’t actually incorporate them.

In the afternoon breakout, I continued to paint.  We were talking in this session about a vision of the future in 5-10 years.  I painted a man in the orange uniform of a prisoner with those numbers emblazoned upon his chest, because that was the level of excitement in the room.  

I want to talk about 5-10 years out, Exclamation Point!  

For patients this could be a great new tomorrow.  A tomorrow with peer review having a new meeting, as in approved by the patients in patient communities like ACOR or Patients Like Me.  A future where Blue Button has been widely adopted and folks are sharing data and utilizing third party apps.  A future where the default assumption is not that patient’s want their data private to the point of personal inaccessibility, but instead an understanding that it is their choice to share that data or not.

Also in the anvil hole a father and his daughter stand preparing to step through.  A female patient turns her back to the viewer and stares into the abyss.  We are headed to the future, but not equally.  Some will look forward and some will look back.  

Around these figures graffiti tags mark the wall.  To the right we see AMIA itself.  This logo with it’s futuristic styling so new that the paint runs down the wall. Below this is a key with a wifi signal free to use and the phrase please copy me. Below that we see Big Data and ponder what that means. 

To the far left above the word Patients 2.0 is scrawled upon the bricks for the patients of the future are coming.  Below that the eye in HIT has a blue button for an Iris: the opening that allows us to see.  Finally scrawled below that is the word standards.  Which standard?   I think we have yet to decide.

If you look to the right in the distance there is a parking lot.  This space is for the topics that did not fit within the break out session parameters. I hope that they will get to drive into another discussion.

This morning I was unable to attend day 2 as my eldest son is ill.  Josh Rubin emailed me from the session to tell me that they showed the original picture from session one with the question mark.  They were unsure of the title…

I posted the finished picture yesterday on Twitter when I left a little before 5:00 pm with it’s title, I just don’t think anyone in my session was following the twitter hashtag for #AMIApolicy.  Which is sad because if you want to meet patients were they are, Twitter is a good place to start.

The Care and Cleaning of your Walking Gallery Jacket

December 21, 2012, 5:45 pm

≫ Next: Regina Holliday's Medical Advocacy Timeline

≪ Previous: Break Out Session at AMIA

$

0

0

 If you have joined The Walking Gallery you are probably familiar with this request:

“Send a business jacket. Please do not send jackets made of seersucker, corduroy, knit, denim, leather or stretch fabric, as they are hard to paint on.  Also this is a business jacket on purpose, we are painting on the “uniform” of the conference attendee.  Fabrics that work well are poly-blends, linen, cotton and wool. Also you might want to by a jacket a size larger than you usually do as the painting will stiffen the back and make it harder to close the buttons.”

So you sent me, or one of the other artists, a jacket and wore it to conference after conference and now it needs to be cleaned. 

The only problem:  There is a painting on your jacket!  Now the painting itself isn't really the problem.  If you have ever stained your clothes with acrylic you know how hard it is to get the paint out.  The problem is the fabric.  Some fabric will bend and warp around the painting if you try to clean them.

Wash It

If your jacket is polyester or a mostly poly blend you can probably wash it on the delicate cycle with cold water and lay flat to dry.  Many of the women’s blazers are poly blends; very few of the men’s jacket are made of this material.

If it is a cotton poly, or stretch cotton, you can hand wash, pat dry and dry flat.  Again this applies mostly women’s blazers.

My jacket is poly and I have washed it at least 12 times with minimal fade of the paint.

Spot cleaning.

Men’s jackets are often made with natural fibers and cannot be hand washed.  Some gallery members have spot-cleaned their jackets with Dryel.

Also Lysol air freshener applied to areas of odor can help keep your jacket nice.

Ironing.

You can iron your natural fiber gallery jacket.  Just place a towel on top of painting when you iron in that area. Do not let the iron touch the painting directly; it will melt it. If the jacket itself is not wrinkled and the painting is sometimes you can just warm the painting with a blow dryer to release the wrinkles.

Dry Cleaning

This can be challenging.  You might want to go to a pro shop that handles vintage clothing.  Some of the solvents used in dry cleaning are pretty corrosive. A drycleaner who works with vintage garments should be able to clean with steam and few harsh chemicals.

But you could be like gallery member Ted Eytan who threw caution to the wind.  He just dropped it off at his cleaners without telling them about the painting.  It has been cleaned several times without harm.

Good Luck!  And please share your cleaning tips in the comments section with the rest of the gallery.

Regina Holliday's Medical Advocacy Timeline

December 28, 2012, 7:04 pm

≫ Next: #HIball

≪ Previous: The Care and Cleaning of your Walking Gallery Jacket

$

0

0

I began this timeline with the help of Cindy Throop in the fall of 2009 due to some negative comments on posts about our story. Apparently some folks that thought I was a fiction created to promote health reform. I assure you our story is all too real.   This timeline was originally hosted on Open Health.  e-Patient Dave was looking for the link this week and when he discovered it was gone, found a cached version via the way back machine archive.

Although I was so happy there was a cached version, I thought the Timeline could use an update.  So here it is...

Regina's Medical Advocacy TIMELINE: Before

May 27, 2008 Frederick Allen Holliday II joins Facebook
September 14, 2008 Regina joins Facebook
March 25, 2009 Fred hospitalized 1st hospital
April 18, 2009 Fred tells Regina to go after them

Regina's Medical Advocacy Timeline: The First Year

April 22, 2009 Fred transfers to 2nd hospital
April 29, 2009 Dear Friends and Fellow Fighters, Regina Holliday

May 4 2009 Regina Joins Twitter
May 5 2009, Regina speaks with e-Patient Dave and his doctor 
May 6 Regina begins to blog
May 6, 2009 Dear Friends, Business Associates, Special Ed/Educational Contacts, &  Artists, Regina Holliday
May 8, 2009 Fred transfers to rehab
May 16, 2009 Fred transfers to 3rd hospital for blood transfusion
May 17, 2009 Fred transfers back to rehab
May 20, 2009 Fred transfers to inpatient hospice
May 27, 2009, Regina's attends first Health 2.0 meeting 
May 28, 2009 Is It Meaningful if Patients Can't Use It?, Ted Eytan, MD
May 30, 2009 Medical Facts Mural #1, Christine Kraft
May 30, 2009 The Medical Fact Mural is placed

June 2009 Fred performs a puppet show for his sons


June 2, 2009 Nothing Personal, Cindy Throop, The Health Care Blog
June 2, 2009 73 Cents: the idea , Regina Holliday
June 10, 2009 Regina and her family move to a new apartment 
June 11,2009 Fred is sent home for home hospice

June 17, 2009 Frederick Allen Holliday II dies 

June 17, 2009  At Capitol Hill, Health Care Debate Begins
June 21, 2009 The Battle Begins, Regina Holliday
June 23, 2009 Regina begins painting 73 cents
June 29, 2009 Regina attends first medical conference: Connect Seminar 2009, Washington DC (at 34:37 Regina ask Aneesh Chopra a question)

July 14, 2009 House Unveils Health Care Overhaul, Fox 5 News (link no longer available)
July 21, 2009 Regina Paints Her Sorrow and Her Hopes, Trisha Torrey, About.com Patient Empowerment Blog
July 23, 2009 The High Costs of Health Care, Senate Press Conference

July 30, 2009 The Abuse in the Medical System, Regina Holliday

August 1, 2009 Art as Advocacy, Liz Geltman, The Baltimore Examiner
August 6, 2009 In a Plea for Health Reform, a Widow Picks Up Her Paintbrushes, Dana Milbank, the Washington Post
August 10, 2009 Painting a Mural to Fix Healthcare, BBC World News
August 13, 2009 DC Mural Makes Health Care Statement, Fox 5 News (link no longer available)
August 18, 2009 Widow Uses Mural To Portray Husband's Death And Health Care Perils, WUSA9 (link no longer available)
August 18, 2009 Widow Paints Husband's Death, CNN
August 20, 2009 Healthcare Reform Campaign, CBS News
August 21, 2009 Obamas Gesundheitspolitik (link no longer available), ARD German Television
August 22, 2009 73, Cents a New Monument to Patients in Washington DC, Ted Eytan, MD
August 29, 2009 Malen gegen das sinnlose Sterben, Thomas Spang
August 31, 2009 Painting for Health Care, Voice of America
August 31, 2009 Woman Paints Mural Depicting Husband's Fight for Health Care, ABC 7 WJLA (link no longer available)

September 9,2009 Freds Vermächtnis, Berliner Zeitung (link no longer available)
September 10,2009 Jamie Crausman and Ben Crosbie's short film of installing the Medical Facts Mural  

September 12,2009 Regina Holliday’s mural is in the BMJ, e-Patient Dave, e-patients.net
September 12,2009

September 24, 2009 The Death of Fred Holliday and the Art of Health Care Reform, Rahul Parikh, MD, The Faster Times
September 25, 2009 Dark Willow and "73 Cents", Regina Holliday
September 30, 2009 Regina finishes the painting "73 Cents"
September 30, 2009 Mural Shows Family's Health Care Hell (link no longer available), Andrea Stone, AOL News

October 7, 2009 The Fight of Her Life: Washington, DC, Woman Crusades for Medical Records Access, Rob Senior, Advance for Health Information Professionals
October 8, 2009 Turning frustration into art: widow paints murals to push for health care reform, Claritza Jimenez, American Observer
October 20, 2009 73 cents dedication

73 cents dedication from Jamie Crausman on Vimeo.

November 2, 2009 We Need More Nurses mural finished
November 9, 2009 A Widow Paints a Health Care Protest, Joseph Shapiro, NPR
November 10, 2009 “Beyond the PHR: Promoting participation at all levels atall levels: internal and external: patient, family, community.”  Panel speech, 5^th World Healthcare Innovation and Technology Congress, Washington, DC
November 11, 2009 Regina Holliday: A Perfect Storm, by Melissa Dey Hasbrook
December 11, 2009 Medicine in the Matrix, Regina Holliday (The first art jacket)  
December 15, 2009 What part of "Give us our damn data" do you not understand? , ePatient Dave deBronkart, epatients.net

January 14, 2010 Patients demand: 'Give us our damned data', Elizabeth Cohen, CNN
January 15, 2010 Regina presents her first ignite speech (first powerpoint with the help of Cindy Throop) at Social Justice Camp DC
January 17, 2010 Todo por Obama, (link no longer available) Marc Bassets, Magazine
January 31, 2010 Rosa Parks in Health Care, Regina Holliday

February 24, 2010 Cancer Doesn't Care If You Have A 'Real Job' Or Not, Regina speaks at Melanie's March in Washington, DC
February 27, 2010 The mural at the ONC meeting, Regina Holliday

March 13, 2010 Children Standing up for Healthcare Reform, Regina Holliday



March 18, 2010 Wheals on the Bus, Regina Holliday
March 19, 2010 Health Care for America Now Interview

April 8, 2010 The Man Who Lived, Regina Holliday

April 12, 2010 Regina Holliday's Mural: a presentation by Jessica Baroody 

April 15, 2010 Access to the Electronic Medical Record (Testimony to the Office of the National Coordinator for Health Information Technology), Testimony by Regina Holliday
April 21, 2010 Patient access to e-record urgent, HHS panel told, Mary Mosquera, Government Health IT
April 26, 2010 "Wonder Twin powers, Activate!", Regina Holliday

Regina's Medical Advocacy Timeline: The Second Year

May 4, 2010 Data Cloud, Regina Holliday (the 4th art jacket)
May 17, 2010 "Apples to Apples" by Regina Holliday, Regina Holliday
May 17, 2010 Video: Regina Holliday Painting HCAHPS by eidolonfilms

HCAHPS Visualization from Eidolon Films on Vimeo.

June 2, 2010 HHS Community Health Data Initiative launch (Roni Zeiger wearing jacket painted by Regina Holliday at 1:39:12)

June 3, 2010 “Is our Savior high within the Data Cloud?”  Keynote Speech, Cerner Meaningful Use Summit, Kansas City, Missouri first powerpoint, first national speech
June 7, 2010 Regina's presents on a panel at Health 2.0: Can Health 2.0 Improve EHR Adoption?
June 7, 2010 “Patients 2.0” Panel Speech, Health 2.0 Goes to Washington, DC
June 8, Regina joins slideshare and posts the presentation Patients 2.0

Patient 2.0 from Regina Holliday

June 10, 2010 Federal Officials, Patients Have Bigger Presence at Conference Kate Ackerman, iHealthBeat
June 24, 2010 Regina Holliday speaks at National Partnership for Women and Families Annual Luncheon



July 13, 2010  Regina speaks at Stage One Meaningful Use Announcement at HHS Department of Health and Human Services, Washington, DC

July 13, 2010 Meaningful use, cats, and dogs, Matthew Holt, The Health Care Blog
July 22, 2010 Let's change the Face of Health Care - Regina Holliday, Health 2.0 STAT
July 23, 2010 "Where do you come in? I need walls." - e-Patient Ephemera, Washington, DC, July 29, 2010, Ted Eytan
July 29, 2010 “e-Patient Ephemera” Guest Artist, Clinovations Art Gallery Show, Washington, DC
July 31, 2010 "Give Us Our Damned Data" Causes the First Meltdown in Awhile, Trisha Torrey, Every Patient's Advocate

August 2, 2010 The Forest, My Trees and a Major "DUH!" Moment, Tricia Torrey, About.com

September 2, 2010

“Meaningful Use, Patient Access and Mask of the Red Death” Keynote, Medstar CMIO Boot Camp, Columbia, Maryland

September 3, 2010 My Second Encounter with Fred Holliday's Medical Record, Ted Eytan
September 23, 2010

“Thoughts on Medicine and Social Media” Panel Speech, Disruptive Women in Medicine, Washington, DC

September 25-27, 2010

“The Worst Pain Imaginable” Speech and the first time Regina paints onsite at a medical conference, e-Patients Connections from Kru Research, Philadelphia, Pennsylvania 

September 27, 2012 Pixels and Pills Interview

October 7-8, 2010  “Bridging the Great Divide” Onsite Painting Speech, Health 2.0 Conference, San Francisco, California

October 12, 2010

“It Doesn’t Have to Be This Hard: Thoughts on Patient Access to the EMR” Panel Speech, Cerner Health Conference Kansas City, Missouri

October 18, 2010

“The Meaning of Meaningful Use” Panel Speech, OA Systems Seminar, Chicago, Illinois

November 7-10, 2010

“73 Cents” Art Explanation Lecture, Kaiser Permanente Executive Leadership Conference, Washington, DC

 November 30- December 2, 2010

“Putting the H in HIT” Panel Speech, CMS Quality Net Conference Baltimore, MD

December 5-6, 2010

“Patient Centered Care” Onsite Painting explanation blog by Regina, IHI Patient Activist Summit, Orlando, Florida
December 16, 2010 Remember Your Hollidays, a video by TMIT
December 29, 2010  “Grieving Widow Sends Political Message Through Art,” by Julie Taboh, Voice of America 

January 21-22, 2011 Social Justice Camp II, Regina organizes ignite speeches and an unconference

March 11,2011 Keynote speech and onsite painting at Bellin Health, Green Bay, Wisconsin
March, 16 2011 "The Cake is a Lie" Regina explains the painting "The Menu Set"

March 30, 2011

“Medical Advocacy Mural Project” Lecture, Media Active Festival at Towson University, Towson, Maryland

April 11-12, 2011

“Just A Girl” Keynote Speech and Onsite Painting, Oklahoma Foundation for Medical Quality Rural Hospital Conference, Oklahoma City, Oklahoma

 April 27-28, 2011

“Just A Girl” Panel Speech and Onsite Painting, Microsoft Connected Health Conference 2011, Chicago, Illinois
Interview by Liza Sisler

April 29,2011 The Walking Gallery of Healthcare Begins

Regina's Medical Advocacy Timeline: The Third Year

May 4, 2011 Rosetta Stone a Jacket for Lygeia Ricciardi (the 1st official gallery jacket, 6th art jacket) 

May 5, 2011 Microsoft HealthVault: Regina Holliday's Journey to Empower Patients
May 2011-June 6, Regina and other artists complete 54 jackets for The Walking Gallery 

June 1, 2011

“Welcome to the Rabbit Hole” Keynote, Cerner Developers Conference Kansas City, Missouri

June 7, 2011, The Walking Gallery gathers in Washington, DC

The Walking Gallery from Eidolon Films on Vimeo.

“Welcome to the Walking Gallery” Kaiser Permanente Center for Total Health, Washington, DC 20008
(jackets 1-162)June 13 -14, 2011

“Shining a Light in the Darkness.” Keynote and Onsite Painting, QUEST National Meeting, Nashville, Tennessee

 June 16, 2011,

“Little Miss A-Type Personality,” Panel Speech and onsite painting, Partnership for Patients Kick-off Meeting, Washington, DC
"The Partnership with Patients: a Call to Action for Leaders" by Charles Denham, Journal for Patient Safety

 June 28- July 1, 2011

Keynote and Onsite Painting, 2011 Client Symposium for Avatar International, Orlando, Florida

Wikipedia entry on Regina Holliday 

July 13-14, 2011

Plenary Luncheon Speaker and Panel Speaker, Office of the National Coordinator of Health Information Technology Department of Health and Human Services Meeting on Patient/Consumer Engagement with Electronic Health Records, Philadelphia, PA


July 23, 2011 work on Speakerlink begins: The Patient Speakers

August 18, 2011

Participant of the panel on TMIT Patient Speakers Portal Webcast, Laguna Beach, CA

August 20, 2011 Keynote, REC Beacon Community Meeting, Puerto Rico

September 20, 2011

Panel Speech, AHRQ Annual Conference Bethesda, Maryland

September 25-29, 2011
Health 2.0 Meets Street Art and the Gallery Walks Again

Panel Speech and Onsite Painting at Health 2.0 San Francisco, CA
The Rainbow Initiative Puppet Show

September 29-30, 2011

The Power of the Story in Patient Art, Keystone Beacon Community, Geisinger Health in Harrisburg, Pennsylvania

October 7, 2011

Mission Statement, Speech and on site painting Hendricks Health, Abilene, Texas

October 11-12, 2011

The Sharp Experience, Keynote speech and on site painting at Sharp HealthCare Quarterly Leadership Development Session, San Diego, CA 15,000 attendees

October 18-19, 2011

Open and Transparent, Keynote Speech and on site painting Adventist Health Sacramento, CA

October 25,2011


Keynote speech at Kaiser Permanente Southern California 8th Nursing Quality and Innovation Conference "Creating the Extraordinary Care Experience: The Brush is in Your Hands” 600 + administrators

November 1, 2011

“Trick or Treat” Keynote Speech OCHIN 2011 Learning Forum, Portland, Oregon

December 2011 Speakerlink Public Launch
Regina Holliday's Speakerlink profile 

January 2012, WEGO Health Offline Crusader Award 2011

February 13, 2012

Speech in conjunction with a screening of the mini-documentary “73 Cents”

Fast Forward Health Track at Social Media Week, New York, New York

73 Cents: TRAILER from Eidolon Films on Vimeo.

February 16-17, 2012

Keynote "The Sycamore Tree: a patient view through the leaves of a life story."

Avera Health Care Forum, Sioux Falls, South Dakota

February 23, 2012

“Leading From The Future: From Doctor Strangelove to Doctor Who” Keynote HIMSS12 Leading from the Future Las Vegas, Nevada
February 23, 2012 Interview HIMSS 12 with Perficient's Liza Sisler

February 28, 2012

“Measure for Measure” Testimony before NCVHS Silver Spring, MD

Measure For Measure from Regina Holliday

March 26^th, 2012

“What does art have to do with medicine?” Healthcare Experience Design hosted by MAD POW, Boston, Massachusetts

HxD 2012 - Regina Holliday - What does art have to do with medicine? from HxD Conference on Vimeo.

April 4, 2012 “A Story Before Dying” Keynote speech and on site painting Maine Quality Counts, Augusta, Maine

April 5, 2012 “Links in a Chain of Hope” Keynote Speech and onsite artist, Linkage Conference in Ohio

April 11-13, 2012 TEDMED onsite artist Washington, DC

April 16, 2012“The Doctor Will See You-If You’re Quick,” Shannon Brownlee, Newsweek, 16 April 2012. 

April 17-18, 2012 "The Moral Energy"Keynote Speaker and onsite artist, Arkansas Foundation for Medical Care 19^th Annual Quality Conference
April 24, 2012 "Patient Voices at TEDMED 2012," By Stacy Lu TEDMED blog

April 25, 2012 “The Power of Long Stories,” Keynote Speaker and onsite artist 5^th Annual Patient Safety Symposium, Columbia, South Carolina

April 27, 2012 Panel Speaker onsite artist, Patient Safety and High Performance Leadership Summit: Issues in Governance, National Collaborative, and HIT, National Press Club, Washington, DC

Regina's Medical Advocacy Timeline: The Fourth Year

May 5, 2012"Will Regina Holliday Become Health Care's Rosa Parks?" by Michael Millenson, Forbes
May 6, 2012 Rally to Support Patient Data Access by Regina Holliday
May 7 -9, 2012 ICSI Colloquium, Minneapolis, Minnesota
May 17, 2012 Learning Health System Summit onsite painting "Chaordic"

May 18-20, 2012 Onsite artist Health Foo Camp, Cambridge, Mass
May 19-25, 2012 The Orchestra: a painting for AHDI and Medical Transcriptionists Week 

May 30, 2012 Onsite artist, Avatar Annual Meeting, Orlando, Florida

June 4, 2012 Panelist Patient Access Summit White House Conference Center, Washington DC

June 4, 2012 The Walking Gallery, Kaiser Permanente Center for Total Health, Washington, DC
(jackets 163-220...)

June 5-6, 2012 Onsite artist, HDI Health Data Palooza III, Washington, DC

June 6, 2012“ Mr. Obama, Tear Down this Wall,” by Dave Chase, Forbes, 6 June 2012. 

June 7, 2012 Panelist on ONC Roundtable on Patient Engagement in Cancer Care: Using Technology to Improve Communication and Care Coordination, Washington, DC

June 10, 2012 “Walking Gallery’ Tells Medical Stories” by Vanessa Small, The Washington Post
June 13, 2012 “Patient Perspectives: Regina Holliday” by Rebecca Aris, pharmaphorum 

June 13, 2012  Presentation at CMS on Partnership with Patients, Washington DC

June 13, 2012  Speech before Washington Home Hospice, Washington, DC

June 16, 2012 "Regina's Art: I Don't Have the Words," Dan Dunlop

June 20, 2012 “Advocacy Group: 26,000 Die Prematurely WithoutHealth Insurance,” Shaundra Young,  CNN Health

June 29, 2012 Congressional Briefing on Hospice Care, Washington, DC

August 1-3, 2012 Keynote HIC 2012 Sydney, Australia 

The Writing on the Wall from Regina Holliday

August 2012, The Walking Wall: 73 Cents to the Walking Gallery is published by HISA
August 9, 2012 Keynote, Association for Healthcare Documentation Integrity (AHDI) Annual Conference, Indianapolis, Indiana
August 18, 2012 "Electronic Medical Records are Super Cool!" Regina Holliday and Isaac Holliday

September 9-11, 2012 Onsite artist and panel speaker AHRQ Annual Meeting

September 12, 2012"6 Uninsured: Regina Holliday" 
September 15, 2012 HealthTechHatch Patient Travel Fund Fully Funded 
September 18, 2012 Medstartr Walking Gallery Patient Travel fully funded 

September 21-23,2012 Summit Agenda at Partnership With PatientsSummit, Kansas City, Missouri 
The Conference That Felt Like a Hug 

September 27-28, 2012 Onsite speaker and artist, Stanford Medicine X 2012,Stanford, California

October 1-2, 2012 Keynote speaker and onsite artist AHIMA Annual Conference, Chicago, Illinois

October 9-10, 2012 Speaker P2 Collaborative of Western New York, Buffalo, NY
October 12, 2012 These 12 Women are Powerful Voices in Healthcare Innovation and on Twitter, by Deanna Pogorelc, MEDCITY News

October 18, 2012 Avera Nursing Conference, South Dakota 

October 24, 2012 Keynote Speaker, Korea Healthcare Congress, Seoul, Korea

November 8, 2012 TedX Detroit, Detroit Michigan

November 9, 2012 Keynote Speech eHealth Summit for all South Dakota healthcare providers and REC partners,  Sioux Falls, SD

November 13, 2012 Keynote Speaker and onsite artist University of New England, Biddleford, Maine

November 14, 2012 Speaker at University of New England, Portland Campus, Portland, Maine

December 3, 2012 Keynote Speaker, Leap Frog Annual Meeting, Baltimore, Maryland

December 5, 2012 Panel Presenter ASHP Midyear Clinical

December 20, 2012 Panel Presentation Health Innovators Gala, New York City, NY

December 20, 2012 "13 to Watch in 2013: The Unsung Heroes Changing Health Care Forever," By Leah Binder Forbes

#HIball

January 3, 2013, 9:27 am

≫ Next: Spinning the Message

≪ Previous: Regina Holliday's Medical Advocacy Timeline

$

0

0

On December 20^th I walked upon the streets of New York.

I had just checked in to my hotel room. It was small, just enough space for a bed. I changed into my Walking Gallery jacket and left for the gala. Alex Fair and folks from the NY chapter of Health 2.0 were going to sell art in the hope of help raising money for charity.

As I walked down the street, darkness fell.  Vast piles of trash bags lined the avenue. My footsteps echoed on the wet pavement people were rushing home from work and school. A big sister walked with her little sister. Then a caregiver guided a child with autism past a looming bin and passerby. I looked for the club where we were going to host the gala.

Columbus 72 was a small club sandwiched between many buildings. I went down the steep stairway into the basement of the bar.  For a night it was to become a winter wonderland. Paper snowflakes and lights filled the air and structural poles were beribboned like candy canes. Across the room, I saw Alex Fair in his winter themed red and white sweater. He greeted me with a smile and a hug.

The club was just finishing up a start up health incubator. People filled the room as I pulled out two paintings that I bought as additions to the auction.  The room was filled with the large pieces from the UN non-communicable disease summit of September 2011.  The works of multiple artists were on display and we were tweeting under the hastag #HIball.

I also brought The Walking Gallery jacket for Esther Dyson.  Esther soon showed up and I smiled as gave her the jacket. Then Brian Sivak CTO from HHS arrived.  Esther was our moderator as we talked about the future of healthcare.

I was surprised when I began to speak how a few members of the crowd were willing to be quiet. Even with the microphone it was quite challenging to be heard as the crowd drank, ate and conversed over our words. Esther and I asked people to please be quiet so others attendees could hear. Esther did a great job explaining what was going on in cutting edge health.  Bryan focused on the future of current measures at HHS.  As we wrapped the conversation, I asked the crowd if anyone would be willing to save a life.  In the few seconds of quiet after the question a few hands shot up.  I followed the question up by explaining an individual who would be an organ donor would need a care partner in New York.  If he could get a care partner he would be able to save another’s life.  I was so happy to see several people come forward and express their willingness to help.  I happy to report he now has a care partner.

Soon the art Auction began.  John M. Luke Jr. from Storage Wars New York was the auctioneer. He and I exchange some comments. I explained that I had spent my youth working in flea markets and was quite comfortable with the work of helping an auctioneer.  We worked side-by-side, I explaining the art as he began the auction process. The room was full of individuals working for start-ups, grad students and people working in health tech space. There were not a lot of high dollar folks in the crowd, so a great deal of the art was sold at affordable prices. My only concern was the loudness of the conversations in the room. I didn't think most people could hear what we had to say. I did ask them many times to be quiet and listen.  I found it so funny that adults were having trouble learning the lessons of a preschooler. We did manage to sell the majority of the art which was great in itself as the art had been in a storage locker in New York for the past year.

I also was honored to meet Walking Gallery member Wen Dombrowsky's husband whom I had heard so many wonderful things about. I took a picture of them together. I met some lovely people in New York who are working on healthcare.

 

I thank Alex Fair from Medstartr so much for us all he did to get the art out of storage, auctioned and delivered. This precious art could've been thrown away or destroyed, but was saved because of this caring and loving man.

As the evening festivities wrapped up, I left the club and went back into the New York night. I went back to my small hotel room and slept. In the morning the weather was poor. In the pouring rain and winds, I tried to hail a cab but was unsuccessful.  I went back into the Comfort Inn hotel where I was staying. The lovely front desk clerk named Penny called car service after call service. No one was taking fares.  Finally she called a driver she knew and he said he could take me to Penn Station.  I caught my train and got back to DC in time for my younger son's Christmas party at school.  I was so glad that the art gala saved some art from destruction and so glad I was able to make new friends and visit old ones.

---

Spinning the Message

January 7, 2013, 7:14 am

≫ Next: The Conference I met Gail

≪ Previous: #HIball

$

0

0

Imagine a society where your device is never far from your hand.  No matter how important you are or how low, you never go out socially without your technology.   The line between work and personal life  is hopelessly blurred. You cannot even take your kids to the park without pulling out your device and following the most recent thread.  Does this sound like our wired society in 2013?

Well, I am actually describing the world of the average woman in the Middle Ages.  Back then every woman, regardless of age or rank, was expected to fill their day with meaningful work.  So each woman would carry their spindle and distaff  (also called a rock) with them to social occasions.  Sometimes they would even gather for this purpose and it was called “a rocking” I guess the modern equivalent of that would be a “tweet-up.” It was a constant frenzy of thread creation. 

But there were times that it was considered appropriate to put down the spindle and focus on friends, family and spiritual well being.  People would “unplug” (Or would that be unlace?) during the 12 days of Christmas. 

I don’t know about you, but I see a pronounced absence of social media voices during the holidays.  Other than the occasional status update or twitter competition most folks are MIA from December 25 to January 6^th.  Perhaps that is exactly the way it should be.  Perhaps the holidays are time focus on family and friends and spin stories rather than messages in the media.

But today is January 7, Distaff Day.  Today we pick up our devices once more and we will spin the threads that will make this year.  Those threads will form the weft and warp of healthcare policy. 

2013 will be an amazing year in healthcare and patients must be in the forefront of creating that message.  I look forward to following your threads.









                                                      Photo courtesy of Ted Eytan

The Conference I met Gail

January 20, 2013, 10:47 am

≫ Next: It is 7:20 here

≪ Previous: Spinning the Message

$

0

0

Last night I was reading the book “Feelings” by Aliki to my almost 7-year-old Isaac.  It is great book that discusses emotions; sadly we do not do this often talk about our feelings in regular life. The book discusses anger, happiness, sorrow and fright. On page 30 a small girl stands slightly offstage as she fearfully looks at boy onstage performing before a crowd of thousands.  The text that encapsulates this moment is “You’re next Joanna.  Don’t be nervous.”  Isaac responded to the image by saying, “I would be nervous performing in front of so many people.  Would you?” 

“Well, Isaac,” I said. “I have spoken in front 5000 people and in rooms of only 20.  I find the smaller groups often more challenging.  But the most important thing in a speech is that you connect with someone.  Even if I only touch the lives of two or three people out of the 20 or 1,000 in a room it is worth it.  You never know what friends you will make if you are brave enough to stand up and share.”

This made me think of Gail Zahtz and the day I met her.  You might have seen Gail’s writing recently she putting out some great blog posts and is launching a new tweetchat at 1pm eastern on Tuesday called #cphc or carpool health chat.  I have been having trouble keeping up with her in creative mode.  I think I am even somewhat jealous.

See this month is January and I know something about myself in January.  I am sad.  I will be sad probably for another month.  I am always sad this time of year.  My spirit ebbs and I desperately want the energy that comes with spring and renewal.  I will plow through this time painting and doing my best to comment and to write, but life is lived as a walk through molasses.

So let us go back to May 2012, to light and life and fresh flowers.  On May 7-9^th I had the honor of attending the ICSI Institute of Clinical Systems ImprovementColloquium in Minneapolis, Minnesota.  Gary Oftedahl, chief knowledge officer of ICSI, invited me.  He joined the gallery prior to the event and I brought his jacket with me.  His jacket is entitled “The Two Paths.”  I made the two paths function both as roads and as hands in supplication.  On the left hand side, patients and doctors are working as a team.  On the right doctors are at a distance and often on a pedestal.  But there is hope.  Some doctors from both sides are reaching out to each other in open communication.  Gary liked it and told me I was free to paint in any session I wished.

As walked down the hall with my supplies I ran into Professor Brian Isetts.  I had met Brian at the Partnership for Patients kick-off in the summer of 2011, as he was a CMS Health Policy Fellow.  He was so pleased to see me and asked if I would paint the session he was moderating.  It was a wonderful presentation on medical reconciliation and patient communication.  I painted the painting “Reconciliationship.” 

This painting tells the story of when Brian met Edward and Sharon Jungbauer.   Edward was a two-time kidney transplant recipient, has had two hip replacements, diabetes, hypertension and several other conditions.  When Brian and his students met Edward he was on so many types of medication it was hard to understand what Edward was taking.  Brian and his student team helped consolidate the list and make it much more manageable. So in the painting Edward stands on the brink of a cliff.  His pills are dropping into the hands of the students as Brian the scholar orchestrates their distribution.

Whilst this is going on, Sharon is trying to help her sister.  Her sister has been sent home with poor instructions for care and is in the process of overmedication.  Fortunately Sharon realizes something is wrong and gets help.  Brian loved the painting and it currently hangs in his office in Minnesota.

On May 8^th I began the second painting, “ The Lone Nut.”  I began this painting in the main assembly hall as we tried vainly to follow Chief Technology Officer of the United States Todd Park present a keynote speech using Skype. (He was supposed to be there in person but the Office of Business and Management had recently directed a 30% reduction in the federal travel budget.)  It was painful and somewhat ironic to watch.  The audio did not sync and it was very hard to understand his presentation.  The audience made up of mostly of residents of the great state of Minnesota sat stoically through it all with only a few murmurs of complaint.   During this I began painting the stylized pencil logo of the conference.

Soon we went into sessions and I split my time between tracks 3) Patient Engagement/Consumer Experience and 4) Integrating Behavioral Health and Primary Care.  I was the only patient in the room in quite a few sessions and even though I was painting frantically, I asked a question in virtually every Q&A.  I was getting rather angry as the day wore on. 

I messaged Gail Zahtz who lived in the area and asked her to drop everything and please come to the event as I could not paint, tweet and ask questions all at the same time. 

Within an hour, she came to the conference.

I painted her Walking Gallery jacket and was going to give it to her as soon as she arrived.  Her jacket is entitled, “The Big Girl.”  Within the painting I reference the nursery rhyme, ”There was a little girl, who had a little curl, right in the middle of her forehead. When she was good, she was very good indeed, but when she was bad she was horrid.” The painting describes a scene where her teen “bi-polar” daughter hit Gail causing an injury to her face.  Gail is one of the few members of the gallery to join with a behavioral health story.  When Gail saw her jacket she cried and we hugged for the first time. 

Then we got to work.  Gail and I tagged-teamed the Q&A sessions as I continued to paint “The Lone Nut.”



The lone nut in my painting became a native Oklahoma pecan with its shell cracked.  The face of a woman of color peers out of the shell casing.  Her dreadlocks are roots and her eyes seem half open.  She is the diverse and disadvantaged population I would hear so much about in the sessions that followed.  She was the color in that sea of white faces.



Without her inclusion there is no growth or change.  She is the seed for the care of tomorrow.  

Above her and beneath the ICSI tree a few patients stand.  To the right a mother holds her child up to the tree.  He reaches out to grab a hash tag apple.  How can he learn the message of better health if it is not shared through open media? 

To her left two men stand arm in arm.   One of the presentations focused on the use of the PAM- Patient Activation Measure.  As I recently studied the ACES- Adverse Childhood Experience Study, I enquired as to whether they were using both measures to help patients.  They said they were not.  I hope they reconsider, as I do not think we truly appreciate the patient’s now without understanding their past.

To the far left of the painting a child and a patient who is suffering from cancer stand beside a tombstone.  The stone is etched with the phrase Honoring Choices.  This is an amazing campaign in Minnesota.   Honoring Choices is a documentary series.  PBS teamed with the local hospitals to create it and due in part to that work, Gunderson Lutheran Hospital has one of highest rates of completed advance directives in the nation. 

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

I presented a speech as well.  This presentation was called “Long Stories” and was based heavily on my comments on Meaningful Use Stage 2.  May was a hard month in patient advocacy. We were getting a lot of push back from entrenched interests that patient data access must be delayed.  My speech was rather fiery and passionate.  Which might have been a mistake for a conservative crowd in Minnesota.  As they stoically listened to my passionate pleas, my tempo and pace increased in an attempt to engage.  Having seen the after presentation comments, I know I did connect with a few people but for the most part was considered “over-emotional.”

On May 9^th I painted the final painting while Gail helped by tweeting.  Tom Bodenheimer, MD, MPH, FACP, from the University of California San Francisco (UCSF) did a presentation on the building blocks of care.  I based the next painting on a slide from his deck. 

 I looked at the building blocks and noticed the patient was left out.  He even remarked upon it in his speech and mentioned a future deck would need to include it.  I painted “The Care Team.”

Here the patient holds his block within his hands.  Around him are providers.  To his right a nurse embraces him.  She is a patient too.  For if you look closely at her blouse you will see all the happy faces turn to sadness, though the overall color of yellow masks it well.

Soon after finishing the painting, I presented before the crowd explaining the paintings of the last two days and even gave a humorous interpretation of the content of Todd’s Speech.  I tried to convey his amazing energy and passion, but I think I only succeeded at frightening a few people.  At the end of my presentation, we auctioned off the painting “The Care Team.” Daniel Trajano, MD Senior Director of Quality and Care Innovation at Park Nicollet Health Services won the painting.

Soon I thanked Gary for the honor of presenting.  Then I hugged Gail goodbye.  I left her embrace a little braver, a little more willing to speak of the sadness that assails us all.   

It is 7:20 here

February 2, 2013, 1:34 pm

≫ Next: Please comment: Patient Safety Action & Surveillance Plan being requested by ONC for HIT

≪ Previous: The Conference I met Gail

$

0

0

Yesterday, I painted with a class of second graders.  They were little bundles of captured energy.  Their eyes sparkled and they could not be quiet.  The majority of the class finished the project early and a detail oriented few painstakingly completed theirs.  So I offered to tell the restless ones a story.  It was a classic tale of mirrors, apples and coffins made of glass.  I finished in the customary way.  Their voices joined mine in the refrain, “They lived happily ever after.” 

Life may be filled with great happiness; but often holds an equal measure of sorrow.  Life becomes a story, and every story ends.

On Tuesday January 29th-Wednesday January 30^th, I attended C-TAC (Coalition to Transform Advanced Care) National Summit on AdvancedCare in Washington, DC.  The meeting was held at the Institute of Medicine National Academy of Sciences building at 2101 Constitution Avenue. The building is a lovely Art Nouveau edifice.  The foyer and the marble hall are bedecked with stunning mosaics, carefully maintained murals and early 20^thcentury woodwork.   The remodeled auditorium is a modern, almost clinical design juxtaposed against the rich warm texture of the rest of the building.  I thought it the perfect venue for our topic of conversation.

When I arrived, I asked where I could set up my easel and paints.  The C-TAC volunteers looked concerned.  Although, I had been invited to attend and exchanged emails with the event planner, they had forgotten this detail.  My friends Ted Eytanhttps://twitter.com/tedeytan and Alex Drane assisted me in finding someone who could determine an appropriate place to paint.  Soon we were talking to one of the facility directors.  She looked worried and said she would have to clear this request.  

She left us and we conversed quietly.  She soon returned to tell us the good news: I could paint if I stayed in the marble floored great hall.  The bad news: I could not hear the speakers from the hall.  So I spent the next two days ducking in and out of the auditorium listening for content, live tweeting remarks and then painting the memory of the day.  

The conference day was well underway by the time I began to paint and tweet.  The topic of the conference was advanced illness care. "Advanced Care" is a new euphemism for “End of Life,” which really confused me at first, because I thought it was some kind of gifted and talented version of healthcare.   As a child who struggled through grade school, AP classes were always out of reach.  I did mange to be in some honors classes though.  Honor courses encouraged deep insight, rather than high scores.  

At 9:30 am the panel presentations began with “Care Journey: Personal Reflections on Advanced Care.”  

Amanda Bennett from Bloomberg News told us about her husband’s 7 years battling kidney cancer.  I listened intrigued.   Our family only had 3 months after the diagnosis of my husband Fred’s kidney cancer.  I began to paint with our stories entwined. 

I painted the two kidneys, the inferior vena cava and the descending aorta as two trees in winter; a tree of life and a tree of knowledge reminding us of a bargain struck so long ago.  To the right I painted Amanda’s experience with her husband’s sickness and death.  He died experiencing over-treatment, with blood draws and tests until the end.  I painted Amanda retreating within her visitor’s chair, completely nude and vulnerable as the machine of medicine chewed upon their life.  A resident stands hesitatingly preparing to tell her the end will come soon.

To the left our family story unfolds.  

Fred spent two months on the roller coaster of curative care and one month in the blessed embrace of hospice care.  He lies upon his bed as we gaze at each other. Our three-year-old son Isaac plays with a toy train beside his Father’s deathbed.

Above within the branches of the tree, a nest is perched where the heart resides.  Within the nest a newborn babe searches for the eyes he can trust, the eyes that see the soul.  As Brad Stuart fromSutter Care at Home reminded the crowd.  We end as we begin, our eyes searching for the ones we love.

I spent the lunch hour painting as folks looked over with curious stares.  One lovely young woman came over to tell me she worked in Health Information Technology and was so glad to see someone she recognized from the world of HIT at this event.  I said I understood and wished that were more of us with attending meetings in HIT, End of Life and Patient Safety. 

Soon Danielle Turnipseed from IOM (Institute of Medicine) came over to the easel while I was talking with Ted Eytan. I told her I hoped to be at Health Data Palooza in June but that would depend on creating a patient registration rate.  She commiserated with us.  Our talk led to mutual enjoyment of the walking meeting.  I said,“OH, I have an idea!!! We could have walking meetings with patients at Health Data Palooza!!! It could be cool!  Sort of like walking speed-dating between patients and tech folks!” Daniele assured me she would bring the idea back to the planning committee.

Soon I left for to pick up Isaac from school and returned on Wednesday for day two.  



Our first keynote speaker was Kathy Greenlee, Assistant Secretary for Aging and Administrator for Community Living US Dept. of Health and Human Services.  She spoke about the work of her office and encouraged all in attendance to come by and meet with her about this important topic.

Wednesday’s first panel was entitled “Empowering the Public to Make Informed Decisions and Plans” Alex Drane was the moderator. By this point I had seen several panel presentations with speakers seated at a black fabric covered table and each keynote speaker was peering over a colossal podium. I was getting frustrated that we were only seeing half of their bodies and often half of the energy of a speaker without such physical shields.  

TED and TEDMED have figured this out; we bare our soul when we speak with our whole bodies.  A seated speaker is only telling half of the story.  Then I began to wonder if this presentation choice was not some grand metaphor.  For this was a conference about end of life but rarely did I hear the word death mentioned.  So on the barren field I painted a seated panel.  Their covered table is a coffin.  Most of the speakers exist as a torso above the covered table, but the angle is such that the last speaker to the right reveals his lower body is a skeleton.  Our surface discussion may not contain the word death but it lingers beneath.

As I stared upon this panel, Alex Drane told us a lovely story from that morning.  Her daughter had discovered that Alex has a cell phone that she will always answer.  Her daughter called her and after a pause asked, “What time is it where you are?”  Like many of us who speak about the future of healthcare Alex flies across the nation empowering others.  Hours as well as miles often divide her family.

Alex smiled and said, “It is 7:20 here.”  There was silence on the line as her daughter did some quick mental math.  Soon she responded with a joyful voice, “It is 7:20 here too!” 

This painting has a name: “It is 7:20 here.”  

And it is.  

We are living in this moment and there is no better time to talk about our wishes with the ones we love.  
So in the foreground of this piece two clock faces look upon each other.  Each says 7:20 and the hands that depict the time are the hands of Alex and her daughter.  The clocks also represent the stylized bulb of an onion.  For as Alex’s daughter could surely tell you “Onions have layers” as does our conversation of this day. 

So in the spooling circles above our clock faces there are pennies. 

For throughout this conversation about the care of those we love there is a thread shines like the sheen of money.  Did you know it now costs more to make a penny than what a penny is worth?  And so it goes at the end of life, when often a life is extended not for the benefit of the patient but for the pocket of another. 


Within the twinning branches pills have become leaves like a pharmaceutical Klimt piece.  The copper pills are the Sutent that extended Amanda’s husband’s life and sit within a shadow box in mine. 

Soon beautiful Amy Berman (nurse and Senior Program Manager at the Hartford Foundation) began to speak, her hair a golden halo.  Her face serene as she told us she lived under a death sentence.  She has stage four inflammatory breast cancer.  This type spreads quickly throughout the body.  When Amy noticed it, it  looked just like an inflamed patch upon her skin.  But it had already spread throughout her body.   She was stage four and there is no successful treatment available.  Her oncologist began to explain an incredibly aggressive course.  There would be a mastectomy; chemotherapy, radiation and they would fight for every hour of her extended life.  She looked at the doctor and enquired, “Why a mastectomy when the cancer has already spread?”  He looked at her nonplussed and replied, “You don’t want to look at it do you?”

Amy could not believe it.  He was recommending cosmetic oncology.

He further added this was the course of treatment he would recommend to any of his patients.  But Amy was not “anybody” and she did not want cookie cutter recommendations or a life that was lived in more pain than was necessary.  Amy wanted to live to her fullest and then wanted a Niagara Falls.  In end stage cancer, patients make a choice. They can choose aggressive care and plummet down a step vertical and then float on a horizontal of lingering pain before death.  Or then can live life on the fast-paced stream without added nausea and pain until they plunge down at once as the end nears.

I painted Amy in her Niagara Falls moment as the wind whips her patient gown around her body. Her stance is sure within her half-barrel and her face upraised to greet her choice with open arms.  As I painted it thus, one attendee said, “I thought the barrels used at Niagara were full barrels.” I responded, “Full barrels are used by those who think they might survive the fall.” 

Soon Bill Hanley from Twin Cities Public Radio spoke.  He followed Kent Wilson from Honoring Choices Minnesota.  They both spoke of the amazing program Honoring Choices and the teachable moments that arrive when PBS works hand in hand with hospitals to create a safe place for conversations about end of life.  This is my second time to see them speak and I represented their great work with a tombstone beside our heart tree.

That should have been the end of the panel, but Alex had offered me two minutes to speak.  I have never spoken before about a painting that was only half-finished, but perhaps that was perfect time to speak about this painting. It continues the metaphor of the half-told tale.  We will never make the strides we need to make in end of life care until we value the end like we value the beginning; until we see hospice cards in the Hallmark isle as much as we see cards that welcome new babies.

I stood upon the stage and explained the painting was a landscape and it was set in winter.  I went on to tell the crowd that I taught preschoolers watercolor landscape for 7 years.  I would say, “See the top of the painting is the sky, the bottom is the ground. See where they seem to meet, that is the horizon line!”  We would start off painting summer because that was easy and filled with blues and greens.  Then fall with its yellows and reds and leaves falling.  Then we would paint winter and the colors are dark and the trees have no leaves and everything is dead.  And this is where many teachers stop when they teach the seasons.  





But we would stop at spring; we would stop with cherry blossoms.

I told them that the painting was inspired by the twining of Amanda Bennett’s story and my own.  She suffered so, as did her husband with no time to say goodbye.  We had the better death at home with friends and family.  My husband and I spoke all night the night before he died back when I thought terminal restlessness was just a Tom Hanks film.

Then I glanced over to Alex and said, “I had been asked say something moving in two minutes and I don’t know if I did, but my husband was able to.  He said goodbye to his sons by performing a puppet show in hospice.  This past fall we marched in the Million Puppet March in Washington DC in Support of PBS.  In support of all that PBS does to educate us.  We carried signs with pictures of my husband in hospice and told folks all about Honoring Choices in Minnesota.”   I told them that is what this is all about.  We can say goodbye with puppets and remember the promise of cherry blossoms.

I painted for the rest of the day with people coming over often to chat. One was Amy.  We hugged and laughed because we were wearing almost identical outfits!  As she said we were sisters from another mother.

Soon we broke into sessions.  I went to the Interfaith Workgroup on Spirituality.  They are looking for suggestions on how to move things forward.  I volunteered the power of the twitterverse to help the cause.  So feel free to join the conversation!

That supper, with no prompting from me, my seven-year-old son Isaac told me he wants the Star Wars Imperial March to play at his funeral. He also wants a graveside service.

I responded, “I want to donate my body to science and then that is usually followed by cremation. So I won’t have a grave.”  His eyebrows rose and he said, "You don't want a tombstone?" I responded, "Nope." He replied "Well, there will be no crayon rubbings of your tombstone then." And proceeded to eat his macaroni.

Now, was that so hard?  

Please comment: Patient Safety Action & Surveillance Plan being requested by ONC for HIT

February 4, 2013, 9:29 am

≫ Next: Hallmark Please Create Hospice Cards

≪ Previous: It is 7:20 here

$

0

0

FROM HealthIT.GOV:

"Health IT and Patient Safety

On December 21, 2012, the Office of the National Coordinator for Health Information Technology (ONC) issued the Health IT Patient Safety Action and Surveillance Planfor public comment.

The Department of Health and Human Services (HHS) is taking actions on health ITand patient safety. HHS is calling on the private sector to take actions as well. To address health IT and patient safety, a shared responsibility among the government, health IT industry, patient safety organizations and health care providers is needed to support a culture of safety.

The Health IT Safety Plan may be viewed here. All public comments must be submitted by February 4, 2013, 11:59 pm EST to ONC.Policy@hhs.gov. Based on the public input, ONC will publish the final Health IT Safety Plan."

DID YOU KNOW YOU HAVE LESS THAN 24 HOURS TO COMMENT? : Patient Safety Action/Surveillance Plan for Public Comment that is being requested by Office of the National Coordinator for Health Information Technology. 

PLEASE email comment to ONC.Policy@hhs.gov

Below is the letter that the great folks at TMIT put together and I added my own comments throughout; Sort of like a public comment MAD LIB.  Please feel free to do the same.  TMIT has been working on this issue for years.  You know TMIT, the non-profit that built SpeakerLink.org so more patients could speak out at conferences.  Just sayin'





To the ONC Reviewers for Public Comments on the Health IT Patient Safety Action & Surveillance:

Dear ONC FOLKS!

So glad to see you are tackling this thorny issue!!!

I thought I would throw my 2 cents in and provide comments and suggestions for improvement of the Office of the National Coordinator for Health IT Patient Safety Action & Surveillance Plan issued on Dec. 21, 2012, for public comment.

As you well know, I am very concerned about patient safety and HIT risks to my family and the community.

I am actively involved in patient safety and have been concerned about the safety testing of electronic health records (EHR) and computerized prescriber order entry (CPOE).

REQUEST: I would like to recommend that ONC certifiers work with a collaborative team and innovation that is already in place for post-deployment performance surveillance of Electronic Health Record and Computerized Prescriber Order Entry systems: the EHR-CPOE Flight Simulator, developed and made available by TMIT a 501c3 not for profit medical research organization.  TMIT has led patient safety initiatives for 30 years and has collaborated with multiple government agencies.

I have worked with TMIT on speakerlink.org and have been one of their patient advisors for 2 years.  They constantly work to improve patient safety in all aspects including in HIT.

This tool has been successfully used to examine hospital safety problems in EHR-CPOE, is scalable, reliable, and is saving lives and money and is currently in use by Leapfrog.

Please do not waste any more time starting over in this area.  Please build from a strong foundation by a trusted source in this field.  I for one have gotten very tired of watching safety goals delayed for years while government grantees redesign the wheel.

This EHR-CPOE Flight Simulator has been used to evaluate hundreds of inpatient and ambulatory EHR systems in the United States and piloted in the United Kingdom. TMIT proposes to work with ONC-Authorized Accrediting Bodies, PSOs, and QIOs to further refine the simulators, and to have monthly webinars to educate hospitals on how to obtain and adopt this useful, already proven tool.

An article just released that describes the history of the simulator, data regarding hospital leaders confirming great risk in health information technology, and the global strategy that a team is taking to address this problem now. Entitled SAFE USE OF ELECTRONIC HEALTH RECORDS AND HEALTH INFORMATION TECHNOLOGY SYSTEMS: TRUST BUT VERIFY it is in the Journal of Patient safety, and it is available at: http://www.safetyleaders.org/safeUseHITsystems/home.jsp

  
Thank you for considering having agencies work with the existing team on the TMIT EHR-CPOE Simulator. Use of this tool would be in keeping with the original directive of the ONC, which is to employ the expertise and talent we already have to solve the problems inherent in current EHR and CPOE systems. Thank you for giving us the opportunity to comment on this important issue. 

Thank you for your time and your consideration of looking at this tool, as TMIT has kept patients in the communication loop since inception, and we were not a tacked on as an after-thought.


Sincerely,

Regina Holliday

Patient Activist

Hallmark Please Create Hospice Cards

February 10, 2013, 9:39 am

≫ Next: Partnership With Patients:The Survey

≪ Previous: Please comment: Patient Safety Action & Surveillance Plan being requested by ONC for HIT

$

0

0

Do you keep all the cards you receive?  I do.  When I have spare time I even paste them into scrapbooks in all their lovely glory.  Behind each sentiment or floral cover, I cherish the words written by my friends.  I especially love the ones from my late husband with his signature and phrase. He ended each missive to me with the symbols: “Alpha, Omega. Infinity.”  Which means: you are my everything and I will love you forever. 

Those inside notes are priceless, but we should not forget the message that adorns each cover.  Do you peer at your cards and ponder the thoughts of the individual that made each purchase?  I do.  You see my mother rarely writes more than a sentence in every card she sends.  She does not think her words can say what she wishes to say.  So she ponders each card until she finds the perfect one that matches her love of her daughter.  She buys that one.  She mails that one.  I know to read the cover very carefully.

My mother depends on cards like the ones Hallmark makes to tell me how much she loves me. Due to the plethora of choice in the birthday card isle she always picks the perfect one.  And so it goes for my son’s births and other momentous events in my life.   But in the summer 2009 Hallmark failed my mother. 

Hallmark failed my husband too.  There are no hospice cards.  For two months after Fred was hospitalized we received a tower of “Get Well Soon” cards.  Fred rejoiced in each of these cards and they filled the hospital rooms, reminding Fred of all his friends who cared for him. 

When we went to hospice, the cards stopped.  We would get the occasional “Thinking of you” with the blank inside and few words from the sender.  Or God forbid, we would get a “Sympathy” card.   Fred raised his eyebrow with dark humor and would say: “I guess they don’t realize I am not dead yet.”

So recently, during a twitter chat sponsored by TEDMED, we were having a “Great Challenges” discussion about how to have an end of life conversation.  I suggested Hallmark needed to make hospice cards.  The group thought it an excellent idea, and I immediately set up a petition on change.org.

I encourage you to sign the petition here: Hallmark: Create Hospice Cards.

Soon people asked me why not start my own card line; after all I am an artist.  I responded, I was not doing this as business venture or as an attempt to have Hallmark use my work.  When I was asked how do we encourage people have “the conversation.”  I said the answer was Hallmark creating hospice cards.  They have an amazing reach into every corner of America.  If they create a card on this topic they will open up the conversation nationwide.

Some other people asked why a petition?  Why not ask Hallmark directly?  Well, I have been trying to do that for a year.  I called them directly and went through several layers of customer service and was told they would report the idea.  As I have several friends in the Kansas City area I also tried back channel contacts to no avail.  I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard.

I began tweeting about the petition and Hallmark did respond that they had appropriate choices in their Gold Crown Stores.

I used their internal search engine to find a hospice card and found nothing. Here is a screen shot of my search:

Soon after we had 50 people sign the petition and a Hallmark spokeswoman responded to us:

"We agree that a card can help people support loved ones going through difficult situations and their caregivers, and Hallmark has many choices for this need within several different card lines. If you're having trouble finding one, we suggest visiting a Hallmark Gold Crown store and asking a sales associate to help you find a card for someone in hospice care. Thank you for your caring hearts."

Linda Odell
Hallmark Newsroom
newsroom@hallmark.com

I don’t think this response really addresses our request.  I am well aware that Hallmark makes blank cards and all occasion cards.  We need cards about the end of a life just as much as we need cards at the beginning.  We need the script that Hallmark so lovingly provides in almost every other moment in a life.

We need a card that my mother can send, a card that will say all the important things.  For there are so many people like my mother in this world, so many people who can have this important conversation if Hallmark just leads the way. 

No one should die with an empty mailbox.  

Partnership With Patients:The Survey

February 12, 2013, 7:52 am

≫ Next: Hallmark is listening

≪ Previous: Hallmark Please Create Hospice Cards

$

0

0

In September of 2012 a number of patient advocates, providers, activists and vender partners gathered in Kansas City for The Partnership With Patients Summit to speak about patient centered care, patient rights and the healthcare landscape.

One of the direct requests of that meeting was to create a survey to get a pulse on the deep concerns of patients throughout the nation.  Many leading advocates including PatMastors and myself have been crowd-sourcing these questions in the ensuing 4 months. 

We asked the wonderful folks at Traitwise to host and create this survey.  Thank you Michael Simpson, President and CEO of Traitwise for helping us through this process.

If you have never used Traitwise.com, you are in for a treat!  If I were to compare a Traitwise survey using the analogy of chocolate, I would say: Survey monkey is to artificial milk chocolate chips in generic packaging as Traitwise is to the finest Ghirardelli.   

So sit back and give us your honest opinions for the next 5 minutes or so.  Feel free to be completely open.  These survey reports are anonymous.  We want to know how you feel, so we can direct our energy and strategy to resolve your most pressing concerns.

We will make the results of this survey available to the general public and concerned patients and partners everywhere.  

Thank you.

Start the Survey. 

Hallmark is listening

February 15, 2013, 1:05 pm

≫ Next: What I learned on the road to the Shorty’s

≪ Previous: Partnership With Patients:The Survey

$

0

0

Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures.

Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need.

They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below:

I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue;

“Cancer is tough, but you are tougher.”

This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing? 

There are other lovely cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 

---

What I learned on the road to the Shorty’s

February 16, 2013, 8:24 pm

≫ Next: On Mirrors: The Continuing Conversation on Hospice Cards

≪ Previous: Hallmark is listening

$

0

0

January 26^th was my son Isaac’s 7^thbirthday. Our small apartment filled with laughter as we crammed 7 children and 12 adults into our living room.  It was a great day and I always enjoy such moments because they unite every aspect of our lives.  Friends from Isaac’s old pre-school were there, as well elementary school friends, friends from the toy store Child’s Play, my husband Fred’s co-worker from years ago, patient advocates, neighbors and family.

During this crazy fun-filled day I got a tweet from LisaFields. 

She suggested voting for me in the #activism category of the shorty awards.  (The Shorty Awards are like the Oscars in Social Media.) Now, what Lisa did not know was I was working on a really huge painting for Alex Drane. I was painting my interpretation of the spirit of the Eliza Corporation.  So, for the next 10 days I somewhat ignored her nomination. 

I finally (mostly) finished the Eliza painting and received a request from The Hilgos Foundation focused on the arts within patient populations coping with dementia.  They were competing in the #charity category of the Shorty Awards.  I love their program, so I voted for them immediately.  Then I guiltily remembered Lisa’s nomination. 

So, I filled out my profile page and began the incredibly hard steps of a twitter campaign.

I have learned so much from experiences like this one.  My friend Ted Eytan has suggested I stretch my wings and try my hand at challenges several times.  He suggested I compete in the Sunlight Foundation Community Health Data Initiative in the spring of 2010.  I entered a painting focused on comparing hospitals into a competition filled with apps or website design. I lost; well I got an honorable mention… but in the traditional sense I lost.

But what did I win?  I learned a great deal about HospitalCompare.gov before it existed. I learned about HCAHPS scores before folks we even talking about Value Based Purchasing. Roni Zeiger wore an “Art Jacket” on stage before there was a gallery.

I think that is a win!

In the fall of 2010, Ted also introduced me to the Ashoka Changemaker Competition and I entered 73 Cents and the concept of painting about data and patient rights on walls.  Once again I lost.  But what did I learn?  I learned about so many amazing activists around the world and the great projects they were working on.  I supported others on their journey. 

I think that is a win!

Next Ted told me to enter “Body Shock the Future” from the Institute for the Future.  I entered a painting focused on the unhygienic use of the patient bedside tray table as both a changing table and feeding tray.  It is also one of my favorite paintings because I captured my late husband’s expression perfectly.  Once again I lost.  But I learned how to campaign more effectively this time.  The painting did get shown to a wider audience and a couple of years later  I would meet the designer Michael Graves at TedMed; I talked with him about it.

I think that is a win!

So last fall when I decided to crowd-fund the Partnershipwith Patients Summit in Kansas City, I had plenty of practice doing an online campaign.  We would need to raise 20k to barely break even.  If I failed at this campaign, I would let down so many patients, not to mention my friends at Cerner who put trust in me.  I would do two different campaigns simultaneously one at Medstartr and one at Healthtechhatch.

This time we won.  We made our goal!  Partnership with Patients happened.

I think that is a win!

Lisa Fields nominated me on January 26 for the Shorty Award in #activism.  I have been campaigning diligently on twitter since February 5^th.  I currently have 378 votes and need about 100 more to finish in the top 6.  Those in the top six will be judged to decide the winner.  Based on the high level of difficulty getting just 378 votes in 11 days, I think it improbable that I will finish in the top six.

I probably will fail in my attempt in the #activism category for the Shorty Awards.

But what did I win? 

I was on twitter often enough that I engaged in far more chats than I normally do.  So I was there to support Lisa Fields when she hosted the @TedMed chat #GreatChallenges on end of life. I joined the conversation and mentioned the concept that Hallmark needed to create hospice cards.  I have been suggesting this idea for almost a year on my blog and to Hallmark directly through customer service.  I think it would help normalize conversations with those who are dying.  But the #greatchallenges conversation was so inspiring; I built a petition on change.org immediately.  Members of the tweet chat began signing it, and now I had two campaigns underway!

Now, some folks would think twice about taking on another campaign in the midst a current one.  Some folks would wonder, “How will this make me look?  Will people think I am doing this for added exposure?”  I admit I paused for a couple minutes with precisely that worry.  And I was not wrong, as I was accused on twitter days later of exactly that motive.

So I want to make something very clear. 

Everything I do is to improve the patient experience.

The Walking Gallery, conference painting, speaking, live-tweeting, blogging, entering competitions like this one, all these things I do so we can spread our vision of truly participatory medicine in which patients will not have to suffer.  In so doing I have met amazing people who would do just the same, like Ted and Lisa.  When I am offered an opportunity that could grow our network of friends, I say yes.  I call these moments “God moments.”   Sometimes when opportunity or providence knocks it does so in the guise of a tweet.

As these dual campaigns continued the web of friends spread, until Miriam Cutelis a fellow parent posted a notice about our work in advocacy in my son’s elementary school online forum.  She encouraged parents to sign the petition for Hallmark to createHospice Cards, take the Partnership With Patients Survey and to vote for me for the Shorty Award.  Soon I was greeting local parents on my twitter feed.  I love it when worlds collide!

In November, I delivered a speech with Ted.  It was entitled Bouncing a ball alone: Grokking Failure. We presented it at TEDx Detroit.  It was a very unorthodox speech.

We literally bounced a ball onstage :) and spoke of things often not spoken of.

Ted was willing to stand on stage with me, fail or win in the name of better communication for all.

We were embracing failure.

I want to thank everyone who voted for me in The Shorty Award competition for Activism.   I know it might have been a bit uncomfortable logging in and voting.  I appreciate all you have done.

(Oh, in case you wondered it is bowtie shaped on purpose, because bowties are cool.)

Even if I fail, we win.  Go Patients!!!

###############################UPDATE##########################################

In the final hours Ted Eytan suggested tweeting nominations in a new way:

'I nominate @ReginaHolliday for a Shorty Award in #art #activismcategory because her work creates a healthier, more caring society."

And the race is on...

On Mirrors: The Continuing Conversation on Hospice Cards

February 20, 2013, 11:25 am

≫ Next: A Hospice Card at HIMSS13

≪ Previous: What I learned on the road to the Shorty’s

$

0

0

I want you to think of how many times a day you look within a mirror. 

Every time we enter the restroom we glance within the mirror to double check our appearance. We use it to take those lovely cell phone pictures that create avatars on countless social media sites.   We stride upon the streets of a city and reflected upon endless windowpanes; a dark copy of our face walks beside us marking time. 

A conference planner once asked me how could we make the assembly space of a symposium remind every attendee how it feels to be a bedridden patient.  I responded that is easy. 

“Cover every hall and bathroom mirror with black paper.”

The planer looked at me quizzically and waited for my explanation.  “The very compromised patient is stuck in his or her bed. Most hospital bedside tray tables do not have a mirror, or if they do it is often broken.  So you spend a lot of time alone without even the comforting gaze of your own eyes.”

I remembered this conversation in relation to a comment the Hallmark spokeswoman Linda Odell gave to Kansas City reporter Elana Gordon in her article "Addressing Death and Dying…Through a Greeting Card?” This response was related to the petition Hallmark: Create Hospice Cards.

“Odell says she also recognizes that each person’s experience is different.  “Bless her [Holliday’s] heart for leading the way,” says Odell.  But she adds that Hallmark reflects what people are talking about, rather than “picking up the flag and leading the charge.”

“We’re always listening, but we’re listening to a lot of people. We’re talking to a lot of people…and we are always paying attention,” says Odell. “As people are more open about talking about things, yes we reflect what they’re talking about. But we’re a mirror of that…There are isolated data points and we certainly take that into consideration.”

So Hallmark is calling itself a mirror and does not see a reflected need for hospice cards.  I do not find it surprising that the viewpoint of the dying is not well reflected within our society. 

After all we do not give them mirrors.

We give them washed out cotton gowns, institutional surroundings, numbers instead of names, windows that do not open, diapers and silence. 

But we could change that.  We could change it by talking to the dying and sharing their worldview.  We could change it by taking small steps that turn the tide of culture.  If Hallmark created hospice cards and placed them in stores, that would be an amazing step on the journey to better care of everyone at end of life. 

Hallmark you can be a mirror, but I ask you to be a signal mirror.  You should send a message, a beam of light that can be seen miles away; a message that can be opened and read by someone who needs it.

Read by someone in a room without mirrors.

Please Sign the Petition Hallmark Create Hospice Cards

A Hospice Card at HIMSS13

February 27, 2013, 6:17 pm

≫ Next: Ten Thousand Hours

≪ Previous: On Mirrors: The Continuing Conversation on Hospice Cards

$

0

0

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.

Ten Thousand Hours

March 15, 2013, 9:58 am

≫ Next: Three Asks: One Blog

≪ Previous: A Hospice Card at HIMSS13

$

0

0

People often ask me when did I begin painting.  They ask, “Did you paint before your husband died?”  I tell them, “I have always created art. I drew; I painted as a small child.”

Have you ever read Malcolm Gladwell’s Outliers?  In that book, he makes the case that 10,000 hours of practice are needed for mastery in many art forms and skills.  He mentions the success of Bill Gates has deep roots in early access to computer technology.  He references the 1,200 live performances the Beetles gave in Germany prior to their fame. He makes the point that mastery requires practice and opportunity to hone skills.  Since the Outliers book was published some detractors have commented that really 25,000 hours are needed.  Or they say that luck and nimble thinking is far more important than years of practice.

I think we need both.  I think we must devote hour upon hour to our chosen art, but we must be willing to spin on a dime and use our skill in a new way when circumstance or opportunity presents itself.

Which brings me back to childhood.  When I was in first grade I spent every recess drawing on the brick wall at Washington Elementary.  I drew on this on this playground. 

It is a lovely thing to draw or paint upon the playground and recently I did such work with the children of Murch Elementary.

My son Isaac is a first grader at Murch; but I have been helping that school with auction art for 9 years.  Each year, I go into classes and ask the children what would they like to create for the auction project.  We talk about Return on Investment.  How much will the materials cost and how much can we make on the project.  We talk about which subjects would they like to paint, that their parents would want to buy.  IE, though it may be fun to paint Pokemon, will many parents want to buy that?

The children create a list of about ten topics that they would be interested in painting about.  Then all heads go down as we do a blind vote.  We narrow it down to three choices, everyone looks up and we talk about the three topics and do a second blind vote.  The winning topic will be the subject of the painting.  This year I completed this process with four classes at Murch Elementary.

Fourth Grade: Ms. Mathur’s Class

I have partnered with the teacher Ms. Mathur for several years on such projects.  She is always such a joy to work with. This year Ms. Mathur’s class wanted to focus on the coral reef and tropical fish.

They wanted to create the tropical reef using a 3-d effect they were taught last year by art teacher Miriam Cutelis.  The students had such fun immersing their hands in glue and sculpting the 3-d elements.  Then they worked at their desks creating fish paintings.

Second Grade: Ms. Hsu’s Class

I also was able to work with Ms. Hsu again this year and she was excited about the topic.  Her class decided to focus on the rain forest.

They painted the many small animals and insects that populate the canopy and painted the trees using masking off and sponge painting.   The students loved pulling the making tape of the tree trunks and revealing the painting.

Second Grade: Ms. Stephens Class

Ms. Stephen’s class chose a very elaborate project with the support of their teacher.  The students wanted to create a project that incorporated Habitats, Native American’s, Solids and Liquids, Weather, Insects, Simple Machines, Biographies and the elements of a book.  Where do all those topics meet?  In an encyclopedia!  So we did a piece of art based upon an encyclopedia from 1920s. 

The first step was to have a dress up day in period costumes. Room mother Kim Webster did an amazing job in helping the children into the many layers of dress that would have been appropriate for an encyclopedia at the turn of the century.

Each child posed in a dignified manner as we took each picture.




Then those pictures were printed in black and white onto rice paper and the children hand colored them in the classroom.

First Grade: Ms. Werner’s Class

My son Isaac is in this class so I volunteered my services to Ms. Werner early on.  These first graders had a novel idea.  They wanted to focus on currency from around the world.  So children brought in coins from many nations and we did coin rubbings on rice paper with crayons.  Then I cut out a world map and handed each working group a continent.  We mounted clay machines around the classroom that extruded thin layers of polymer clay.  Each group was given a wide array of color to cover their continents in Sculpey clay. Then they pressed coins into the finished world to create another series of coin impressions. 

To create continuity of form and to reemphasize the children’s focus on currency, I dusted the work with a gold powder.  Then I baked each clay continent in my home oven.

The Playground as Studio

When I do auction projects with classes, I try not to take away too much instructional time.

As some of these projects were quite elaborate, we finished second steps on the playground on a relatively pretty day. Ms. Mathur’s class needed to paint the coral reef.




Mr. Werner’s class needed to paint an ocean of paper blue and the paper currency waves.



Ms. Stephens’s class needed to draw pictures about their different focus areas. 

The playground is a great place for making new friends.  Many children came over while we were painting.   They were from other classes but they wanted to paint too.

I did not turn them away. They joined in the effort and freely gave their time and their joy of art and all of its possibilities.

I know recess is designed as a time to run and play.  It is a time to focus on health and freedom from the rigors of academia and memorization.  But when a child draws on the playground, the mind can run free as well.  These stolen hours in childhood accumulate over the years to ten thousand hours and mastery of the form.

So when the day comes that these children can use their skills to help others and change the world, they will be ready.  

Three Asks: One Blog

April 14, 2013, 2:58 pm

≫ Next: The Open Door

≪ Previous: Ten Thousand Hours

$

0

0

Well, June is almost upon us and with June comes our third gathering of The Walking Gallery!!!

I have three major asks within this blog and I know many of you are pressed for time so:

1.    Please register to attend the June 2, 7-9 pm gathering of The Walking Gallery 3, at St. Paul’s Lutheran Church, 4900 Connecticut Ave, NW Washington, DC

2.     Please register to walk with us on June 3-4, at Every Walks at Health Data Palooza on the Rock Creek Walking trail beside the Omni Shoreham Hotel at 2500 Calvert Street NW (off of Connecticut Ave near Woodley Metro Station)

3.     Donate to the Medstartr fund to create a Mini-Documentary on the Walking Gallery (link is still pending.  Will post as soon as it is live)

Why three asks? 

The Walking Gallery 3

For the past two years The Walking Gallery gathered in the Kaiser Permanente Center for Total Health.  It was a great venue for the first two years.  Thank you Kaiser Permanente for your gracious support!  The first year we had 54 Walkers wearing their jackets.  The second year we had over 80.  

In our third gathering I hope to see over 100 Walkers and many additional guests.  I attended quite a few conferences this past year where thought leaders in medicine wondered how to activate regular people within their communities.  I also attended a lot of conferences hosted within nice governmental buildings or grand hotels; those individuals running these meetings asked how we could involve people of faith and places of worship in the larger dialog of patient rights and engagement.

So… The Walking Gallery 3 will be held in St. Paul’s Lutheran Church in Northwest DC one block from the Mural 73 Cents.  My younger son was baptized in this Church and we held my husband’s memorial service here.  The school beside the Church is Murch Elementary.  Both my son’s attended this school and I have volunteered there to help with many art projects in the last nine years.  I am so glad to welcome the world of medical advocacy into our local community.

We will gather at June 2^nd, 7:00pm have light refreshments.  We will share our stories.  At 8:30 we will walk across the street and re-dedicate the mural 73 Cents.  It will be a Blast!!! This will also give us a moment to recharge and reflect on why we care so very much about patients and positive change in healthcare.

In case any of you wondered why we have our biggest gathering in the beginning of June each year, it is because we host it right before the first day of Health Data Palooza since so many like minded folks would like to attend both events.

Everybody Walks at Health Data Palooza

(This is a flash mob kind of action so we are not endorsed by Health Data Palooza)

On June 3-4, we will gather on the Rock Creek Park walking trail beside the Omni Shoreham Hotel for scheduled networking walks during Health Data Palooza.

I love HEALTH DATA PALOOZA!  The first year June 2010 I entered a painting as a type of app development. I got an honorable mention and Roni Zeiger walked onstage in his gallery jacket!

The second year 2011, I missed it because tickets sold out in a matter of hours but we began The Walking gallery and promoted both through social media.

The third year 2012, the tickets were affordably priced and there were many tickets available so I went as an attendee/exhibitor.  I painted a painting on site: Health Data Palooza.

Sadly, this year the ticket prices were out of reach of many patients, many professionals and myself.

What to do?

The Walking Gallery and Partnership with Patients to the rescue!!!

We will have scheduled walks throughout Health Data Palooza on the Rock Creek walking trail so patients, doctors, governmental employees, techies, venders, nurses and regular folks can walk and talk about the amazing positive change we can wreck upon healthcare if we just get up out of our conference chairs and decide to act. 

So Health Data Palooza attendees if you want something better than a coffee break come out and join us for a short walk.

We are taking donations to help pay for a cool down room at the hotel as June in DC is very hot and many of our patient walkers will need a respite.  Funds will also help pay for water.  Kaiser Permanente has offered to provide umbrellas/parasols.

I hope to see you there!

The Walking Gallery: Mini- Documentary

Finally, I began a new Medstartr campaign to fund a mini-documentary of the Walking Gallery Movement.  These funds will pay the amazing film-makers for Eidolon Films: Tessa Moran and Ben Crosbie as they create a piece that will include interviews with walkers, conversations with artists and explain the technical process of creating a gallery jacket.

Thank you everyone who can support these amazing causes!  Onward and Upward!