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Friday, December 21, 2012

The Care and Cleaning of your Walking Gallery Jacket

 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. Absolutely do not send stretch fabric.  I cannot paint on stretch fabric, as the painting will shred.  You can check if a jacket is stretch by trying to pull at the fiber on the horizontal. 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 you can hand wash, pat dry and dry flat.  Again this applies mostly women’s blazers.

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

After washing it 30 times the fabric began to break down.  The painting is still there, but The fabric really is fraying in spots. 

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.

Febreze applied to areas of odor can help keep your jacket nice.


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 dry cleaner 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 much harm.  I had to retouch the water ripples. 

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

Thursday, December 13, 2012

Break Out Session at AMIA

On Wednesday, December 12, I attended AMIA’s (American Medical Informatics Association) 7th 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. 

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.

Wednesday, December 12, 2012

"Root Certificate" at ONC Annual Meeting 2012

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. 

Sunday, December 2, 2012

Partnership for Patients a bed time story

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 you God for building us and loving us and caring for us, 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 6th 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, lady Jennifer 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.  But they worked hard to explain the patient views to the kind folks at CMS.  

They worked hard to 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.    

Friday, November 30, 2012

The Walking Wall

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

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

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

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

You will see the stories of:

Jen McCabe, Lygeia Ricciardi, Cindy Throop, Valarie Barnes, Danielle Cass, Susannah Fox, Amy Romano, Christine Kraft, Keith Boone, John O’Brien, Lindsey Hoggle
Clay Patterson, Kait B. Roe, Brian Ahier, Richard Payne,  Paulo Machado, Helen Haskell, Louise Schaper, Dave DeBronkart, Eunita Winkey, Mary Anne Sterling,
Andre Blackman, Craig Lipset,, Kathi  Apostolidis, David Harlow, Alex Albin, David Collins, Sherry Reynolds, Tiffany Peterson, Ben Miller, Jenny Pettit, Wendy Sue Swanson, Ted Eytan, Marsha Goodman, Trisha Torrey, Kathy Nicholls, Matthew Holt, Wen Dombrowski, David Lee Scher

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

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

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

Wednesday, November 28, 2012

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

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

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

I painted Apples to Apples.

Report Card

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 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.”

Sunday, November 25, 2012

The Sleeper

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

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

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

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

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

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

"The sleeper

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

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

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

Crustal Displacement Theory

Tuesday, November 20, 2012

Attack of the Living Meme

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

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

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

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

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

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

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

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

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

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

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

Friday, November 16, 2012

Dear patient advocates, e-patients and caregivers,
We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!
Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

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

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.
The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.
We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.
The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.
Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.
Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.
PWP Notes: (I’ve taken some liberty with order to organize it better)
1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

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

3)    Potential suggestions of these 5 priorities:
a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.
b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.
c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.
d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

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

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

6)    How do we develop/deploy patient “market power”?
a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”
b.    Should we host an online petition to represent our numbers? 
c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?
A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.
Next Steps: We’ll be creating a survey through (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.
Possible, sample questions:
1)    Do you want to be part of a national patient advocacy group?
2)    What should this group be called? (choices a,b,c?)
3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)
hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

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

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?
Yelp for providers, resources like faircare, HCHAPS awareness and etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)
5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?
6)    Should they be paid? By whom? (choices)
7)    How much time can you devote to this cause in tandem with your own work? (choices)
8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).
9)    How much do funding limitations impact your capacity to offer the above?
10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

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

-Pat Mastors and Regina Holliday