The Legacy of a Free Lunch

In September of 2012, I attended an IT summit in California.  It was a large event and I enjoyed painting the content of many of those who spoke about HIT (Health Information Technology.)  On the second day, a speaker began to jokingly to disparage hot lunch at elementary school.  The audience began to titter in agreement and the speaker concluded with a sarcastic rhetorical question, “Who would ever eat school lunch?”

I looked up from my painting and quietly and said, “I would.”  A couple hours later I was able to get on stage and explain the paintings I had created.  Then I asked how many of those in this room had been a free lunch child.  There was an uncomfortable shifting in the seats as very few people raised their hands.  I told them I was a free lunch child and I would never turn down the nourishment that sustained me nor make fun of such a needed service.

In policy circles, we talk a great deal about a digital divide within HIT, but we often ignore the economic divide.  I have attended many a meeting in the halls of power where the attendees are intelligent and hardworking, but they are not economically diverse. I am glad I can speak in these rooms about the power of the patient and the legacy of a free lunch.

I found out recently there is another free lunch student speaking out in DC who has dedicated her life to service.  She too grew up in poverty.  Her name is Karen DeSalvo, M.D., M.P.H., M.Sc. and she is the National Coordinator of Health Information Technology for the US Department ofHealth and Human Services.

She has joined The Walking Gallery and this is her jacket story “The Legacy of a Free Lunch.”

Karen had a challenging childhood.  Her parents were fromNew Orleans but had trouble finding work.  The family eventually relocated to Austin, Texas. At five years of age Karen’s father walked out on her Mother and his three daughters.  Karen’s young mother did not have a college degree and struggled to find work.  Karen and her sisters thrived because of safety net services that were available in Austin.  She ate free lunch and attended the local summer recreation programs for the poor. She also watched her mother struggle to work and maintain a family while suffering from depression.  No matter how bad it got Karen’s mother always managed to care for her children.

Karen decided early on she wanted to be a doctor.  She went to college and studied hard. She succeeded in her dreams.  She returned to New Orleans for medical school and stayed to practice.  She discovered health care was more than just the patient in front of you; access to care was so important.  When Hurricane Katrina Hit in 2005 she was on faculty at Tulane University and was practicing at a charity hospital. Karen was medical centric until Katrina dispersed the community and shut down all support.  

The anchors of care were gone.  

Karen DeSalvo, as Vice Dean of Community Affairs and Health Policy for Tulane University, was asked to help with the rebuilding process. New Orleans had a clean slate to rebuild the entire system. What if the new system looked very different?  What if access to care was in neighborhoods? What if Health It was embraced? That would be better than keeping track the now water-logged scraps of paper with scribbles.  Karen and her team took opportunity from tragedy and worked out in the community. They must have free clinics first. These needed to be medical homes fully IT enabled.  Some of these clinics would be mobile and some would be brand new buildings, but all would be working together and created from scratch as part of the community.  

Karen began to delve deeper into the safety net of the entire city.  She started asking many questions. Where do people live, work and play. How do you navigate the healthcare system? How can you choose to schedule time off for a mammogram, when that means missing a chance to see your child in prison? Where is your playground? Three blocks away can be another neighborhood in New Orleans.The University gave Karen free reign to rebuild in NewOrleans with medical homes, community health workers and seamless hand off for mental health.

By 2010 Karen was exhausted, but glad she had done so much to help her beloved city.  Karen was part of the search committee to find a new Health Commissioner for the City of New Orleans.  When the woman they chose decided not take the position.  Karen realized she should step up to the plate. Karen took a leave form Tulane University and became Health Commissioner in 2011 and served till 2013.

In January 2014, Karen was chosen to be the new National Coordinator of Health Information Technology for the Department of Health and Human Services.  So much her life has been focused on helping patients and now she does so through policy, but she still finds time to practice once a month at the clinic. It helps her to stay centered.

I painted young Karen standing waist deep in the waters of New Orleans.  I painted her loving family at her side and her free lunch clasped firmly in front of her.  I painted her with hope for a better tomorrow etched upon her face.

I painted her mother with a worried expression and her back half turned.  In 2005 Karen’s mother was slipping in to into the late stages of early onset dementia. Karen had been looking forward to a day she could care for her mother as her mother had cared for her.  Karen’s mother was the kind of person who loved people deeply and without condition.  As her disease progressed her memory was like a whiteboard filled with notes that someone was randomly erasing.  Karen watched as the nursing aids in the group home were disrespected even though they knew about the patients as people.  It opened Karen’s eyes.

In 2005 Katrina struck. Karen’s mother had to be evacuated to Texas to be near Karen’s two sisters.  Karen had to place her mother in a nursing home.  Nursing homes can be such sad bad places.  She lasted 8 months.

I painted the New Orleans that Karen loves upon her back, both the tragedy and the jazz.  I painted the Hubert H. Humphrey building that houses Health and Human Services.  I painted a blue moon that is also a Blue Button.

Karen lives in DC most of each month.  Her loving husband Jay and treasured pet dog Abita live in New Orleans.  She goes back and visits when she can.  When she is home she enjoys her time with her family and focuses on her loved ones entirely, but when she is in DC she focuses on the health of the nation.  

She thinks about what she can do to make our system better after watching the waters rise, after watching her mother die, after helping those who are lost within a broken system.  She is the legacy of a free lunch and if I were member of the status quo I would be running scared.

Karen DeSalvo has learned that in the darkest hour when things are irrevocably broken, you have a clean slate upon which to create a new and shining world.

Time to Leave the Island

This is #NHITweek, that would be National Health Information Technology Week, to the twitter illiterate.  I had the honor and pleasure of painting once again in the great hall of Health and Human Services as some amazing people from ONC, The Office of The National Coordinator for Health Information Technology spoke at a meeting entitled “Consumer Health IT Summit.”

So much has happened and many things have changed in the four years that ONC has worked on Meaningful Use and consumer engagement.  These changes were visually manifest in the fact that half of paintings in the room were worn on the backs of jackets rather than hung on the walls of these hallowed halls. 

Members of the Walking Gallery showed up in large numbers! Keith Boone, Casey Quinlan, Don Fluckinger, Matthew Holt, Donna Cryer, Mary Anne Sterling and Nick van Terheyden were some of those who walked wearing their powerful stories on their backs.  It also made my heart glad to see so many past and present federal employees wearing their jackets at an event at HHS.  Todd Park, Lygeia Ricciardi, Joshua Seidman, Peter L. Levin and Farzad Mostashari all wore their jackets while talking about the future of medicine and technology.

It was a lovely day because I designed the gallery so this kind of visual storytelling could become part and parcel of any health policy dialog. In the past, Individuals have questioned my decision to paint 236 jacket paintings basically for free.  I responded to them saying I designed The Walking Gallery this way so even federal employees could tell their stories.  The gallery accepts all who wish to walk, the gallery jackets have no monetary value and the walker wears them to at least three events of their choice per year.  All of these rules were designed to allow reporters, providers, patients and federal employees to be part of this movement toward truly humane healthcare.

I asked Farzad if he would join us in the gallery several times before he acquiesced last year.  Farzad is an amazing leader in healthcare and would not do anything that would be considered out of bounds in his role as a federal leader.  I assured him that I designed the Gallery so men and women such as him could join.  (I even had an opportunity to talk the ethics lawyers at HHS and they assured me I designed The Gallery in such a way that federal employees could participate.) Last year at a similar consumer meeting Farzad removed the jacket from his back and I painted it on the spot.  

This is Farzad’s jacket: “The Three Stages of Meaningful Use.”

In this painting, Farzad stands wearing his famous bow tie with a smile on his face as three waves shaped like the letter “M” descend upon him.  This represents his life’s work at ONC and his guidance of the implementation of a truly “Meaningful” Use.  In his hands he hold’s a blue button in a pose of reverence.  Last winter 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.

This week at this consumer event Farzad gave us his last words of wisdom as he prepares to leave office.  He told us we were the misfits.  We were the ones who were early adopters or rode our bikes to work in a city of automobiles.  We would have to spread the vision of HIT and consumer empowerment to the wider world.

So I began to paint “Time to Leave the Island.”

In this painting a Blue Button doubles as the Island of Misfit Toys from the classic stop motion animation Rudolph the Red-nosed Reindeer.  The Text “All Misfits Welcome Here” is inscribed upon the button.  Farzad springs “out of the box” and fist bumps with Leon Rodrigeuz (as a polka dot elephant from OCR, Office for Civil Rights).  Leon told the crowd about the support OCR would provide in helping patients access their records and re-affirmed the OCR’s stance that data withholding from patients is just as bad as illegal disclosure. 

To Farzad’s left in the painting is and elf version of e-Patient Dave holding his granddaughter.  Dave treated us to a fast-paced speech that encapsulated all of the strides in the participatory medicine movement these past four years. He ended on that most important note; getting to live, getting to hold this child was why we do what we do.   To Dave’s left a doll version of Lygiea stands with a smile on her face and a Blue Button on her lapel as she helps patients enter the ongoing dialog.

Above the island flies the plane that could not fly, now bedecked with a streamer saying “Checklists Patients Included.” The alludes to both Atul Gawande’s campaign in the wider world of health to embrace the use of checklists and Lucien Engelen’s campaign to improve patient inclusion in medical conferences.

Around the island patients fly or swim propelled speedily along with hashtags on twitter. They are spreading the messages from this day around the world. 

I finished the painting as Farzad closed the day.   I take his advice to heart.  We misfits need to fly into the world of business, research and pop culture.  We need to open minds and hearts.  I know so many of us will miss Farzad heading ONC, but I for one can’t wait to see what he does beyond the island. 

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

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

"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. 

Custom-Tailored Meaningful Use

Almost one year ago Paulo Machado called me on the phone.  I had been following him on twitter for a while, but he had recently seen Matthew Browning wearing a Walking Gallery jacket and he wanted to talk with me.  He called me up and we talked for a bout an hour about the Walking Gallery and my mission as a patient activist and finally he stopped our somewhat circular conversation with a statement.  

“Okay I have you figured out.  You are doing all of this because it is the right thing to do.  You are a do-gooder.”

I said, “Yes.”

He said, “Fine, I will tell you my story.”  About two weeks later we found ourselves at the same event in Philadelphia July 13-14, 2011 at the Regional ONC Meeting. I would paint four jackets in two days and Paulo’s would be the fourth.  He took it off his back and it was a very special jacket.

This is Paulo’s jacket “Custom-Tailored Meaningful Use.”

This jacket was one of the last jackets made for him by his father.   Paulo’s father Armindo became a tailor when he was only a preteen.  He was a master tailor as an adult.  He was amazing and could make any garment.  He immigrated to America in 1969, first working in the textile mills in Philadelphia.  When the mills closed he opened his own tailor’s shop in South Philly.

Paulo worked in the shop as a boy; he would cut and press.  As he grew older he would run the register and handle sales and generally help his father.  When Armindo was in his early forties he began to see his doctor because of some problems he was having.  For the next ten years he would be misdiagnosed with hemorrhoids.

Finally it was determined that he had colorectal cancer and he needed emergency surgery.  Neither he nor his second wife wanted to make waves or question treatment options.  Armindo had a deep respect for doctors that verged on awe as well as having a language barrier that affected his care regiment.  He continued to feel poorly and suffer pain in the following months.

He died at the age of 52.

If you look at Paulo’s jacket you will see his father.  Armindo is wearing the gown and slippers of a patient as his sits at his sewing machine.  Behind him is a pin up board of patterns for a suit entitled Custom-Tailored Meaningful Use.  The parts are labeled ONC, RHIO, ONC, CMS and Beacon.  But Armindo has no fabric beneath his needle as he has been given little tools to help craft legislation. 

His sewing machine has been placed squarely on a golden path that leads to a key.  Along the path are the tombstones of the dead.  These are the ones who have fallen as we wait for better communication and timely access to our records. 

Above the sky is filled with eyes.  These are the eyes in HIT.  They are watching this vignette unfold.  They can learn from this and change the outcome for others. 

Paulo believes care must be personalized clinically, and health policy must be personalized as well.  It must be custom-tailored to the need of the patient.  Technology can make this a reality.  A ready to wear one-size fits all approach will help no one and will chafe over the years.

For the past year Paulo has worn his jacket so many times.  He wears this jacket and people ask questions and listen to his answers.  He spreads the joy of his father’s life in the jacket his father so carefully crafted these many years ago. 

Everywhere Paulo goes he is held in a custom-fitted embrace and I am honored to be part of that.  

Cinder Blocks and Patient Summits

When I was a child I went to an elementary school that had few resources.  In fifth grade our class was donated a large amount of books.  We were very pleased to have them, but we had no bookshelves on which to place them.  My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinder blocks so we could make shelves.  The lumberyard manger said yes with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.  

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard.  Some of us grabbed the two by fours, some of us cinder blocks and some us combined the two to make a carry yoke for two students to heft.   We walked those blocks all the way back to school and up three flights of stairs.  Then we assembled those shelves and placed the books upon them.  We stood back and looked proudly at our work.  I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed.  It wasn't pretty, it wasn’t perfect, but it was ours.

Recently, I wrote Pecking Order, a post recounting a webinar call on May 22nd between patients, a contracted PR firm and CMS officials.  The call was supposed to be a collaborative webinar session replacing an in person patient summit due to severe restrictions on federal travel. Sadly during the call patients did not have much time to speak. That changed an hour and a half in, when I spoke out. The patients took over the call and spoke about our views on the CMS funded initiative Partnership for Patients. 

It became a call to action.    

In the 22 days hence we have done quite a bit.

On May 22 we grabbed the domain name for Partnership with Patients and began the facebook group.  At this point there are over 300 members in the facebook group from every field of healthcare: patients, nurses, programmers, doctors, venders, transcriptionists and lawyers.

On May 23^rd I posted Pecking Order.

On Thursday May 24^th I spoke with Kathleen Siedlecki on the phone.  I encouraged her and her team to attend Mark Scrimshire’s Healthcamp on June 4^th in DC.  

On Friday May 25^th I spoke to Dennis Wagner, co-director of the Partnership for Patients Initiative.  He apologized about the direction the webinar had taken.  He also said he would be joining the Walking Gallery.  I told Dennis we planned to crowd source patient ideas for how to best promote this patient safety agenda.  We scheduled a meeting with the P4P team at CMS offices on June 13th.

Over Memorial Day weekend, Kathy Nicholls, CMT, AHDI-F, Certified Inbound Marketing Professional, was hard at work volunteering her time to build the Partnership With Patients Web Page.  We bounced emails back all weekend.  I also spoke with advocates such as Helen Haskell and Julia Hallisy by phone.  Many of the advocates like Martin Hatlie, Pat Mastors and Amy Berman, that were part of the original call emailed back and forth throughout this time and in a spirit of sharing I looped the whole PR team into the email thread.  I got Out of Office replies from them all.

It was a holiday weekend, but for many advocates this is more than a job, it is a mission that we ply 24-7.

By May 31^st the Partnership with Patients webpage was up.

Friday June 1st, Kathleen Siedlecki, who ran the P4P webinar call, visited the mural 73cents. I heard about the constraints both she and the government work within.  More than ever, I appreciated the freedom of being an independent advocate that collaborates with others.

Saturday, June 2nd, I spoke with Chuck Denham, MD from TMIT and Jeni Dingman, patient advocate about this new collaboration.

June 3rd -6^th, Lori Nerbonne and Lisa Morrise would attend the IPFCC (Institute for Patient and Family Centered Care) Conference. And crowd source thoughts there.

Monday June 4^th, During the HealthcampDC we created a collaborative dialog in real-time and designed a session on the spot talking about Partnership with Patients and Partnership for Patients.  Kathleen Siedlecki attended, as did many advocates. Attendees included Ted Eytan MD, Whitney Zatzkin, Greg Masters, Kait B. Roe, Susan Hull RN,  Fred Trotter,  Kristen Andrews, Robin Miles-McLean, Tiffany Peterson and Pat Salber MD.

We were trying to build a grass roots strategy aligned with CMS and ONC goals ideally within one week.  We wanted to inspire regular folk to join the movement, like Robin Miles-McLean who jumped in feet first. Gregg Masters spoke about videos that could engage.  We spoke about connecting communities and connecting forces.  We spoke about sharing info on up coming events, as we did not know when meetings and conferences were being held both locally and nationally.

Fred Trotter told us about his focus on writing software for patients that reduced medical error.  We spoke about bringing the e-patient community into this dialog.  Susan Hull shared her experience of sitting on airplane ride beside a mother of 2 kids with cystic fibrosis, the mother had the marvelous idea she should administer drugs at the hospital and receive education she could carry home.

We spoke about creating a patient safety poster series for placing hospitals that are visually stimulating and not patronizing.  These posters could be images donated by artists.  We also could create a competition; young children could enter and receive a prize for best posters that support the Partnership for Patients initiative.  We acknowledged that many patients do not know their rights or safe practices within a hospital setting. We also spoke about QR code hijacking and other edgy ways to get the message across.

1-800 number for healthcare harm was an idea that was very well liked by the group.  We also wondered if that could be used to create a database of regional healthcare harm.  We talked about the potential of viral twitter attacks on hospitals with reports of harm, yet are not responding to those they injure.

We talked about the power of Engage with Grace.  We also talked about Honoring Choices programming from PBS coming out of Minnesota and Gunderson Lutheran’s amazing compliance with Advance Directives.

We spoke about a board certification in patient safety that is now available and wondered if any patient had taken the course.   We also spoke about SpeakerLink.org and the importance of including patients as paid speakers.  We spoke about the Plantree model of care and IHI open school and how that applies to this movement.  We finished up focusing on a photo resource that would show real pictures of patient care.  That has already begun on flickr, but it needs to be on Pinterest as well.

From that discussion and prior phone discussions with other advocates, I created this power point that was presented before CMS: Partnership for Patients meeting yesterday.

Partnership with patients

View more presentations from Regina Holliday

It was well received.

Dennis Wagner said he could see that some of these suggestions were immediately doable.  He said the next slide set he designed would have no stock photography within it, only crowd-sourced real pictures.  He would visit our flickr page and learn more.

The CMS team re-iterated that they did not believe the next meeting would be an in person one and it would need to be webinar again.  I then specified they must try to open it up to more people, so they should create a twitter hashtag so many more voices can be part of this discussion.  Kathleen thanked me for coming to the meeting and said she really enjoyed hearing our strong voice in this space.

I also announced that we were creating our own Partnership With Patients Summit in Kansas City September 21-23, 2012.  I spoke with Clay Patterson and Amy Burgess at Cerner and the folks at Cerner have approved hosting us in their continuing educational facility on the Riverfront property and former address of Sam’s Town Casino in North Kansas City.  


I loved that facility when I visited it one year ago. Think Kaiser Permanente Center for Total Health, but even cooler, with more neon lighting, a town square and some music from Tron.  Some of the Cerner team looked at me quizzically when I told them how much I loved the space, they said, “You do know this is just an old failed casino, right?” 

But I see with new eyes.  I see it with the eyes that saw cinder blocks become bookshelves. 

I see what can be without old prejudice.  When I look at Cerner I don’t see an old legacy EMR system.  I see a future cloud/ legacy composite that could save lives.  I see one company among many, many companies willing to collaborate with patients.  I see what amazing things we can accomplish if we all work together and shoulder this task.  I see a space where we can come together and educate patient speakers about HIT, patient safety and health policy.  I see the potential of helping 200 new patients advocates as the next generation of e-Patient Dave’s, Trisha Torrey’s and Regina Holliday’s.

So here it is the ask:  Who will take up their cinderblock and follow me? Register here.

Still Life

As a busy parent, I often forget to sit upon the floor and play toys for a moment.  Sometimes after two or three meetings in one day, I will be racing home to pick up my little six year-old Isaac from his extended day program.  He will smile at me with joy when I enter the room, he will race into my arms and say that he loves me.

And I will take a breath. 

I will slow down and as we leave the facility. We will stop to smell the peonies, and rejoice in the moment.  At this moment there is sunlight and joy, beauty and flowers, and life stills.

We are making a picture in time created by two beautiful souls, one entwining the other creating a masterpiece.

Each day this drama is retold as countless parents and countless children march upon their paths of life.  Often these paths will diverge, but sometimes gloriously they come together.

This is the jacket story of Leela.  She is Lygeia Ricciardi’s daughter seven year-old daughter.  Many times throughout the year Leela will attend HIT (health information technology) meetings as a painting on her mother’s back.  She is one of two beautiful children on Lygeia’s jacket painting: “Rosetta Stone.”  Lygeia is the Director of Consumer Engagement in the Office of the National Coordinator of Health Information Technology. 

On June 4^th Leela officially joined The Walking Gallery with her masterpiece: “Fruit is Healthy.”

Leela painted this on her very own jacket for the entire world to see.  She walked bravely and proudly in a crowd of adults.  She is one of three children who have joined the gallery by painting on their own jackets.  

Her jacket is joyful.  It represents what healthcare should be.  It is colorful healthy choices.  It is moment in time.  It is a still life.  This moment is so bright.  Lygeia and Leela stand side by side each encouraging healthy food choices, by the breast or by the bowl.

And for moment in our race to improve care, life stills.

Welcome to The Walking Gallery Leela.

Lives not Livelihoods in Meaningful Use

If I were to die tomorrow and all that was left of me was my right hand, you would know two very important things about me.  You would know that I am a painter and I was a writer.  No matter how often I scrub my fingers the patina of paint discolors my cuticles and the cracks in my skin.  And though I left a childhood of writing lines 30 years behind me, I still have the finger callus of a longhand writer. 

If I were to die tomorrow, and all that was left of me were these words that I write.  You would know I learned how to type on a typewriter.  The two spaces behind each line is a tell.  I learned to type in an age where uniformly sized keys created unevenly spaced letters.  Hence two spaces were necessary to signify the end of a sentence.

I do not need to do that anymore.

Yet, I persist.  I have tried and tried to change my ways and press the bar only once, but I fail.  I have fallen into the siren sway of habit.  My muscle memory runs ahead of my mind and leaves my thoughts to rest two spaces behind the last.

Today while working on my public comments for Meaningful Use Stage 2, I saw once again that the American Hospital Association has decided to promote livelihoods over life itself.  They do not support our rallying cry that patient data access must be part of Meaningful Use and it must be timely.  In stage one Meaningful Use the rule called for access within 4 days of request.  As we head toward defining stage 2 many patient advocates are asking for data access within 24 hours or real-time.  The AHA (American Hospital Association) is asking us to go back in time and accept data access 30 days after a care episode as was codified under HIPAA.

AHA is stuck two spaces behind us. 

 This organization is living in a world of 30 years ago, consisting of typed reports and hands that are marked with the callus of a scribe.

Their very insistence of a return to the rules of yesteryear demonstrates the dangerous path of habit itself.  Once you begin to design systems without patient inclusion it becomes habit to leave us out.   Habit tends to settle like concrete, pliable only in it early stages and hard as rock as it cures.  Like concrete, habit crumbles in time, but often it takes decades or jackhammers to remove it.

I urge those who are in a position to create the final rule of Stage 2 Meaningful Use to be brave and leap beyond a past care model that left patients out and embrace a new tomorrow of patient inclusion.

I urge everyone to publicly comment before May 7, 2012.  Please send a message strong and clear that we are all patients in the end and we deserve to see our own information.  Do it for the ones who died due to simple errors hidden within closed records or comment for the children yet to come who will live in a different tomorrow.  They will not comprehend an education system that creates a writer’s callus. They will expect timely information.

You are setting the concrete upon which these children shall tread.  You decide.  Shall they lead the world or shall they walk two steps behind? 

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

View more presentations from Regina Holliday

Who taught you how to be a patient?

On a recent Saturday my son Isaac, Ben Merrion and I filmed a short video about Electronic Medical Records.  Our video was called "Your Medical Record Follows You."  You can vote in favor of it here.



It is part of the "What's in Your Health Record? Video Challenge" from Challenge.gov  There are many videos that were submitted and they address the need for patient medical record access.  This is a cause which is near and dear to my heart.  I urge you to peruse the videos listed.

Our video was about a very special day last year when Isaac and I went to a local clinic to get his eye checked for pink eye.  The clinic was DC Immediate and Primary Care.  I was amazed when we entered the facility.  The receptionist handed my five year-old son a netbook and asked him to begin building his electronic medical record profile.

I was so happy!  I speak about the empowered patient at venues nationwide, but now it was happening right in front of me.

Isaac filled out what he could and I did the rest.  We submitted his profile online using WiFi.  Then Isaac settled into his chair and began researching snakes on YouTube.



Soon it was time to be seen by the doctor.  Isaac carried the netbook into the appointment.  The doctor checked his eyes then we googled "Conjunctivitis" and talked about his condition.



Isaac and I left very happy about his experience.  A couple of months later we went to his regular check  up at Kaiser Permanente.  Isaac sat impatiently on the examination table as his doctor typed information into his medical record.  After answering a few of her questions, Isaac jumped down off the table, walked over to her keyboard and asked her, "When is it my turn?"



Before Isaac and I created a video about this story, I painted a Walking Gallery jacket about it. Here my son Isaac is holding the netbook we used at DC Immediate and Primary Care surrounded by classic toys.

Now, when he plays doctor he expects to see a computer or tablet being used. This made me think of how we teach our children to become empowered patients. Do you remember playing with your Fisher Price hospital? Did you play more with the doctor or the patient? Was the care a balanced partnership? Playing Operation as youngster gave me the impression that surgery is a joke, medicine is about making a pile of money and avoid that buzzing alarm at all costs.  The toys we choose and how they are designed very much impacts the way our children relate with the world around them.  I want to see a doctor's kit with technology included, not a black satchel with an antiquated head mirror.

If you ask to see a toy cash register at Child's Play (the toy store I have worked in most of my adult life), I will show you a register with a working calculator and a pretend credit card function. I would never show you the 1970's Fisher Price cash register with side crank handle and mechanical bell. It is no longer available. Registers are not made like that anymore.  So, why does every doctor's kit I see look like it came right out of 1970? We can do better. We owe it to our children. I respect and revere our youth. They are so capable and flexible in their thinking.

We teach our children through play.  If you watch this video you will see Isaac pulling a little wooden toy dog.  It has a carry pouch on it that is labeled HealthIT.gov. Isaac the patient, pulls this dog along and it follows him. 

The Sycamore Tree

This week Alex Albin was on my mind.  I knew I was rapidly approaching the one hundredth jacket in the Walking Gallery and I wanted that jacket to be Alex’s.  Alex had wanted to be part of the Washington, DC Gallery on June 7^th, 2011 but she could not.

Then Alex planned to attend Health 2.0 in San Francisco in September, but instead she had to fly to Colorado to undergo her 17^th Surgery.

Alex very much believes in compassionate and informed patient-centered care, as she is very much a patient.  So this is Alex or @msaxolotl as I have known her on Twitter.  I love her Twitter handle.  @msaxolotl.  I think it is the name for a dinosaur or some ancient flying reptile that once gracefully soared above us but now is lost in the dust of time.

Doesn’t she look happy?  I loved her twitter picture at first sight.  I marveled at the juxtaposition of soft pliant flesh resting on curvaceous weathered wood.   Yes, I loved the picture, but I had no idea how much the old tree and Alex had in common.  For Alex has a condition that mimics “dry rot”:  avascular necrosis or osteonecrosis.

She was diagnosed with MS in 1994 after a bad kidney infection and odd neurological symptoms.  She had a paralyzed bladder and would lose her balance.  She was treated with steroids.  Eventually she began to use a wheel chair to get around and could barely hold a cup in her hand.

She was only 34 years old.

She spent the next three years trying to regain control of her body and her life and was prescribed beta Interferon at the cost of $1,500.00 per month. 

Then in 1997, the bone pain started.  She saw a Neurologist and an orthopedic surgeon on the same day.  The neurologist had some good news; she did not have MS.  But her orthopedic surgeon said, “Well, you have this condition in both hips called Osteonecrosis… where the bone dies.”  This condition will plague Alex for the rest of her life.  To further add insult to injury this disease is most likely a direct result of the blast of steroids.

Alex has now completed 17 orthopedic surgeries on hips, knees, shoulder, elbow and wrists in order to save her joints.

Due to the honest and frank appraisal of a local doctor, Alex was informed she should see Dr. Steadman in Colorado.  She has had most of her surgeries there, but has trekked all over the United States to get appropriate care.

Alex is an e-patient: which she defines as engaged, electronic and empowered.  She has used every tool in her arsenal to fight this disease.  But she is a very special e-patient because she does this for us all.  She is a patient who speaks for other patients standing on the firm foundation of her patient experience.

I see her frequent tweets and questions posted on the high level threads of thought at the Society for Participatory Medicine.  And I am so very thankful that Alex is part of this movement.

So this is Alex’s Jacket: “The Sycamore Tree.” 

In this painting lovely Alex sits perched within the branches, a loving smile lights up her face.  She is dressed in a red little red cocktail dress, and every eye is drawn toward her face and her body.  But how that lovely body suffers, for Alex’s limbs are pinned by the tree.   At hip, shoulder and wrist living shafts of wood pierce her flesh and reach for the sky.

But why is she perched within a sycamore tree?

She is so perched because Thursday was a very important day for HIT and consumer engagement in Washington, DC. 

I had received several invitations to register for the ONC meeting available to join by webcast November 17, 2011: ONC Grantee and Stakeholder Summit.  I was so thankful that I had the opportunity to attend the meeting in such a way.

David Blumenthal began the day with opening remarks.  Then at 9:00am Farzad Mostashari, MD, ScM, National Coordinator for Health Information Technology, Office of the National Coordinator for Health Information Technology (ONC), HHS delivered a speech.  Farzad was brilliant and I am continually amazed at how his passionate voice has grown since becoming national coordinator.  I sat riveted tweeting the speech for the entire 45 minutes. 

Then at 9:45: nothing. The feed went silent as people gathered for a break.

I despaired.  If only I could be there in person.  Then I glanced up to the top of the web page and saw those magical words:  “All Thursday sessions are open to the public.”   I changed out of my painting cloths and into conference attire and headed downtown. 

As I traveled I sang under my breath a song from long ago days of Sunday school.

“Zacchaeus was a wee little man

And a wee little man was he


He climbed up in a sycamore tree


For the Lord he wanted to see

And as the Savior passed that way


He looked up in that tree


And He said, “Zacchaeus, you come down from there! 


For I’m going to your house today

For I’m going to your house to stay.”

I sang because I was feeling rather like Zacchaeus, unable to get a clear view and willing to make a spectacle of myself just to be near the amazing people who spoke with such passion about medical records and patient access.  And as I sang I thought of Alex far away, unable to attend event after event due to the constraints of a body filled with dying bone.

When I arrived at the event, I went straight to registration, I explained I had been watching online and noticed it was open to the public so I had come in person instead.  The lovely ONC staffer explained the main ballroom was registered to a point of near capacity.

Thus… no non-essential people had been invited. 

That rang a bit in my ears.  Non-essential.  I looked around for other patient speakers who were in attendance and did not see them.  I saw a lot of venders, providers, governmental employees, and public relations folk from Ketchum, but I did not see a lot of patients. 

So, I wandered over to the Grantee Consumer e-Health: “Take the Pledge” booth.  My friend Cindy Throop was sitting there.  She was manning the station as a favor but would have to leave soon and asked if I would like to help.  So for the next few hours I asked every passerby from data holding organizations to sign an online pledge stating: “We pledge to make it easier for individuals and their caregivers to have secure, timely, and electronic access to their health information. We further encourage individuals to use this information to improve their health and their care.”  Or if they were non-data holders the pledge stated: “We pledge to engage and empower individuals to be partners in their health through information technology.”

During that time I met a lot of great people and quite a few took the pledge.  





I saw other Walkers from the Walking Gallery.  Ted Eytan, MD from Kaiser was wearing his jacket, as was Lygeia Ricciardi, Senior Policy Advisor for Consumer e-Health, ONC.  I also met in person an amazing Twitter voice @BangorBeacon aka Andrea Littlefield.

Later in the afternoon someone came over who had taken the pledge and wanted to know next steps.  I said the ONC would be contacting people shortly, but there was nothing stopping them from actively applying the oath within their organizations and personal life. 

I explained I may be just an artist and patient advocate, but I was already living the pledge.

Hence, there is a Sycamore that upholds Alex in this painting. 

This is the lowly fig Sycamore.  The fruit of this tree historically was fed to only pigs and the poor.  It wasn’t fit for climbing.  But sometimes when you so desperately want to see, desperately want to help, you are willing to suffer extreme discomfort and public ridicule just to view the promise of new tomorrow.

And as I spoke to the grantee, I was no longer frustrated by being considered non-essential in the downtown meeting.  For the ONC had done so much to include thousands of patients in the online webcast and Twitter stream whilst those patients could sit in the privacy of their homes.  They included people who, like Alex, are recovering from surgery so far away.

They included people who could not climb trees. 

It seemed as though the ONC folks were singing to me through a pledge. “I am coming to your house today! I am coming to your house to stay!”

I am sad that Alex could not walk with the Gallery in June or in September.  I am sad she may not walk in months to come.  But the Gallery has deep roots, and we shall walk for her.  Every time one of the Gallery members walk, they represent us all.  What a mighty weight that is.  We wear tragedy upon our backs.  We may bend and stoop with the weight of sorrow, but we shall bear it together.

Do you know what a Sycamore is?  It is a Planetree:  a tree that Hippocrates sat beneath, the tree that Zacchaeus climbed upon and a symbol of another way of practicing medicine.

Welcome, Alex on your tree, Welcome to The Walking Gallery.