Let Freedom Ring

This winter was hard for me. Winter always is.  In my mind, I walk through yesteryears and live through the months I lost my husband Fred. 

I had a bad cough in January and February just like I had in 2009.  My cough was pertussis this time, not a chest cold.  This time it was my ribs that broke from explosive coughs, instead from metastasis as Fred’s had.

This winter I felt I had to finish my memoir, so while coughed I wrote.  I tied together the story that I have been working on for five years.  This past week it became available on Amazon and it is called The Writing on the Wall.   I had wondered why I felt so frantic about quickly finishing my book on the importance of patient data access, but I have learned not to question such feelings.  I just act on them.

Then I went to HIMSS15 in Chicago.  Then I heard CMS (Centers for Medicare & Medicaid Services) was considering cutting a key measure that affected patients in Meaningful Use Stage 2.  Facilities and Providers complained that they were not able to ensure 5% of patients would view, download or transmit their data in the Meaningful Use Stage 2 reporting window.  Anyway, they assured CMS, patients did not want access anyway.  So CMS proposed gutting the legislation, removing the 5% requirement and replacing it with literally “1” patient.  

That is a slap in the face to patient rights and all the advocates who have fought so hard to ensure patients could access their data.  That is a slap in the face to projects like Open Notes, a study that proved that patients have better engagement when they can read their records.   

We must act swiftly to counteract the belief that patients do not wish to access the information that is by rights is theirs. 

1.  I am asking everyone to comment on the federal register Medicare and Medicaid Programs; Electronic Health Record Incentive Program-Modifications to Meaningful Use in 2015 through 2017 before June 15, 2015:

https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to

The section I am very concerned about is
II. Provisions of the Proposed Regulations,

• B. Meaningful Use Requirements for EHR Reporting Periods in 2015 Through 2017
• (c) Changes to Patient Engagement Requirements for 2015 Through 2017

Here is what is proposed: 

 "Patient Action To View, Download, or Transmit Health Information

++ Remove the 5 percent threshold for Measure 2 from the EP Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient seen by the provider during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider.

+ Remove the 5 percent threshold for Measure 2 from the eligible hospital and CAH Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient discharged from the hospital during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider."

You need to let CMS know that patients do care and we do want to use our portals or access Blue Button.  We do want to be a partner in our care and that starts with access. might find it scary to write a comment, but fear not.  I just self-published a book as a dyslexic person suffering dysgraphia, I swear I did my best but my work is filled with spelling and grammar errors.  Even so, the beauty and purity of story shines through.  Tell your story too and explain why it is so very vital that patients be able to go online and read their information in a timely fashion.  If it is challenging to use your portal let the vender know and let the provider know.  If you need help getting logged on let your doctor and their staff know.  We will not make the system better if we do not use it and improve it. 

2.  I am asking you to stand with me, to paint with me, at noon on May 20, 2015 in front of the Health Human Services Headquarters Building at 200 Independence Ave, SW in Washington, DC.  Let’s show that we care in this very public way.  Even if we are just artists, even if we are just regular people, we care about getting access to data.  Lets paint about core measures and blue buttons on a concrete field.  Lets gather The Walking Gallery and show HHS we care.   I ask you to do this on May 20^th, the day my husband entered hospice in 2009. 

3. Please SIGN this petitionTODAY and share far & wide with your moms, family, friends, colleagues and networks.  Be part of a movement of individuals working toward greater patient access. 

Hashtag: #MyData

Resources:

·         PETITION: www.getmyhealthdata.org  (Bitly: http://bit.ly/1QyfYuG)

·         BLOG POST: Do it for Mom: Sign Up to Support Electronic Access to Your Health Records Today

·         BLOG POST: Mother’s Day is patient records access awareness day for consumer health advocates

·         FACT SHEET: What Health IT Means for Women (National Partnership for Women & Families)

4.  On July 4^th let’s declare a Data Independence Day!   That day we should all go on our patient portals, send our doctor an email, schedule an appointment and download or view our health information.  I know it is a national holiday and the doctor’s office is closed.  That is one of the reasons we patients want portals and Blue Button access.  We want to access information in a timely fashion day or night, whether it is a holiday or not. 

And God forbid something dreadful happen on a holiday.  It did in my small town last year. A local third grade boy was burnt on the Fourth of July.  A sparkler ignited his clothes. Most of his body was burnt and he is still having skin graft surgeries.  He is exactly why we must have access.  Illness and injury happen regardless of holiday schedules; and the internet never sleeps.

Have you listened to that song by Martina Mcbride?  It is called “Independence Day.”

“Let freedom ring, let the white dove sing

Let the whole world know that today

Is a day of reckoning.

Let the weak be strong, let the right be wrong

Roll the stone away, let the guilty pay

It's Independence Day.”

In that song abuse is described.  Independence Day is the day abuse could no longer be tolerated.  I suffered through 17 years of child abuse and I can tell you being stuck in a hospital without access to information hurts your heart and soul, as assuredly as any belt or switch ever hurts your skin.  If CMS guts this measure, the welt they will create will become an insurmountable ridge separating us from our data.

This year Mother’s day falls on my birthday again.  Just like it did in 2009.  This year my husband will not give me a birthday gift or a Mother’s Day gift.  He died too soon, partly due to poor access to data.  You are still here and can give the most amazing gift. 

You can publicly ask for your data, you can paint with me or demand a day of action.   

It is your choice.  You can help make a better future for us all.    

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

And this is a happy story.

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


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

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

The knights and ladies of Weber Shandwick offered their assistance.  The lovely lady Katherine Siedlecki, 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.    

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

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

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

I painted Apples to Apples.

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

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

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

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

Key Findings from Leapfrog:

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

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

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

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

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

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

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

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

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

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

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

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

Not Your Father's CMS

Several times I have braved the sticky DC heat to trudge up the street towards the headquarters to Health and Human Services (HHS).  Currently there is a great deal of construction in the area.  Street grit and dust assail those who arrive by the metro tunnel.  It is very bright at street level and everywhere I looked stark concrete reflected the summer sun.  I walked up the street to the Herbert H. Humphrey building that houses HHS.  It was designed in the brutalism style.  The building is a white box with a repeated series of box like windows.   The grounds surrounding the building are white granite and concrete.  There is nothing of nature, no tree, no grass: all is hard angular lines.

I walked through the doors and passed through security.  The interior of the building is a classic space with warmer friendly colors.  Here the dark wood counters and floors of polished granite welcome the weary health enthusiast. 

Beyond security is the Great Hall.  This large open space was designed for change and the seating is modular.  High above large portraits of the former secretaries of HHS loom larger than life.

I came to HHS this day because John O’Brien, Senior Advisor of the CMS Innovation Center had emailed me an invitation to attend a National Stakeholder Briefing on Health Insurance Marketplace/Exchanges.  I took a deep breath and prepared myself for the next 2 and ½ hours of what I would assume would be a lecture about the Affordable Care Act.

I should have realized that this would not be a traditional meeting when I was handed a CMS packet containing only three sheets of paper.

Let me repeat that: Three sheets of paper.  That is quite odd.

I took my seat and then began to read my packet and practically squealed in excitement!  Written under a CMS logo were words I knew very well!

“Rules

1.     Whoever is there is the right group.

2.     When it starts is when it starts.

3.     Whatever happens is all that could have happened.

4.     When it’s over, it’s over

The Law of Two Feet

If you find yourself in a situation where you are not contributing or learning, move to a place where you can.

THIS WAS AN AMAZING DAY!  CMS WAS HAVING AN UNCONFERNCE!

I could not believe my lucky stars. The facilitator began explaining this process was an open space technique and they would be using it to discuss messaging around insurance exchanges.  He then asked the crowd of two hundred if any of those in attendance had experienced this process before.  I raised my hand proudly as did about ten other audience members.

He then asked for a volunteer to pitch their idea for a session and place it on the board.  There was quiet for a few seconds and then I jumped up and went to the front to grab the microphone.

“Hi, I am Regina Holliday and I am an artist who paints about healthcare.  I spent a great deal of my life uninsured and I would love to speak about how we can use art to reach people who are uninsured and need help.”

I then grabbed a marker and created the sign for my session.  People began to stand up in the crowd and slowly come forward to propose sessions and in about ten minutes the board filled.  Then we began to rearrange the chairs in the room in order to create session space. I went over to my session space to wait for our group.  Four people showed up. I know full well the rules of an unconference: “Whoever is there is the right group.” I quite enjoyed the conversation in our small group. 

The next session I attended was about the role of the Church in helping folks understand insurance exchanges and there were about 20 people in the group.  So in case you ever wondered at CMS talking about Art is scarier than talking about GOD.

The session on religion was great and was facilitated Lisa M. Carr, Associate Director of Faith-Based and Neighborhood Partnerships.   We had a wonderful group full of diverse perspectives.  Some people worked for CMS, some in advocacy and we even had a Reverend in the group.  We talked about Men’s Ministries, the importance of messaging from the Pastor and the different neighborhood groups that can be reached by one Church body.

All too soon it was time to place our chairs in a circle and report out.  A few people stood and expressed their excitement using this new method.  I spoke out too saying how happy I would be to tell patient advocates that CMS used this disruptive form. 

Before I left, I gave John a big hug and thanked him for inviting me.  HHS maybe shaped like a big brutal box, but the people who work there are thinking outside of it.

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.

HITECH Crossroads

Have you ever met Leah Marcotte?

 She is young and slight.   I met Leah at a meeting at Department of Health and Human Services.  She is very involved in providing the medical student perspective to the ONC and CMS.  She focuses a lot of her energy on HITECH and Meaningful Use. 

And she is blank slate.

I mean her jacket was a blank slate.  You see Leah just dropped off her jacket with my front desk. Her first name written on it and she left no patient story.  I even got her last name wrong.  (I confused her last name with Leah Wiseman.)  I put Leah’s jacket in the pile of jackets another artist could do, if they arrived to help in the final hours before the show.

In the early evening of June 6^th Robert Filley arrived to help.  Robert is an amazing artist with a degree in fine art and I put to work on some jackets that matched his style.  His style is serene and filled with vibrant color.  In the late evening his wife arrived.  She offered to get us food, but instead I asked her to paint.  “Oh, I am not an artist,” she said, as her eyes went wide with apprehension. 

I said, “Don’t worry! Remember I teach art.  You will be fine.  Just paint the background.   Here, I will even draw the outlines of where to put the sky, the grass and the roads.”

I am so glad that she was brave enough to pick up that brush and paint the background of “HITECH Crossroads,” because I can think of no one better than Anita Samarth to that job.  

In case you do not know, that amateur artist at my dining room table is the President and co-founder of Clinovations.  In a firm belief that we tend to do a pretty good job of describing ourselves, here is Anita’s bio from the Clinovations site:

“Ms. Samarth is the President and Co-Founder of Clinovations with more than 15 years of experience in the healthcare and technology industries. She is currently leading EHR/PHR benefits realization efforts and methodology for Clinovations and its clients and working as a SME for an AHRQ project synthesizing findings from six state/regional HIE efforts. Recently Anita led TA activities for the AHRQ National Resource Center for Health Information Technology (2005-2009), led SMEs and authored select American Health Information Community (AHIC) Use Cases for ONC, and led certification development for Electronic Prescribing and Interoperability for CCHIT. “

So for an hour, the three of us painted.  I was painting Christine Kraft’s jacket, Rob was painting Carol Torgan’s jacket and Anita was painting Leah Marcotte’s jacket.  And then it was the Witching Hour and it was time for them to stop painting and head home for some rest.  Then I looked at Anita’s painting.  It was amazing.  The sky roiled with confusion.  I knew exactly what must be painted to finish this piece.

I painted a female patient staring in confusion down a highway to infinity.  Upon the horizon is a street sign listing the various paths.  The sign is slightly askance.  Our patient walks in the middle of a highway labeled PHR (Personal Health Record) this shall soon merge into HIT (Health Information Technology.)  I wonder is our patient in danger of being run over by a speeding motorist in the PHR lane?  No, I decide, it seems as if this path is mostly abandoned. 

Upon the horizon, the sign directs us right to an EMR (Electronic Medical Record) or left to an EHR (Electronic Health Record.)  From the patient’s perspective, the EMR/EHR road cannot be seen at all.  All the patient can see is a slightly bent sign on a lonely road beneath heavy sky.  She doesn’t even know what those acronyms mean.

This is Leah Marcotte’s Jacket: HITECH Crossroads.  She is bright and funny, but in the pictures from Walking Gallery she is anonymous. The only picture I have of her is her back.  If I search for her on Google, I only find transcripts of phone calls or medical student rotation lists.  On twitter her avatar is an egg.  Where is Leah's Face?

You see, Leah personifies her jacket.  She is important.  She has a voice.  And people like Leah will create the future in medicine.  We may not see her face.  We may not know her name.  But she is creating the background of our HITECH reality, with as much power and emotion as Anita did.  And if we want full consumer participation in EHR adoption, we shall need patients and caregivers to as brave as Anita was.  They must be willing to pick up the brush even if they feel out of their depth.  The first  step to creating a Masterpiece is being given a chance to use the media.  We are all artists inside, let's paint a healthy connected tomorrow.

A New Day

I have two names.  I have always introduced myself as Regina.  Once, I was Regina McCanless.  Now, I am Regina Holliday.  But to my late husband Fred, I was someone else.  I was Reggie.  I was Reggie who worked in a Toy Store and read books with him on dates.  But when Fred died, I put Reggie away.  Oh, the folks who knew from years before and had met me through Fred still called me Reggie, but no one in Health 2.0 or patient advocacy did.  And that was okay, because Reggie died with Fred.   

That is no one in my new world of advocacy called me Reggie, until I met Chuck Denham.  I guess he saw my email handle and figured out my other name.  He began calling me Reggie and I called him Chuck- not Dr. Denham.  Then he began introducing me to others as Reggie.  I got some strange looks from Health 2.0 friends who always knew me as Regina.

Then Chuck introduced me as Reggie before the assembled crowd at The Partnership for Patients-NPP kick-off Meeting in Washington DC on June 16^th, 2011. 

Everyone began calling me Reggie, just as Fred had. 

Today is the second year anniversary of Fred’s death.  I am sure Fred would be proud that his Reggie represented the Patient Voice in such a meeting.  And I am really glad that I had the chance to attend, but 24 hours before I wasn’t invited.

I got an invitation to participate from John O’Brien at CMS on Wednesday evening.  I met John last July at my e-Patient Ephemera Gallery Show at Clinovations.

He spoke with me briefly and I began to follow him on twitter.  In March, I met him again and asked him if he would be interested in participating in a new patient-centered art action called The Walking Gallery.  He said he would love to.  He dropped off his jacket, but alas I did not get to it in time.  He walked with a fail whale on his back and I promised to paint his soon.

I told John I would love to attend the meeting and paint on site as well.  He said yes I could paint.  I told him I would paint his jacket that night.

This is John’s jacket: A New Day.

In this painting there are three John’s.  The John in the back was from years ago when he worked in sports broadcasting.  The next John is becoming interested in medicine and is studying pharmacy.  The final John is working at CMS and is involved in national health policy.  This John holds out a welcoming hand and invites the patient in.  In the background, a patient stands. 

She stands on the threshold of an open door.  Her arms are raised as if embracing a new tomorrow.   She has been invited in.

When I arrived at the meeting, I handed John his jacket.  Which he promptly dressed into and wore for the remainder of the meeting.  I was wearing my “Little Miss-A-Type-Personality” jacket.  So there were two uniformed members of The Walking Gallery present.

I set up my easel and began painting.  Everyone seemed very receptive to this.


I began by redefining the logo of the Partnership For Patients. You see the current logo depicts doing something to a patient rather than working with a patient.  So within the painting I painted the Doctor checking the patient’s heartbeat.  And the patient is embracing the Doctor and providing emotional support.  As I was painting this part, Helen Darling and Bernie Rosof Co-Chairs of the National Priorities Partnership were speaking. 

Soon Carolyn Clancy Director from AHRQ was up next and then Joe McCannon Senior Advisor, CMS.  Both of them said some very powerful things about the potential for positive change if we all worked together.  Next Dr. Paul McGann and Dennis Wagner spoke and they were dynamite, they lit the room with their energy and passion for the partnership.  I continued painting while they recognized my presence within their speeches.

Around 10:00 am Debra Ness, from the Partnership for Women and Children spoke.  I was so glad to see her speak again and hear her amazing passion.  I had just seen her present at the Annual National Partnership for Women and Children Luncheon on June 9^th, and she was just as dynamic at this event.  Next up was Richard Foster informing us about happenings in South Carolina Hospital Association. Mary Eagan from Honeywell presented a strong business case for supporting the Partnership for Patients.  And then the driving change session was finished by a presentation from David Pryor from Ascension Health.

At this point I was pulled aside to speak backstage for a few minutes with Don Berwick.  I said how much I enjoyed seeing him again.  Then I held his arms in mine as I told him that millions of patients were praying for him.  I locked my brown eyes with his hazel ones and told him to never give up.  I watched his eyes shine with sheen of unspent tears, for all the Ann’s, all the Fred’s and all those that suffer on this day in the current system.  He asked me if I would like to come up to the podium and speak during his allotted time and I said yes.  I also told him when he was ready to join The Walking Gallery I would paint his jacket.

Not long after Don Berwick called me to the front of the room.  I spoke of Fred and medical record access.  I spoke of the power of involving the patient and caregiver in medical model.  I explained the name given to me by an uncaring doctor and then spun around to show them I had embraced the term “Little Miss A-type- personality.  I explained that if we could have had daily and realtime access to his medical record Fred would have gotten better care.  I ended with a call to action asking them invite patients and caregivers into the team.

Soon the afternoon session began.  I painted the dual goals of the Partnership for Patients: a 40% reduction in Hospital Acquired Conditions and a 20% decrease in readmissions by 2013.  And I depicted them as children’s slides on a playground. 

The afternoon session was filled the ideas of attendees.  Everyone began networking and sharing thoughts and making individual commitments to what they would do to help.  Chuck Denham stepped forward and mentioned the Patient Speakers Portal that TMIT is creating with the help Trisha Torrey, myself and other amazing patient activists.  Each person stood to offer his or her commitment.  One gentleman stood saying, “I didn’t know I was coming to be part of an altar call.”  The crowd laughed, but I have never heard a statement more true.  There was such a spirit of giving in the room.   

I painted a joyous doctor sliding down the 40% reduction slide.


I painted a patient waving and looking over her shoulder at patients far off in the distance.  Soon it was time to conclude the meeting and I was asked to come to the front of the room and do a short speech explaining the painting.  First Paul McGann and Dennis Weaver spoke summing up the power of the day.

 Before, I spoke someone asked what was the “thingy that would hold this six pack together.”  Would we email, create a list serve?  What would it be?

I began to speak.  I asked those assembled, “How many of you are on Twitter?”  A smattering of hands rose.

 I said, “Look at this painting.  Do you see what is in this patient’s hand?  That is a smart-phone and this patient is live tweeting from her appointment.  You ask how will we spread the message?  Do you see that belt in this painting, and all those people standing…. outside the Beltway?   You want to know how we will stay in touch and spread the word?  We will do it by social media.

Did you know while we were here at least three people were live tweeting this event?  BunnysGotMoxie (Lauren  Murray), John O’Brien and myself are already spreading this.  And due to a photo that John tweeted, there has already been a blog written about this event.  Get on Facebook, get on Twitter.  The Partnership for Patients working with Patients and social media can change the world!”

I bowed my head in thanks to all those amazing folks, as the audience rose to their feet in applause.

And 24 hours earlier, the patient voice hadn’t been invited.  See what a difference a new day makes.

(This is dedicated to the memory or Fred Holliday II PhD. I love you. -Reggie)