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Sunday, December 2, 2012

Partnership for Patients a bed time story

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

(I am in red and he is in blue)
Thank you God for building us and loving us and caring for us, A-men.

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

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

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

Yesterday was a happy day. 

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

And this is a happy story.

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

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

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

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

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

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

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

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

What messy chaordic tables!  

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

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

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

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

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

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

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

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

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

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

Here is a happy story.  

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

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

But I cannot say it had a happy ending yet, 

because we are still living the story.

Good night.  God bless.    


  1. Regina, What a lovely metaphor, to match your captivating painting! It was a privilege to be in this room, with such a committed, passionate group of people. As you can tell from the emails, Facebook threads and Tweets, the big takeaway from the "patients in the room" (including Barbara Waldron and Dick Hanke-- hoping we're not missing any others), was the belief we can have impact. Kudos to Paul, Dennis, the Weber Shandwick team, and everyone who put their faith in this experiment. Success!

    So glad Isaac got his happy story :)

    1. It was such a delightful meeting. I cannot wait for the next one where we shall have even more patients!

    2. And next time we'll find a little table for your paints :)

  2. Reggie;

    Your artwork and story are both very warm, heart-felt & hopeful. I think it's a tribute to our journey to ensuring patients/family/caregivers are involved. Thank

  3. Wonderful writing and painting. It was good to finally meet you in person.

    Beth Waldron, I am a patient who was at the meeting also.

    1. Thanks! My mind was so tired I just couldn't remember everyone. :) It was good to meet you IRL too!

  4. Regina,
    Thank you once again for breaking down complex organizations. You have a gift that helps bring focus, humor, dignity and plain speak. Within this short and focused post I felt sorrow, literally giggled out loud and now have a better understanding of the Partnership for Patients.

    Good Night Regina. I'm not sure he remembers me but would you please tell Isaac that I'm also praying for more happy stories.

  5. Great story Regina, sounds like something close to Heaven. Thanks for all that you do, thanks to everyone there who cares, thank you Partnership For Patients, together you all will change the world. What a happy story.. Goodnight and sweet dreams to all.

  6. Now THAT'S the bedtime story I'll read - to MYSELF - every night for the foreseeable future. Thanks, Regina, for using your prodigious gifts in a way that builds bridges across the moats that surround the healthcare castles =)

  7. Nice blog .... I read all post, I like it. Thanks web master

  8. Regina,

    I just read this for the first time. Having worked along-side you as a patient advocate 'in the trenches', and as a nurse and advocate 'inside' the system, I want to tell you how grateful and privileged I feel that the patient advocacy movement has you and your talents. You bring complex, difficult-to-understand, entrenched culture and reltionship issues to life. Those of us who've been doing this for a while realize that patient safety is not only about data, infections, checklists, is about relationships, changing cultures and building communities with those who are brave enough to stand up for what is right. I believe your work engages those with the not only the great minds, but also the heart to do just that. Thank you for all you do.