Attack of the Living Meme

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

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

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

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

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

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

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

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

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

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

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

Profiles

Sometimes the most beautiful art swells from the most incredible pain.

I have created art since I was very small.  I have cherished the blended line of graphite.  I have felt my spirit soar as a swirl of pigment creates a fiery plume within a wet wash of watercolor.  I have felt the ache within my shoulders and my fingers as I methodically prick the page and a profile appears.

Do you remember the art of the pinprick?   I remember my second grade classroom in Oklahoma.   I remember the children with their backs hunched over sheets of paper.  Silence reigned within the room as we pressed stickpins upon the page again and again creating profiles.  It was February.  The room was cold.  This was the month for gloves and the paper arts.  This was the month of elaborate cards with hearts and loves and lace.  This was the month for the faces of presidents.

So each child hunched over a pinprick Washington or Lincoln.  Every once in a while a child would lift their sheet then facing the light, a half-finished silhouette of a great man would dance within sunlit dots upon the wall. 

The art of the pinprick was painful.  It took hours to complete.  It was silent and repetitive. This was the holdover art of the Victorian era: a useful skill for a child to learn in preparation for years of labor before a mechanical loom or automotive assembly line.  I do not see children create such art in the times we live within.  Our lives are lived at such a frantic pace.  We create a profile with minutes and place it upon our Facebook page.  We do not spend hours pricking a face out of a blank expanse of paper to create a creature of light.  We create pixilated avatars and send our electronic likeness through the cloud and within moments span the world.   

But some profiles are made over the span of years.

This is Teresa Younkin’s jacket for the Walking Gallery: “Profiles.”  I painted it within a few hours and it tells the tale of years won and loves lost.  I love profiles.  I love the stark silhouette upon the page.  So much can be said within outline.

 

Teresa’s profile reaches up to the profile of her husband David.  Ten years ago theirs was a happy family.  They lived in Portland, Oregon with their three children who were seven, four and one-years old.  They were so happy.  Then the diagnosis came.  David had primary brain cancer.  But David was a veteran and the VA was using a new EHR system called VISTA.  The system was new and David was so young.  Every attempt was made to help the young couple. 

As David and Teresa raced across the country for treatment, David’s data raced before them through VISTA.  Their way was prepared long before David saw even saw his doctor.  Information transfers that would have taken weeks were accomplished in days.  When time was of the essence, David was treated with great speed and efficiency due to VISTA.  Teresa still had to hand carry David’s military record and his second opinion records, but the reams of imaging results and other data transferred to and was read by the three doctors coordinating David’s care.

David tried so hard to live. 

He had lost his own mother at six to breast cancer.  He had so few memories of her.  He was determined to live and love.  He would create as many memories as he could for his children.  David received cutting edge treatment.  The entire family relocated to east coast to be closer to his doctors. 

David beat the odds.  He lived for six years past diagnosis.  Six years of birthday parties, and hugs and memories.  He saw his youngest child Faith turn six and would reach his 36^th birthday.  Then he died on June 6, 2006.  6,6,6,6,6 and the sixes spin on and on within this painting like yarn spinning toward the wheel.  For this is a profile and profile comes from Latin:  “pro” meaning forward and “filare” means to spin.  Some may view an ever-spinning series of sixes with trepidation, but not Teresa.  She views them with hope.  Three sixes make 18 and in Hebrew that number is the number of life.

And for many a jacket, that would be the end of the tale, but not this yarn.  It still unspools.  In 2008, Teresa met Jim Younkin online.  They met as profiles, electronic people connected by backlit pixilated dots.  They talked data and HIT (Health Information Technology), for Jim worked at Geisinger Health System.  Only then did Teresa realize the gift that VISTA provided.  Only then did she realize how many wives lose their David’s and break their hearts in a world without easy access to and transfer of patient data.

One year after meeting Jim online, Teresa and Jim married.  Teresa has a new love tempered by her first.  Teresa loves Jim and she also loves HIT.  She will do everything she can to spread the word to others.  HIT saves lives and helps create memories.  Teresa even joined SpeakerLink.org and you can find her profile among all the other powerful patient/provider speakers.

I will never forget Teresa.  Her story sears my mind.  And as I paint, I wear the ring she made for me.  Teresa is a jewelry artist, when not working with HIT.  She made this ring.  She hunched her shoulders and spooled this wire for me to create a ring much like the one she wears.

Teresa describes the ring: “The stone has deep red sections that sparkle fiery orange flecks of color. I chose this stone for you because it signifies the two things that define your journey right now. If you move the stone around you will see the color orange, the color of kidney cancer.  But the orange is not the primary color. The red represents the passion that you have for patient access to medical records.  Without the flecks of orange this would be a pretty red stone.  Both pieces work in unison to provide a beautiful amalgamation of your experience.  The faceted surface represents the changes and experiences that make up your journey.  The experience of death is not just one sided, it causes us to experience life in a whole new way.

The stone sits above the silver rings that make up the shank of the ring.  On each side of the stone are short columns of silver. These short columns signify the strength it takes to live this life.  Neither one of us ever imagined our lives would turn out like it has; face it nobody does. It is what we do with these experiences that help us to carry on.  Each column supports the weight of the stone and lifts it to a higher plane. 

Living through the death of a loved one does that. You begin to see life on a different plane.  Gone are the days of the petty annoyances and inconsequential details.  There is a mission in life and the weight of the responsibility can be overwhelming sometimes.  You are strong and you continue to protect the foundation of love and continue to honor the life you and Fred started to build for your boys.

The wire that comprises the shaft and the holds the wire together is made of sterling silver. When you start working with the silver wire, it is pretty malleable. Once I have assembled the ring, I put it on a mandrill and bang away until the ring is shaped in a perfect circle. The neat thing about the wire is that the more you work with it the stiffer it becomes.  So as I pound on the wire while I am shaping it, it becomes stronger and stronger.  It becomes so strong it will hold its shape and not bend.  It describes this experience. With each hit, you became stronger and stronger and now you are a source of strength for others.

I wear my ring together with a second ring that I had made while I was in Israel. My ring is gray-the color of brain cancer. The second ring has Jeremiah 29:11 engraved in Hebrew the ring.  I wanted the true Hebrew translation to be put on it, which says: I knew in My mind My thoughts about you before you were you. I wear both of these rings on my right hand…because God has held me up with His mighty right hand. Together these rings help me to remember that this journey is not just about me, it is about what God has for me.  I am His child.

I am glad our paths have crossed.  Life is a tapestry and every experience is a thread that is woven together to make a beautiful masterpiece.”

Thank you Teresa.  I am glad to spin with you, to feel the prick of the pin, and to hunch over our labors as the tides of years pass.  We shall help create a world in which the Fred’s get the same treatment as the David’s and the children’s memories shall fill with birthday parties, happiness and hugs.

A 2011 Christmas Letter

I have a few friends and family who send newsletters every Christmas. I look forward to these missives with great joy. In the days before Facebook, it was the only way to stay abreast of the life events of distant friends. In these days of instant messaging and social media, I find them still a wonderful source of information and something more. A Christmas letter is a retelling of one year in the life of a family and it is amazing to see 365 days of important events unfold within a few sparse paragraphs. I love to see the march of time as told by a family matriarch or patriarch. I love to read the words of my late husband’s best friend from college, even if his news is sad to hear.

So, this year I decided to write a Christmas letter. Whether you read this on a page of paper or via backlit screen, know that I am happy to share our life with you this joyous season.

“How are the boys?” I hear this question wherever I go. I am glad to say, they are doing well.

Freddie Holliday III is 13 years old and he grew over the summer and is now almost as tall as his father. His voice changed and he quite likes his new adult voice. He is now in 7^th Grade at Ivymount School in Silver Spring, Maryland. He got an award last spring in his science class for best presentation on his science fair experiment. He collected data about logo recognition rates among preschool children who watch television. It was a cool project.

Isaac Holliday is a five-year-old in kindergarten at Murch Elementary in Washington DC. He is a joyous child and recently had a great deal of fun playing the donkey in the Christmas pageant. He has been struggling with learning to read. We have been very blessed to have my boyfriend-Ben Merrion tutor Isaac as Ben works in the adult literacy department at MLK, Jr. Library and is a wonderful teacher.

Speaking of Ben, we have been dating for over a year and this summer Ben made his first trip to Oklahoma to visit my family. He was such an amazing help in guiding the children through the airport during the trip. I also got to meet Ben’s Mother and sister this fall and we had a grand time.

We also have been blessed to meet the amazing Kait B. Roe. She is patient advocate too. She has recently moved to DC and has agreed to help with night-sitting when I am out of town speaking. We are overjoyed to have her as part of our life.

I am so glad Kait is here to help because I travel a lot to speak and paint about the patient view. I owe a great deal of thanks to everyone who helped out in 2011 while I was gone. So thank you to Ben, Kait, Joan Holliday, Courtney Mazza, Megan Michell, Eleanor Franc, Emily Stewart, Liam Kemp, Pete Wright, Cindy Throop, Shoshannah Kantor, Nora Reno, Miriam Cutelis and Robin McGrew.

This was the year I traveled nationally to speak about our family medical story and the tragedy of Fred’s medical care. I delivered over 20 speeches this year visiting Florida, Oklahoma, Illinois, Missouri, Maryland, Tennessee, Pennsylvania, California, Oregon, Texas and Puerto Rico. Most of the venues that ask me to speak also allowed me to paint onsite. It was amazing to set up in the back of grand ballrooms and paint the words spoken at these august events filtering the images through the patient view. Most venues asked me to deliver a second speech at the conclusion of the conferences explaining the paintings created over the days of the conference.

In June of this year Charles Denham, MD offered me a one year fellowship with TMIT (Texas Medical Institute of Technology). As part of the process of being a fellow, he asked me what TMIT could do to advance patient advocacy. I mentioned that conference attendees wrote to me after my speeches telling me how much the patient story was affecting their lives and profession. They were asking for other speakers like me. While within patient communities people who wished to speak often had no way of becoming connected to facilities that needed patient speakers. So when Chuck asked me his question, I responded that we needed a patient speaker’s bureau. For the last six months Chuck and the great team at TMIT have been doing exactly that.

We now have a site called SpeakerLink.org and over sixty speakers have completed profiles and many providers have logged on to find likely speakers. Thank God that Chuck Denham and the TMIT team met me a little over a year ago. SpeakerLink.org is such a blessing!

Another amazing creation in 2011 was The Walking Gallery. In April, I attended the opening of a new Kaiser Permanente facility in DC called the KP Center for Total Health. It was a lovely place: a medical facility lit like a gallery. I immediately wanted to have a gallery show in the space. But we would not pound a single nail. All the art would be worn on the backs of business suit jackets and lab coats. Ted Eytan, MD with KP thought it was a great idea and the KP team thought the proposal over and by the end of the month we had approval. At the end of April, I and five other artists began to paint. On the night of June 7^th 54 people walked with fine art paintings depicting patient stories on their backs. It was an amazing and sacred experience.

At this point there are 107 jackets in the Walking Gallery and the movement grows larger each day you can view the entire gallery at Welcome to The Walking Gallery - Regina Holliday's Medical ... Those that walk in their jackets have attended events and medical conferences throughout the United States and in a great deal of Europe. We now have walkers on five continents spreading the power of the patient story.

So that was this year. We are well, happy and so very blessed. And I hope 2012 is another wonderful year filled with advocacy and loving friends. God bless you as you each walk on your own path and I hope to see you along the way.

Love,
Regina, Freddie and Isaac.

2011

Remember Your Hollidays

Please consider following the entries on

CareMoms as well my regular entries from this advocacy blog.

This is a cross-post from that blog.....

A little over a year ago I met Dr. Chuck Denham, CEO of TMIT  (Texas Medical Institute of Technology) on the Stage of the Quality Net 2010 conference in Baltimore.  I had just finished a moving speech about the importance patient/family access to the electronic medical record.  After I finished speaking, Chuck decided he must meet with me. Before we had even begun the after speech Q&A, Chuck asked me if I would like to be involved in his massive patient advocacy project with TMIT hosted at SafteryLeaders.org.  I said yes, and we announced on stage that we would work together to promote great positive changes in patient safety in 2011.

Soon after that, I met with his film team.  We filmed a short video at IHI in December 2011.  It was entitled Remember Your Hollidays.  The film team of Colin Gabriel and Matthew Listiak edited it the video quickly and it was posted on youtube in late December. 

Throughout the spring I had conversations with Chuck and Laura Slayton,social media guru at TMIT, about the various safety initiatives of TMIT, including a concept called 

CareMoms — SafetyLeaders.org The focus of CareMoms, as defined by SafteyLeaders, is to engage and develop leaders – who are moms, dads, grandparents, sons, and daughters in the community. These people can bring their power of persuasion to reduce healthcare accidents that cause more than 200,000 deaths in America, and many more globally.  These CareMoms/Dads can rally around their local hospitals and give them concepts, tools, and resources that hospital leaders and healthcare governance boards need to "chase zero" accidents and win the war on healthcare harm. 

After discussing this concept with Chuck, I designed his jacket for the Walking Gallery, a patient advocacy movement consisting of wearable art, using an image of a universal and infinite CareMother encircling our world.

Soon Chuck asked me what I would recommend as the greatest thing that TMIT could create to further the work of patient advocacy.  I told him a Speakers Bureau for patients.

For the last six month, the TMIT team has been doing exactly that.   

So, last week at QualityNet 2011 in Baltimore I saw Chuck once again upon the stage.  He spoke of the amazing patient safety initiatives on the way and he encouraged the entire crowd to visit 

SpeakerLink.org: a site where seeking facilities can find health policy speakers with a patient or patient-centric view.  

I tweeted my joy from the back of the room upon seeing our dream become reality.  Then the actress and patient advocate Alicia Cole began to speak.  She told a powerful story of her brush with death due to a hospital inquired infection.  She spoke in loving terms of her Mother and Father who stood at her side as steadfast advocates, thereby saving her life.  She mentioned how her mother saw a black spot no larger than a dot from a sharper marker. a dot that would have grown and killed Alicia in hours without her Mother’s intervention.

Alicia was an amazing patient speaker and encapsulated the reason why we speak.  Her words can change our world. 

Please remember us this Holiday Season.  Remember the Hollidays.  Remember the Alicia’s.  Remember the black dot that was not a speck of coal within a Christmas stocking, but instead a speck on Cole.  Remember a mother who saved her child.

Happy Holidays to all the CareMoms, CareDads and the patients who suffer; we shall be thinking of you.   

A Mighty Bridge

Have you ever watched Phineas and Ferb?  It is a great family show on the Disney Channel.  The show centers upon the boy Phineas and his step-brother Ferb and the fun-filled days of their summer vacation.  In every episode Phineas and Ferb create some amazing mechanical construction in their backyard.  They have an older sister named Candace who tries to show their mother these secret impossible contraptions.  She always fails and the backyard is returned to its normal state by the end of the episode.

I was watching an episode with my five year-old today called Roller Coaster: the Musical.  In that episode the boys build a gigantic rollercoaster in the backyard while performing a great deal of singing and dancing. Early in the episode Ferb delivered a line about singing in relation to roller coaster construction that caught my attention. 

Well, just the fact that Ferb delivered a line caught my attention.  Ferb is not as taciturn as the pop culture icon Silent Bob, but for the most part Phineas does all the talking.

Today’s verbal exchange was very interesting in light of a project called Speakerlink.org I have been working on these past many months:

Ferb: Hmm, what assurance would we have that everyone else will also break into song and do the same thing?

Phineas:  I don’t know, I think they probably will.

Ferb: Fair enough, I’m in.

Phineas and Ferb were building a roller coaster. And I am glad the two characters were willing to try to create such an intricate construction even if they were somewhat concerned they might fail.  I am glad the very analytical Ferb was willing to leave his comfort zone and without any quantitative data to support his decision.  But the problem with roller coasters and the plot of every episode of Phineas and Ferb, is that in the end you end up where you began.  

It would have been much better if they had built a bridge.  Bridges may not be as exciting as roller coasters but they take you down the path.  They create a link for communication and you most definitely end up in a new place.

How are bridges built?

We began talking about a patient speaker’s site at HealthCamp DC on June 8^th 2011.  A core group of healthcare advocates met in a breakout session.  Trisha Torrey, Matthew Browning, Whitney Zatzkin, Carol Torgan, Cindy Throop, Laura Slayton and Chuck Denham were just a few of the advocates in the room.

On August 19^th, Trisha Torrey and I flew to California to present a webinar with Chuck Denham and the folks from TMIT about the concept. There we live-tweeted and spoke for over an hour about the benefits of patient speakers. 

And whilst we spoke of the power of patient speakers Trisha wore a painting on her back.  She wore this painting:

I can think of no better picture to represent what SpeakerLink.org is trying to accomplish.  Here is the place where the provider can meet the patient; here is a place where positive change begins.

Since August we have been promoting the Speakerlink.org within our social media circles.  For the past two weeks we have been inviting people to fill out profiles before we announce this amazing resource on the stage at a CMS event Called Quality Net 2011 in Baltimore MD on December 15^th.

  

There are currently 61 speakers on speakerlink.org. They hail from 25 states.  17 are also members of the Walking Gallery.  They are doctors, patients, tech gurus, nurses, authors and advocates.  All of them agreed to sign up and speak out, many for the first time about their patient stories. I wondered if any paused before making their profile public and wondered who would agree to “sing” with them.  There is a certain safety in staying quiet.  Perhaps one would look the fool upon the stage if they said the wrong word and could not understand the culture of the watching crowd.  There is bravery in being willing to speak.

And I thank these speakers for stepping forward.

Dan Ford — Oro Valley, AZ

Rebecca Price — San Diego, CA
Gary Levin — Riverside, CA
Julia Hallisy — San Francisco, CA
Martine Ehrenclou — Los Angeles, CA
Diana Galarza — Moraga, CA
Anthony Galarza — Moraga, CA



Jennifer Dingman — Pueblo, CO


Matthew Browning — New Haven, CT


Kait Roe — Washington, DC
Regina Holliday — Washington, DC

Bruce Ramshaw — Ormond Beach, FL
Carolyn Capern — Orlando, FL
Maria Mangicaro — New Port Richey, FL


Sue Sheridan — Boise, ID


Pam Yoder — DFW or ORD, IL
Arlene Salamendra — LaGrange, IL


Tobias Gilk — Overland Park, KS


Keith Boone — Randolph, MA
e-Patient Dave deBronkart — Boston area, MA
Sarah Mahoney — Boston, MA
Nancy Finn — Needham, MA
Alicia Staley — Boston, MA







Meredith Gould, PhD — Baltimore, MD
John Burke — Finksburg, MD


kathy day — Bangor, ME
Becky Martins — Midcoast, ME


Celeste Castillo Lee — Ann Arbor, MI


Lisa Fields — Greensboro , NC
Josef Woodman — Chapel Hill , NC


Brian Christensen — Grand Island, NE


Lori Nerbonne — Bow, NH


Marcia Lee — Albuquerque, NM


Michael Painter — Princeton , NJ
John Phelan — Princeton, NJ


Howard Luks — Hawthorne, NY
Shwen Gwee — New York, NY
Dale Ann Micalizzi — Schenectady, NY
Jessie Gruman — New York, NY
kathy kastner — Orchard Park, NY
Trisha Torrey — Baldwinsville, NY
Jen Dyer MD, MPH — Columbus, OH
Christopher Jerry — Cleveland, OH


Brian Ahier — The Dalles, OR


Kent Bottles, MD — Narberth, PA
David Lee Scher, MD — Harrisburg, PA
Jane Sarasohn-Kahn — Phoenixville, PA
Tricia Pil — Pittsburgh, PA
Mary Ellen Mannix — Wayne, PA
Teresa Younkin — Danville, PA
E Michael D ("Mike") Scott — Philadelphia, PA




Pat Mastors — Providence, RI


Aaron Jaffe — Memphis, TN
Melissa Hogan — Nashville, TN


Israel Robledo — Midland, TX
Joleen Chambers — Dallas, TX
Fred Trotter — Houston, TX


Helen M. French — Waynesboro, VA
Jane Davis — Fairfax, VA
Whitney Zatzkin — Burke, VA
Casey Quinlan — Richmond, VA

SpeakerLink.org

When I think of SpeakerLink.org, I think of the strength of a chain.  I think of the power inherent in each link and of the smiles of a little boy named Isaac.

When my son Isaac was only three years old his favorite toy was not a toy at all.  It was a chain.  It was a heavy 16-foot-long chain. He would drag it along the floor and pretend it was a boa constrictor.  He loved that “snake.”  He would lift its heavy coils of links and smile in ecstasy.  I suppose some parents would not let their children play with a heavy chain and lift its steel links.  But, I thought that as long as it was supervised play, it was a great type of play and fulfilled Isaac's need for deep pressure.

After all, as a child I too lifted chains.  My father was a junk dealer and he sold many types of chains.  I remember some links that were as big as my fist.  Those chains were so very strong.  I learned a lot about chains.  They were strong but flexible: able to bear great weight.

They were so strong because of the links.  Those beautiful curved zeros of steel would glide out of my hand as I placed them on the flea market stall floor.  One link after another would fall.  First on its edge then on the flat, I remember it as a repeating series of 1's and 0's gliding by like some type of iron-age binary code.   

The links were important in that they made the whole. A great burden could be lifted by the strength of such a chain.

I am inviting you to be part of a chain today, a really important chain.

For the past six months, the team from TMIT (Texas Medical Institute of Technology) and I have been working on a project.  Well, really they have been working on many projects.  They have made films on patient safety, worked on standards, and went to meeting after meeting with thought leaders on better patient care. 

But the one project I have worked with them on is Speakerlink.org.

Six month ago TMIT CEO Chuck Denham, MD, asked me what did I think was the most important thing TMIT could do to improve patient care, safety and advocacy.  I told him we needed a patient speakers bureau.  He and the rest of the team broadened that vision to include speakers from every segment of society who identified with a patient centric view.

Today our dream is a reality.  This is what you will see if you go to 

SpeakerLink.org

And if you click on find a speaker you will see this. 

If you scroll down you will see more speakers.  You will see more amazing people who have decided to change the world, who refuse to accept phrases like “that is just the way it is.”  You will see mothers who have lost sons and wives who have lost their husbands, you will see people who have lost so much. 

But they have not lost hope.

You will see people who have dedicated their lives to guiding health policy.  Individuals who have devoted years to health information technology and patient safety legislation have profiles on this site. And you will see regular citizens who have no training in rhetoric here as well.  They speak because they must.  They speak because they are brave and are willing stand up and speak out if they can make a difference by sharing their story.

But this site is missing something.  It is missing you.

Register as a speaker.  Speak for those you love.  Speak for the anonymous millions that exist as a cold data set with no emotional impact.  Be a speaker from experience with patients you have helped or as the patient you have become.

Be a speaker for the dead.

But most of all speak.  For your voice is mighty and true.  It swells and fills the auditorium and fills the mind.  You have the power to change things.  You have the power to be part of a chain reaction.

For the hospital boards, the-C suites, the QIO’s, the Physician and Nursing Groups, the Venders and the Patient Communities are all links in a mighty chain of care.  Speakers connect these groups, speakers go from place to place introducing new ideas, different cultures and share the wisdom stored in so many silos of medicine.  You can become the link I know you are; for you have been through the crucible and have come out the other side.  You have been forged into the finest steel: flexible yet strong.

So, here is my request.  Sign up.  Become a speaker.   Change the world.