Inside the Mirror

When I was young, I had a compulsion to find out how things worked.  This usually led to creative destruction.  I know exactly how a music box works because I dismantled my jewelry box, tossing out the painted paste board, velveteen lining and plastic ballerina. 

The important part was inside.  I loved the little brass machine that wound with a key.  I loved to listen to the metallic plinks as the metal keys were forced upon the raised nodules of the rotating barrel.  I cherished the simple elegance hidden for years by the bulky form of the jewelry box.  It was liberating.      

But my deconstruction did not stop with the music box.  I also wanted to see inside a mirror.  Mirrors were amazing things that created a world in reverse. One day I ripped the brown paper backing off of my mirror.  Then I scraped at the black paint on the back of the glass.  My scraping revealed a silver expanse.  I scraped at that layer and reached clear transparent glass.  

I was disappointed.  I could not see inside the mirror.  I could not see that most amazing space between the darkness and the glass.  I knew that was where the magic happened.  I knew another world lived inside the glass. 

Have you met Melinda Watman?  She knows it feels to be between worlds and stuck within the looking glass.



This is her jacket "Inside the Mirror."  

In this painting there are two Melinda's.  There is the Melinda buried within folds of flesh and the Melinda that lived inside the looking glass.  Inside the darkened glass a thin healthy Melinda waited.  She waited to get out.  She waited for the year to pass and the time to come when the worlds would reverse.  

Melinda spent years trying unsuccessfully to reach her goal weight.  She then began to research bariatric surgery.  She had a background in nursing, but she wanted to be aware of all the ramifications of her decision. She dove into social media and discussed her options on chat boards.  During her research she was amazed that there were few unbiased sites that would discuss the pros and cons of surgery.



Melinda is now the woman who once was tapped within the glass.  Her body is lean and healthy, as is her mind.  She has since founded a company called BSCG (Bariatric Surgery Consulting Group.)   She hopes to help others come to a decision about what is the right choice for them.  

Welcome to the Gallery Melinda.

Electronic Medical Records are Super Cool!

Today Isaac, Ben Merrion and I filmed a video short on Connecticut Avenue in front of DC Immediate and Primary Care.  We we creating our entry for "What's in your health record?" video challenge from HealthIT.gov.

You still have five days to submit a video to the challenge!

Go to the challenge site and create an account.
Upload a two minute or less video to YouTube following the content instructions.
Fill out the consent form and upload it.
Transcribe the video.
Link to your website.
List all the members of the team.

That is about all there is to it, so don't miss this great opportunity! There are several prizes...

Here is our entry:

@Medstartr

"Iron rusts from disuse; stagnant water loses its purity and in cold weather becomes frozen; even so does inaction sap the vigor of the mind."
~Leonardo da Vinci



Medstartr: a Poem and a Painting

We sit at u-shaped tables, round-tables, head tables. 
We talk of health.  
We sit within hallowed halls and gilded ballrooms. 
We attend summits, conferences and symposiums 
in a desperate need to change the world of care.

And we talk, talk, talk.  

We shiver in rooms too cold 
and shake from impatience more than chill.  
My dress shoe tap, tap, taps 
a morose code of fury, 
that three years have passed and yet we talk.

When my outrage can no longer be contained 
I text, text, text.  
There are others like me, 
who refuse to sit still.  
We will turn these tables.

We plan to act, act, act.

We've found the wisdom of the crowd,
to fund our disruptive treason
and confound the reason 
of those who think change can only come from up above.

Because we love, love, love
Those whom we've lost.
Those whom we sought
Who sadly thought
that you could talk, talk, talk.
and stop the grieving.

We are those who seek backers
whilst our backs press against the wall.
We will not retreat
as you retweet
our clarion call to act, act, act.

MT, not just a modified tweet

A few months ago, I was invited to present the opening keynote speech at the AHDI (Association of Healthcare Documentation Integrity) Annual Convention Indianapolis, Indiana.  This conference focuses on the work of medical transcriptionists or healthcare documentation specialists, their other professional title. 

I was recommended as a speaker to the organization by a couple of members who have seen my work.  One of those lovely ladies was Kathy Nicholls. She is a medical transcriptionist, scribe and member of The Walking Gallery.  Kathy is such a dedicated advocate and I am so honored to know her. Kat King, AHDI-F, AHDI-West President 2012 also recommended me after seeing me speak in Oregon at an AIM event. So Andrew Wolf, the conference planner,asked me to speak. He also asked me to paint a custom painting prior to the event that would promote National Medical Transcription week.  I said yes to both requests.

On Thursday at 8:00 am the room was filled with delightful ladies and a few gents who had made medical transcription their life's work.  I dove into my speech and they rode along with me through laughter and tears.  I have rarely seen an audience as responsive and empathetic as this one.  

I finished the speech and walked to the back of the room to paint the conference itself.  If you are familiar with my art, you know it is rarely pretty, perhaps tragically beautiful, but rarely pretty.  The painting I created that morning is a lovely piece I entitled "The MT Compass Star."



In this painting the sky is filled with rain as it was on this day.  It had not rained for weeks in Indiana and the ground was parched. The crowd rejoiced in this needed rain. In the center of the painting a lovely blond MT (medical transcriptionist) stands poised as a ballerina.  Her leg is extended gracefully and one arm languidly caresses a child. The other arm reaches toward the sky with a compass in hand.  The ethereal beauty looks up into the rain drenched sky.  The clouds break and she can see the compass star to set her way. Behind her and slightly to her left another MT holds her hand out to touch the falling drops of rain. 

To each side of the transcriptionists patients stand.  To the right a male patient stands with one hand upraised as if to catch the rain drops.  The other arm is embracing the MT in an absent minded way. The storm wind has has whipped his Johnny gown open and his modesty is compromised. To the left a young girl stares solemnly at the viewer.  Her eyes seem to question what will happen next.

I painted this as awards were given out and amazing transcriptionists were recognized.  I painted this as a storm was brewing and an entire profession was deciding its future.  Every MT in that audience was as poised as this ballerina.  Ballerinas look so beautiful on point.  But have you ever held that pose?  Have you ever felt the painful twitch of muscles forced to their limit to create a pose so sublime?  Have you looked upon the cracked feet and bleeding toes?  

The attendees came over to my easel and commented on how much they liked the painting and asked what it meant. A few woman chucked modestly as I said I was painting their profession.  Their hands fluttered as they admitted they could not dance.  I smiled a sad smile as I noticed their hands. Their hands, with knuckles swollen from decades upon the keyboard, covered their smiling lips and patted cheeks flush pink like a youth.  I think these women know all about the feet of a ballerina. 

I next attended a session entitled Advocacy Alliance.  I was excited to hear this group mention many of the consumer campaigns of the ONC (Office of the National Coordinator of Information Technology).  They spoke about the upcoming video challenge focusing on consumer access to the EHR.  They spoke about the Blue Button download and the consumer pledge.  I was so excited by this conversation I sent a tweet to Farzad and Lygeia.  

Next I attended the AHDI tweet-up. I was so happy there was a tweet-up as I had only seen about five people tweeting so far.  The tweet up was hosted by a young man named Matt LaMond. He delivered a twitter tutorial focused on maintaining a twitter handle for a tech business.  Though his presentation was done in lecture format, I could not help but interrupt him at times. His presentation was not explaining the advocate view of twitter or that of the self-employed.  I hope my comments were considered friendly banter and not unwelcome harassment.  We began to debate about wether to retweet using the twitter function or to copy and paste with a RT or MT.  The audience asked about the difference.  I told them by typing RT they could improve their Klout score.  Then they wondered at the difference between an RT and an MT.  I said in a RT (retweet) your are just coping the work of another.  In a MT (modified tweet) your editing the content.  I think this conversation was very pertinent to the work these attendees do every day. Two attendees asked me to further explain the site and they both logged on by the next day. 



That afternoon I began the second painting named "The Window." Here the beauty is gone and only stress remains.  This painting is of a busy hallway in a hospital.  Two techs race by with a gurney.  A nurse is intently pushing a c.o.w. (computer on wheels).  The adults are all focused on the tasks before them.  



Upon the gurney a child kneels.  He is holding a blanket from Project Linus.  This blanket was the subject of our second keynote speaker Karen Loucks Rinedollar.  Karen began a national charity that bestows handmade blankets to children in the hospital or who are traumatized.  The blanket comforts the child as he sees a dark window in the wall.  In the darkened window medical transcriptionists work long hours.  They listen and write and rarely get a chance to speak.  They are in darkness and not considered part of the scene. 



After I finished this painting, both paintings and 15 signed prints were given away to attendees.  The winners were very appreciative and I hope the paintings inspire their owners in the years to come.  I met a lot of lovely people at this event. I met Sherry Doggett the 2011-2012 President of AHDI. She held my hand with an earnest intensity as she said she would like to be part of the wider advocacy work of The Walking Gallery.  I met Betsy Ertel and watched her race from session to session with a smile one face and a swing in her step.  

I met a lot of amazing advocates that self-define as Medical Transcriptionists.  I know their world is changing. Their hearts are large and they are devoted to a clear and correct medical record. I hope to see many of them on stage and presenting in the years to come.  They have the patient story in the forefront of their mind and I expect amazing things from them.

Am I a Stone?

Am I a stone?
by Regina Holliday

Am I a patient?
Do I sit within the chamber?
Knees knocking, thoughts blocking
That something could be wrong.
The paper gown does contain me.
Does not embrace me.

Am I the wife?
Just a visitor in 6218,
Only a number, easy to quantify.
While the nurse imprisons my husband's pain
as so much data on a chart.
While his breathing,
keeps pace with my weeping.

Or am I a stone?

Am I the stone that skips upon the water?
Do I dance above the surface
only playing at this service
to something greater than myself?
Then falling to the darkest depth
Leaving not a ripple.

Perhaps I am a stone upon the land
whose granite face wears the dust of years.
A silent sentinel upon a field of mourning.
The letters incised upon me
testifying to a life cut short
the only ripple left- a grassy mound.

No, If I'm to be a stone,
Make me the rock of Aesop.
Stacked high with all my brethren
so the thirsting crow can drink.
Just one among the bricks within the crucible,
stacked upon each other like cinderblocks.

Media and the Message

Regina. 

That is my name.  I have known why it is my name since I was a small child.  It is etched within my mind beside my childhood prayer: “Now I lay me down to sleep, I pray thee Lord, My soul to keep.  If I should die before I wake… “

I am named after my great Aunt Regina Roggow.  She died in 1906 when she was only 5 years old.  She shares a grave with her little brother Erwin who was only three.  They died of Scarlett Fever.  If you are parent, you might have gotten those little slips of paper that warn of an instance of strep throat in the classroom.  After getting the note you probably watched your child more closely and perhaps made a trip to your local doctor to pick up some antibiotics. 

My great grandparents did not pick up antibiotics; there were none to be had, instead they picked out a headstone. 

When I was a child, I would visit this small grave on the wind swept prairie of Oklahoma.  I would grasp plastic grave flowers in my pudgy fist.  I would step carefully through stickers and cockleburs that would catch upon my ankle socks.  I would walk towards the back of the cemetery to the children’s section.  I want you to think about that.  The children’s section.  So many children died back then they had their own space.  Here the tombstones were smaller and often depicted lambs.  I would kneel at Regina’s grave and press the flower deep into the red dirt.  I would cry for a child I had never met.

When began I visiting Regina’s grave she had already been dead for over 70 years.  It was hard to read her name on the weathered granite.  I would trace the indentations with my little finger.  The years passed. I grew and Regina’s name faded.  Recently my Aunt Minnie asked the folks at Pellow Monument Works in Enid Oklahoma if they could do anything to improve the text on the grave monument. Aunt Minnie wanted the visitors to be able read the stone.  The Pellow team said they could.  The painted it with black lithochrome and then re-sanded the granite to its original tone.

Now its message is crisp and clear. Regina has monument on the prairie in Oklahoma.  Now due to this post, she will have one online as well. 

When I speak, I speak for children like Regina and I speak for men like my late husband Fred Holliday.  I, like many who work within patient advocacy, want to make sure our loved ones did not die in vain.  We want the world to remember them, and through telling their stories effect great and positive change.

Sometimes due to our personal sorrow or anger our messages are not clear or can be off-putting.  Sometimes due to inexperience we will say things that are considered rude within the world of social media.

I am writing this post to address the etiquette and protocol within social media as it applies to advocates and the communities to which they post.

Advocating from sixth stage of grief.   You probably know about the five stages of grief: denial, anger, bargaining, depression and acceptance.  A good friend of mine named Trisha Torrey wrote about the sixth stage of grief calling it Proactive Survivorship.  Proactive survivors have gone through the five stages of grief and want to help others.  They still remember their sorrow and anger, but they do not let these emotions control their advocacy or cloud their message.  They have replaced blame with hope and their story is not tragedy; it is triumph.  These advocates are often the most effective.

Some advocates are still actively experiencing anger and depression.  It is hard for them to hear the joy and success of their counterparts.  Often these two groups will be at odds with each other.  Please take a deep breath when you post to other members of the social media community.  We all have experienced suffering; we all have a reason for being here.  We may just be at different stages of the journey.

The smiley face is your friend.  In tweets or in facebook comments there is not a lot of time for nuance.  If you say something quickly and think it can be taken in a negative way the simple emoticon J can do much to eliminate ruffled feathers.

Don’t spam your friends. When you have a new link or post that you are excited about do not cut and paste it repeatedly in every forum or group.  Sometimes the post is of extreme importance with a limited window of action ie; public comment period is almost over, tweetchat is tonight or a reporter is looking for content relevant to a dead lining story. We will understand a deluge then.  Rather than over-posting, posting it where it is most appropriate, then tailoring your message to the group will help with spread.  If you become known as an advocate that spams multiple groups with the same post, your messages may become synonymous to white noise and disregarded.

Everything in Moderation. Do not attack a advocate personally for their thoughts on a subject.  We are all working toward a common cause of improving the patient experience. Try to be civil in your debate.  If you are concerned about comments directed to you in a public forum, contact the poster privately if possible.  If that is not possible, contact the moderator or admin.  They can remove inappropriate comments.  Know that certain types of comments can result in an advocate being blocked from a site.  It is important that list serves and facebook groups be safe places where people feel comfortable speaking truthfully and with respect.  Group membership will decline if the space feels like the Wild West.  I have seen too many groups loose valuable membership because of poor self-moderation of comments.

Know your social media platform

Twitter is a caused based platform.  In twitter we use hastags: #hcsm (healthcare social media) or #ptsafety(patient safety) to follow concepts or chat sessions.  This is usually done in a very public way and most accounts are open.  The stream of comments can be searched through google and those who tweet should know that their writing could be seen by anyone.  On twitter you can follow people who do not follow you back.  You can comment to them directly by posting in the public stream.  If you wish to say something privately you can send them a direct message if they can follow you back.  Direct messages are like short private emails between two people.

Facebook is a wonderful tool for finding people.  This platform is more closed.  I have never been able to find a facebook comment during a google search, though I can find the person and their interests.  In facebook, you can communicate by including a friend’s name within your post and it will appear publically on your wall as well as their own.  This is a good tool if you know this person well and know the message is very much inline with their life and mission.  If you think it might not reflect their worldview it is not considered appropriate to post it on their wall.  If you wish to say something privately a facebook message is used.  A message can be between two or more individuals but is not a public form of communication.  Copying the text contained in a message and sharing it without permission is considered a breach of trust.  Please always ask permission before sharing private messages with other people.

Your blog is your voice.  The blog is an amazing tool.  Here your can explain your stance in patient advocacy in great detail.  Unlike a website, it is rarely static and very easy to update.  You can post links to your blog on both twitter and facebook.  A lot of misunderstanding occurs online when you do not have the space to explain yourself in full.  A blog can give you the time and space to be clear and if you enable comments you will get questions directly.  Enabling comments will also help you to understand the hard job of moderating comments, a challenge that facebook administrators are well aware of.  Empathy is a good and valid teacher.

Writing in all capitols in twitter or Facebook is perceived as screaming or yelling in this space.  If you served in the military you may have written in all caps for clarity, but online this can be very off-putting.  It often reflects badly upon the person who posts in such a way.  There are many who will not read what you have to say when you do this, so do it rarely, choosing a word or two for special emphasis.

It may be called SoMe, but it is really about us!  In social media it is crucial to listen and share.  Talking and posting is important, but this relationship works because of give and take.   It can be very off-putting to other advocates if we post constantly about our own cause without focusing on and sharing the content of other speakers in this space.  It is very important to network our messages with other advocates, providers and thought leaders.  Look at the places you comment.  If you are constantly redirecting everyone to your own site and campaign, you are monopolizing the conversation. 

You are creating a monument to those you loved.   Remember all that you say in the world of Social Media reflects back on you.  It reflects back on your loved ones as well.   There are often times I wish to “blow a gasket” in this space.  And as you well know, I have, but this too with moderation.  Do not become a flamer, for flames breed fire and fire consumes all. 

When I die, I would like my body to be donated to science or burned.  I do not want a gravestone. If my family or friends wish to visit a grave they should visit little Regina Roggow’s grave.   She died too soon and I hope in some small way I have lived for her.  The only monument I will ever need is already being inscribed. It is crowd sourced and is the product of social media.  You can find it in the google search field by typing Regina Holliday artist.

Remember when you post online you too are building your monument or marker in this mortal coil, do so honestly and with dignity.

These were just a few thoughts upon this subject.  I am a big believer in crowd sourcing so please feel free to comment in the comment field to further expound upon protocol in patient advocate social media.

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.