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!

Return to Sender

I grew up in the age of the stamp.  When I was a child the post office was a grand and honorable place with marble columns and brass trimmed service windows.  As we would enter the monumental building with its magnificent foyer, I would marvel at the spacious height of the ceiling.  My footsteps would echo upon the specked marble floor and I would wait in silent awe as we stood in line to mail a package or buy a sheet of stamps.   My mother would open her coin purse and count her coins and dollars.  The mail clerk would hand her a glassine envelope filled with stamps.  I would stare at that envelope seeing the distinctive dips and swells of the gummed paper edges of the stamps contained therein.

If I were very good, when we returned home I would get to lick the stamps and place them upon the letters.  I would taste the unusual flavor that only comes from gummed paper.  Then I would proudly place those letters in the mailbox.  Sometimes I would wait upon our porch as the cicadas hummed their summer song and wait for the mailman to take the letters far away.  I would never see those stamped envelopes again.

Except once in a great while, the letters would return.  My mother’s crisp penmanship would be somewhat covered by an imposing stamped image of a hand and in red ink these words were written: “Return to Sender.”  My mother’s brow would furrow, as she would scan the message.  Had someone died?  Had someone moved?  

“Return to Sender,” it is a phrase that caused consternation then as well as now and it is the name of The Walking Gallery jacket of David Lee Scher, MD.

David is the Director at DLS Healthcare Consulting, LLC.  He focuses a great deal of his time and energy as an mhealth evangelist.  He was a cardiac electrophysiologist and is a leading authority in the medical device industry.  He lectures throughout the world about the intersection of cardiac monitoring, mobile health and digital devices.  He contacted me earlier this year because he wanted to join The Walking Gallery.

He wanted to wear upon his back the plea of many who have implantable devices inside of their bodies.  They echo the cry of e-Patient Dave: “Give me my damned data!”  Their cry is all the more poignant because the data they are asking to access is created and transmitted from inside their own bodies.

In this painting two figures stand in the background.  A woman and a man stand in a stance that mimics Clark Kent’s transition into Superman.  They rip open their shirts but do not to reveal an emblazoned “S,” instead we see an X-ray view of their hearts.  Each heart has an implanted defibrillator attached and spiraling ribbons of purple data coil above and into the cloud.  This data bypasses it users and goes directly to the manufacturer and doctor in charge of the patient’s care.  

David holds a very special letter in this painting.  The stamp is a vintage one saying, “Love” for we must enable patients who request access to such data.  We must do it because these patients are suffering emotional anguish and are unable to maintain their health to the best of their ability without such access.  Denial is causing heartbreak within hearts already broken.

The stamp cancellation on this envelope is dated 2012 and the cancellation stamp is the symbol for WiFi access, for in this day of instantaneous communication the reason that patient access is denied is not a technical one.

The mail to address offers some hints as to why the patient is denied access.  This message is being sent to the doctor’s office and the device manufacturer via a closed network server.  This is a closed network and data is a thing to be owned and sold, but not shared.

Finally the return address is the Patient on Main Street in Any Town, USA.  The return to sender marking points to this address and offers a reason for return: “Nothing About Us Without Us.”

Finally, David within the painting stares out at the viewer.  He is wearing this jacket to conference after conference.  He is throwing down the gauntlet. He is demanding patient access in the hallowed halls of exhibition floors surrounded by the manufactures of such devices.  He will not stop; he will not rest until our system changes.   “Return to Sender” will become a patient data right rather than an ephemeral remnant of paper postal system.