Linkage

Links in a Chain of HopePresented by -Regina Holliday

“Anybody can look at a pretty girl andsee a pretty girl.An artist can look at a pretty girl and seethe old woman she will become.A better artist can look at an old womanand see the pretty girl that she used tobe.But a great artist-a master-and that is what Auguste Rodin was-can look at an old woman,portray her exactly as she is...and forcethe viewer to see the pretty girl she usedto be...”- Robert A Heinlein, Stranger in aStrange Land

In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.

Patient Reported Data is very important.

What is your favorite story?Mine is Mother Hulda, and it has helped define my lifeBut my husband loved Buffy the Vampire Slayer, and loved it so much that he wrote his dissertation on it. He the loved Dark Towerso much that he died in its shadow. Combined these stories helped define us both.They taught us the power of the Long Story.

“So they were married, and lived happily ever after.” The Holliday Family Christmas 2007

Everything we ever wanted… Resolutions January 2008: 1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartment Freddie’s IEP Binder

During the months ofJanuary, February and March of 2009,Fred was in constant pain.He visited two Emergency Departmentsand was sent home.He visited his Doctor’s officemany times.He was given pain pills each time.Often he posted a Facebook status relating to his health

Fred was hospitalized on March 25th 2009 for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medicalconference and was not reachable by cell phone.

I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult?

This is my husband’smedical record.I was told it would cost73 Cents per pageAnd we would have towait 21 days to get a copy.

“She must have not tried very hard to get the record…..” Getting a copy of an unpublished book by Stephen King compared to patient access to EMR while hospitalized.12

I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. I used this information to create an easy to understand “face-sheet.” Then, I painted it on a wall in Pumpernickel’s Deli in Washington, DC for all of our neighbors to see…

Next, my new friends in the world of Health 2.0 began blogging.

Why did we get more help and answers fromSocial Media than from our local hospital ? I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer. Within one day were in email contact and then spoke on the phone. By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.

Facebookas a Caring BridgeI joined Facebook onSeptember 14, 2008in order to organize the our son’sbirthday party.On March 25th 2009 I had 46 friendsand had posted 67 status lines.In the months during Fred’shospitalization,I would useFacebookas aninformation clearing-house.Hundreds of friends and family wouldlog on in order to check Fred’smedical status.

We fulfilled our final 2008 resolution on June 11th 2009.We moved into a two bedroom apartment so I could care for Fred in home hospice. He died six days later on June 17th, 2009

Painting Advocacy meets Social MediaStreet art is truly the first global art movement fuelled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010

“Shouldn’t Art stick to what it does best- the delivery of pleasure? And forget about being a Paintbrush warrior. Or, is it when the bombs are dropping we find out what art is really for?” -Power of Art by Simon SchamaI painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001Connecticut Ave. in Washington, DC. It is a monument to Fred and patients everywhere.And just like the internet, it advocates 24 hours a dayand you cannot tell a wall to shut up.

“Where do we go from here?”

How telling the story changes things. How would the child in me change things?The way patients are treated reminds me child abuse in the 1980’s. No one talked about it. Then we heard of Adam Walsh and saw faces on milk cartons.

We must give patients and caregivers Permission to tell their story.And must help provide platforms to spread their tale.

How would a toy store clerk promote better care for patients? Compare POS (point of sale) system adoption rates to EMR (electronic medical records) adoption rates, and and ask what are we waiting for?Why not have CDS (clinical decision support) for patients? The 20Q Ball is a toy that combines a dictionary, an AI interface and a mathematical algorithm. It plays 20 questions with you. Why not have this kind of tool for diagnostic support as patients wait?Expect good customer service in medical environments. There is no excuse for poor eye contact, lack of proper greeting and poor communication in health.

How would a mother of a special needschild create positive change in patient care?Demand that the level of family inclusion that is part ofthe IEP process become the norm in medical settings.Use the right to patient data access within Meaningful Use,like a parent uses the right to records access provided bythe Freedom of Information Act.Support tools to overcome “face blindness.”Help people, autistic or not, to recognize faces and facialexpressions, including pain.

Caring for the Caregiver:Not all Rainbows and Butterflies

Sometimes there is nothing more that can be done.

SometimesAllWeCanDoIsDanceAndRejoice.

How would an artist, a speaker or a poet promote Patient-centered Care?The more stickers that are out there the more important it seems. The more important it seems, the more people want toknow what it is. The more they ask they ask each other. It gains real power from perceived power. -Shepard Fairey

What would you do to change things?What would you do as a wife or mother, a sister or brother, a co-worker or friend to change things... for them?

Linkage

by Regina Holliday on Apr 03, 2012

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