Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night daily, stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?” -Regina’s Question to Aneesh Chopra 6-29-09
The power of a story
I have presented or painted before these venues and companies:
I am Regina.
I am named after a great Aunt Regina
who died at the age of five from scarlet fever.
My mother embroidered this prayer that hung above my bed as a child.
Every night I prayed and was reminded that this night could be the last.
The writing on the wall:
Art, balance and the IEP
When the abuse becomes too bad call this number.
14 years later,
Fred would meet Regina on stage in a scenic painting class atOklahoma State University.
We would talk of Stephen King’s Dark Tower.
We would fall in love.
You know it is true love when you sell your comic book collection to pay for the wedding.
Fred and I married, worked and played together for many years.
Fred continued his schooling and worked as video store clerk.
Fred would get a PhD in film studies
and would write his dissertation
About “Buffy the Vampire Slayer.”
Freddie III joined the family game
the littlest player Isaac in 2006.
I would paint
I would also
teach art at a local preschool.
I would work in a toy store.
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
Fred was happy with his new job.
But he was very tired,
He went to the doctor and was
diagnosed with hypertension.
During the months of
January, February and
March of 2009,
On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.
Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he had “tumors and growths.”
He was scared and confused and did not understand.
His oncologist left town for the next four days to a medical
conference and was not reachable by phone or email.
What was the diagnosis? What were the treatment options? Would he get a pain consult?
After waiting for
days for a transfer
to another hospital for a second opinion,
We were sent with an out of date
and incomplete medical record
and transfer summary.
The new staff spent
hours trying to
cobble together a current medical record
Using a telephone and a fax machine.
This is the
vital clinical information
from Fred’s electronic medical record.
Presented in the style of
the Nutrition Facts Label.
Then painted on the wall of
Pumpernickel’s Deli in
“What about the
We were told the order had been placed.
It did not come.
I am trying to talk with Christine Kraft and epatient Dave.
Why did we get more help and answers from
than from our local hospital ?
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.
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
The Power of a Story
Written on the Wall
June 23, 2009
Attend Free Public Meetings
June 29, 2009
I am asking you how will the
patient and patient advocate
be allowed to access the
information of (the) EMR, to
have that a standardized
form, that we all as
advocates of our spouses or
loved ones, (can) provide the
best the best level of data
and catch all kinds of errors
in the medical record?”
“I applaud you for what you
(are) doing with limited
resources to try to help your
family, but I am committed to
making sure we have a
foundation available so that
clinicians on their own and by
themselves and amongst
themselves can start to have
those kinds of transactions
Chief Technology Officer and Associate
Director of Technology
I didn’t see patient access to the EMR addressedin his answer.
Share your Story
July 23, 2009
Senate Press Conference: High
Costs of Health Care
The more stickers that are out there the more important it seems.
The more important it seems, the more people want to know what it is.
The more they ask they ask each other.
real power from perceived power.-Shepard Fairey
David Lee Scher, MD
All over the world, patients
Are demanding their data.
They are demanding access
to the data from their doctors,
from their hospitals,
and from the devices
inside of their bodies.
Blue Button: More than app for veterans
and the story of Peter L. Levin
Do you know about
Engage with Grace?
Alex Drane created this after losing a family member.
Freddie Holldiaygrows beyond peering through
a door crack to walking in a Gallery.
Isaac grows up.
He joins the gallery as an artist.
His jacket is named “Feelings.”
In this year’s jacket he focused
on diabetes care.
Standing out and looking different,
Can be uncomfortable or frightening.
But is often needed for advocacy.
You can take a negative and turn
it into a
Let Patients Speak
We must encourage every committee,
conference and hospital board,
to actively recruit and include patients
in every aspect of the care process from
design to implementation to resolution.
Invite patients and you will include artists,
poets and writers in creating health policy.