Earlier
this year I won the Wego Health Offline Crusader Award. When I saw that Wego
Health was encouraging bloggers to accept a 30 days 30 blog challenge, I
thought I should participate. Alas, I
was rather busy in April attending, painting and speaking at three quality
conferences in three states as well as participating in TEDMED and the TMIT HIT
Summit
The
lovely Amanda and Susan of Wego Health had a few questions for me after winning
the Offline Crusader Award. I thought I should answer these questions in my
final health activist challenge blog.
1. How/why did you become
a Health Activist? Tell us your Health Activist story!
How
do I answer such an upbeat and peppy question? I don't think it was written with my story in mind...
My
wonderful husband Fred died in painfully after suffering for weeks from
inadequate pain management and suffering the emotional despair of being disregarded
and repeatedly injured due to lack of coordination of care and continuity
within his medical record. On top of
this, we were not allowed access to his electronic medical record in the first
facility he was cared at. We were told
we must wait 21 days and pay 73 cents per page to see the story of his care. Then they told us we could go home to die. That
is when my husband told me to “go after them.” I have never stopped going after them and will never stop until
we change the health care system in the United States
After
painting my husband’s story for all to see, I began to paint other patient stories. These stories make up a patient advocacy movement
called The Walking Gallery. There are
over 140 painted stories in The Walking Gallery at this point. Far too many
represent the story of a life cut short due to medical error.
2. What are your goals for Health Activism in
2012?
I
want patients to have open and real-time access to their electronic medical
record.
I
want to break through the silos that separate us. We must treat the patient as a whole person
and the care model must be designed that way as well.
I
want us to culturally accept conversations about death as part of life.
I want the 2012 Wego Health Award winner’s to include a few more Speaker’s for the Dead. I think I am the only one this year.
I want the 2012 Wego Health Award winner’s to include a few more Speaker’s for the Dead. I think I am the only one this year.
I
want to see more artists, poets and musicians presenting at medical
conferences.
3. What awareness event or effort are you most excited about
in your condition?
Would
that be the human condition in which we all share? Meaningful Use, check it out. It is a game changer.
4.
If you could tell other Health Activists a few things about your condition and
your community, what would you want them to know?
Be
supported by your community, but do not silo yourselves within it. Join other tweet chats and other facebook groups. We all have more in common than you
think. Those that do not wish to embrace
a patient centered model of care like us separated. We are small and easily defeated when complaining
within echo chambers. We are many united, and under the banner of patient there is nothing we cannot accomplish.
5. Tell us what links you’d like us to include in
our post (think links to your blog, twitter, an organization you love!)
I would like everyone to submit public comments to Meaningful Use Stage 2 specifying that patient access to the electronic
medical record should be in real-time, supported by access to an online patient portal. The entire Electronic Medical Record (EMR) should be open to patients and
their family caregiver including Doctors Progress Notes, Nurses Progress Notes,
Medical Administration Record, Medical Reconciliation Report, Labs, Imaging,
Active Care Summary and After Discharge Summary. In addition, provisions must be made so patients
can also submit amendments and their own personal data and add patient progress
notes.
So
that answers the questions. I have
finished only 23 blogs this month, but I did complete 24 advocacy paintings pictures below. Hopefully, it all counts toward my 30, after all I am the Offline Crusader...
1. Trees of Maine 4/5/12
2. Your Choice: Darkness or Light 4/6/12
1. Trees of Maine 4/5/12
2. Your Choice: Darkness or Light 4/6/12
3. The Linkage Pin Wheel 4/6/12
4. Listen to Me a jacket for Dr. Payne
5. Return to Sender a jacket for David Lee Scher, MD
6. "the Sacred Duty of a Mommy Blogger" a jacket for Wendy Sue Swanson
7. The Dance of Care 4/9/12 through 4/13/12
8. Space
9. The Missing Ingredients
10. Death
11. Spit
12. Fire
13. Drones
14. The Unmentionables
15. Sacred Cow
16. Flight
17. The First is Last
18. One Day Pass
19. The Natural State 4/17/12
20. The Moral Energy 4/18/12
21. Silos 4/25/12
22. Flame of Hope 4/25/12
23. Awards of Transparency 4/25/12
24. The Healthcare Tsunami 4-27-12
5. Return to Sender a jacket for David Lee Scher, MD
6. "the Sacred Duty of a Mommy Blogger" a jacket for Wendy Sue Swanson
7. The Dance of Care 4/9/12 through 4/13/12
8. Space
9. The Missing Ingredients
10. Death
11. Spit
12. Fire
13. Drones
14. The Unmentionables
15. Sacred Cow
16. Flight
17. The First is Last
18. One Day Pass
19. The Natural State 4/17/12
20. The Moral Energy 4/18/12
21. Silos 4/25/12
22. Flame of Hope 4/25/12
23. Awards of Transparency 4/25/12
24. The Healthcare Tsunami 4-27-12
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