This winter was hard for me. Winter always is. In my mind, I walk through yesteryears
and live through the months I lost my husband Fred.
I had a bad cough in January and February just like I had in
2009. My cough was pertussis this
time, not a chest cold. This time
it was my ribs that broke from explosive coughs, instead from metastasis as
Fred’s had.
This winter I felt I had to finish my memoir, so while
coughed I wrote. I tied together
the story that I have been working on for five years. This past week it became available on Amazon and it is
called The Writing on the Wall. I had wondered why I felt so frantic about quickly finishing
my book on the importance of patient data access, but I have learned not to
question such feelings. I just act
on them.
Then I went to HIMSS15 in Chicago.
Then I heard CMS (Centers for Medicare & Medicaid Services) was
considering cutting a key measure that affected patients in Meaningful Use
Stage 2. Facilities and Providers
complained that they were not able to ensure 5% of patients would view,
download or transmit their data in the Meaningful Use Stage 2 reporting
window. Anyway, they assured CMS,
patients did not want access anyway.
So CMS proposed gutting the legislation, removing the 5% requirement and
replacing it with literally “1” patient.
That is a slap in the face to patient rights and all the advocates
who have fought so hard to ensure patients could access their data. That is a slap in the face to projects
like Open Notes, a study that proved that patients have better engagement when
they can read their records.
We must act swiftly to counteract the belief that patients
do not wish to access the information that is by rights is theirs.
1. I am asking
everyone to comment on the federal register Medicare and
Medicaid Programs; Electronic Health Record Incentive Program-Modifications to
Meaningful Use in 2015 through 2017 before June 15, 2015:
https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to
The section I am very concerned about is
II. Provisions of the Proposed Regulations,
II. Provisions of the Proposed Regulations,
Here is what is proposed:
"Patient Action To View, Download, or Transmit Health Information
++ Remove the 5 percent threshold for Measure 2 from the EP Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient seen by the provider during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider.
- + Remove the 5 percent threshold for Measure 2 from the eligible hospital and CAH Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient discharged from the hospital during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider."
2. I am asking you to stand with me, to paint
with me, at noon on May 20, 2015 in front of the Health Human Services Headquarters Building at 200 Independence Ave, SW in Washington, DC. Let’s show
that we care in this very public way.
Even if we are just artists, even if we are just regular people, we care
about getting access to data. Lets
paint about core measures and blue buttons on a concrete field. Lets gather The Walking Gallery and
show HHS we care. I ask you to do this on May 20th,
the day my husband entered hospice in 2009.
3. Please SIGN this petitionTODAY and share far & wide with your moms, family, friends, colleagues and networks. Be part of a movement of individuals working toward greater patient access.
Hashtag: #MyData
Resources:
4. On July 4th let’s declare a
Data Independence Day!
That day we should all go on our patient portals, send our doctor an
email, schedule an appointment and download or view our health
information. I know it is a
national holiday and the doctor’s office is closed. That is one of the reasons we patients want portals and Blue
Button access. We want to access
information in a timely fashion day or night, whether it is a holiday or
not.
And God forbid something dreadful happen on a holiday. It did in my small town last year. A
local third grade boy was burnt on the Fourth of July. A sparkler ignited his clothes. Most of
his body was burnt and he is still having skin graft surgeries. He is exactly why we must have
access. Illness and injury happen
regardless of holiday schedules; and the internet never sleeps.
Have you listened to that song by Martina Mcbride? It is called “Independence Day.”
“Let freedom ring, let
the white dove sing
Let the whole world
know that today
Is a day of reckoning.
Let the weak be
strong, let the right be wrong
Roll the stone away,
let the guilty pay
It's Independence
Day.”
In that song abuse is described. Independence Day is the day abuse could no longer be
tolerated. I suffered through 17
years of child abuse and I can tell you being stuck in a hospital without
access to information hurts your heart and soul, as assuredly as any belt or
switch ever hurts your skin. If
CMS guts this measure, the welt they will create will become an insurmountable
ridge separating us from our data.
This year Mother’s day falls on my birthday again. Just like it did in 2009. This year my husband will not give me a
birthday gift or a Mother’s Day gift.
He died too soon, partly due to poor access to data. You are still here and can give the
most amazing gift.
You can publicly ask for your data, you can paint with me or
demand a day of action.
It is your choice.
You can help make a better future for us all.
