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:
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 InformationYou need to let CMS know that patients do care and we do want to use our portals or access Blue Button. We do want to be a partner in our care and that starts with access. might find it scary to write a comment, but fear not. I just self-published a book as a dyslexic person suffering dysgraphia, I swear I did my best but my work is filled with spelling and grammar errors. Even so, the beauty and purity of story shines through. Tell your story too and explain why it is so very vital that patients be able to go online and read their information in a timely fashion. If it is challenging to use your portal let the vender know and let the provider know. If you need help getting logged on let your doctor and their staff know. We will not make the system better if we do not use it and improve it.
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.
Resources:· FACT SHEET: What Health IT Means for Women (National Partnership for Women & Families)
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.