Let Freedom Ring

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,

• B. Meaningful Use Requirements for EHR Reporting Periods in 2015 Through 2017
• (c) Changes to Patient Engagement Requirements for 2015 Through 2017

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."

You 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 20^th, 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:

·         PETITION: www.getmyhealthdata.org  (Bitly: http://bit.ly/1QyfYuG)

·         BLOG POST: Do it for Mom: Sign Up to Support Electronic Access to Your Health Records Today

·         BLOG POST: Mother’s Day is patient records access awareness day for consumer health advocates

·         FACT SHEET: What Health IT Means for Women (National Partnership for Women & Families)

4.  On July 4^th 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.    

Not Your Father's CMS

Several times I have braved the sticky DC heat to trudge up the street towards the headquarters to Health and Human Services (HHS).  Currently there is a great deal of construction in the area.  Street grit and dust assail those who arrive by the metro tunnel.  It is very bright at street level and everywhere I looked stark concrete reflected the summer sun.  I walked up the street to the Herbert H. Humphrey building that houses HHS.  It was designed in the brutalism style.  The building is a white box with a repeated series of box like windows.   The grounds surrounding the building are white granite and concrete.  There is nothing of nature, no tree, no grass: all is hard angular lines.

I walked through the doors and passed through security.  The interior of the building is a classic space with warmer friendly colors.  Here the dark wood counters and floors of polished granite welcome the weary health enthusiast. 

Beyond security is the Great Hall.  This large open space was designed for change and the seating is modular.  High above large portraits of the former secretaries of HHS loom larger than life.

I came to HHS this day because John O’Brien, Senior Advisor of the CMS Innovation Center had emailed me an invitation to attend a National Stakeholder Briefing on Health Insurance Marketplace/Exchanges.  I took a deep breath and prepared myself for the next 2 and ½ hours of what I would assume would be a lecture about the Affordable Care Act.

I should have realized that this would not be a traditional meeting when I was handed a CMS packet containing only three sheets of paper.

Let me repeat that: Three sheets of paper.  That is quite odd.

I took my seat and then began to read my packet and practically squealed in excitement!  Written under a CMS logo were words I knew very well!

“Rules

1.     Whoever is there is the right group.

2.     When it starts is when it starts.

3.     Whatever happens is all that could have happened.

4.     When it’s over, it’s over

The Law of Two Feet

If you find yourself in a situation where you are not contributing or learning, move to a place where you can.

THIS WAS AN AMAZING DAY!  CMS WAS HAVING AN UNCONFERNCE!

I could not believe my lucky stars. The facilitator began explaining this process was an open space technique and they would be using it to discuss messaging around insurance exchanges.  He then asked the crowd of two hundred if any of those in attendance had experienced this process before.  I raised my hand proudly as did about ten other audience members.

He then asked for a volunteer to pitch their idea for a session and place it on the board.  There was quiet for a few seconds and then I jumped up and went to the front to grab the microphone.

“Hi, I am Regina Holliday and I am an artist who paints about healthcare.  I spent a great deal of my life uninsured and I would love to speak about how we can use art to reach people who are uninsured and need help.”

I then grabbed a marker and created the sign for my session.  People began to stand up in the crowd and slowly come forward to propose sessions and in about ten minutes the board filled.  Then we began to rearrange the chairs in the room in order to create session space. I went over to my session space to wait for our group.  Four people showed up. I know full well the rules of an unconference: “Whoever is there is the right group.” I quite enjoyed the conversation in our small group. 

The next session I attended was about the role of the Church in helping folks understand insurance exchanges and there were about 20 people in the group.  So in case you ever wondered at CMS talking about Art is scarier than talking about GOD.

The session on religion was great and was facilitated Lisa M. Carr, Associate Director of Faith-Based and Neighborhood Partnerships.   We had a wonderful group full of diverse perspectives.  Some people worked for CMS, some in advocacy and we even had a Reverend in the group.  We talked about Men’s Ministries, the importance of messaging from the Pastor and the different neighborhood groups that can be reached by one Church body.

All too soon it was time to place our chairs in a circle and report out.  A few people stood and expressed their excitement using this new method.  I spoke out too saying how happy I would be to tell patient advocates that CMS used this disruptive form. 

Before I left, I gave John a big hug and thanked him for inviting me.  HHS maybe shaped like a big brutal box, but the people who work there are thinking outside of it.