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Sunday, May 3, 2015

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:

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 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

·         PETITION:  (Bitly:
·         FACT SHEETWhat 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.    

Friday, May 1, 2015

#Cinderblocks2: Our agenda as it grows in real time.

Cinderblocks2 June 4-6, 
2015 Grantsville: Our agenda as it grows in real time.

“Light yourself on fire with passion and people will come from miles to watch you burn.” ~John Wesley

(This agenda will keep getting bigger and better so keep coming back to learn more!)

You can register to attend this event #Cinderblocks2 

Thank You to our sponsors for helping make this event a reality. 

Diamond Cinderblock Sponsor: Lilly Clinical Innovation

Golden Cinderblock Sponsor: Lifetime Health Diary
Silver Cinderblock Sponsor:
Kanter Family Foundation

From 12-12:45 June 4 at the event we will be doing transatlantic interviews with attendees at Doctors 2.0 and You in Paris, France.  Thank you Spruce Artisan Village for offering wifi to support that endeavor! 

Conference Day 1
On June 4th we will meet at 8:00 am at Penn Alps Restaurant and Meeting Center for breakfast.

General session begin in Penn Alps

8:30 Opening remarks are by Regina Holliday, Patient Rights Artist and Lynn Lais, Potter
9:00 Paul Edwards, Garrett County Commissioner, will present an overview of the area.
9:30  C.W., Edmondson, DDS from Pampered Smiles, Dental Day Spa
10:00 Mountain Laurel Medical Center Presentation by Lisa Skipper 
10:30 Break
10:45 Colin Hung, Co-Founder of Healthcare Leader chat 
11:00 Mark Boucot, CEO, will present on the work of the staff and leadership of Garret County Memorial Hospital.

During presentations easels will line the back of the space for those attendees who wish to paint while they listen. 

Lunch is at noon.  Our luncheon presentation in the Alpine room will be "The Diary: Charting lifetimes of Data." 
Presented by Kirk Saunders, Chairman of the Board of Directors of The Diary Corporation.

Also during lunch some attendees will be doing interviews with attendees at Doctors 2.0 and You in Paris, France. Interviews will be hosted by the amazing Gregg Masters.  

The Dunbar Room will have lounging seats for any attendees who need to rest during or between sessions. Nora Reno, registered massage therapist, will be offering 7 minute massage sessions 12-1pm and 3-4pm in the Dunbar Room. 

Alpine Room

1:00-1:50 Changing the Treatment in Mental Health
Matt Keener , MD, from BlackBird Health will present on his innovative work in Pittsburg working in pediatric, adolescent, and young adult behavioral health using a therapeutic recreation approach.  He will stress the need social support and a peer moderated approach. 

2:00-2:50 Care Transitions: Who is falling in through the cracks?
This panel will address concerns in elder care, living on disability funds and special needs populations.
Mary Anne Sterling, President of Sterling Health IT will speak about the use of technology to aid transitions, especially focusing on elder care.
Melissa Hardy will provide the patient and caregiver voice.
Susan Thatcher will present in light with her work at Salem's Children Trust and her work with special needs student populations.  

3:00-3:45 Hospice: A conversation we need to have.
This hospice panel presentation will talk about the awareness and use of hospice care in Maryland and beyond.
Donna Jo Brenneman, Executive Director of Garrett County Hospice will talk about care transitions as they pertain to hospice and talk about the larger picture of safety net services for the entire family during this time of stress. 
Courtney Mazza will talk about her role in the Threshold Choir. 

Edelweiss Room

1:00- 2:00 Fracking and the Affect on Public Health
This presentation will be given by Nadine Grabinia and Annie Bristow. They will focus on public health in light of water quality and environmental concerns.  This subject is very timely as Garrett County moves forward with an economic impact study of fracking. 

1:10-1:50 Crystal Therapy Workshop
Artist and photographer Shannon Shine will lecture on crystal therapy and integrating arts into health.  

2:00-2:50  Guided Meditation
A guided meditation session by Christopher Selomon Closson

3:00-3:45 Gather for a walking meeting hosted by Ranger Julia Wieners in Casselman River Bridge State Park   Julia will provide a presentation highlighting the history of Casselman River Bridge State Park, and speaking on the health benefits that state parks and public lands can provide.

The Big Tent

2:00-2:50 Courtney Mazza will demonstrate painting techniques for the Walking Gallery
3:00-3:50  Aaron Smith will host short presentation and a how to hula hoop workshop.

General Session Alpine Room

4:00 The Patient Voice
A Presentation by Kym Martin.

4:30 Closing comments for the day. 
Regina Holliday closes the traditional conference days with a request to return in the evening for the art performances.

Traditional conference sessions end.  Feel free to explore the grounds, rest and grab a bite to eat before the evening program begins.

The Walking Gallery Gathers 7:00-10:00pm 

At 7:00 pm we will at the Casselman Resturant and Inn for a group shot of The Walking Gallery and the conference attendees.   We will then walk across the historic Casselman Bridge to the Little Crossings field by Spruce Artisan Village.   

There we will have our evening event under the big tent; this portion of the conference event is open to the public and does not require tickets. 

Ross Martin, MD will sing several of his songs focused on healthcare. 

This will be the 4th large gathering of The Walking Gallery of Healthcare.  In this space we will get to hear people tell their powerful stories. We will get to hear singers and musicians who are doctors and informatics professionals.  We will watch those that dance with fire. Christopher Selomon Closson will dance a fire poi presentation. The Ilumiknights, Aaron Smith, Aaron Long and Brett Rapson will fire dance and light the bonfire.

We will embrace the spark within ourselves and remember those we lost as we endeavor to make this world a better place.  We will close in the spirit of Burning Man and walk away on an illuminated bridge crossing the chasm of care. 

Conference Day 2
On June 5th  another conference day begins!  At 8:00 am we meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  

Alpine Room

8:30 General session begins 
Opening remarks by Regina Holliday

8:45 ePatient Dave DeBronkart will give a keynote presentation 

10:00 Mark Scrimshire will present a discussion on Patient empowerment and Blue Button.

10:30 Break

11:00 I Got Your “1” Patient Here: Health Literacy, empowered patients and living life as a cautionary tale.  

In this panel patients will discuss the challenges inherent in the system. 
Robb Fulks from Reading, Pennsylvania
Casey Quinlan from Richmond, Virginia
Ben Merrion from Washington, DC

12:00 Lunch 

Alpine Room

1:00-1:45 Sharing Data and The Learning Health System
A presentation by Josh Rubin, Executive Program Officer for Research and Development of activities related to the Learning Health System, University of Michigan School of Information
1:50 to 2:30 Failed Medical Devices and Patient Safety 
A presentation by Joleen Chambers, Failed Implant Device Alliance

Big Tent General Session

2:30-4 Facilitated Art Project by the Lilly Clinical Innovation team

4:00 is the close of the traditional conference day.  Feel free to explore and enjoy. 

PechaKucha Night Vol. 3 110 Main Street, Accident, MD 8:20-10:00pm Moon

At 7:30 we will carpool to Accident MD for a PechaKucha Night
Two of our attendees will be performing at this event and we will love to support them!
Josh Rubin, The Learning Health System
Carly Medosch, Chronic Illness Patient Advocate 

Conference Day 3

June 6th at 8:00 am meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  This day we will break into small groups to work on mentoring and individual coaching sessions.  General Conference closes at noon.  The party bus will be in the Penn Alps parking lot at 12:45pm to drive back to DC.

9:30- 10:15 The Big Tent
Lucy Leitner with an Apocalyptic Fitness session 9:30-10:15 in the big tent

10:30 The Big Tent
Face Painting with Loran  
Dodge Ball with Yoga Balls in the big field

10:15 -11:30 The Edelweiss/Dunbar 
Small group discussions

11:45 Big Tent
Closing Remarks Regina Holliday