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Monday, December 28, 2015

The Walking Gallery: Year 5

This is the fifth year of the Walking Gallery of Healthcare.  

We now number over 300 members walking around the world with patient story paintings on our backs. 
This "walking wall" is changing minds and opening hearts. 
We are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. We are providing a patient voice, and by doing so, are changing the conversation.

An artist or artists interviews medical professionals and lay individuals to form a patient centric narrative. The artist then creates representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” wears the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media.

As of June 2016, 392 unique Walkers have joined the Gallery wearing 430 jackets.  The Gallery has representatives on five continents, but the majority of Walkers reside in the US. One artist creates the majority of the art, but new artists are frequently joining the movement.  The Gallery is promoted heavily on twitter, facebook and personal blogs.   Its widening appeal within the health conference community is creating a new space for patients at such events.

The names of the Artists of The Walking Gallery followed by the quantity of jackets they have painted:  
1. Regina Holliday, 372 jackets
2. Isaac Holliday, 1 jacket
3. Becca Price, 1 jacket
4. Miriam Cutelis, 1 jacket
5. Ess Lipczenko, 1 jacket
6. Ben Merrion, 1 jacket
7. Courtney Mazza, 8 jackets
8. Michele Banks, 1 jacket
9. Megan Mitchell,1 jacket
10. Robert J. Filley, 3 jackets
11. Anita Samarth, 1 jacket
12. Mary Welch Higgins, 2 jackets
13. Richard Sachs, 2 jackets
14. Jonah Daniel,  1 jacket
15. Fred Trotter, 1 jacket
16. Leela, 1 jacket
17. Gayle Schrier Smith, 1 jacket
18. Moira Simms, 1 jacket
19. Joan Holliday, 1 jacket
20. Adalyn, 1 jacket
21. Chris Chan, 1 jacket
22. Amy O'Hanlon, 1 jacket
23. Vera Rulon, 1 jacket
24. Jessica Nicula, 2 jackets
25. Nikai, 1 jacket
26. Deonm, 1 jacket
27. Daquane, 1 jacket
28. Olivia Dias, 1 jacket
29. Donnell Bonaparte, 1 jacket
30. Hazel F., 1 jacket
31. Rachel Fields, 1 jacket
32. Zoe Carr, 1 jacket
33. Thomas Richardson, 1 jacket
34. Tamela Mack, 1 jacket
35. Julia Anderson, 1 jacket
36. DJ Hamilton, 1 jacket
37. Jenn Toby, 1 jacket
38. Camala Walling, 1 jacket
39. Jordan Lanham, 1 jacket
40. Josh Miller, 1 jacket
41.  Te'j Matthews, 1 jacket
42.  Tony Zieger, 1 jacket
43.   Shannon Shine, 2 jackets
44.   Melody Smith Jones. 2 jacket
45.  Kay Seurat, 1 jacket 

For more information about joining the movement please scroll to the bottom of this post.

The Walking members who joined in Year Five:


430. "Family" a jacket for Mia Sampson




429. "Green Drops" a jacket for Leigh Anne Naas




428. "The Path to Patient Empowerment" painted by artist Kay Seurat for Jan Oldenburg






427. "Healthcare:Paddling up hill with a paddle" a Frances Grace





426. "Building this Bridge" a jacket for Bridget Duffy




425. "The Woman at the Well" a jacket for Bettina Experton





424."Coding for Humaity" a jacket for Randa Perkins painted by Melody Smith Jones





423. "Cellular Migration" a jacket for Deb Maskens






422. "Hands of Time" a jacket for Mary Dixon Drake

 



421. "Too Much Loss" a jacket for Kim Bock





420. "No Map for This" a jacket Bill Fisher





419. "Game Face" a jacket for Kendra Wickizer





418.  "Polypharmacy Pinball" a jacket for Cindy Fisher





417. "#50" a jacket for Brenda Foose 





416. "Targeted Therapy" a jacket for Wanda Cronrath




415. "The Side Show" a jacket for Aaron Smith




414."Using all the Colors in My Box" a jacket for Jenn Lonzer




413. "The Free One" a jacket for Francisco Grajales




412. "Winning the Science Fair" a jacket for Steph Hanzl




411. "V is for Victory'' a jacket for Glen Lanteigne




410. "Trees as Far as the Eyes Can See" a jacket worn and painted by artist Melody Smith Jones



409. "Falling Through the Cracks" a jacket for Mary Jo Shields



408. "Preconceived Notions Set in Stone" a jacket for Christine Kurtz



407. "I see clearly now" a jacket for Michael Bennick




406. "Determination" a jacket for Tamara StClaire 




405. "Too Many Saints" a jacket for Lori Etheridge Nerbonne




404. "This Final Song" a jacket for Robin Strongin




403."A Masters at Work" a jacket for Teresa Masters


402. "I Hear You" a jacket for Melissa Phipps 



401."The Ups and Downs, and Downs, and Downs" a jacket for Liz Boehm



400. "Data Flight" a jacket for Stacey Conklin



399. "This is my first rodeo." a jacket for Joe Lavelle





398. "DNR" a jacket for Brandon Jones

397. "Double Major" a jacket for Leslie Rott



396. "Healing this Wound" a jacket for Kenyon Crowley



395. "The Light Within" a jacket for Geri Lynn Baumblatt



394. "Concealing and Revealing" a jacket for Ramin Bastani







If you are interested in joining the Walking Gallery here is the info:



Here is a short film about the movement: http://vimeo.com/80009527




to understand the origin of the idea.



http://reginaholliday.blogspot.com/2011/06/walkers-oath.html to understand the sacred nature of this path



To view the jackets in year one 1-162




To view the jackets of year two 163-251



To view jackets of year three 252-328
http://reginaholliday.blogspot.com/2013/08/the-walking-gallery-year-three.html

To view jackets year four 329-393
http://reginaholliday.blogspot.com/2014/07/the-walking-gallery-year-iv.html

The Rules of The Walking Gallery:  What you need to do to be a member: 

1.  Promise that you will wear this jacket to conferences and public events at least 2-3 times per year in order to spread awareness of the power of the patient voice.

2.  Send a business jacket. Please do not send jackets made of seersucker, corduroy, knit, denim, leather or stretch fabric, as they are hard to paint on. Absolutely do not send stretch fabric.  I cannot paint on stretch fabric, as the painting will shred.  You can check if a jacket is stretch by trying to pull at the fiber on the horizontal. Also this is a business jacket on purpose, we are painting on the “uniform” of the conference attendee.  Fabrics that work well are poly-blends, linen, cotton and wool. Also you might want to by a jacket a size larger than you usually do as the painting will stiffen the back and make it harder to close the buttons. 

3.  Tell me your life/patient story, your patient-centered concept that is the center of why you work in health and medicine. Please include personal details of your life so I can more fully realize your image.  You can tell me which story elements you do not wish to publicly disclose in text, but it does help to know the underlying experiences and conditions that are the source of your mission. Please send via email with some pictures if possible of yourself or the people in your story.  If you don't want to provide a picture, that’s okay, I have a vivid imagination.  Also please print it out and send with jacket so I can keep track of jackets and their stories.

4.  Artists can participate by painting their own jacket or another's or both.

5.  This movement is spread and organized through social media.  You will need to use twitter, Facebook, etc. to support the mission.  I am using Twitter hash tag to link us all together so please tweet about your jacket appearances under #TheWalkingGallery

6.  You are free to use the image in your own advocacy mission; I also retain the right to reproduce the image for advocacy purposes and write about your mission in areas you are comfortable with disclosing. 

7.  Donations are welcome to offset the cost of paint and shipping, but are not required and you cannot buy a jacket painting.  You are joining a movement and this is a sacred oath to walk the walk and spread the word.



Welcome to the Gallery.

Any questions?

Monday, June 15, 2015

Last Day to Comment on Stage 2 Meaningful Use

It is the last day for comment on Stage 2 Meaningful Use!  Here is mine if you need inspiration:

"On July 13, 2010 I shared the stage with Kathleen Sebelius, then Secretary of Health and Human Services, David Blumenthal, then National Coordinator of Health Information Technology, Don Berwick then Administrator of CMS and Regina Benjamin, then Surgeon General.  That day I was honored to represent the patients’ voice on stage at HHS headquarters during the unveiling of Meaningful Use Stage One.  Those of us in the patient community had testified for a year about the importance of timely patient access to the electronic medical record.  We were very happy that HHS included patient access as a core measure.  We looked forward to further inclusion as we entered stage two.

On May 20, 2015, I hosted a protest in front of the same institution that once welcomed me and the other patient data rights activists with open arms.  CMS was considering reducing the requirement of stage 2 Meaningful Use from a requirement that 5% of patients must view, download or transmit in a reporting period to literally only one patient.  This is a slap in the face to all of the patients who have fought so hard for greater inclusion these past five years.

I urge you to reinstate the 5% threshold.  There have been great strides in the last five years in better population health outcomes through patient engagement.  Concurrent legislation from this administration has at its core a belief that access to care is a must for all citizens of our great nation.  Through such access patients can begin to control their own health destiny both economically and physically.    

On July 13, 2010, I stood on stage and represented all of the patients that depend on the data access rights granted in Meaningful Use.

You invited me to be their representative.  With that mantle still in place these many years later, I must insist you reinstate the 5% threshold.

Thank You,
Regina Holliday,
The Voice of the Patients and founder of The Walking Gallery"

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:

https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to

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

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