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Sunday, August 13, 2017

The #HIT100 and Jess Jacobs

One year ago today, I was at the maker fair in Accident, Maryland. 3-D printing, children painting, and Lego creations surrounded me.  In this maelstrom of creativity, I learned that Jess Jacobs had died.  Funny, delightful, caring Jess was gone. 

In the year hence, we dedicated a room in honor of Jess in Salt and Pepper Studios: Home of the Walking Gallery.  People all over the country made donations in her honor.  I placed flowers on our front walk dedicated to her memory.



Yesterday, Jess's sister Lauren Jacobs was able to visit the studio.  I was honored to show her Jess’s room.  Lauren remarked on how much Jess would have loved the room.  I built a large display case full of Jess’s art within the doorway frame to the adjoining bedroom.  I think there is a kind of poetry in that.  Jess lives on in a doorway between this room and the next.



Another local artist named Ashley Folk made the header on the case.  She created a plaque that depicts the name “Jess Jacobs” in nails and string. Nails and String: a perfect metaphor.   Our Jess endured such pain in her 29 years.  When I think nails, I think of smashed thumbs.  I think of the nail that went through my bare foot at 10 years of age while walking.  I think of Jesus on the cross.  I think of nails and it leads me directly to thoughts of shocking and surprising pain.  I look at the name “Jess Jacobs” on this plaque and see so many nails.  Each nail could represent a treatment, a hospitalization, or another day of pain. 

But then again, there is the string.  This string glued firmly, intertwined around all those nails to create the name “Jess.”  For that is what Jess did.  She entwined us all.  I met Jess on twitter long before I met her in person.  She was one of the #HIT100 in 2013.  She was a powerful patient leader that represented so many in health information technology without a voice.

This year during the #HIT100 voting in July, Ross Martin said we should nominate Jess.  When the list came out Chuck Webster made 3-D printed key fobs for all of the 100 that wanted one.  When my fob arrived, I first let it rest a few moments in #TheWalkingGallery of Lego.  Jess helped make so many of those figures.  Then I gave it to Jess.  I put a key ring on it and placed it in the display case.  It looked a little bit lonely, so I put my husband Fred’s keys on the fob. 



Under the keys and fob, there is a blue rose and a blue button.   The blue rose represents the thought that Jess will always be with us.  The blue button means we always fight for patient access to data, just like Jess. 


Sunday, July 23, 2017

The Walking Gallery: Year 7

This is the seventh year of the Walking Gallery of Healthcare.  We now number 432 members walking around the world with patient story paintings on our backs.  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 July 2017, 432 unique Walkers have joined the Gallery wearing 476 jackets.  The Gallery has representatives on six 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.

If you are interested in joining the Walking Gallery here is the info:
If you would like to help fund the movement: https://www.gofundme.com/h2dsdwe4 

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

The names of the Artists of The Walking Gallery followed by the quantity of jackets they have painted:  
1. Regina Holliday, 412 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. 3 jacket
45.  Kay Seurat, 1 jacket
46.  Danny McGinnest Jr., 5 jackets

For more information about joining the movement or to see all 400 plus jackets, please scroll to the bottom of this post.

The Walking Gallery members who had jackets painted in Year Seven:

476."The Patterns That Surround Us." a jacket for Aaron Seib




475. "Are you for change?" a jacket for Jason Grattini


474. "The Futurist" a jacket for Bertalan Mesko


473. "Condensing a Life" a jacket for Pat Rioux
  


Read: http://reginaholliday.blogspot.com/2011/04/walking-gallery.html to understand the origin of the Walking Gallery. 

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

To view jackets of year four 329-393

To view jackets of year five 394-430

Wednesday, May 17, 2017

Cinderblocks4: the agenda



Cinderblocks 4: The Walking Gallery Gathers is an art and medical conference that will be held in Grantsville, MD at Penn Alps Restaurant and at Little Crossings by The Cornucopia Café May 18-20, 2017.   I founded this event with the help of several other epatients and I am happy to see it enter its fourth year. I am known in healthcare circles as the artist that founded The Walking Gallery.  I and 46 other artists paint patients stories on the backs of jackets that people wear to medical conferences.  I see #Cinderblocks4 a continuation of the message of The Walking Gallery and as venue that prizes the patient and provider in equal measure.  We will use our days at this conference to focus on improving health care everywhere.

Your Friend, Regina Holliday
Founder of the Walking Gallery

Thank you to our Diamond Cinderblock Level Sponsor:




May 17, 2017

PechaKucha Accident Visits Grantsville! 7-9pm, The Cornucopia Café
Pechakucha is a fun & concise presentation style. PechaKucha nights have 8-12 speakers who follow a 20 slides 20 seconds pattern. We will have a few  Cinderblocks attendees presenting!

Thank you to our Silver Cinderblock level sponsor:


Cinderblocks4: Conference Day 1
On Thursday, May 18 we will meet at 8:00 am at Penn Alps Restaurant and Meeting Center for breakfast in the Alpine Room.
8:00 Opening remarks are by Regina Holliday, conference planner and founder of the Walking Gallery of Healthcare.

8:05-8:25 Paul Edwards, County Commissioner for Garrett County will present on the state of the county and the history of Grantsville.

8:25-8:45 Kimi-Scott McGreevy, Director of Grant Development Garrett Regional Medical Center, Oakland MD

8:45-9:10 Charles Wilt, presents on Mountain Laurel Medical Center
Charles Wilt
Mr. Wilt holds a Bachelor’s degree in Political Science from Frostburg State University.  He went on to do graduate work in Healthcare Corporate Compliance at George Washington University and then obtained a Master of Health Administration from Capella University.  He joined Mountain Laurel Medical Center in 2010 and currently serves as the Chief Executive Officer.  Prior to joining Mountain Laurel, Mr. Wilt worked in sales and marketing.
Mr. Wilt helped evolve Mountain Laurel Medical Center through community-based advertising.  In 2011, he constructed the first website dedicated to educating the public about Mountain Laurel’s mission to serve Garrett County and the surrounding areas.  He also led the effort to achieve Patient Centered Medical Home Recognition from the National Committee for Quality Assurance (NCQA).
Mr. Wilt serves as Chair to the Garrett County STEPS to Better Health Committee and he has served as Election Judge with the Garrett County Board of Elections for over 15 years.  He is a lifetime resident of Garrett County and resides in Oakland.

9:15-9:35 Ashley Elliott, Grantsville, “Addiction happens but so does recovery.“

9:40-10:00 Shelley Argabrite and John Corbin, Garrett County Health Dept, They will speak about digital community engagement collaborative found at GarrettPlan.org

10:05-10:55 Angela Radcliffe, FCBHealth, a workshop on clinical research as a care option where she teaches brainstorming techniques.
 
11:00-11:40 
Insurance panel: Jessica Wilhelm, Felicia Schrock, and Renee Green: “Why Do you need insurance?”
Renee L. Green
Ameriprise Financial Advisor
At Ameriprise, our goal is to help clients achieve the full and rich life they have earned. With our exclusive Confident Retirement ® approach we look at four basic needs: covering essentials, ensuring lifestyle, preparing for the unexpected and leaving a legacy. Together we will explore each to create a comprehensive financial plan customized to your life. Then we’ll track your progress and make adjustments as life unfolds. I’m committed to your success and believe that when you take the right approach to financial planning, life can be brilliant.


Jessica Wihelm
Woodmen Life
I began my career with WoodmenLife in 2016 as a Sales Representative. I’m proud to represent a not-for-profit organization with more than 125 years of financial strength. Our longtime commitment to our customers and to the communities we serve is what sets WoodmenLife apart.

Felicia Schrock
Uses patient-centered interdisciplinary approach to health care and care coordination, utilizing patient values and goals, community resources and benefits such as home based assessments, medication reviews, enhanced monitoring, and expert consult among others.


11:45-12:00 Julia Musselwhite, DNR  Healthy Parks, Healthy People: Finding Wellness in Your Local Outdoors

Ranger Julia Musselwhite has worked for the Maryland Park Service since 2006, beginning as an AmeriCorps volunteer with the Maryland Conservation Corps and eventually earning full time ranger status.  Her career began near her hometown in Harford County, but she has been a Garrett County resident since 2011 and is the current Assistant Park Manager at Rocky Gap State Park in Allegany County.  Whether for work, or in her personal life, Julia enjoys time outdoors and helping others discover new opportunities and adventures.

Lunch is at noon.  Some attendees will go on a walking tour with Ranger Julia.

12:50-1:20 Mary Anne Sterling PCORI-funded project that speaks to many things the ePatient community holds dear. It’s called Patient Priorities Care and the goal is to align primary and specialty care to improve the health and healthcare of older adults with multiple and complex health needs. A pilot project is already rolling in Connecticut.

1:25-1:45 Heather Hanline, Executive Director of the Dove Center, will present on the correlation between health disparity and trauma/sexual violence. 
Hanline holds a Master’s degree in Counseling Psychology and is a Licensed Clinical Therapist.  She has over 24 years of experience in the human services field, working with trauma victims in a variety of settings.  For the past 19 years, she has followed her passion to end domestic violence and sexual assault with the Dove Center, where she began as a counselor and has spent the past 17 years as the Executive Director.  She is a past recipient of the Governor’s Victim Assistance Award, for doubling the number of individuals served by the Dove Center in her first year of leadership.  She also spearheaded the building of the Dove Center’s combined counseling and shelter offices, which now stands as a permanent symbol of safety and healing.  She has written guest blogs for several statewide organizations, and has originated many innovative programs within the Dove Center’s programming.

1:45-2:00 Robb Fulks, Reading, PA will be telling his Patient Story

2:00-2:25 Christopher Elliott, Residential Lead for the State of Maryland, Grantsville
2:30-3:00 , Joleen Chambers, Dallas, Texas, founder of Failed Implant Device Alliance, “Junk Joints & Dr. Who-An Update”
 Joleen Chambers (Dallas, TX) is a trained FDA Patient Representative (with an M.S. in Rehabilitation Counseling) and a national advocate (member of Consumers Union Safe Patient Project, National Patient Advocacy Network, board member of HealthwatchUSA) for patients preventably harmed by unsafe and ineffective implanted medical devices.  At home in Dallas, TX Joleen is a board member for Leadership Women, Dallas Black Dance Theatre and Undermain Theatre .   

Her brother, Steven Baker, is a career union millwright. In 2001, a criminal harmed him on-the-job and his elbow received multiple fractures.  In 2008 he was referred to a respected national health institution for an ‘innovative’ new elbow replacement implanted by the surgeon that designed the device.  Just 4 months later, the device was unsuccessfully ‘revised’ by  surgically removing two of the 4 components.   Steven now lives in rural southeastern Minnesota on the generational family farm while enduring unrelenting pain and loss of function in the elbow.  
3:00-3:30 To be determined
3:30-5:00 Donna Jo Brenneman, Executive Director of Garrett County Hospice Screening ”Being Mortal” by Atul Gawande.

The daily educational conference session ends.  Feel free to explore the grounds, rest and grab a bite to eat before the evening program begins.
6:00pm to 8:00pm Dedication to those we have lost in the past year at Salt and Pepper Studios
On Thursday, May 18th at 6:00pm a dedication will be held at Salt and Pepper Studios: the home of the Walking Gallery 189 Main Street in Grantsville. Conference attendees and members of the public are invited.  Refreshments will be provided and the dedication is free and open to the public.  Joseph Kim of Eli Lilly will sing a few songs in memory of Jerry Matczak.  Marsha Goodman-Wood will sing in memory of Jess Jacobs and Dave Wilt.

Conference Day 2,
On Friday, May 20th another conference day begins!  At 8:00 am we meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  
8:00am breakfast in the Alpine Room Opening remarks Regina Holliday


8:35-9:00 Renee Green, presenting on her film project
the documentary Buzz One Four Impact Documentary - Rescue & Recovery: About how the Grantsville Community became the first responders when a B52 with 2 thermonuclear bombs crashed on the mountain in 1964 during the blizzard of the century. 

9:05-9:30 Brandon Kling, A Passion For Cheese
9:35-10:05 Alex Fair, Medstatr “7.5 Billion Candles”
10:00-12:00 Local photographer Kristina Butler will take photos of the attendees in the lovely Casselman Bridge State Park.  Stephanie Diane will be the stylist working with attendees during the photo shoot.
10:05-10:40 Mark Scrimshire from Center for Medicaid and Medicare Services in Baltimore will present a discussion on patient empowerment and Blue Button.
10:45-11:00 Andrew Yoder, Life Coach, Grantsville
11:05-12:00 Mark Boucot, President and CEO of Garrett Regional Medical Center, an affiliate of WVU, will present on the hospital’s expansion in the last year and its continued embrace of value based care and the hospital’s plan to embrace cancer care in Western MD.  
12:00-12:45 Lunch and field trip.  Some attendees will tour the new cheese factory during lunch.
12:20-12:40 Julie Arnheim, Wellness Thinker, Pittsburgh, Pennsylvania


12:45-1:15 Esther Fischer, Adult protective services specialist, Oklahoma Department of Human Services, Enid, Oklahoma “Be Prepared....for Life and Death”

Esther Fischer grew up in Sapulpa, OK and graduated from Oklahoma State University with a BA in Sociology, emphasis in Social Work.  She began her career with the Oklahoma Department of Human Services in March 1997.  For the past nine years, she has worked in Adult Protective Services, investigating allegations of abuse, neglect and exploitation of vulnerable adults.  She has been married to Kelly for 17 years and is the mother to Kellyn, age 12.  She enjoys being an adult leader in her son’s Boy Scout Troop, actively participates in her church in children’s ministries and choir, helps care for her aging mother, and focuses on her health by being a member of a Crossfit group. 

1:20 -1:45 Ladd Everitt, One Pulse for America, Washington DC, Presenting on the financial costs of treating the victims of gun violence

1:45-2:00 Matthew Listiak, Los Angeles, CA, "Patient Stories, Patient Partners, Patient Solutions."
Matthew Listiak is a filmmaker, bootstrapper, and web developer. He has worked in healthcare and patient advocacy for the past 15 years with the goals of reducing healthcare harm and giving a voice to patients through storytelling, websites, and e-learning. As producer of the Discovery Channel documentaries Chasing Zero: Winning the War on Healthcare Harm and Surfing the Healthcare Tsunami: Bring Your Best Board, he travelled the world capturing compelling stories and developing them into acclaimed television shows that have inspired positive change in the healthcare industry. He is a humbled and proud member of The Walking Gallery of Healthcare. He is currently developing a storytelling content engine and educational platform called Patient Solutions that will promote actionable, measurable solutions that are developed by patients, for patients. When he’s not filming, editing, or otherwise clicking and dragging, he enjoys growing food, taking walks, and watching Doctor Who with his daughter. 


2:00-2:30 Mélanie Péron, CEO and Founder, L'Effet Papillon, Laval France
In 2011, after her experience as a patient’s companion, Mélanie Péron, founded l’Effet Papillon, a social enterprise the aim of which is to create a real social impact on the lives of patients suffering from cancer, of vulnerable or isolated people and those who accompany them. Since 2011 the social company has accompanied almost 3,000 patients and today, l’Effet Papillon is a significant partner of the health community by offering a wellness overall approach to vulnerable and ill people.

The website of Bliss in english http://bliss-project.com/?locale=en_US

2:30 to 3:00 Jessica Gada, The Healing Power of Creative Expression & Integration: An Overview of Art Therapy 
Jessica Gada, LCPC, LCPAT, ATR-BC is a Licensed Clinical Professional Counselor, Board Certified/Licensed Clinical Professional Art Therapist, and Energy/Wellness Coach in private practice in Bethesda, Maryland. Jessica was trained in art therapy and professional counseling at George Washington University where she focused on trauma-informed care through coursework, research, and internships at Children's National Medical Center and Walter Reed National Military Medical Center. Since then, she has worked in the public sector in domestic abuse and military behavioral health. Prior to her work as a psychotherapist, Jessica was a licensed Art Educator for grades K-12, when she first learned about the healing powers of art. Jessica has since crafted a unique service for DC area professionals and military service members/veterans who wish to engage in art therapy, mind-body work, EMDR, and psycho-spiritual healing through creativity and connection.

The Big Tent in field by the Cornucopia Cafe
(3:00- till close of evening Facilitated Art Project sponsored by the Lilly Clinical Innovation team. 
John Magnan, Sculpture and installation artist attended Cinderblocks3 and presented on his cancer and clinical trials community art concept: A Hero’s Journey.  We will continue his work by designing our own blocks for the Hero’s Journey Project.)
3:15-3:30 Kelly Lawman: Open Notes update.

3:30-4:10 Colontown Care Panel: Erika Brown and Abby Bott, Washington DC

4:10-4:30 Lisa Skipper with Mountain Laurel Medical Center, Grantsville
Lisa Skipper – Certified Navigator with MD Health Connection and Project Coordinator with RAEN (Rural Action Enrollment Network) at Mountain Laurel Medical Center in Oakland, MD since 2013.
“I love what I do in assisting, not only our patients, but others from the community in need of health insurance. We go beyond just helping them with enrollment; we offer benefits counseling and education, as well as answering questions in an ever changing insurance world for those in Medicaid and health plans with monthly premiums.”
Married with 2 sons, who are both Volunteer Firefighters with Bittinger VFD.  Lives on the family farm near Bittinger and is a member of St. John’s Lutheran Church at Red House where she currently serves as Council Vice President and on other committees


4:30-5:00 Marsha Goodman-Wood, Washington, DC, singer, songwriter and neuroscientist, will present “Music as Medicine.”
Marsha Goodman-Wood is a DC-based singer/songwriter, music and drama teacher, mom, and former cognitive neuroscientist (BA in Psychology, Columbia University, 1994; MA in Psychology/Cognitive Neuroscience, University of Missouri, 2000). Marsha’s debut solo album Gravity Vacation contains fun original songs about science & how the world works. Marsha performs regularly either solo or with her band, The Positrons at venues and series in the DC/MD/VA area (and occasionally further afield) that offer family entertainment, as well as museums (including the Smithsonian National Air & Space Museum), libraries, schools, fairs and festivals. Website: www.marshagoodmanwood.com

5:00 is the close of the educational conference sessions.

The Walking Gallery Gathers 6:00-10:00pm 
At 6:00 pm we will gather at the Casselman River Bridge for a group shot of The Walking Gallery and the conference attendees.   We will then walk across the historic 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. 
6:15-7:30 Terah Crawford, The Terah Crawford Band is based in Deep Creek Lake Maryland. Combining their love for mountain music with classic rock, outlaw country and just a touch a folk, they’ve created their own style of playing. Check them out all over Garrett County, MD and surrounding areas to enjoy their homegrown Appalachian Folk Rock ways.

7:30-8:15 Ross Martin, MD will sing several of his songs focused on healthcare. 
8:15-9:15 Marsh Goodman-Wood will sing in honor of those we lost .
9:15 the final performers will be fire dancers Christopher Closson and physical therapist and fire dancer Aaron Smith.

                                                           
Thank you to our Gold Level Cinderblocks Sponsor:




Conference Day 3
May 20, 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 close at noon.   Little Crossings will also host juried artists and local food venders for an Artisan and Epicurean Faire on this day.  
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