Inside the Mirror

August 19, 2012, 8:37 am

≫ Next: The Walking Gallery: Walking around the World

When I was young, I had a compulsion to find out how things worked. This usually led to creative destruction. I know exactly how a music box works because I dismantled my jewelry box, tossing out the painted paste board, velveteen lining and plastic ballerina.

The important part was inside. I loved the little brass machine that wound with a key. I loved to listen to the metallic plinks as the metal keys were forced upon the raised nodules of the rotating barrel. I cherished the simple elegance hidden for years by the bulky form of the jewelry box. It was liberating.

But my deconstruction did not stop with the music box. I also wanted to see inside a mirror. Mirrors were amazing things that created a world in reverse. One day I ripped the brown paper backing off of my mirror. Then I scraped at the black paint on the back of the glass. My scraping revealed a silver expanse. I scraped at that layer and reached clear transparent glass.

I was disappointed. I could not see inside the mirror. I could not see that most amazing space between the darkness and the glass. I knew that was where the magic happened. I knew another world lived inside the glass.

Have you met Melinda Watman? She knows it feels to be between worlds and stuck within the looking glass.

Inside the Mirror a jacket for Melinda Watman

This is her jacket "Inside the Mirror."

In this painting there are two Melinda's. There is the Melinda buried within folds of flesh and the Melinda that lived inside the looking glass. Inside the darkened glass a thin healthy Melinda waited. She waited to get out. She waited for the year to pass and the time to come when the worlds would reverse.

Melinda spent years trying unsuccessfully to reach her goal weight. She then began to research bariatric surgery. She had a background in nursing, but she wanted to be aware of all the ramifications of her decision. She dove into social media and discussed her options on chat boards. During her research she was amazed that there were few unbiased sites that would discuss the pros and cons of surgery.

Melinda is now the woman who once was tapped within the glass. Her body is lean and healthy, as is her mind. She has since founded a company called BSCG (Bariatric Surgery Consulting Group.) She hopes to help others come to a decision about what is the right choice for them.

Welcome to the Gallery Melinda.

↧

The Walking Gallery: Walking around the World

August 23, 2012, 8:07 pm

≫ Next: Invasion of the C.Diff

≪ Previous: Inside the Mirror

Though The Walking Gallery is Walking Around the World, based on current information we have no one walking in 20 states in the US. I say let’s change that! So if you know folks who should join us in the states listed below, please let me know.

There are currently 28 jacket in my to-do pile and hopefully some of them will be from states that do not have walkers, but if you know of excellent walkers or potential gallery artists please send them my way!

Also we only have walkers in 7 countries right now; I bet we can improve on that.

Thank you to the Walking Gallery on Medstartr, that money funded patient attendees to The Walking Gallery gathering in Kansas City and supported continued spread of this worthy advocacy!

The artists of the gallery:

1. Regina Holliday 198 jackets

2. Isaac Holliday 6 yrs, 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 4 jackets

8. Michele Banks 1 jacket

9. Megan Mitchell 15 yrs 1 jacket

10. Robert J. Filley 3 jackets

11. Anita Samarth 1 jacket

12. Mary Welch Higgins 2 jackets

13. Richard Sachs 1 jacket

14. Jonah Daniel 5yrs 1 jacket

15. Fred Trotter 1 jacket

16. Leela 7yrs 1 jacket
17. Gayle Schrier Smith, 1 Jacket

DC Health Week HealthCamp - Walking Gallery 13160

Australia

Heather Leslie, Melbourne

Louise Schaper, Melbourne

Sam Bruinewoud, Melbourne

Carolyn Der Vartanian, Sydney, NSW

Michelle F Davis, Sydney, NSW

Lissa Smith, Sydney, NSW

Sanya Turalj, Sydney, NSW
Kath Mazella, Perth

Canada

Collin Hung, Toronto

Colleen Young, Winnipeg
Carolyn Thomas, Victoria, BC

Natrice Rese, Timmins, Ontario

Greece

Kathi Apostolidis

France

Gangadhar Sulkunte

Senegal

Kevin Ado

United Kingdom
Andrew Spong, Rustington, West Sussex

United States of America: Districts/Commonwealths and Territories

1. Alabama

2. Alaska

3. Arizona

4. Arkansas

5. California

Al Nikolai Kirienko- Berkley
Jamie Inman, Hollister

Alan Greene, San Francisco

Matthew Holt, San Francisco

Katherine Arbansin, San Francisco

Karen Herzog, San Francisco

Manny Hernandez, San Francisco

Danielle Cass, San Francisco

Roni Zeiger, San Francisco

Amy Tenderich, SanFrancisco

Julia Hallisy, San Francisco

Alex Albin, Monterey

Christian Liu, Los Angeles
Liza Bernstein, Los Angelos

Matthew Listiak, Los Angeles
Martine Ehrenclou, Los Angeles

Gregg Masters, San Diego

Katerina Jackson-Suchkova, San Diego

Becca Price, San Diego

Charles Denham, Palo Alto
Larry Chu, Palo Alto

Kristen Andrews, Monrovia
Amanda Greene, Culver City
Jan Oldenburg,

6. Colorado

Kathy Nicholls, Pueblo

Ben Miller, Denver
Erika Hanson Brown, Denver
Bart Windrum, Boulder

7. Connecticut
Matthew Browning

8. Delaware

9.

District of Columbia/Greater Washington Area

Valarie Barnes

Ann Bartlett

Karen E. Blair

Siobhan Champ-Blackwell

Jodi Daniel

Jonah Daniel

Ladd Everitt

Lisa Emrich

Ted Eytan

Robert Filey

Susannah Fox

Marsha Goodman-Wood

David Hale

Mary Welch Higgins

Isaac Holliday

Freddie Holliday

Regina Holliday

Linsey Hoggle

Alisa Hughley

Karen Hwang
Jess Jacobs

Leroy Jones

Nicole Kemper

Morgan Stanley-Kominers

Christine Kraft

Marilyn Langfeld

Howard Liebers

Kym Martin

Ross Martin

Courtney Mazza
Deven McGraw
Jake Miles-McLean

Robin Miles-Mclean

Ben Merrion

Megan Mitchell
Farzad Mostashari

John O’Brien

Todd Park

Elizabeth Prevou

Abigail Pritchard

Anita Samarth

Josh Seidman

Emily Stewart

Mary Anne Sterling

Marie-Michelle Strah

Lygeia Ricciardi

Leela

Liz Sherer

Chris Timm
Teresa Titus-Howard

Cindy Throop

Carol Torgan

Melinda Whatman

Claudia Williams

Trenor Williams

Eunita Winkey

William Wolf

Whitney Zatzkin

DC Health Week HealthCamp - Walking Gallery 13297

10. Florida

Chiara Bell, Orlando

Carolyn Capern, Orlando

11. Georgia

Donna Scott, Atlanta

12. Hawaii

13. Idaho

14. Illinois

Michael Millenson, Chicago

Karen Curtiss, Chicago

Amanda Michelle Jones, Chicago

JoAnn Klinedinst, Chicago

15. Indiana

Michele Behme, Indianapolis

16. Iowa

17. Kansas
Ryan Neuhofel, Lawrence
Jari Holland Buck, Overland Park

18. Kentucky

Ted Smith, Louisville

19. Louisiana
Catherine Fairchild, Baton Rouge

20. Maine

Andrea Littlefield, Bangor

21. Maryland

Maumi JC Chatterton, Baltimore

Mark Scrimshire, Baltimore

Dennis Wagner, Baltimore
Peter Levin, Silver SPring

Kait B. Roe, Baltimore

22. Massachusetts

Keith Boone, Boston

Abigail Boone, Boston

Alex Drane, Boston

Nate Osit, Boston

Janice McCallum, Boston

David Harlow, Boston

John Kruger, Boston

Don Fluckinger, Boston
Alicia Staley, Boston
Karen MacDonald, Boston

23. Michigan

24. Minnesota

Gary Oftedahl, Minneapolis

Gail Zahtz, Minneappolis

Victor Montori, Rochester
Steven Baker, Fountain

25. Mississippi

26. Missouri

Joe Ketcherside: Kansas City

Tobias Gilk, Kansas City

David Sides, Kansas City

Clay Patterson, Kansas City

Kourtney Govro, Kansas City
Ann Becker-Schutte, Kansas City
Brian Carter, Kansas City

27. Montana

28. Nebraska

29. Nevada

Jen McCabe, Las Vegas

30. New Hampshire
Dave deBronkart

31. New Jersey

Ileana Balcu, Woodbridge

John Phelan, Princeton

Mindy Schwartz-Brown

32. New Mexico

33. New York

Trisha Torrey, Baldwinsville
Steven Davidson, Brooklyn

Wen Dombrowski, NY

Tiffany Petterson, NY

Jason Bhan, NY

Craig Lipset,NY

Alex Fair, NY

Paulo Machado, NY

Amy Romano, NY

Dale Ann Micalizzi, Schenectady
Emily Hackel, NY
Esther Dyson, NY

34. North Carolina

Richard Payne, Durham

Lisa Fields, Greensborro

Sarah E. Kucharski, Canton

Liza Sisler, Raleigh-Durham

Andre Blackman, Raleigh-Durham
Alice Hughley, Durham

35. North Dakota

36. Ohio

Sunnie Southern, Cincinnati

Michael Seid, Cincinnati

37. Oklahoma

38. Oregon

Lizzie Dunklee, Eugene
Amy Birney, Eugene

Brian Ahier, Portland

Sue Woods, Portland

39. Pennsylvania

David Lee Scher, Harrisburg

Jenny Pettit, Philadelphia

Jane Sarasohn-Kahn, Philadelphia

Mary Ellen Mannix

Koreen Olbrish, Philadelphia

Teresa Younkin, Scranton
Kate Cartwright-Knodel, Yardley

40. Puerto Rico

Antonio Fernandez

41. Rhode Island

Pat Mastors, Providence

42. South Carolina

Helen Haskell, Columbia

43. South Dakota

44. Tennessee

Linda Stotsky, Nashville

45. Texas

Fred Trotter, Houston

Joleen Chambers, Dallas

Laura Slayton, Austin
Erin Gilmer, Austin

46. Utah

Michelle Litchman, Salt lake City

47. Vermont

48. Virginia

Josh Rubin, Arlington
Casey Quinlan-Richmond

David Collins, Richmond

Richard Upton, Richmond

Angela Lynn- Charlottesville

Heidi Sitcov, Springfield
Gayle Schrier Smith, Richmond

49. Washington

Wendy Sue Swanson, Seattle

Sherry Reynolds, Seattle

Leah Marcotte, Seattle

50. West Virginia

51. Wisconsin

52. Wyoming

↧

Invasion of the C.Diff

August 25, 2012, 7:51 am

≫ Next: Calling all Patient Advocates

≪ Previous: The Walking Gallery: Walking around the World

I often do things that frustrate my children. Whether is singing loudly off-key or ruffling their hair in front of their friends, my response to their complaint is always the same. “When I stop doing this you will know the pod people got me.” I say this even though the children have no clue what the pod people are. I say this even though in my deepest heart the pod people scare me.

Of all the films I saw as a child, two frightened me the most. I am not talking about the surprised jump scare that is staple of the slasher movie. I am talking about the kind of intellectual scare that keeps you up at night. The kind of scare that makes you plot and plan what you would do if you found yourself stuck within this horrific story.

“Invaders from Mars” released in 1953 was a film you would not want to be stuck in. The story followed a young boy who sees an object crash from the sky. His father goes to investigate and comes back different. He no longer acts like his father. The boy sees more and more of the townsfolk change. It is terrifying; no one is admitting that people are being replaced with doppelgangers.

The next horror epic etched within my mind was “Invasion ofthe Body Snatchers” 1956 and 1978. In this tale people insist that imposters have replace their loved ones but the main character does not want to believe them at first. He then finds out that giant plant pods contain alien replicas of earthlings. These pod people replace and destroy their human counterparts.

Both films depict the body human being invaded and destroyed, first as an individual then as a species. Which brings me to Pat Mastors and her jacket “Invasion of the C. Diff.”

"Invasion of the C. Diff." for Pat Mastors

Pat is an amazing advocate and speaker. She is a photogenic beauty who was a television reporter before entering the world of advocacy. In 2007, her whole world changed due to the invasion of a spore.

Have you heard of C. Difficile? For the average Joe-citizen the answer is no. Many people have heard of super-bugs and perhaps MRSA, but c. diff is often left out the media limelight. I learned about it a few years ago when I was designing a painting. I was talking to environmental specialist who works in a hospital. He told me of all the nasty infection agents, he was most afraid of c.diff in the spore stage. It was so hard to kill and most of his cleaning agents would not destroy the shell of this invader.

In about 3% of healthy adults and 70% of healthy infants c.diff is a naturally occurring bacteria in the intestines. Its growth is kept in check by other bacteria. When patients take an antibiotic, the bacteria balance is upset and many of the residing bacteria die. If a patient ingests c.diff spores while they lack the necessary competing bacteria the c.diif bacteria will experience explosive growth. The patient will experience flu-like symptoms and diarrhea. The infection can grow to the point that patient is in anguish and is estimated to result in death in 25% of the elderly frail who contract the infection.

Pat Mastors knows all of this because in 2007 her father fell. He got up in the night and fell down the stairs. He was injured in the fall and needed surgery performed on his neck. He acquired c. diff and died six months later.

Pat was outraged. No one seemed to know about c.diff and it was so very dangerous. She began to blog about it. She lay awake at night and pondered what could she do to protect people. She created a plastic sleeve to cover TV remotes in hospitals. The surface of the TV remote is one of the leading culprits in infection. She tried to talk with hospital staff about needed safeguards to prevent hospital-acquired infections.

But like the plot of a scary science fiction movie people were not listening. They ignored this danger from within and the idea that people were being colonized. Pat was alone in her knowledge. So within Pat’s painting, I place her staring in worry at a nameless woman in her pod. Pat knows what will happen when spores descend.

Not long ago Pat showed me the Patient Pod she created. She has learned the lesson of her enemy and knows the strength of an impervious shell. She created a plastic sleeve that mounts on a hospital bedrail with a special clip. Here you can put your personal things. A photo of you and your family, your cell phone and some plastic sleeves for your remote. You can keep your things safe and clean. You can wash the pod off with a bleach solution that kills spores.

There are only two ways to fight c. diff: keep surfaces clean and limit overuse of antibiotics. Pat is doing all she can as a patient advocate to save lives by providing clean surfaces. Pat listed herproject on Medstarter. I urge you to fund it. She is saving lives and spreading awareness. I will support her in her mission and if I ever stop doing that you will know …the pod people got me.

↧

Calling all Patient Advocates

August 28, 2012, 5:24 am

≫ Next: The Partnership with Patients Agenda

≪ Previous: Invasion of the C.Diff

Calling all Patient Advocates!!!

Want to come to the Partnership with Patients Summit in KC September 21-23, 2012? Need help with funding to get there? The Society for Participatory Medicine a 501c3 non-profit is creating a scholarship fund and Pat Salber, MD decided to help. She is currently launching a crowdfunding site called Health Tech Hatch that will enter public beta on Sept. 4. It is currently in private beta and people are already pledging to support the fund. She writes about the program here.

You can register for the Partnership With Patients conference here.

Please spread the word! This is a conference that is being designed with patients in full partnership with providers and venders and I really hope you can attend.

So to make this super clear (with a little help from the amazing Trisha Torrey on editing)

Are you a patient who would like to apply for a travel scholarship to the Partnership With Patients Summit?

The Society of Participatory Medicine will be awarding 10 scholarships of $500 each. Here are details and how to apply:

Write a (no more than) 500 word essay of why you should be granted a travel scholarship to attend the Partnership With Patients Summit. Why should you be the person who receives the scholarship? What can you offer to the people you connect with? What can they offer you? What do you hope to do with what you learn?

If you have your own blog, then post your essay on your blog, and tweet the link to Regina Holliday ( @ReginaHolliday) or post the link on her Facebook page (http://www.facebook.com/regina.holliday )

If you do not have your own blog, then send the post, contained in an email (not attached) to Regina at reggieart123@yahoo.com She will post your essay here on the Partnership with Patients website.

Deadline for submission is midnight, pacific time, September 8, 2012.

The essays will be reviewed by the committee at the Society for Participatory Medicine and winners will be notified by September 16.

Good luck!

Questions? Contact Regina Holliday at Partnership with Patients

↧

The Partnership with Patients Agenda

August 28, 2012, 9:48 pm

≫ Next: Bone Black

≪ Previous: Calling all Patient Advocates

The Partnership With Patients Summit:

The first patient summit in Kansas City supported by crowd-funding, designed using social media with art by Regina Holliday

Patients, Providers and Health Professional from all over the United States will convene in Kansas City, Missouri, from September 21through September 23 to present speeches on Health Information Technology, Patient Safety and Quality and Media and the Message of Patient Advocacy.

For too long patient input has been an afterthought in health policy.

We are changing that.

This summit focuses on education, networking and partnership—of patients, providers, vendors and explains the relationship between government policy and patient advocacy. Conference attendee’s will suggest ways to promote patient participation, learn about the effect of change and growth in the tech sector on patient advocacy, and use social media to further the voice of the patient in national health policy.

What makes this a must attend event?

The Partnership with Patients Summit is organized completely using the free tools of social media and by a loose confederation of advocates, providers and vendors volunteering their time.

The registration page is on eventbrite: http://partnershipwithpatients.eventbrite.com/

Partnership With Patients partially crowd-funded by both Medstartr and Health Tech Hatch

The non-profit partner is the Society for Participatory Medicine who is helping fund patient travel scholarships, http://participatorymedicine.org/about/donations/

Internationally recognized patient speakers such as Dave DeBronkart, Trisha Torrey and ReginaHolliday will be presenting.

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group

# # # # #

Thank you to our Sponsors!

Event promotion, Patient Travel Funding and Sponsoring Lunch Saturday

Thank you all of our other sponsors

Friday 21, The Walking Gallery: 6:00pm to 8:00pm

To begin this conference The WalkingGallery gathers on Friday night Sept 21, Kansas City Marriott Downtown 200 West 12th Street, Kansas City, MO 64105 light refreshments will be served

Twitter hashtag: #TheWalkingGallery

The patient voice — in the form of the Walking Gallery of Healthcare art event —will arrive in Kansas City as walkers from throughout the nation will display the stories painted on their backs of business jackets. Internationally recognized patient rights art advocate Regina Holliday will debut her latest works.

"It will be exciting to see so many new members of the Walking Gallery gather for this event. At this point, we have 160 walkers around world representing the patient view within medicine. I am proud to be a member of the Walking Gallery," said Holliday, the Washington, D.C.-based patient rights arts advocate.

Saturday 22, Registration begins at 7:30am

Cerner will host the Summit Saturday and Sunday at their educational facility at Cerner Educational Building 6711 NE Birmingham Rd Kansas City, MO 64117

Coffee and breakfast will be served in the exhibition area

Saturday Morning 8:00 am in room A (this room we will record.)

Panel presentation by Society for Participatory medicine 8:30-9:10

A series of 4x4 presentations from sponsors 9:15-9:45

Explain dividing into three tracks

HIT and Policy

Session 1

10:00-11:45 am first group of 25 patients go on shuttles to experience theatre on Cerner Campus

Session 2

12:00-1:45 pm second group of 25 patients go on shuttles to experience theatre on Cerner Campus

Patient Quality and Safety Room A

Session 1

10:00-10:45: Pat Mastors and Partnership with/for Patients

Session 2

11:00-11:45: Patient Speakers and SpeakerLink Panel: Trisha Torrey, Dave DeBronkart, Tiffany Peterson, Kait B Roe

Media and the Message Room B

(Social Media/Activism/Public Speaking)

Session 1 Bunny Ellerin on media

10:00-10:45

Session 2 Social Media speaker TBA

11:00-11:45

Lunch

11:45-12:15

HIT and Policy Room C

Session 3

2:00-2:45 Roy Foster: HIT and Meaningful Use 101

Session 4

3:00-3:45 HIT Pannel: What does tech have to do with it? Rosh Rubin, Joe Ketcherside and Jim Hansen

Patient Quality and Safety Room A

Session 3

12:30- 1:45 Device Safety Panel: Tobia Gilk on MRI, Joleen Chambers on Implantable Devices

Session 4

2:00-2:45 Ann Becker-Schutte, PhD and Bart Windrum on Hospice and End of Life

Session 5

3:00-3:45 Jari Holland Buck on Patient Safety

Media and the Message Room B

Session 3

12:30 -1:45 W. Ryan Neuhofel, DO, MPH: Doctors and Social Media

Session 4

2:00-2:45 Lisa Fields: Rocking the Power Point

Session 5

3:00-3:45 Michael Millenson on new media meets traditional media

Closing Remarks in Room A

4:00-5:00

Dinner Served 5:15-6:15

Ignite-style speeches, (20 slides 5 minutes) begin 6:30-8:00

Shuttle back to Marriott 8:15

Sunday Registration begins at 7:30 am Breakfast in exhibition space

HealthCamp, an unconference will be held on Sept 23rd in Kansas City as part of the Partnership with Patients summit. Mark your calendars for the weekend of September 21st -23rd. HealthCamp will cap off an exciting weekend at Cerner’s educational facility in Kansas City. Continuing the innovation learning approach from the previous days, patients, physicians, nurses, technologists, health system and policy leaders, payers and suppliers will create session topics the day of the event focused on "Empowering Patient Engagement." The unconference process and the Center for Total Health itself will create a flexible and energetic collaborative environment for participants. Check out the HealthCamp Foundation home page for other HealthCamp information.

Greeting: 8:00 in room A

Break into unconference sessions 9:00 am/patient speaker boot-camp

Session rooms B,C,D,E,F,

Patient Speaker Boot camp stays in room A to record speeches

9:00 am to 12:00

Grid times for Unconference

9:00am -9:45

10:00-10:45

11:00- 11:45

12:00- 12:45 Lunch and good byes to early departures Exhibition space

1:00pm - 1:45

2:00-2:45 Wrap up in Room A

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group

For more information about the summit and to receive media access with press credentials, contact @ReginaHolliday on twitter or 202-441-9664

About Partnership With Patients

http://partnershipwithpatients.com/home/

This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy. You can read more about this on our website

↧

Bone Black

September 1, 2012, 8:09 am

≫ Next: Essays for Partnership With Patients Travel Fund

≪ Previous: The Partnership with Patients Agenda

Ashes.

They have always been part of our lives. We sang of them in our nursery songs. We heard our mothers speak of a princess who labored in cinders and dreamed of a prince. And as we grew, ash became less magical and more mundane. It was in our science lessons. We snickered to hear that messy wood ash was needed to make soap. That seemed so wrong, a contradiction terms.

The years past and I found ash was needed to make so many things. Cinder blocks are called cinder blocks because they contain ash. The ash makes them strong yet light: a perfect building material. And I learned about charcoal. I learned the silky beauty of writing with a charred vine or the compressed stick.

The years past and I grew beyond drawing with charcoal and focused on paint. One day I found a new black paint that quickly became my favorite. The color was so deep and dark. You could fall into it and never return. I wondered at the color’s name: Bone Black. I thought it a joke, for bones are off-white like ivory. Bones are the color of old lace… unless you burn them.

This is “Bone Black” a jacket for Catherine Fairchild. We were introduced to each other by Susannah Fox who interviewed Catherine about rare disease. She mailed me this jacket months ago, but time had passed and yet the jacket hung within my closet. It hung on its hanger, the color of bone beside jacket after jacket in black.

As I learned more about Catherine and her story I could see why she would pick this color, this jacket. Catherine is the mother of two wonderful children: Ella and Billy.

Ella was already a rosy-cheeked toddler when Billy was born in 2002. The family was happy that Ella would soon have a baby brother. Catherine had a routine mid-term sonogram during her pregnancy and noticed the report contained CPC codes. She did not know what that represented so like any good e-patient she registered for 48-hour JAMA subscription. She found articles that explained those codes were soft markers for many developmental disorders. She then went through a more thorough sonogram that was inconclusive.

As she neared term Catherine grew concerned that the pregnancy was not doing well. He was not moving, as he should. Catherine had another sonogram and was told that she would need a C-section immediately. The placenta was bad, amniotic fluid was gone and without intervention he would not survive.

Billy was 5lbs at birth and within two weeks birthmarks appeared on his back. She told her pediatrician about the café-au-lait birthmarks. Could it be the sign of some type of disorder? The doctor brushed off her concerns. BB continued to grow and meet his milestones, but at three years his coordination was sufficiently poor that the special education teacher at school said Billy should see a pediatric neurologist.

Again, tests were inconclusive.

A year later, four year old Billy played really hard with a group of boys and then began to limp. He had a occupational therapy appointment the next day and the therapist concurred with Catherine’s worries, there was something wrong with Billy. He was x-rayed to determine if he broke a bone.

The x-rays determined Billy had lesions all over his bones.

Billy has MAS (McCune-Albright Syndrome) a rare genetic disease estimated to effect between 1 in 100,000 to 1 in 1,000,000. Characteristics of the disease include café-au-lait marks on the skin, and deformities in the bone known as fibrous dysplasia, and endocrine issues. Many individuals with this disease suffer multiple bone breaks. Billy has had several major orthopedic surgeries to address the problems with his bones.

Billy is doing well, though he spends a lot of time in a wheel chair. He loves legos and enjoys school. His mother supports him in all his endeavors.

I painted her gown the color of bone. She stands tall and defiant as wind whips at her gown. Ella clings to her back and Billy is in her arms. Billy holds two oversize BB’s as though they are a baby’s rattle. Catherine holds scrolls that represent the law and information. She is e: empowered, engaged, and expert at the disease she is fighting. No wind can lift her off her mooring. She fights for her BB.

I am glad to know Catherine. I am happy to paint her thus, beautiful and defiant. I used very little of my favorite black color in this painting. Her colors are her own. Bone black is created when bone is burnt at a low temperature, to get white the temperature must be very high. The crucible purifies the color.

Yes, I think I know why Catherine sent me this jacket in this color.

↧

Essays for Partnership With Patients Travel Fund

September 8, 2012, 6:46 am

≫ Next: Cerner on September 11th

≪ Previous: Bone Black

Today is the deadline for the Patient Travel Fund Submissions for Partnership WIth Patients Summit in DC. One requirement of submission was to post the essays onto a blog, so I am posting these here:

From Evelyn McKnight

Thank you for the opportunity to apply for a travel scholarship to the upcoming Partnership for Patients Summit. I welcome the chance to attend and participate in the Summit.

Because of my work, starting in 2007, which is centered in patient advocacy with a concentration on prevention of outbreaks of blood-borne pathogens in medical facilities, I believe I am the ideal candidate for a travel scholarship. Thank you in advance for your consideration.

You ask a couple important questions—what I can offer to the Summit and what the Summit can offer back to me.

Hepatitis Outbreaks’ National Organizations for Reform (HONOReform) Foundation, our national organization based in Nebraska and active on Capitol Hill, has become a “gathering place” for men and women throughout the United States who have been affected by outbreaks of hepatitis C. I hear from these victims frequently. Personally and through HONOReform, I try to do all I can to be helpful. As someone who was infected with hepatitis C while receiving healthcare, I understand. From being there and from watching and helping others, I have developed a good understanding of the process of grieving and getting better.

Late last year, we added two patient advocates to our board of directors. I am in communication with more than a dozen patient advocates, all of whom urge us to continue working on safeguarding the medical injection practice. In addition to sharing my story and what I’ve learned along the way, I welcome the chance to offer is a connection to the many advocates whom I work alongside…as a way to develop critical mass among all patient advocates.

Empowerment through thorough messaging is important to a grass roots organization like ours. I have no doubt the PFP Summit will help me in a variety of ways. But comparing notes on messaging and outreach is an area that is on my mind right now. I believe this will be part of what the PFP Summit will offer back to me. I look forward to meeting more advocates and learning how they spread the word—and sharing how HONOReform remains active in this way.

I am glad to be part of the developing PFP “Patient and Family Engagement Network” and the other groups and committees of which I’m a part. But I am especially interested in being part of the upcoming PFP Summit, and I ask you to please consider me for the travel scholarship.

In the meantime, I welcome the chance to detail more of my work at HONOReform—the ways I strive to continue to make a difference in preventing healthcare associated infection.

I would be honored to be included. Thank you for all you do. Please contact me anytime.

Evelyn V. McKnight, President
HONOReform/HONOReform Foundation

evelyn@HONOReform.org
www.HONOReform.org
www.OneandOnlyCampaign.org
www.twitter.com/honoreform
Facebook: HONOReform
www.ANeverEvent.com

Working to ensure that every medical injection is a safe one

The second essay is from Winnie Tobin:

I am writing to request a travel scholarship for the Partnership with Patients Summit in Kansas City. I have been the Communications Director at MITSS (Medically Induced Trauma Support Services) for the past 9 years. MITSS is a non-profit headquartered just outside of Boston, Massachusetts, whose mission is to Support Healing and Restore Hope to patients, families, and clinicians who have been impacted by errors and adverse medical events. I am also a family member who has stood by helplessly as a loved one required two brain surgeries due to a preventable surgical site infection and an inaccurate lab report.

I came into the patient safety and quality arena quite by chance back in 2003 when I met Linda Kenney. At the time, Linda was just starting MITSS, and a mutual friend suggested that in my “free time,” I could help Linda “stuff some envelopes.” My children were transitioning to middle school, and I was pondering my next steps, unsure about what the future would hold. I had majored in business/marketing in college and worked in the legal field for 10+ years, but now I was at home raising my two sons. Linda’s story of a near fatal anesthesia block resonated with me on a profound level, and, personally, we connected immediately. The rest, as they say, is history.

These past nine years have been an extraordinary journey, though not always easy. Many times the barriers seemed impenetrable -- too deeply entrenched in a healthcare system not accustomed to listening to nor incorporating the voice of its patients. But, with persistence and perseverance, the MITSS message of supporting everyone involved in an adverse event has picked up traction not only locally and nationally, but internationally as well. It is this firsthand experience -- what has worked well, what didn’t, and how it all unfolded -- that I would bring to the Summit. I have acquired and sharpened the skills (writing, editing, public speaking, social media, program production, event planning, website development, etc.) that patient advocates need to be effective.

The most important things, though, that I would bring to the Summit are my ability to listen and eagerness to connect with others working in this space. I have spoken with hundreds of people who have been injured by adverse events. I hear their pain, frustration, and isolation on a daily basis. We are always looking for additional resources to offer our clients, and by attending the Summit, I would hope to expand our network. I know, too, that there is power in numbers and am excited about coming together to form a collective patient voice.

What I am hoping to gain from attending the Summit is simply to learn, and this would be an extraordinary opportunity for me to do so.

As MITSS strives to provide our services free of charge to our clients, we do not have a travel budget for ourselves. Therefore, I would need assistance with travel costs in order to attend the Summit. Thank you.

Winnie Tobin

wtobin@mitss.org

And from Nikolai Kirienko

Why should you be the person who receives the scholarship?

On a long, and often solitary patient journey, the greatest relief I've found amidst the losses of a relentless chronic illness are the riches of empathy and friendship I've shared with fellow patient voyagers who 'get it'. (In solidarity with those in the disabled and patient communities who also struggle to afford these events on fixed income, I would like to be considered for this scholarship only if it would otherwise go left unclaimed.)

What can you offer to the people you connect with?

Living with a chronic illness, and coping with the realities of invisible symptoms and routine daily setbacks can be a lonely and isolating experience. With thousands of hours of experience navigating the extremes of life in the hospital, I hope I can offer the understanding of someone who has been, and is very much still 'there'; on an epic journey through high cost, high risk chronic care. The value I hope to offer is the empathy and encouragement of someone who understands, from experience.

What can they offer you?

A community of folks committed to the healing possibilities of patient empowerment through expanded digital participation in health is a uniquely supportive environment that I look especially forward to experiencing in Kansas City. I hope to learn from the advocacy and experience of other patients who have faced overcome many of the same challenges I'm still attempting to master.

What do you hope to do with what you learn?

I hope to improve my ability to communicate, especially around the many issues for which patients must collaborate, if we would like to see our agenda represented, from our clinical appointments to national health IT policy.

Thank you again for organizing this wonderful event, and for your consideration of this patient travel scholarship to Partnership with Patients.

Sincerely,

Nikolai Kirienko

↧

Cerner on September 11th

September 11, 2012, 6:47 am

≫ Next: Partnership WITH Patients

≪ Previous: Essays for Partnership With Patients Travel Fund

I often paint at medical conferences in the back of ballrooms or on the exhibition floor. When I was painting at the HISA conference in Australia, a lovely woman came over to my easel. She looked at my work and noticed I was painting in the Cerner booth. She told me she had a story she wanted share with me about a Cerner conference she attended many years before. That story was so powerful I asked if I could paint it on her jacket so she could join The Walking Gallery. She said yes.

This is “The Right Thing” a jacket for Lissa.

On September 11^th, 2001 Lissa was at a Cerner health conference in Kansas City entitled “Crossing the Chasm.” It was a typical conference day and sessions began early. Doctors and nurses from all over the US were there. As the morning progressed word spread through the room that something horrible had happened in New York. Caregivers from the New York area began to call airlines trying to fly back to help. Quickly they and the folks at Cerner found out all flights were grounded.

Then the leadership at Cerner contacted a bus company and chartered buses to drive attendees back to New York. They announced that the buses would be there soon and anyone who wanted to get back could return home in this fashion.

Next they must decide what to do. The room was full of attendees and there were speakers prepared to speak; yet at the same moment tragedy was unfolding. Cerner decided the conference must continue so they set up a screen showing the Twin Towers as speakers spoke of crossing the quality chasm.

Can you imagine that? Right beside a speaker addressing the future of medicine and the chasm in care, a building burned and lives were extinguished in real time. This was such a powerful moment. This is the heart of the matter. When we talk of death at medical conferences it is often hidden behind statistics and bar charts and does not have the visceral impact of life destroyed before our very eyes.

Yesterday, I had the privilege of hearing Clay Patterson from Cerner speak as part of a vender panel at HHS. He did not tell us about the newest module available on a Cerner system. He told us about the challenging care and poor communication his family experienced before his grandmother’s death.

In less than two weeks Cerner will again host a conference in Kansas City in September. It will be the Partnership with Patients Summit. We will meet there and discuss the chasm of care with doctors, venders, nurses and patients. And I hope to see some of you there. I hope to hold you in my arms and remember all of those we have lost.

People have asked me, “How did you get Cerner to host this?” I responded, “I asked and they said yes.” It was the right thing to do.

↧

Partnership WITH Patients

September 19, 2012, 6:25 am

≫ Next: Be Opened

≪ Previous: Cerner on September 11th

The Partnership with Patients Summit Sept 21-23:
Kansas City Here we come!

The conference hashtag is #cinderblocks on twitter

Friday 21, The Walking Gallery: 6:00pm to 8:00pm

To begin this conference The WalkingGallery gathers on Friday night Sept 21, Kansas City Marriott Downtown 200 West 12th Street, Kansas City, MO 64105 light refreshments will be served

Twitter hashtag: #TheWalkingGallery

After gathering at the Marriott we will attend the Plaza Art Festival at 4750 Broadway, Kansas City, Missouri 64112 in our jackets and spread the word about patient engagement.

Shuttle to Riverport facility leaves Mariott 7:00 am

Saturday 22, Registration begins at 7:30am

Cerner will host the Summit Saturday and Sunday at their educational facility at Cerner Educational Building 6711 NE Birmingham Rd Kansas City, MO 64117

Coffee and breakfast will be served in the exhibition area

Saturday Morning 8:00 am in room A (this room we will record.)

8:00 Opening Comments: Regina Holliday

Regina Holliday is an artist, speaker and author in Washington DC. She writes about the benefits of HIT and timely data access for patients and families. She painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Regina paints and speaks at medical conferences throughout the world. Her work is visual reminder of the patient in the center of any policy debate and technical application. She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Her artwork has been in peer-reviewed journals such as the BMJ and APA journals. She recently wrote a book "The Walking Wall: 73 Cents to the Walking Gallery."

8:30-9:10 The Society of Participatory Medicine

“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one website said.

He received great treatment at Boston’s Beth Israel Deaconess Medical Center. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

An accomplished speaker and writer in his professional life before his illness, today Dave is
actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.

Michael L. Millenson, president of Health Quality Advisors LLC, Highland Park, IL, is a nationally recognized expert on quality of care improvement, patient-centered care and web-based health. He is the author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, and holds an adjunct appointment as the Mervin Shalowitz, M.D. Visiting Scholar at Northwestern University’s Kellogg School of Management. Earlier in his career, he was a health care reporter for the Chicago Tribune, where he was nominated three times for a Pulitzer Prize. National Public Radio called Millenson “in the vanguard of the movement” to measure and improve American medicine. In addition to work in health policy and strategy, Millenson has designed and implemented an Accountability Audit for hospitals, websites to help in consumer quality-of-care decisions and a joint doctor-patient program to improve communication during office visits. As a senior adviser to the Markle Foundation, he helped launch the Connecting for Health interoperability initiative. Prior to starting his own company, Millenson was a principal in the health-care practice of a major human resources consulting firm. Before that, at the Tribune, he was one of the first journalists to write about health policy issues for the general public and was recognized with an Alicia Patterson Foundation Fellowship and other awards. Millenson has written for publications ranging from the British Medical Journal and Health Affairs to The Washington Post, Kaiser Health News and Forbes.com, and he is a contributing editor to The Health Care Blog. He is president-elect of the Society for Participatory Medicine and also serves on the boards of the American Medical Group Foundation, the AHIMA Foundation and the American Journal of Medical Quality.

series of 4x4 presentations from sponsors 9:15-9:45

Intouch Solutions Bunny Ellerin

Bunny has spent the last two decades building healthcare companies and their brands across a number of key sectors: pharma, medtech, HIT, managed care and physician services. Most recently she was CEO of Ellerin Health Media, where she helped clients shape their digital, social and mobile strategies to successfully communicate with physicians and other HCP’s. Prior to running her own company, she was Managing Director at InterbrandHealth, a leading Omnicom-owned global brand consultancy, where she led the Research & Analytics division and spearheaded the firm’s efforts in the digital arena.

Bunny has worked closely with physicians throughout her career, becoming a trusted advisor on both business and clinical initiatives. Upon graduation from graduate school, she managed 14 specialty physician IPA’s (Independent Practice Associations) in oncology, gastroenterology, urology, cardiology and orthopedics, where she negotiated and operated risk –based contracts with leading managed care organizations. She was then recruited her to help some of these same doctors create an educational platform for the dissemination of clinical content. As Executive Vice President of Clinsights (later acquired by PPD, a leading Contract Research Organization), Bunny launched several physician education websites including TCTMD, the first online community for interventional cardiologists. This is where she first witnessed the power of the Internet in influencing physician behavior.

Bunny graduated from Columbia University with a Bachelor of Arts in Political Science. She received her Master of Business Administration from Harvard University.

Pocket Health Joe Ketcherside

Brian Carter: What is a Patient Portal?

What is a PHR?
What is an HIE?
What does Automated Blue Button and #VDTNow mean?

HIT and Policy

Session 1

10:00-11:45 am first group of 25 patients go on shuttles to experience theatre on Cerner Campus

Session 2

12:00-1:45 pm second group of 25 patients go on shuttles to experience theatre on Cerner Campus

Patient Quality and Safety Room A

Session 1

10:00-10:45: Pat Mastors and Partnership with/for Patients

Pat Mastors is a hospital patient advocate and former medical reporter committed to a range of initiatives that effectively put patients at the center of care. Her focus is the engagement of patients and their advocates, a group some medical experts call "the most under-utilized resource in health care".

Pat’s patient advocacy began with the sudden hospitalization of her father in 2005, when a fall down the stairs required surgery. It was an otherwise successful surgery, but complications of a common infection called Clostridium difficile caused his death six months later. As his only daughter, and having acted as his health advocate during his hospitalization, Pat found this a life-changing experience. She launched an informational website about the risk of infection in hospitals, lobbied successfully to pass two patient safety laws in her home state (Rhode Island), and now works with patient and provider groups nationwide toward a common goal of greater patient engagement for better health.

For more than 20 years Pat was a television news anchor and medical reporter at WJAR-TV and WPRI-TV in Providence. Her effectiveness as a speaker and presenter, her passion for patient engagement, plus her genuine empathy for the concerns of both patients and providers, make her uniquely effective at moving people toward common ground.

Pat serves as a patient/family advisor to the U.S. Department of Health and Human Services “Partnership for Patients” Hospital Engagement Networks. She is the "consumer voice" on the HAI reporting steering committee for Rhode Island's State Health Department. She works with the Consumer's Union Safe Patient Project (a branch of Consumer Reports), and is on the Advisory Board to the Small Business Development Center at Johnson, Wales University.

Session 2

11:00-11:45: Patient Speakers and SpeakerLink Panel:

Dave DeBronkart See Above,

Tiffany Peterson is currently a lupus ePatient advocate sharing her experience on life while living with lupus at TiffanyAndLupus and is the founder/community manager of Friends Against Lupus; an informative community of lupus patients, caregivers, and supporters.

She has been an ambassador for the S.L.E. Lupus Foundation for about two years and is currently Chair of their Awareness Committee.

Kait B Roe

Is a fierce patient advocate for patient centered care as found in Mental Health parity and integration into physical care. She has a specialty in LGBTQQI disparity and cultural competence. Kait is known best for her constant reminders that if it is CALLED patient centered, there BETTER be a patient sitting at the table- every table – yes, that one too! She is also known for her love of bacon...

Media and the Message Room B

(Social Media/Activism/Public Speaking)

Session 1 Intouch Solutions on Media 10:00-10:45

Doug Weinbrenner has spent his entire career bridging the gap of health disparities. He spent over a decade on the front lines of patient advocacy working with local, state and national nonprofit organizations and government agencies to better support and strengthen various patient communities; including mental health, HIV/AIDS and rare genetic diseases. In response to fewer patients coming to providers for information and services, Doug lead these various providers to a digital model that responded to and even anticipated patient needs. He continues this work today as Director of Social Media for Intouch Solutions, building bridges among patient communities, disease awareness and therapies.

Session 2

11:00-11:45 Empowering Your Message: The Human Technologies of Speaking and Bringing Your Message Forward

Katherine Cartwright Knodel, speaker and workshop leader, writer, empowerment coach, spiritual director, and transformational training designer, works with groups to help them empower the life and mission of their organizations and with individuals to heal and empower their lives. An ordained Lutheran pastor specializing in transformational ministries, she served congregations for 22 years and continues to preach, teach and consult. She is an instructor for Pennsylvania Diakonia, teaching two courses, Biblical Images of the Life of the Church and Communicating the Gospel, a columnist for the Bucks County Courier Times, and maintains a coaching and healing practice in Bucks County, PA. Her forthcoming collection of poetry and short stories, Claws of Uthurunku: Healing the Feminine will be out later this year and she is working on a new book, Opening the Heart of the Church: Empowering People for Compassion and Authentic Community.She has developed and leads a number of workshops, including Anthropology for the Soul: Excavating the Stories of Your Life and Empowering Church-Empowering Leader, a transformational training design that can be adapted for any spiritual community or organization. She volunteers with the SEPA Chapter of the American Red Cross as a Specialty Volunteer in Spiritual Care. Her poetry and education page, Awakened Spirit,exploring the landscape of poetry, myth, and the fractured-expanding-healing self,can be found on Facebook. She is certified in Transformational Training Design and Empowerment Facilitation through The Empowerment Institute Training Programs.

Lunch

11:45-12:15

HIT and Policy Room C

Session 3

2:00-2:45 Roy Foster: HIT and Meaningful Use 101

Roy Foster comes from a long line of health care consumers. Even before he earned his Bachelors of Arts from Ottawa University he had already had several encounters with the health care system. Roy’s family medical history includes several chronic conditions such as adult diabetes, high blood pressure, congestive heart failure and even some mental disabilities.

Today Roy serves the industry as a passionate believer that empowered consumers and the aggressive advancement in the utilization of health information technology will result in the fundamental changes needed in order for our country and our world to reach its fullest potential.

Roy has spent the last 11 years helping health care organizations implement electronic medical records. The last 3 years he has served as the Executive Director of the Regulatory & Compliance Practice. In this role he led a dynamic of team of experts on health policy and organizational strategy. By the end of 2012, close to 90% of all health care facilities using Cerner’s EMR will be meaningful users. Roy is continuing his mission by taking executive responsibility for Patient Centered Medical Home strategies.

Session 4

3:00-3:45 HIT Panel

Jim Hansen :

"Consumer/PatientExperiencein a Transformed
HIT-EnabledHealth and Health Care System

Jim Hansen serves as Vice President and Executive Director of the Dossia Consortium, a not-for-profit association that brings together major employers - including AT&T, Intel & Walmart - representing over five million employees, dependents and retirees to advance the use health information technology to improve the safety, quality and efficiency of health and health care for all consumers and patients.

Mr. Hansen possesses 30 years of information technology, strategic planning, product development, marketing, operations and finance experience including 20 years within the health care industry. His journey in consumer/patient engagement began as a member of the Health Partners (Minnesota) team that created the innovative Consumer Choice System in 1994. Prior to joining the Dossia Consortium, he was founding President and CEO of CareEntrust, an award-winning not-for-profit employer-sponsored health information exchange (HIE) delivering secure regional health record services for use by both consumer/patients and health care providers.

Mr. Hansen is actively involved with a consumer/patient perspective in a number of national health and health care transformation supporting organizations including the Institute of Medicine (multiple groups), ONC S&I Framework Transitions of Care workgroup, and most recently DirectTrust (a group developing a trust framework for Direct). He was previously a long time working member of the Healthcare Information Technology Standards Panel’s (HITSP) consumer workgroup.

Mr. Hansen holds BS Business Administration (Information Management emphasis) and MBA degrees from the University of Colorado.

Joe Ketcherside: "Where do I put my damn data? Patient Portals and PHRs"

Joe Ketcherside, MD is an experienced medical informaticist and business leader with a strong clinical and industry background. He is the co-founder of Cognovant, Inc., a consumer health informatics company specializing in mobile, personal health record technologies such as their PHR platform, PocketHealth.

He also serves as the CEO of Ketcherside Group, LLC, an independent consultant to health systems and technology companies, providing strategic insight for technology adoption and product development.

Dr. Ketcherside practiced neurosurgery for 11 years in Kansas City, MO in a community practice as well as serving as Chief of Neurosurgery at the University of Missouri - Kansas City. After further education in the Software Architecture Department at UMKC, he left clinical practice to work with Cerner Corp as an engineer, physician executive, and product management director for physician systems. He subsequently worked at TheraDoc, Inc. as Chief Medical Officer and VP for Corporate Strategies.

Dr. Ketcherside then served as Senior VP and CMIO for Methodist Healthcare in Memphis TN, where he led their EMR and CPOE initiatives. He was also the co-director of the Biomedical Informatics Unit of the University of Tennessee Health Sciences Center Clinical and Translational Science Institute, which he helped to create. Following that, he was CMIO at Heartland Health in St. Joseph MO, and the Medical Director for the Lewis and Clark Information Exchange, a regional HIE. In all of these roles, he was responsible for system design, implementation and adoption across the enterprise.

"A Patient-Centered Learning Health System: What Our Health System can Learn from Us"

Josh C. Rubin, JD, MBA, MPH, MPP, is the the Executive Director of the Joseph H. Kanter Family Foundation and Health Legacy Partnership (KFF). Josh brings to KFF not only energy and experience, but an evidenced strong commitment to KFF's mission. In 2009, KFF contracted with Josh's then-employer eHealth Initiative (eHI – a multi-stakeholder Washington-DC based nonprofit organization whose mission is to drive improvements in healthcare quality, safety, and efficiency through information and information technology) to have Josh conduct global research on international uses of electronic health records (EHRs) for outcomes research purposes; research that served as the foundation upon which KFF's international working meeting was developed, in collaboration with The Commonwealth Fund. As Josh learned more about KFF's vision for a Learning Health System (LHS), he not only articulated his belief in KFF's mission, but volunteered hundreds of hours of his time and expertise over to serve as an advisor, to build partnerships and seek out new opportunities for KFF, to conduct research, and to refine and advance KFF’s mission -- before ultimately becoming KFF's Executive Director. Embracing Nelson Mandela's notion that "Many things seem impossible until they are done," Josh is exceptionally committed to doing whatever it takes to surmount any obstacles along the path to effectuating KFF's vision for a national-scale LHS that will advance medical research and patient safety, transform the practice of medicine, and empower clinicians and patients.

Patient Quality and Safety Room A

Session 3

12:30- 1:45 Device Safety Panel

Doctors, nurses, radiographers, medical physicists, these are the credentials you might expect find for MRI safety advocates, but architect? But that's what Tobias Gilk is, and in the past 10 years, he has become one of the industry's most influential voices on issues of safety and protections against preventable accidents.

Going from simply designing MRI suites, to collaborating with clinical and technical experts, to serving on the MRI Safety Committee for the American College of Radiology, Tobias has provided MRI safety training for the Joint Commission, contributed to MRI safety standards published by the ACR, and design standards for the VA, and the Facilities Guidelines Institute. He is an internationally invited speaker and consultant and is another example of how those committed to safety can affect meaningful change.

Joleen Chambers became her brothers' patient advocate after his 9/29/08 failed elbow implant "revision" surgery. (The elbow was originally implanted just four months earlier on 5/19/2008.) She researched and learned that FDA clears implanted medical devices through the 510(k) process that on 7/29/11 the Institute of Medicine reported is "flawed based upon its' legislative foundation". This should not have happened to him. He should be cared for. Changes in federal public policy that she recommend: an implant registry, FDA patient/consumer voting stakeholder rights, device warranty, rescind medical device industry entitlement/pre-emption from state court.

Session 4 Dying At Peace, Dying In Peace: Engaging in a Complete End of Life Conversation
2:00-2:45

Ann Becker-Schutte, PhD is a licensed counseling psychologist practicing in the midtown area of Kansas City, MO. Her goal in therapy is to create a safe, supportive environment for her clients.

She believes that therapy provides several key benefits. The first is the opportunity to explore challenging life issues with a caring, neutral listener–someone whose only agenda is your overall health. Another benefit is the opportunity to explore difficult experiences in a safe setting. Therapy can become a “box” to hold issues that are too painful to explore in other settings. Finally, therapy provides the benefit of an objective outside perspective, which can bring new insight about life’s challenges.

Ann's practice specialties include the intersection of physical & emotional health, grief & loss, and infertility. She firmly believe that our emotional and physical health are strongly related. There is great research supporting this belief. So one of her primary goals in her practice is to create a space for those who are coping with serious or chronic health issues to receive support and gain understanding of how their mind and body affect one another.

Bart Windrum served as his parents’ medical proxy throughout their end-of-life hospitalizations during January 2004 when his mother, after sudden respiratory failure, spent almost three weeks intubated in an ICU, and April-May 2005 when his father self-admitted for pacemaker eligibility testing, medically crashed, and succumbed to nosocomial urinary tract MRSA after it migrated to his bloodstream. The number, frequency, and range of systemic problems Bart’s patient-family experienced served as his impetus to examine why his parents’ demises were far from peaceful for all involved despite advance planning, open conversation, and family cohesion.

Bart describes his 2008 book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization, as a lay person’s root cause analysis of systemic shock and harm (and he notes that patient-families are part of the system). In it he offers guidance for how to advocate when hospitalized and how, from a practical standpoint, to increase our chances of experiencing a peaceful demise—something that most of us say we want and few achieve.

Today Bart focuses primarily on assessing impediments to dying in peace with the goal of increasing the likelihood of overcoming them. His experiences and observations since 04/05 have led Bart to adopt a contrarian’s assessment of the emerging national end of life conversation. Bart’s orientation is that we’re all best served by wide-ranging, candid discussion; apportionment of responsibility; and citizen-centric dying.

3:00-3:45 Jari Holland Buck on Patient Safety

JARI HOLLAND BUCK is a business consultant, trainer and medical layperson who spent seven and a-half months in four hospitals by the side of her critically ill husband. She dealt with thousands of doctors and nurses and almost daily crises. During her husband’s six plus months on full life support, every organ in his body failed, some more than once. And ultimately, a stroke caused by a hospital-acquired infection destroyed the personality and mind of the man she married.

Her book, Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved Ones, described the lessons she learned and used in partnership with the medical community to produce a miracle, her husband’s survival. The book was recognized as the Winner in the “Health Fitness for Family” category of Parent-to-Parent Adding Wisdom Award and a Finalist in the “Health” category of Fresh Voices Book Awards. Her work following her husband’s discharge from the hospital and their ultimate divorce has been focused on helping others avoid the pain and loss both she and her now ex-husband have endured.

Jari’s advocacy work has been acknowledged by the Institute for Healthcare Improvements with a full scholarship to attend the 22nd Annual National Forum on Quality Improvement in Health Care as one of fifty patient activists. She has provide advice to the University of Toledo Patient Advocacy Certificate program and Hospital Stay Handbook is used as one of two textbooks. She also serves as an Advisory Board member for the University of Kansas Medical Center Otolaryngology Department and is currently authoring a series of six articles on patient advocacy for a Health and Human Services publication called, The Best Times. Jari contributes to www.healthy.net,www.whathappensnow.com, www.llewellyn.com, www.bizymoms.com, www.selfgrowth.com, www.disabled-word.com, www.lovinghealing.com, The Story That Must Be Told and was featured in “Ahead of the Curve: Patient Advocate,” US News and World Report, December 11, 2008. She maintains a Twitter account on patient advocacy + new medical findings @ twitter.com/JariHollandBuck.

Media and the Message Room B

Session 3

12:30 -1:45 W. Ryan Neuhofel, DO, MPH: "Beyond Tweets & Status Updates"

W. Ryan Neuhofel, DO, MPH, called “Dr. Neu” by his patients, is a board-certified Family Physician practicing in Lawrence, KS. He completed medical school at Kansas City University of Medicine and Biosciences (2004-08) and residency at University of Kansas Medical Center (2009-11). After serving as Chief Resident of Family Medicine during his final year of residency, he started a solo “Direct Primary Care” practice in December 2011 called NeuCare Family Medicine. NeuCare’s mission is to “provide high quality, affordable primary health care directly to our community”. Dr. Neu provides a broad spectrum of primary care in a unique fashion that includes both old-fashioned and high-tech services. In between doing house calls, he uses the internet in a variety of ways to connect with his patients. For personal issues, Dr. Neu is available 24/7 to his patients and they can communicate by email, phone or webcam for many issues . NeuCare has a Facebook page that provides news about the practice, health news and tips. Dr. Neu has recently started creating original health education videos using his digital camera, iPad and desktop computer. He envisions a future where high-tech primary care is built upon a direct cooperative relationship between patient and doctor to create a true medical home in sickness and health.

Session 4

2:00-2:45 Lisa Fields: PowerPoints that snap, Crackle & Pop

Lisa Fields, M.S. Founder of Lisa Fields & Associates, is an adult education scholar with a master’s degree in adult education. Her clients include health care organizations, small business and nonprofits, as well as Fortune 500 companies. Her firm gathers facts, blends them with practical wisdom and a dose of creativity and then delivers presentations, PowerPoint deck, and educational sessions worth your time. Lisa is a member of The Walking Gallery of Healthcare, an art advocacy initiative of Regina Holliday. Her passion for health care began as she served as a Mental Health Senior Practitioner, Vocational Rehabilitation Counselor and Director of Education with a Residential Drug Addiction Treatment Center.

Lisa used her passion for sending Twitter Messages, also known as Tweets, during the Patient Safety and High Performance Leadership Summit held at the National Press Club. She also participated in HealthCampDC and later joined The Walking Gallery gathering.

Lisa, also known as Practical Wisdom on twitter, is an active participant and guest moderator for several health care social media tweet chats both in the US and internationally. Sypmplur lists her as an influencer among several tweet chats. Lisa presented her webinar: Health care tweet chats 101: Everything you need to know for the Mayo Clinic Center for social media.

Ms. Fields, along with fellow Walking Gallery member Colin Hung, will launch a health care social media tweet chat focusing on leadership within health care this October.

Lisa adores her remarkable daughter Ally, a college freshman at the University of North Carolina Asheville.

Session 5

3:00-3:45 Michael Millenson "I Need You (Mostly), You Need Me (Sometimes): Building a Relationship with the News Media"
See Bio Above)

Reporters need stories. You have a story to tell. The beginning of a perfect relationship, right? Ahh, if only "J(ournalist)-Date" was that simple. Relationships with the news media can have as many wrinkles as any other relationships: what that cable news reporter wants and needs can be very different from what's needed by a reporter for an online trade newsletter. This session will discuss how the media work, what to expect as a source and how the old media interact with the new and how, specifically, patient stories fit into the mix. It will also be interactive, enabling attendees to learn from each others' experiences.

Final Traditional Conference Session in Room A

4:00- 5:00 Olga Pierce from Pro Publica

Olga Pierce is a recent graduate of the Stabile Investigative Journalism Seminar at Columbia University, where she won a Horton Prize for health reporting. Before Columbia, she covered health policy for United Press International in Washington where, in addition to writing stories about Medicare Part D, uninsured Americans and AIDS vaccine, she appeared as a commentator on C-SPAN and went to Camp David as a White House pool reporter. Her stories have appeared in the Chicago Tribune, New York Times, Hindustan Times, Lincoln Journal-Star and other newspapers. Olga is fluent in Czech and has a bachelor’s in international economics from Georgetown University.

4:30-5:00 Lesa Mitchell from Kauffam Foundation Film Trailer

Lesa Mitchell is vice president of Innovation and Networks at the Ewing Marion Kauffman Foundation. Her responsibilities include identification of programmatic and policy levers that can accelerate innovation and support networks enabling firm growth.

Mitchell was instrumental in the founding of the Kauffman Innovation Network/iBridge Network, the Translational Medicine Conferences in the United States and Europe, and the National Academies-based University–Industry Partnership. She also is a leader in the replication of innovator-based commercialization and mentor programs across the United States.

Mitchell recently served on the board of Gazelle Growth in Denmark, and currently is chairman of the Kauffman FastTrac board. She is an advisory board member of the National Science Foundation i-Corp program and of Modern Meadow Inc. Prior to joining Kauffman, Mitchell spent twenty years of her career in global executive roles at Aventis and Quintiles, and she was an entrepreneur focused on the global management of electronic clinical trials.

Closing the session and transition to dinner: Regina Holliday

Dinner Served 5:15-6:15

Ignite-style speeches, (20 slides 5 minutes) begin 6:30-8:00

1. Josh Rubin (Bio Above):"Sharing Saves Lives: We are the Key to the Cure"

2. Ann Becker-Schutte( Bio Above): "Holding Hope at the Intersection of Physical & Mental Health"

3. Bart Windrum (Bio Above): "Dying In Peace: New Terms (of Engagement)"

4. Susan Hull: "We are ONE: Ignite our collective voices"

Susan is an energetic, visionary nursing executive and entrepreneur, passionate about co-creating technology-enabled innovations, transforming health and care eco-systems to dramatically improve health and wellbeing, with national and internationally reach. Susan believes we can achieve an affordable, sustainable learning health system – where consumers, providers and communities are dynamically engaged and thriving.

Susan is a national thought leader in redesigning healthcare in organizations and communities and brings experience from diverse roles, including designing and managing a new Children’s Hospital Emergency Service, nursing and health system executive, new healthy community partnership and community health information network (CHIN) executive, clinical informatics and decision support executive, consultant and action researcher.

6. Michael Weiss: “Using the Grassroots Patient Movement of Health Care Social Media to Manage Chronic Illness" @HospitalPatient

Michael A. Weiss is a 49-year old Patient Advocate, Health Care Commentator, Health Care Reporter, Blogger, Motivational Speaker and Video Journalist who focuses on matters pertaining to coping with chronic illness, almost exclusively from “The Patient Perspective.” He is also an Author, Attorney and MBA.
Michael was diagnosed with the auto-immune and incurable illness “Crohn’s Disease” in 1984. In July, 2001, after more than 100 Hospitalizations & well on his way to 20 + surgeries, Weiss wrote the critically-acclaimed Book, “Confessions of a Professional Hospital Patient,” determined to both CHANGE the unpleasant stigma associated with diseases like Crohn’s, Ulcerative Colitis and Inflammatory Bowel Disease and to HELP people with ALL chronic illnesses learn how to Cope, Live, Love & Laugh with their lot in Life.
Now, in 2012, after more than 200 Hospitalizations and 20 surgeries, Michael utilizes the technology-driven grass roots movement of “Health Care Social Media” to demonstrate how Patients can share their information and experiences so that those with chronic illness from all over the world can learn and become empowered from one another without having to undergo unnecessary and depressing healthcare experiences or inefficient real life interactions with dedicated and compassionate Medical Professionals.
Weiss’ refreshingly candid and humorous accounts of his own medical trials & tribulations help others feel as if they are not so alone in their once thought of private battles caused by chronic illness such as physical, mental and emotional pain, family issues, maintaining friendships, medical bills, and the constant associated financial pressures. It is Weiss’ hope that he and his similarly-minded Patient brethren or fellow “Crohnies” can make “Health Care Social Media” an incredibly powerful Patient Tool and true “Game-Changer” thus giving Patients a genuine Voice in all future HealthCare Reform discussions.

7. Carolyn Capern: (Social)Media Matters

Carolyn is a Star-Spangled Canadian, with roots on both sides of the border that inform her perspective on politics and especially health care. The bulk of her adventures in health care began when she was in sixth grade, and began to suffer severe knee pain-a battle that continued through until college-and regrettably, it seems that health does not improve with age. Shortly after arriving for her first year of university in Washington, DC, she suffered a severe concussion that was misdiagnosed and poorly treated for several weeks, causing me to lose my memories of a three month period of time.

In 2009, she witnessed the best and worst of the American health care system. In the shadow of the Congressional debate over health care reform, she dealt with a knee realignment surgery and a sinus procedure, while watching from afar as her favorite professor suffered through cancer treatment. Both her problems were resolved with time and good care, while her professor ultimately died after being denied the same kind of quality treatment she received while in hospital. His death, which occurred on Carolyn's twentieth birthday, gave life to her commitment to fight for equal access to quality care. In his honor, She is proud to wear a jacket for The Walking Gallery called "Media Matters," depicting the importance of television and film in sharing stories of health care.

8. Amanda Greene: "Ignite! From flare to flair: a journey to discovering LA Lupus Lady and "Lupus Style" @LAlupusLady.

Amanda Greene enjoys connecting and sharing her passions with others. Amanda is an advocate for Lupus, an autoimmune disease which afflicts more than 1.5 million people in the United States. As "LA Lupus Lady", she raises awareness and support for Lupus and the Lupus community. She creates YouTube videos, moderates the Facebook group "Lupus Awareness is Fun.", she openly shares her Lupus story and can often be found on her IPad "tweeting too much."She was diagnosed with Lupus in 1983, at the age of 15. Today, Amanda not only "lives with Lupus" but is active, healthy and thrives. Thriving with Lupus is not as easy as it sounds. Amanda is constantly exploring new resources to manage her symptoms. Connecting with Lupus patients, caregivers and others who live with chronic illness is one way that Amanda shares and engages with the wellness community.

As a voice and activist for Lupus and the Lupus community, Amanda believes that sharing caring. In 2011, she moderated the "Lupus Ladies of Twitter" panel and spoke about how she is sharing that "Lupus Awareness is Fun because is it important." at the 140 Conference in New York City. This past June, with Tiffany Peterson, she shared the impact Social Media has on the Lupus community. Amanda described what "Lupus Style" means to her during the "#LupusChat #LupusStyle at the #140conf" panel at the 92nd Street Y in New York City. In 2011, Amanda was a part of the "breakout sessions" at the Women in Pain Conference and spoke again this year on how Social Media can help you "Build Communities and Find your Tribe" online.

Amanda has a flair for style as an accomplished brand ambassador, wth particular experience in the fashion, entertainment and cosmetics industries. She organized publicity events, both real-time and online, for nationally distributed brands and campaigns. Amanda has developed successful campaigns and events for diverse clients including: CNN, Warner Brothers Television, the Mill Valley Film Festival, Bill Graham Productions and Grateful Dead Productions. Connecting with Social Media is a natural extension of Amanda's warm personality.

Amanda lives in Los Angeles, with her husband Steve and their cat, “Rex Ryan”. Her other interests include fashion, style, gardening and supporting the New York Jets!

9. Erin Gilmer: "Breaking Boundaries"

Erin Gilmer is a patient advocate and health policy attorney specializing in HIPAA and HITECH in Austin, Texas. She received her law degree from the University of Colorado Law School and was admitted to the State Bar of Texas in 2008. She spent her last year of studies at the prestigious University of Houston Health Law and Policy Institute. Ms. Gilmer graduated suma cum laude from the University of Colorado in 2005 with degrees in psychology and economics with an international emphasis and a minor in political science. She has contributed to several publications including Health Law and Bioethics: Cases in Context and articles in the Journal of Experimental Psychology, Virginia Journal of Social Policy and Law, Journal of Medicine and Ethics, and the Texas Bar Journal. Ms. Gilmer worked for the State of Texas, involved in the 2009 and 2011 legislative sessions focusing on public health. She previously worked for several non-profit organizations including Disability Rights Texas, Texas Legal Services Center, and Rocky Mountain Children’s Law Center. Ms. Gilmer volunteers for several community organizations including Lisa’s Hope Chest, Austin Involved, and the Austin Young Lawyers Association. Additionally, Ms. Gilmer founded Health 2.0 Austin, bringing together the Central Texas Community in health, technology, and disruptive innovation.

Erin blogs at www.healthasahumanright.com, www.austinhealth20.com and tweets @GilmerHealthLaw.

10. Casey Quinlan "How Asking What Things Cost Can Shift the System"
"Whoopee – cancer!"

That's not your average reaction to a cancer diagnosis, and Casey Quinlan isn't your average patient. When, after her 15th mammogram, she won the booby prize – breast cancer – her first reaction, after downing a stiff drink, was to cover her own cancer story with the same relentless inquiry she brought to her career in network television news, and that informs her work as a "business storyteller" and branding consultant. Casey's approach to her treatment: be an active participant, not a passive consumer. Her metaphor for managing medical treatment? "It's like a car wash. When you go to a car wash, do you want to be inside the car, or strapped to the hood? Ask questions, make sure you understand the answers – you get to stay inside the car. Otherwise, you get lots of soap and wax up your nose!"

In Cancer for Christmas: Making the Most of a Daunting Gift, Casey shares the questions she asked her doctors, what she did with the answers, and how she navigated surgery, chemo, and radiation treatment with determination, ferocity, and a large dose of humor. Fierce and funny, thought-provoking and inspiring, Casey's story of her journey to cancer-free is full of insight into how to survive, and thrive, after getting life-changing medical news. Casey is a storyteller, speaker, media strategist, and writer with an extensive background in broadcasting, theater, and stand-up comedy, who believes that it – business, and life – is all about the story.

Telling a great story attracts and engages your target market, driving the growth of your brand.
Casey studied theater and performance at the University of San Francisco, American Conservatory Theater, HB Studios, and the American Comedy Institute. From there, she launched a two-decade career in broadcast news and sports, covering stories for Dateline and Today, presidential campaigns, wars, presidential campaigns that turned into wars, NFL Playoff games, Stanley Cup hockey, and the NBA. The highest and best use of her theater and improv training came when Casey talked her way out of police custody in Saudi Arabia during Operation Desert Shield in 1991. She talked her way out of jail, and then got to stay in Saudi for four months – she's still not sure that was really a win, but it's a great story. She honed in-the-moment skills doing stand-up comedy, performing at Caroline's, Gotham Comedy Club, Catch A Rising Star, and the New York Comedy Club. After facing drunken hecklers, corporate audiences are a walk in the park.

It's all about the story – whether you're building a company, a brand, or a community.

11. Jari Holland Buck (Bio See Above): "Hospital Infections - Prevention is the Key!"

12. Pat Mastors (Bio See Above) : "The Patient Pod: Putting Engagement Tools in Patients' Hands"

13. Lisa Fields (Bio Above): "Do you see what I see?"

14. Eunita Winkey "No More Clip Boards: The Behind the Scenes Struggle for the Medical Record"

Eunita Winkey is Founder/CEO of ATWINDS Foundation, Inc., and motto is "A Teacher's Work Is Never Done Services." She has appeared as a panelist for the Hysterectomy Education Resource Service Conference. In addition, she has participated in a number of health care forums, and conferences. Eunita has shared her movement with Congressman Steny Hoyer and Congresswoman Dona Edwards office. She has shared her unnecessary hysterectomy medical error story in many venues such as Radio One, Michael Baisden, 50+ Magazine, public schools, colleges, Health and Human Services Faith Expo, Congressional Black Caucus Foundation, churches, community, government, AARP and National Council of Negro Women Planning for Long-Term Care Campaign, and the Point TV show on DC cable as co-producer of the health care show. Eunita advocates the Walking Gallery for Regina Holiday and she is featured in Surfing the Healthcare Tsunami participating in the Walking Gallery (http://www.safetyleaders.org/Discovery/surfingTsunami.jsp). Eunita also advocates for electronic medical records (no more clipboards), elderly neglect and abuse, and medical ethics. As a doctoral student pursing her Doctorate in Education Leadership, she believes that research is vital to all issues,solutions,and effective leadership. For her dedication to the cause the Senator Thomas V. Mike Miller, Jr. (President)and the Senate Members of Maryland presented ATWINDS Foundation, Inc. and David Bynum (Eunita's deceased father who died of medical errors) with a Maryland Resolution. The resolution states "Be it hereby known to all that the Senate of Maryland offers its sincerest congratulations to Eunita Harper Winkey, Founder/President ATWINDS Foundation Inc. in recognition of your dedication to helping others, mentoring children strengthening communities and serving many through such programs as the Katrina Project and the Medical Record Awareness program. The entire membership extends best wishes on this memorable occasion and directs this resolution be presented on this 30th day of June 2011."

Shuttle back to Marriott 8:15pm

Shuttle to Riverport leaves Marriott 7:00am

Sunday Registration begins at 7:30 am
Breakfast in exhibition space

HealthCamp, an unconference will be held on Sept 23rd in Kansas City as part of the Partnership with Patients summit. Mark your calendars for the weekend of September 21st -23rd. HealthCamp hosted by Mark Scrimshire will cap off an exciting weekend at Cerner’s educational facility in Kansas City. Continuing the innovation learning approach from the previous days, patients, physicians, nurses, technologists, health system and policy leaders, payers and suppliers will create session topics the day of the event focused on "Empowering Patient Engagement." The unconference process and the Center for Total Health itself will create a flexible and energetic collaborative environment for participants. Check out the HealthCamp Foundation home page for other HealthCamp information.

Greeting: 8:00 in room A

Break into unconference sessions 9:00 am/patient speaker boot-camp

Session rooms B,C,D,E,F,

Patient Speaker Boot camp stays in room A to record speeches

9:00 am to 12:00

Grid times for Unconference

9:00am -9:45

10:00-10:45

11:00- 11:45

12:00- 12:45 Lunch and good byes to early departures Exhibition space

1:00pm - 1:45

2:00-2:45 Wrap up in Room A

For more information about the summit and to receive media access with press credentials, contact @ReginaHolliday on twitter or 202-441-9664

About Partnership With Patients

http://partnershipwithpatients.com/home/

↧

Be Opened

October 7, 2012, 10:45 am

≫ Next: Trapped Energy at #PCORI

≪ Previous: Partnership WITH Patients

I have a favorite word. I heard it in a sermon over 20 years ago. I even used this word as the title of my dear friend Kait B. Roe’s Walking Gallery jacket.

The word is Ephphatha.

This is word that Jesus used as he healed a man who was deaf and mute. The word means, “Be opened.” Immediately upon being healed the man who once suffered greatly in his ability to communicate, began to exclaim and the crowd responded in kind.

This past week was a great one for the word Ephphatha, as the results of the OpenNotes project (primarily funded by the Robert Woods Johnson Foundation Pioneer Portfolio) was published in the October issue of the Annuals of Internal Medicine.

It was a great week for patients too. I have been testifying these past 3 years about the importance of open data access for patients. Much has been done to improve electronic medical record access in these past three years. Meaningful Use stage one specified that patients should be able to see imaging results, labs, vitals and after-discharge summaries. The Blue Button download, currently in use by the VA, Medicare and Tricare, also enabled access to this information and a bit more.

But I testify that patients need complete data access and that means we should be able to see medical reconciliation reports, nurse’s progress notes and doctor’s progress notes. I have said so vehemently and frequently in person and online.

I especially commented on the concept of open notes Twitter.

In June of 2010, I was part of a conversation thread on this topic. While I was tweeting advocacy for complete access Steve Downs with RWJF joined the thread and told us to watch for the results of the OpenNotes project. I learned about this project designed to study the ramifications of opening up doctor’s progress notes to patients. I read about it a great deal in the two years hence.

I am glad to see the claims made by myself and other e-patients that open notes have great value now have scientific support. In 2010, when we were advocating for open access we were given many reasons for denial.

Reasons for record access denial vs. reality

We were told patients are not educated enough to understand medical language and would be emotionally damaged by reading the record, yet in the study 90% patients responded they understood what they had read and were not bothered by it.

We were told that if patients could read the record they would pursue more lawsuits against doctors; as of this writing I understand only 1-8% were concerned or offended by the contents of the notes and I have not heard of any report of legal action against the doctors in this study.

We were told patients are too lazy to check their record, yet 87% of those enrolled in this study did check the notes.

We were told that open notes would cause an unbearable increase in the workload for doctors, yet after completing the study doctors said the study either only added a modest increase in work or that it was negligible.

So post study we see so many fears were unfounded, and healing benefits came to light instead. 80% Patients claimed greater adherence to medication protocols due to access to the notes as well as better ability to follow their doctor’s recommendations.

Which brings me back to Ephphatha.

Be opened.

There is more within this report than dry statistical support of the belief that open communication can improve workflow and outcomes. This is the moment when the walls of isolation fall down and those patients and caregivers who cried in silence, both deaf and mute, can finally join in greater communion within healthcare.

Here our hearts open and we sing.

There is still much to discuss on this topic. When will we see access to nurse’s notes? When will individuals who suffer in the behavioral health system have such access? When will those patients who have succumbed to drug abuse have access? Will we find that the reasons for denying such persons access to be as unfounded as the reasons that were once used to deny traditional patients access to notes?

In DC on Thursday, October 11^th 9:30- 11:30 there will be a public meeting on OpenNotes that will be live-streamed. I hope to see some of you there as we rejoice and question. I will be live painting and I think that painting will be entitled “Ephphatha Revisited.”

#######
Great articles on this topic:

Historic Day in Opening Doctor's Notes by Dave Chase, Forbes

Letting Patients Read the Doctor’s Notes by Pauline W. Chen, M.D., The New York Times

Would You Want to See Everything Your Doctor Writes About You? by Lindsey Abrams, The Atlantic

↧

Trapped Energy at #PCORI

October 27, 2012, 11:03 pm

≫ Next: The Million Puppet March

≪ Previous: Be Opened

I spent most of Saturday October 27^th at PCORI- Patient-Centered Outcomes Research Institute meeting Transforming Patient-Centered Research: Building Partnerships and Promising Models. It was the first conference day.

I arrived a few minutes late because it was the earliest I could find a sitter on a Saturday with short notice. A week before I did not think I would be attending this meeting.

I first heard about the goals of PCORI from Sue Sheridan in May 2012. Do you know Sue? She is a kind beautiful woman who is an advocate due to two medical errors. Her husband Pat died in 2002 after a radiology report that described cancer was not communicated to his care team. Their son, Cal, born in 1995 suffered brain damage due to neonatal jaundice. She has suffered so, yet she strives to help others. Many of us in the patient advocacy community rejoiced that such a dedicated advocate was selected to be Director of Patient Engagement at PCORI.

Sue called me because she was helping plan a PCORI meeting on data in July. In early May she asked me to submit a bio to be considered as an attendee of this meeting focusing on data. At the end of the month she let me know I wasn’t a good match for this meeting as I focused on patient records and this meeting would be about HIT.

I wondered a bit at that. HIT is sorta my thing, but I shrugged my shoulders and went on with plans to create a Partnership with Patients Summit in September. I got a few form emails from Sue after that and in one she encouraged all recipients to request to attend the meeting in October. I also got a letter from Helen Haskell with the same request. So I submitted a request to attend. On October 9^th, I got an email that said:

“Thank you very much for your interest in attending the PCORI workshop Transforming Patient-Centered Research: Building Partnerships and Promising Models, October 26-28, in Washington, D.C. We received more than 350 statements of interest and were overwhelmed by the commitment and passion expressed by our patients, caregivers and other stakeholders.

Due to limited event space and high demand, we unfortunately are unable to invite you to attend the workshop in person. You are important to us and we want to capture your ideas and energy as we build PCORI’s patient engagement initiative. We will provide a webcast for the workshop and opportunities for you to provide feedback on the workshop’s six breakout session topics. Details will be distributed before the workshop, so be on the lookout for another email from us in the near future.”

I recently learned one of my friends and fellow advocates Joleen Chambers got a similar response.

So, I thought that was that. But on Monday I received an email from Sue that there was a mistake that I had not been invited, and even though it was late notice they would like me to attend. So the mad scrabble to find a sitter began just as I was preparing to fly to Korea to present. By Friday I found a sitter.

At 8:45 on Saturday I found myself wheeling art supplies into the grand ballroom of the Renaissance Hotel. I set up my easel and began to paint the rest of the day. I would finish it at home this evening.

“Trapped Energy.”

When I finished this painting and was taking a picture my six-year-old Isaac came over to look at it. He said, "What is the goal of this maze? To get all the money before the time runs out?" I thought about all the discussion I heard today and said, "Yes, Isaac that is pretty much it.”

My impressions of PCORI meeting day 1

Research FUNDING

My prior experience with patient partnering in research was had through participating in The Learning Health System Summit. That is a group consisting of of public and private enterprise creating opportunities to share data sets and research. I wish we had a transcription of that event. I would feed it into a word cloud generator. I bet we would see the word share looming large. At the PCORI meeting I heard the words funding and incentives about as often as in a Meaningful Use meeting at an EMR conference.

#PCORI on TWITTER

I was initially dismayed that there was no WIFI at this venue, but was delighted when the staff had it turned on so attendees could tweet. This event was live-streamed in the morning. There was quite a lively twitter stream, with the majority of the tweets coming from individuals not in attendance. I grew concerned when I realized the individual tweeting for PCORI was not answering questions on the stream. I went to Sue and asked her the questions and tweeted out the answers.

Workshops in lecture style

In the afternoon we were put in numbered groups to attend workshop sessions. I was in group number 5. Lori Frank from PCORI facilitated our first session. She stood in front of the group and called on us if we raised our hands. She wrote our suggestions in small print on a large paper-covered board. When it came time to discuss the topics she had to say them out load since we could not read such small print.

Sessions were less than an hour and then we would move to the next room. Each time I moved I had to break down my easel and gear. Soon group 5 left me behind and I just stayed in the same room for the session. Eric Meade from the Institute for Alternative Futures facilitated this session. Eric discouraged talking among attendees. When I and another attendee began discussing our concerns that so few people applied to attend the PCORI meeting and many of those turned away, we were talked over by Eric and he called on another attendee. He also wrote very small on the board.

In the next session I stayed. I tried not to comment too much, but when another attendee mentioned the board was unreadable. I asked why couldn’t he write larger? There was a note taker in the room for his benefit. Wasn’t the board for us? He said it had to be this way and he had his reasons.

And that is when I packed up my easel and left the meeting. I had had enough. I was tired of being a mouse in a maze. I was tired of being led from room to room. I was tired of hearing about the importance of being funded and the short time table to get those funds.

We were supposed to answer two questions on this conference day:

1.How can PCORI best measure the effectiveness of patient and stakeholder engagement in research?

2.What novel methods can patients and patient advocates propose for evaluation of research engagement that would capitalize on the growing networks of patients engaged in research?

I want to focus on that second question and the word novel.

Novel: of a kind not seen before; fresh; new; original

I wanted to hear this group speak about the Quanified Self-movement, yet I met attendees who had never heard of Patients Like Me before today. If you look at this painting here is the hope. This patient hand reach up out of the maze beyond and above the enclosing walls. Here is the patient in the center able to see a new horizon, reaching toward the cloud informing a greater crowd of the greatness that is coming.

I want to see one aspect of PCORI engagement determined by a robust SYMPLUR report or perhaps a good Klout Score.

I want to see the folks talking about disparity without equating internet access and affluence. Mobile is the great equalizer.

I want to see a thriving PCORI group on Facebook, because although Sue is great patient advocate she cannot do this on her own. We need to support the mission in an open and transparent fashion.

I want to see an unconference at PCORI. I want to see all these wonderful bright people determine the agenda themselves.

I want to see an equal number of providers, patients and researchers in the same room taking with each other. We will never have value in the eyes of the medical establishment if you keep having separate meetings. Separate is not equal.

I want to see these novel things, so I can paint a different picture.

*************************
Update October 31, 2012

It has been a few days since posting this. Since then I have introduced Sue to Josh Rubin from the Learning Health System and MarkScrimshire from HealthCamp as he specializes in Health conferences. Sue was happy to hear of their work.

Kelly Young also posted a blog about this conference: Creating a Culture for Patient Centered Research.

A few attendees have reached out to me saying they felt welcomed and appreciated, and that is important to acknowledge.

In the comments field below Kelly stated my concerns better than I did in this post when she said."My concern is that PCORI will have novel goals, but then attempt to accomplish them using the same old ways of doing business. Internally, they need to consider what kind of relationship they want to have with this community that they say they want to build. Then, they need to nurture that relationship and learn from it. While this may require changing some specifics, like writing larger on the board or training someone to reply to Tweets, it is more about establishing relationships that model the kind of of respectful, democratic communication that PCORI hopes will take place within each of its research teams.

↧

The Million Puppet March

October 28, 2012, 3:52 pm

≫ Next: The Conference That Felt Like a Hug.

≪ Previous: Trapped Energy at #PCORI

I love people who will not abide injustice.

I honor those brave regular folks who jump up and demand action even if they have no funding or safety net.

I especially relate if they have gone through their own personal hell, yet still stand up for others.

I found such a person in Chris Meecham. He is a student who lives in Idaho. When he heard recent remarks during the presidential debate that a candidate was considering defunding public broadcasting, he decided he must do something. Then he did a very scary thing; he spoke about politics on his blog and began to organize The Million Puppet March in DC on November 3^rd to support continued funding for Public Broadcasting.

Michael Bellavia an animation executive was in Los Angeles and thinking the same kind of thoughts. Originally the event was entitled The Million Muppet March, but in a desire to be inclusive they renamed it the Million Puppet March. They joined forces and created a website and a Facebook page and a Twitter account. Then they worked on getting permits to host an event across the country in DC. Which is not for the faint of heart.

Now they need your help with fundraising. They created a crowd-funding account on indiegogo. They need to raise at least 10k in the next week to fund the minimum permitting costs. Please donate. Even a small amount will help.

Chris and Michael are really sticking their necks out. They have entered the political fray in the name of all that is PBS. I have done this in the world of patient rights. I know how mean the comments field can get when you stand up for the down trodden. So I firmly support this attempt to fight back with laughter, puppets and marching.

I will march with them, for I too have puppets. They are Henson-style Muppets focused on Blue Button and Patient Rights. We very much appreciate the amazing health education that has been provided by public broadcasting, from hygiene lessons on Sesame Street to explaining hospice on Frontline. I am glad to join forces with Chris, Michael and the 600 other puppeteers who plan to attend.

And in case you have not seen it, this was the way my late husband Fred said goodbye to his sons in hospice a few weeks before he died.

He did it with puppets.

Please donate to the cause. I hope to see you there I have a lot of puppets to share. Let me know if you can march with us.

Join Us 11/3/2012 10am ET in Washington DC in Lincoln Park. 11am March to Capitol Reflecting Pool for 1pm ET Rally. 2pm ET Global Tweet: "I support continued public funding of public media. #MPM2012"

↧

The Conference That Felt Like a Hug.

October 28, 2012, 7:00 pm

≫ Next: Dying at “Home”

≪ Previous: The Million Puppet March

So was Partnership With Patients September 21-23, 2012 in Kansas City a success?

We proved it was possible for a loose confederation of patients to gather and organize with little time and little funding. We were nimble.

It was a great gathering of lovely people from all over the nation. Patients worked hand in hand with partners. Each benefited from the expertise of the other. Most of all we proved this could be done.

Remember where this saga began? On May 22nd , we were told there was no funding to gather patients to talk about goals of the Partnership for Patients campaign. Pat Mastors and I thought we had to do something to change this. Kathy Nicholls helped create a website and we began to plan. In the months hence we worked with the team from Weber-Shandwick and the Partnership for Patients team from CMS to open up communication between an ever larger group of patients. Representatives were able to come to our Kansas City summit from both Weber-Shandwick and CMS.

Crowd-funding

HealthTech Hatch: Patient Travel Scholarships

Thank you to Patricia Salber and the entire HealthTechHatch team for their dedication to go live as soon as possible, thereby ensuring we had a chance to raise the needed funds. Thank you to all the 34 amazing people who donated to HealthTechHatch Patient Travel Fund at the Society for Participatory Medicine. We raised $6,085.00 in approximately 2 weeks during the first weeks of public beta.

THANK YOU! Josh Kimberg, Pat Salber, Chris Selecky, John Sullivan, Juliet Oberding, Dov Michaeli, Marty Diamond, Amy Salber, Elaine Waples, Bryan Beck, Laurie Nirenberg, Lisa Fields, Josh Krakauer, Susan Hull, Mee Elizabeth, Scot and Mitch, Megan Grangoff, Jon Mertz, Wayne Pan, Lorrie Eigles, Peter Boland, Grey Miller, Daniel van Leeuween, Ian Eslick, Kathy Nieder, Colin Hung, Maureen Bisognano, Jim Hansen, Helen Haskell, Steven Davidson, Amanda Griffith and Jamie Inman

This allowed the Society to issue 9 scholarships of 500 for e-patients to attend the event. As we received over the required amount and as some individuals donated directly to the Society there was money left over to seed a permanent fund for patient travel at the Society for Participatory Medicine.

Thank you to our scholarship award winners for being the first e-patient travel scholars!

Amanda Greene, Richard Anderson,Evelyn McKnight, Alicia Staley, Bart Windrum, Michael Weiss, Nikolai Kirienko, Steven Baker, Winnie Tobin

Medstartr: Travel Funding for the Walking Gallery and Partnership With Patients

Thank You to Alex Fair and the entire Medstartr team for their hard work supporting us to meet our funding goal and thank you to the 90 funders who helped us go far beyond our original funding goal. This project was funded at 219% raising $10,948.00 and broke the record for most funders and most money raised on Medstartr at the time of the project close.

THANK YOU to our amazing funders! Alex Fair, Nick Dawson, Gregg Masters, Kim Whittemore, Alexandra Yperifanos, Abby Prestin, Howard Luks, Ileana Balcu, Donna Scott, Deidre Bonnycastle, Alan Greene, Theresa Willett, Steve Sisko, Martine Ehrenclou, Benjamin Miller, Jerry Matczak, Pat Mastors, Lisa Fields, Patricia Salber, Mary Cattolico Camp, Mindy Brown, Kavita Patel, Clay Patterson, Janice McCallum, Jess Jacobs, Anette McKinnon, Roni Zeiger, Loring Day, Linda Brady, Marilyn Mann, Heather Leslie, Jon Mertz, Kristen Andrews, Sarah Kucharski, Carolyn Thomas, Sue Woods, Fred Trotter, Matthew Holt, Chiara Bell, P. F. Anderson, Phoebe Browning, Ted Eytan, Ronan Kavanagh, Nicole Dettmar, Andrew J. Rosenthal, Brian Ahier, Matthew Browning, Andre Blackman, John Moehrke, Symplur, Sherry Reynolds, Pat Mastors, Matthew Katz, Gangadhar Sulkunte, Bruce Ramshaw, Ann Becker-Schutte, Michelle Litchman, S. Turner Dean, Lisa Fields, Julia Halisy, Andrew Spong, Peter Levin, Brian Carter, Colin Hung, Kourtney Govro, Ruth Ann Crystal, Marianne Venitti, Emily Hackel, Devon Scanlon, Helen Hadley, Mike Sevilla, Joshua Rubin, Noel Eldridge, Phydian Systems, Alexandra Drance, Susan Eller, Ross Martin, Elin Silveous, Qpid.me, Joltdude

Thank you to everyone who supported Partnership with Patients on Eventbrite. Many of you purchased tickets at sponsorship levels, which enabled us to pay for food, staffing and shuttles.

Thank You! Susan Hull, Scott Strange, Francie Grace, Howard Luks, Joleen Chambers, Steven Baker, Alexandra Yperifanos, Mark Scrimshire, Maumi Cannell Chatterton, Dean Sellis, Amy Keil, Bunny Ellerin, Katrina Huckabay, Carolyn Capern, Trisha Torrey, Lisa Fields, Michael Millenson, Diane Stollenwerk, Jen McCabe, Pat Mastors, Ryan Neuhofel, Karen MacDonald, Casey Quinlan, Jerry Matczak, W. Joseph Ketcherside, Gary Takher, Jody Schoger, Gayle Sulik, Dave DeBronkart, Douglas Wager, Ken Burke, Eunita Winkey, Bridget Searles Andi Neuhofel, Marcia j. Corbett, Lesa Mitchell, Sarah Barr, Winnie Tobin, David Voran, Roy Foster, Tiffany Peterson, Amanda Greene, Alicia Staley, Richard Anderson, Michael Weiss, Nancy Imber, Robin Miles-McLean, Karen Oliver, Linda Ketcherside, Ross Martin, Colby Meier, Jim Hansen, Peggy Zuckerman, Evelyn McKnight, Amy Burgess, Ann Becker-Schutte, Bart Windrum, Steve Daviss, Joshua Rubin, Diana Lee, Brian Carter, Sarah Kucharski, Kait B. Roe, Olga Pierce, Erin Gilmer, Dan Ford, Erika Hanson Brown

Thank you to our many sponsors
Cerner graciously hosted us in their educational facility as well as helped with coordination and audio visual equipment and staff. Cerner also gave tours of their experience theater to patient groups to better explain HIT policy in real life. Intouch Solutions helped fund patients, promoted the event and and helped pay for food. Pocket Health helped promote the event and paid for food during the weekend conference. Mark Scrimshire and Maumi J Cannell Chatterton with Health Camp added one more weekend to their busy schedule and hosted our unconference day. We owe a great deal of thanks to all the partners listed above that made this event a reality.

The Kansas City Marroitt Downtown was our conference hotel. Even though our contingent was small, four members of the upper management of the hotel came down to thank us during The Walking Gallery. They were honored that we chose their hotel.

Thank You to our Bloggers and Social Media Mavens
Many of the attendees in person or online are wonderful bloggers and here are some of their reflections on the event. I will post other accounts as I become aware of them.

Partners:Ann Becker-Schutte who wrote about the Walking Gallery, Why Your Voice Matters and Transforming Pain Into Purpose.
Joe Ketcherside: Voices Found
Mike Sevilla Partnership with patients Summit
Mark Scrimshire HCKC Recap
Bunny Ellerin Partnership With Patients: A Conference Like No Other
Gary Takher Patients Connected Like Legos
Whitney Bowman-Zatskin Regina Holliday and the Partnership with Patients

Patients:
Bart Windrum Be Ahead of All Partings
Kathi Apostolidis Partnership With Patients Goes Global
Amanda Greene Nothing is Impossible
Michael Weiss Video Summary of Partnership With Patients
Erin Gilmer Partnership With Patients
Scott Strange On Feeling Centered and the Unconference
AfternoonNapper The Ethics of Pharma-Patient Relationship
Corinna West I met the 1000 mile swimmer and Five Things I learned at Partnership with Patients Conference
Alicia Staley Cerner Showcases the Future of Healthcare
Carolyn Capern The Partnership with Patients Summit

Quite a few people wondered at our long hashtag. I told them to read the blog #Cinderblocks and patient Summits. We trended on twitter for the Kansas City region during the conference. Our symplur analytics show over 3k in tweets leading to 9 million potential impressions.

We also had an unexpected guest. On Sunday swimmer Dave Cornthwaite and his support team joined our group as he swam down the lower Missouri to raise awareness and funds for breast cancer. Thank you to Corinna for introducing us.

Thank you to all of our speakers!

We really packed in a lot of content in very few hours thank you to all of our veteran and novice speaker that made that possible. Cerner will post these videos in the months to come and I will link to them here.

Our Partner Speakers:
Ryan Neuhofel, Tobias Gilk, Anne Becker-Schutte, Joe Ketcherside, Josh Rubin, Doug Weinbrenner, Katherine Cartwright Knodel, Jim Hansen, Roy Foster, Olga Pierce, Michael Millenson, Lesa Mitchell, Susan Hull, Bunny Ellerin, Brian Carter

Our Patient Speakers:

Thank you Lisa Fields, Bart Windrum, Joleen Chambers, Tiffany Peterson, Kait B. Roe, Eunita Winkey, Amanda Greene, Carolyn Capern, Jari Holland Buck, Pat Mastors, Erin Gilmer, Casey Quinlan Michael Weiss, Dave de Bronkart, Evelyn McKnight

Reflections
“Was it a success? Was Partnership With Patients in Kansas City Sept 21-23, 2012 all that you had hoped it would be?"

How do you answer that? Maybe the answer is an economic one, "Yes! We raised the money needed to fund it and found a venue to host us." Perhaps answer is and organizational one, "Yes! Patients and Partners flew from all over the nation and locals gave up their weekend to attend this event in Kansas City." Or should we answer in another way? "This event was a moment to recharge the soul and renew the will to fight for others."

Maybe success was having the event in the first place. Maybe success is the willingness to try even if we fail.

At this event I was a moderator and an organizer. I did not deliver a keynote speech; I left that to the many other attendees. I did deliver some closing remarks.

I spoke to crowd about the day, July 21^st, 2007, I stood upon the sales counter at the toy store Barstons Child’s Play. It was 11:45 at night and I was cloaked in a witches robe. I was performing a dramatic interpretation of J.K. Rowling’s Harry Potter and the Half-Blood Prince, the sixth installment in the series. As I performed the dialog between Professors Snape and Dumbledore, I looked into the glittering eyes of the hundred plus customers who crowded every isle of our store. Then it was midnight, my performance ended, and the crowd grabbed the new book: Harry Potter and the Deathly Hallows.

My husband Fred and I read Harry Potter and the Deathly Hallows very rapidly, mostly reading for plot. Years later after Fred’s death, I would read it again. It dealt so well with immense journey one undertakes after the death of a loved one. I suppose that is very understandable as J.K Rowling based a lot of Harry’s journey on her own experience with grief after her mother’s death in 1990. I told those assembled that one line from the book spoke deeply to me in my grief.

"I open at the close."

I told them this line was such a powerful one. This is the moment that Harry embraces the greatest failure life has to offer: to die. This is the moment we go on no matter our fate; we will strive, we will try to help others even if our own success is forfeit. In this moment we accept that we can fail, and thereby create an opportunity to vanquish our foe.

That is the close I gave those brave partners and patients who met in Kansas City.

I open at the close; or in this end, exists a new beginning.

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Dying at “Home”

November 1, 2012, 10:30 pm

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Aunt Minnie’s house always smells of flowers, cinnamon and wonder. It always has. Tonight Minnie Wilgus died, but I know if I could magically transport myself to Enid, Oklahoma I could walk in that darkened house and it would smell like Aunt Minnie and happiness.

Aunt Minnie was my jolly Aunt. Her refrigerator is covered with magnets from her nursing career, her Lutheran faith and a chubby wooden sheep that said, “ewe’s not fat, ewe’s fluffy!” The ceiling is ringed with a set of commemorative dishes from Little House on the Prairie. In the corner is a macramé plant holder made by one of my cousin’s so many years ago. The kitchen has not really changed in all the years since she moved into the house. Each Christmas would only add one more layer of homemade gifts from our far-flung family.

The TV would play Wheel of Fortune as my Aunt Minnie would sit upon her recliner. Her corded phone was extra long to stretch over to her beloved chair. And that was important because Aunt Minnie is center of our family. She kept 100 plus family members and many friends connected through her calls.

If you know me well, you know I rarely talk on the phone. But talk I would with Aunt Minnie for hours at a time about politics and religion, family and love.

I have always been able to talk to Aunt Minnie, even about the hardest things.

Aunt Minnie was a LPN in an ICU at St. Mary’s Hospital in Enid Oklahoma for many years. She worked the 3 pm to 11 pm shift. I remember being small and visiting her at Christmas and she would eat the family meal with us then dress in her uniform and go to work on Christmas. I thought it unfair, but she said the patients needed nurses on Christmas.

It was on one such visit I told Aunt Minnie about Dad abusing us. I was so frightened but I knew I could talk to Aunt Minnie. I remember her telling Mom. I remember staring through her glass door covered with its decals of Monarch butterflies as she and my Mother stood by our ‘76 Impala. I could not hear their words but I watched my Mother’s shoulder’s begin to shake. I watched Aunt Minnie fold her arms around my Mom in a massive hug.

That was the beginning of the plan.

Every summer for the rest our childhood my sister Esther and I would stay with our Aunt Minnie and Aunt Hilda. We would spend day with Aunt Minnie and nights with Aunt Hilda across the street. They would teach us so many things. We would do charity work with them at Project Philip; we would bake and help with Church events. They would send us to camp Lutherhoma and buy our fall school clothes each year. Aunt Minnie was so happy. My sister Esther was her Goddaughter and was like the child she never had. Esther was always small for her age so she would cuddle in Aunt Minnie’s lap until she was in high school.

As we grew older, Aunt Hilda would let us stay at Aunt Minnie’s for the night. I would stay up reading much past my bedtime, sometimes hearing the garage door open at 1:00 or 2:00 am. Aunt Minnie would gently berate me and then tell me a “do not ever” story. As a nurse she saw so many things and sometimes she would come home, shake her head and say, “Do not ever jump out of a car as it is driving down the highway.” Or it would be “Do not ever stick your tongue all the way into a soda can.”

As the years past, I would bring the art I did in school to show Aunt Minnie. She framed a couple of pieces. One drawing of a native American Indian Man and Wife she loved so much I gave it her. She was so happy to have it and smiled at me told me I could have back when she died. I told her, "Then I never want it back." By high school we stopped spending summers with our Aunts. We had summer jobs and our Father and Mother divorced.

I would still visit. The years would pass. I would marry and have children. My husband Fred loved Aunt Minnie and would always want to stay at her house in Enid. My son's would love the legos at Aunt Minnie's House. Every summer we would fly in or drive and spend time with Aunt Minnie and Aunt Hilda. A few years ago Aunt Hilda began to suffer from Alzheimer’s and Aunt Minnie would take care of her, making daily trips to feed her lunch. Last September Aunt Hilda died. Aunt Minnie and Aunt Hilda had lived across the street from each other for 30 years. They had been inseparable.

My sister Esther suggested a road trip last spring. Aunt Minnie no longer had someone to care for every day so they could take a trip. I was delivering a speech in Arkansas and Esther thought it would be nice to visit and see my speech. I was so glad to see them there. Even though Aunt Minnie had retired from nursing she still was an active hospital volunteer and was happy to attend a medical conference. She was a volunteer in the ICU dept and her job was organizing the nurses supply cabinet. She also mentored the younger nurses. Even though she was almost 88 her old boss often said she was welcome to come back to work.

I flew out this summer for our family reunion. I borrowed a few of Aunt Minnie’s photograph albums to create an art project for the reunion. Aunt Minnie said, “I am not sorting those pictures out before I die, you’ll have to do that when I am dead.” I told her it would be a shame to take the albums apart. She had done a great job of putting them together.

This fall my mother had a knee replacement surgery. One day Aunt Minnie was taking her to the rehab center. Aunt Minnie fell from the curb while helping Mom into the car. She broke her hip. She had surgery to pin the hip. The pins failed. She went back in for surgery and had a complete hip replacement. The site became very infected. She was readmitted. She had surgery again and the artificial hip was removed. They put her in ICU. She continued to fail.

She decided to enter comfort care in the ICU. This was the ICU she had worked most of her adult life. All of her friends were there. The family stayed by her side all week. My sister spent two nights with her. This evening Aunt Minnie stopped breathing and none of the family was at her side.

But I remember where my Aunt Minnie spent her Christmas’s for oh, so many years. I know she died in an ICU, but she was very much at home.

In Oklahoma tonight, there is a dark house that smells of cinnamon and flowers, where a faint glimmer of the streetlight shines on commemorative plates, upon a wall there is drawing of a Native American Indian Man and Wife. I can almost hear her voice, “Thanks Regina, you can have the drawing back now.”

Thank You Aunt Minnie. I love you.

↧

A March of Happiness:Million Puppet March

November 3, 2012, 8:57 pm

≫ Next: NeuCare

≪ Previous: Dying at “Home”

I have attended quite a few marches in DC. There are often yelling, chanting people delivering soapbox speeches. People press one upon the other, trying to stay upon the sidewalk and not spill out into the street. There are occasional arrests and very few children.

The Million Puppet March was a very different kind of March. People were joyous to be marching, even on blustery fall day. Children swarmed to and fro within the milling crowd. We met in Lincoln Park at 10 am. Our puppet troupe consisted of a lovely neighbor named Renee Dunham (who responded to my posting about the March in The Chevy Chase List Serve),

Megan Mitchell a local high school student and member of The Walking Gallery,

life coach Lauree Ostrofsky and my six year old son Isaac.

We arrived with two suitcases filled with puppets and several other attendees joined our troupe on the spot.

Ted Eytan came with his camera to document the amazing visual opportunity and capture the joy and color of the event. We marched all the way from Lincoln Park to the capitol lawn. At most Marches people are content to swarm upon the sidewalk. This march took to the street with marching drums and puppets over 10 feet tall. Every once in a while folks would burst into song or chant a few times, but for the most part people talked about memories of Sesame Street and the importance of Public Broadcasting.

Several reporters were interviewing the crowd in a very unbiased way, but one gentleman interviewing me seemed angered by the event. I explained the wonderful health education that PBS has provided. I showed him information about the Honoring Choices documentary series in Minnesota. PBS teamed with the local hospitals and due in part to that work, Gunderson Lutheran Hospital has one of highest rates of completed advance directives in the nation. The reporter walked away.

When we arrived on the capitol lawn, songs were sung and our organizers said a few remarks. Then children were invited to the front speak about puppets and public broadcasting. At the end of the event Ted and I practiced our Tedx speech that we will deliver in Detroit on Thursday.

As we practiced, organizer Michael Bellavia walked by with his puppet asking if I was Regina. I jumped up and hugged him saying thank you for all he had done. I enquired about fundraising and learned that they still needed more funds to cover the permitting costs. So I am posting the link once again incase any of you would like to support these brave folks who traveled across the nation in support of puppets and public broadcasting.

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NeuCare

November 4, 2012, 8:09 am

≫ Next: Why I paint on site.

≪ Previous: A March of Happiness:Million Puppet March

When I was little I cherished my Golden Books. I loved their compact shape and brightly colored pages. I would run my fingers over the shimmering gold covered spine of the book. I would beg my Mother to read it one more time.

We did not buy many children's books; we could not afford them. But upon occasion, I would see the Golden Books display in the grocery store. I would plead with my Mother, 'Please could we get one?" She would look down at me with her warm brown eyes and smile a half-smile. I would grasp the book with my pudgy hands filled with anticipation while standing bare-foot on the cool gritty grocery store floor. And she would say, "Yes." That night she would read to my sister and me and we would cuddle against her.

That is what Golden Books meant to me: approachable, affordable and accessible to families. So when I met Dr. Ryan Neuhofel via the internet and heard about the amazing things he was doing in Lawrence, Kansas I painted his jacket with Golden Books forefront in my mind.

Ryan had opened offices using a model often referred to as Concierge Medicine or Direct Primary Care. Now, I know when a lot of folks hear concierge medicine they think of huge upfront retainer fees, brass door handles, marble floors and fine buildings. When I hear the word concierge, I think of the kind hard working folks in an apartment building like mine. I recall all the years when I lived in buildings without a concierge. I remember what it felt like to fend for ourselves, while the hall flooded, the bugs came or packages were returned since no one was home.

My vision of concierge is defined by a sense of pragmatic appreciation, but my son's vision is defined by the bellman's cart. One of the cooler features of living in a building with a concierge is access to a bellman's cart to unload deliveries. We would check out the cart and our son would ride with great joy. That image, in part inspired this painting. This is Ryan's Jacket and it focuses on NeuCare his family practice. It is a vintage jacket and represents a time when house calls were part of life.

In this painting the sky is partially night and partially day. A moon with the face of a clock fills the horizon symbolizing 24hr care. To the far right in the background a home is upon the hill, because Dr. Neu makes house calls. From that house a road winds down into the foreground. Upon the path a group of children are walking along pushing and pulling a bellman’s cart crossed with a little red wagon.

One of these children is a young doctor Ryan he looks with interest at an Ipad screen his patient is showing him. Dr. Neu has an amazing social media presence using Youtube, facebook and twitter with equal competence and joy. The website he built for Neucare has clear and affordable upfront pricing that offers a safety net for so many Lawrence citizens in need of care.

Perched on the cart a young Mrs. Andi Neuhofel holds a pharmacist cup and pestle, as she is the pharmacist at Neucare. Pushing the cart from behind a young boy clasps a few bills in hands as he pushes the cart along. This is the money he has been saving while still accessing the care he needs.

On the weekend of September 21-23 Ryan and Andi took time from the busy practice and their young children, and participated in the Partnership with Patients Summit. Dr. Neu’s speech on Doctors in Social Media was one of the most popular speeches at the summit. Lawrence Kansas is lucking to have this fine young doctor who cares so much about the health of his patients, physically, emotionally and financially.

Thank you Ryan for putting all your energy into creating a care model that is accessible to all and in my mind sparkles just as much as the Golden Books of my youth.

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Why I paint on site.

November 11, 2012, 12:53 pm

≫ Next: Article 7

≪ Previous: NeuCare

I began painting at medical conferences in the fall of 2010. Kevin Kruse who ran ePatient Connections in Philadelphiaasked me if I would deliver a keynote speech. He also knew I painted murals, but wondered if I would be willing to paint on site. Then we could auction the canvases to raise money for the charity of my choice. I chose to donate to Ivymount School as did my husband in lieu of flowers upon his death. The school has has been such a help to my son Freddie and other children with special needs. It was wonderful experience painting on site. Since that event, I have asked to paint at virtually every venue I have attended. I have painted in Australia, Korea and throughout the United States. I have shown up at a great deal of health policy meetings with easel in hand.

But why do I do this?

A Visual Memory of the Day

So many conferences have a similar look about them when photographed. We usually meet in ballrooms; nicely dressed men and women stand behind podiums. Most people show lovely smiles to the cameras, regardless of whether or not their slide deck was filled with horrific statistics or pleasing results. Good or bad, the paintbrush can depict content in a different way. A painting can capture in one quick glance thoughts and feeling that may take an author pages to describe.

Embracing “Free Play/Creative Thinking”

I worked in a preschool for many years. If you are familiar with a preschool room layout, you know there are centers. These centers allow each child to choose a path that supports creative thought, greater understanding of self and the world around them. Some centers use blocks and puzzles, some dress up, some reading/listening and some centers have easels with paint. Have you ever heard the wonderful Tedtalk by Sir Ken Robinson? He says we peak in creativity between ages 4-5. I wonder if we peak then because of the world inside our mind or is it because of the world before our eyes? At most medical conferences (even the ones with the word innovation in the title), I see only one center open: the reading/listening one. I am providing a different learning experience as I set up my easel and paint. Often a small group of people surrounds my easel. Some of them say they wish they could join me. They think in pictures too. Their inspirational thoughts are often relegated to a doodle in the margins of a conference hand out. Sometimes they do join me and paint at my side. I hope some day to attend an event at Health Human Services and see a row of easels behind the last row of chairs.

2011 Regina Holliday at Consumer Health IT Summit 5847

Life is messy and people are unique

I paint from the patient view when I listen to content at a conference. So my painting reflects this worldview. And gasp! I have dirty brushes and permanent pigments (though I have yet to have bad spill in the past two years). I offer some unique challenges for conference organizers. I need to hear content to paint, so upon occasion the venue has strung phone line down a long hall to enable me to paint over a tile floor. Other venues are fine with the drop cloth I provide. I have painted from the front of the room near the speaker and had the audience follow my brush as much they follow the keynote’s spoken word. I have painted in the back of the darkened room; my canvas lit with my trusty smart phone. As we talk about truly inviting the patient to the table of discourse, we must embrace a willingness to think outside the box of traditional expectation.

The Salon

At events that are fairly open in their presentation and organization, I find a community forms around the easel. You see there are many of us in the health tech world who are on the ADHD side, and sitting still is a special type of torture. Well, I stand at my easel and often others stand beside me in the room. I give folks permission to stand out or do things differently by doing things differently myself. As the day progresses people will often drag chairs over and tweet about the event from the art salon that forms around the easel.

Welcome to the Table

I have gone to great deal of events and health policy meetings that are in hotel basements or upper rooms of conference facilities. The tables are arrange in the traditional u or box shape and our names appear on table tents Here I watch the attendees and speakers eyes light up as they realize I am painting their thoughts as I share my own. They come talk to me at my easel and thank me for spreading the word about their work to an ever-greater audience. They tell me how honored they feel to know their words are reflected in paint.

Art as an action

At certain events for some reason or another it is impossible to paint. I always attend such meetings with a sense of sadness and loss. Sometimes, I will show up to a meeting where I am told painting is not an option. Then I must decide. Do I set my easel to the side, sit within my chair and listen quietly? Or do I leave the venue and paint upon the street? I have done both. I meet such interesting folks on the street. I talk with both attendees and a great deal of patients then. The patients had not been invited into the conference but have the most interesting things to say about health and medicine. And I do not mind painting on the street. It reminds me of painting 73 Cents, and after all that is how my painting advocacy began.

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Article 7

November 16, 2012, 8:12 am

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≪ Previous: Why I paint on site.

Dear patient advocates, e-patients and caregivers,

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73.

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

Background:

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants.

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices. Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group.

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact.

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

PWP Notes: (I’ve taken some liberty with order to organize it better)

1) We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2) We need bullet points and consistency of message. Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3) Potential suggestions of these 5 priorities:

a. Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b. Access to patient/clinical data. We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c. Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d. Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4) How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5) Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6) How do we develop/deploy patient “market power”?

a. A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b. Should we host an online petition to represent our numbers?

c. Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7) Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

Possible, sample questions:

1) Do you want to be part of a national patient advocacy group?

2) What should this group be called? (choices a,b,c?)

3) Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

data access

Demand access to your data by USB, CD or download, etc?

dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4) How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5) Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6) Should they be paid? By whom? (choices)

7) How much time can you devote to this cause in tandem with your own work? (choices)

8) What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9) How much do funding limitations impact your capacity to offer the above?

10) If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We love forward to hearing from you! Please post your ideas in the comment section below!

-Pat Mastors and Regina Holliday

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Attack of the Living Meme

November 20, 2012, 9:50 am

≫ Next: The Sleeper

≪ Previous: Article 7

The Holliday family had a great Halloween this year. When my late husband Fred was alive, we had so much fun with this holiday. I always made our costumes and they were very creative, complex and based upon a family theme. There was an Egyptian year, a Marvel year and of course a Halloween theme around Doctor Who. We would trick or treat down the avenue by the toy store where I worked as a happy family.

Then Fred died and it was so hard to enjoy Halloween.

I would do my best to sew costumes with a large hole in my heart. Last year I even missed trick or treating with the kids as I flew cross-country to give a speech in Oregon. But this year Halloween was great! Our theme was internet memes. 6-year-old Isaac was a TNTblock from Minecraft, 14-year-old Freddie was a creepypasta known as Slenderman and I was “Binders full of Women.”

I wore one of my speaking outfits that is reminiscent of a 1940’s cigarette girl. I created a carry tray of binders. People asked me if the binders were full of women. I said, “Yes. Each binder was full of the profiles of women who are SpeakerLink speakers and major voices in Health Information Technology.” Binders Full Of Women was a very popular costume idea this year, but I was excited to wear it because of an exchange on Twitter.

Many of you are aware that the hashtag #BindersFullofWomen became very popular on twitter on October 16^th. The next day I was tweeting from a conference in South Dakota, when I noticed that the mHealth summit in Washington, DC was promoting their keynote speaker line up. I attended and enjoyed mHealth 2011 so I was following their posts closely. I saw pictures of six men who were delivering keynotes, and not one woman.

So I tweeted, "Do not see any Women or Patient keynote speakers at @HIMSS @mhealthsummit mhealthsummit.org #mhealth #bindersfullofwomen #mhs12"

A conversation began about this issue on twitter between Neil Versel and I. Very soon after Richard Scarfo, Vice President of Vender Events at HIMSS Media was messaging me. He wanted to talk about my tweet. We had a phone conversation about the seeming lack of women and/or patient speakers. He told me they had reached out to many women but all of them declined for some reason or another. He told me the schedule was not final and they were still looking for women speakers and would consider my recommendations for patient speakers as well. I told Rich how happy I was that he had responded. I told him about speakerlink. Then I sent him profiles of several very strong women speakers who were patients, caregivers and focused on mHealth.

Soon I was able to tweet the good news. The folks at HIMSS and mHealth were working with me and using @Speakerlink to ensure a greater balance in speakers.

From the profiles I sent Rich, he reached out to the MaryAnne Sterling, a local advocate well versed in elder care and patient data access.

He also contacted Donna Cryer who is Patient in Chief to the oldest and largest advocacy organization focused on needs of those living with liver disease and she has a strong background in HIT.

They both agreed to speak and will present on Tuesday, December 4^th, at the mHealthSummit held at the Gaylord Hotel right outside of Washington, DC. I hope you can attend December 3-5, 2012 and hear their wonderful presentations. Thank you Rich for responding to a tweet and making the world a better place! And for helping me have a very Happy Halloween!

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The Sleeper

November 25, 2012, 6:13 pm

≫ Next: A, B, C, D or F Leapfrog and the Hospital Safety Score

≪ Previous: Attack of the Living Meme

A couple weeks ago, I was listening to NPR and was amazed. Well, I am often amazed listening to NPR, but this was in reference to a specific program. It was Science Friday, the reputable Science Friday and they were discussing crustal displacement theory.

My late husband Fred and I were introduced to the theory through the book Fingerprints of the Gods in 1995. This was a really edgy theory proposed by Charles H. Hapgood. Charles even shared his theory with Albert Einstien in the 1950’s and received his support. Earth crust displacement theory was considered rather odd by much of the scientific establishment. Unlike plate tectonic theory, the gradual movement of the continents, crustal displacement theory supposes that dramatic sudden shifts can occur. Imagine if you will, the sections of an orange floating loose within its peel. Imagine that peel suddenly shifting 155 degrees around. That would be a polar shift. Landmasses would be in completely new latitudes. Antarctica could be temperate.

It was an fantastic theory almost 20 years ago when I first heard about it and I was amazed to hear it had garnered enough scientific interest in the years hence to be debated in the mainstream scientific press. For many years, it had seemed that people were far more comfortable with the incremental change of plate tectonics than the rapid change in perspective required for understanding a polar shift.

I thought crustal displacement theory could easily be applied to the world of health care. For many years the world of medicine was a slow world of focus groups and command and control. But then social media came and the picture began to change rapidly.

Social Media is the reason I know Emily Hackel. She lives in New York and works for Edelman, a global marketing and public relations agency. I met her initially through Twitter. I met her later in real life and she is a vibrant soul who lights up with intensity as she discusses health care.

She just joined the Walking Gallery and her jacket is “The Sleeper.”

I named it thus, because in this painting Emily holds the world dangling on a string. Here is the moment of tension; here is the yoyo move known as the sleeper. It is that moment of taunt suspense before the next move begins and the world spins and shifts upon it axis. Upon this yoyo world the continents are covered with well-known social media sites and the oceans flow with Twitter birds.

When my sister was in high school she wrote an original oratory “Life is like a yoyo, it has its ups and downs.” I thought about that speech as I painted this. In our fast world of social media, I see those ups and downs on a daily basis. I see a world that is very rapidly changing. Ideas and individuals that were considered too edgy are rapidly becoming mainstream.

I am glad to know amazing young women like Emily. I would have never met her without Twitter and its currents. I am glad she lives in time where she can talk about polar shifts and our changing world and be taken seriously.

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