Frederick Allen Holliday, II PhD from A to Z

Last night I posted a reminder that my late husband Fred's birthday anniversary is approaching and wanted to remind everyone to see a film in his honor on March 31st.  A new friend mentioned it would be nice to know about Fred.  So I could right about him.  I could tell you how much I loved the way he made his hand into a puppet.  I could tell you that Fred could recite the entire Star Wars film from memory.  I recount many soulful and deep things about Fred.  But Fred was funny and irreverent.  I thought you might prefer learning about Fred from Fred.

So thank God for the Facebook note memes clogging status walls February of 2009.  We truly cherish this now.

A-z pass along

by Frederick Holliday on Wednesday, February 4, 2009 at 10:20pm ·

Sorry to you all, but I just can't help myself (though I was able to refrain from tagging my dear wife who has made it quite clear she does NOT like these note-memes). This one is pretty self explanatory. If you do it, have fun. If you don't, how can I stop? Please God I wanna stop!

A
- Available: nope
- Age: 38 (for a little less than two more months)
- Annoyance: Mostly myself
- Animal: dogs
- Actor: Right now, Bruno Ganz

B
- Beer: A fond memeory from my past
- Birthday/Birthplace: March 31, 1970, Cumberland MD
- Best Friends: (historically) Alex Hicks, Greg Holtschneider (though the creep refuses to facebook), Jeff Miller, Chris Meissner
- Body Part on desired sex: brain
- Best feeling in the world: Issac and Freddie laughing together
- Best weather: Warm spring Saturday
- Been in Love: Still am
- Been on stage?: yes, I was a theatre major once upon a time.
- Believe in yourself?: yes and no. mostly no.
- Believe in life on other planets: Of course.
- Believe in miracles: define the term more specifically and I'll answer. I've seen some darn strange things, but they just as easily could have been coincidences.
- Believe in magic: no
- Believe in God: yes, but I've got a lot of questions for him/her
- Believe in Satan: yes
- Believe in Santa: no
- Believe in ghosts/spirits: See my answer to the "miracles" question.
- Believe in evolution: without a damn doubt!

C
- Car: 2004 Chevy Cava-something, I don't know cars. We're buying a new one soon.
- Candy: Twix
- Color: oddly enough, olive green
- Cried in school: Ahahahahahahahahaha (that's for all my undergrad friends out there!)
- Chinese/Mexican: wo fei chang xi.huan zhong.guo fan.le!
- Cake or pie: pumpkin pie is the most delicious thing on the whole damn planet! (Apologies to Donkey)
- Country to visit: Britan or China

D
- Day or Night: Night - better TV
- Dream vehicle: don't really have one
- Dance: not if my life depended on it
- Dance in the rain?: nope
- Do the splits?: are you kindding?

E
- Eggs: Over easy, scrambled, or hard-boiled.
- Eyes: Blue
- Ever failed a class? A few. Most esp. high school geometry where I actually competed to get the lowest grade in the course.
- First crush: Andrea Nofziger (age 2 - 6)
- Full name: Frederick Allen Holliday II
- First thoughts waking up: Are the boys up yet?
- Food: meat, glorious meat.

G
- Greatest Fear: something happening to my boys
- Giver or taker: No comment
- Goals: Find more permanent full time work
- Gum: very very rarely
- Get along with your parents?: very much!
- Good luck charm: Russian bill given to me by the great John Carter Tibbetts!
- The perfect Guy: Weirdly, David Mamet

H
- Hair: all but gone... dammit!
- Height: 5'8"
- Happy: varies
- Holiday: Christmas, though the reason has shifted in the last decade
- How do you want to die: while sleeping
- Health freak?: Not as much as I'd like, though better than I used to be.
- Hate: the inability to value an opinion different from one's own.

I
- Ice Cream: cookies'n'cream
- Instrument: none

J
- Jewelry: Wedding Ring
- Job: Best one in the world!

K
- Kids: 2 great boys!
- Kickboxing or karate: neither
- Keep a journal?: no, my memory's currently pretty good.

L
- Love: Reg, Reg, Reg. She's taught me all I know about it.
- Letter: F (it has so many uses)
- Laughed so hard you cried: Issac: "I not nice. I ANGRY!!!!!!!!"
- Love at first sight: Actually, yeah. It's how I fell for Regina.

M
- Milk flavor: I no longer drink milk
- Movie: Changes from minute-to-minute
- Mooned anyone?: Good God no. That wouldn't be good for anyone!
- Marriage: 15 years last 12/26
- Motion sickness? no
- McD's or BK: FIVE FRIGGIN' GUYS

N
- Number of siblings: two, though we barely speak.
- Number of piercings: none
- Number: 24fps

O
- Overused phrases: Know what I mean?
- One wish: happiness for my boys
- Phobia: Too many to list (highlights: heights, tornados, social situations, small spaces)

P
- Place you'd like to live: NYC - for a little while anyway
- Perfect Pizza: Armands
- Pepsi/Coke: I no longer drink soda

Q
- Quail: Yummy, but a rare meal for me.
- Questionnaires: Revealing and fun. Also: annoying.

R
- Reason to cry: Oh I don't know.. maybe a friggin' broken rib!
- Reality TV: I'd rather take a melon-baller to my eyes!
- Radio Station: WAMU
- Roll your tongue in a circle? Yes.

S
- Song: New Years Day and Don't Change
- Shoe size: 9 1/2
- Salad Dressing: dry please
- Sushi: yuck
- Skipped school: Oh my yes. My undergrad GPA is shameful as a result
- Slept outside: only when I have to
- Seen a dead body? Yes
- Smoked?: Nope
- Skinny dipped?: Nope
- Shower daily?: Yes
- Sing well? Oh no. No no no.
- Stuffed Animals?: When I was a kid I had an entire rep company.
- Single/Group dates: Both
- Strawberries/Blueberries: Strawberries, but no damn sugar thank you.

T
- Time for bed: varies, but usually 12 or 1
- Thunderstorms: hate them with the white hot fury of fear
- TV Show: Battlestar Galactica
- Touch your tongue to your nose: Not even close

U
- Unpredictable: you never know.

V
- Vegetable you hate: pickles
- Vegetable you love: lima beans (Yeah, I said it!)
- Vacation spot: For the last 8 years or so, Enid Oklahoma -- the second coolest non-east coast place in the US!

W
- Weakness: disorganization
- When you grow up: When will that finally happen? For the love of God when?
- Which one of your friends acts the most like you: Thankfully, none. They're all better than me.
- Who makes you laugh the most: Issac
- Worst feeling: fear. it rules me.
- Wanted to be a model?: Yeah. the "Before" guy.
- Worst weather: Tornado season

X
-X-Rays: Inconclusive. Dammit!

Y
-Year it is now: 2009
-Yellow: A great episode of TALES FROM THE CRYPT directed by Robert Zemekis (SP?)

Z
- Zoo animal: Panda (Go DC!)
- Zodiac sign: Aries... whatever the hell that means

Wind of Change

I met Amy Cueva almost three years ago. I was presenting my first speech at a health care conference in Washington, DC. MY friend Ted Eytan, MD asked me to join his panel presenting a patient view in medical care. Another friend, Cindy Throop, kindly helped me with the power point, as I had never created one before. During my short speech I poured out my soul before a room containing more empty chairs than filled ones.

Amy cried that day.

She walked over and embraced me. Then she told me that she was working at the intersection of health and design. Over the years she kept in contact via Twitter and occasionally I would participate in a in a conference call with her and her team at MadPow. Recently, she asked me to attend her annual conference: Health Experience Design 2012 or #HXDconf as it was known on twitter. I would paint and speak.

This is the painting I created yesterday "Wind of Change." It was inspired by several speakers who presented in Grand Ballroom A.

Typically, when I paint at a conference I will either be in the back of the room by the exit door next to the camera crew or towards the front of the room by the stage. #HXDconf was not the typical conference.

Apparently, the hosting hotel had just installed new carpet and did not want me to paint at all. The MadPow team fought for a month for my inclusion. They reached a compromise by placing me on tile floor covered with protective plastic approximately 200 feet away from the conference space. I looked at the placement and said it would not work, as I would not be able to hear the speakers. The hotel staff strung cable along the hall to connect me to the audio feed.

That was the best they could do and I began to paint.

Amy started off the day with a strong welcome explaining her drive to create a better health experience for us all. She then made a statement that defined this painting: “Technology and design should be the wind at your back, not your face."

I then began painting Amy using the elongated form often reserved for depicting the divine. She stands firm with a determined face, the wind at her back and a banner in her hand depicting her quote about technology. In the background the sky roils with dark clouds driven by the winds of change. She stands tall in the middle of the path of technology. Her shadow looms long and exists beyond the page, for that which is done today shall repercussions for many tomorrows. 

To her left is the next speaker Robyn O'Brien who told us about Allergykids and the Unhealthy Truth. Robyn was just a regular mom and food analyst until her child became allergic to certain foods. Now she is a righteous warrior in the battle against unhealthy foods containing pesticides and growth hormones. She is looking for other advocates who will join her team. In one hand she holds an apple representing the healthy food we need to eat. This apple also represents the knowledge that we must attain about what exactly has been done to our food supply. Her other hand reaches out to Amy, as Robyn would like to meet others also determined to create change.

To Amy's right is Tim Kieschsnick whose speech was entitled Data are People too- Visualizing the new Health Care Reform Consumer. He focused on the outreach that Kaiser Permanente is doing to provide care for American's previously uninsured. He asked for a show of hands of the uninsured attendees.  He was pointing out that the uninsured in the room may be sitting next to you, or they may be you. I depicted Tim as the patient in the room. His back is to the viewer, his gown gapes. He is anonymous, except for the mirror in his hand that allows us a glimpse at the reality of the uninsured.

To Tim's right stands Alex Drane, as sexy as her speech: Talk Health to me Baby. She pointed out that health care spends relatively no money in marketing itself to consumers, while tobacco and soda spend quite a bit. When health care does market itself, it is usually with un-sexy, vanilla, boilerplate imagery. So Alex stands provocatively within this painting baring some inner thigh, wearing paten leather boots that reach her kneecaps. In one hand she holds a plate with a single marshmallow, referencing the marshmallow experiment on self-restraint that she referenced in her speech. In the other hand, she holds a magnifying glass up towards the patient, representing all the magnifiers that are affecting the patient's health.   

What does art have to do with medicine?

View more presentations from Regina Holliday

To the far left of the painting I stand in my Little Miss a-Type personality Walking Gallery jacket. My hair whips behind me and my arms are upraised. I am asking you to join me. Become a paintbrush warrior. As Don Fluckinger described me on twitter, "preaching HIT fire and brimstone."  As my speech continues my volume increases and makes its way into ballroom B where some attendees hear enough to want to leave that session and come to mine. I end with a call to action: invite patients to conferences and thereby artists and poets as well. Embrace true disruption of the model of medicine that does not include the patient voice and occupy healthcare.

Finally to the far right, Todd Park marches and beats the HIT drum. His speech received a standing ovation: Unleashing The Power of Open Data and Innovation to Improve Health. I was told he jumped on the stage, he vibrated with energy and spoke of data liberation with the joy of a true believer. He then closed his speech with the story of his daughter's open-heart surgery.

That is the story of Wind of Change. And in case you ever wondered if God has a sense of humor, the wind of a cold Boston day blew at me throughout creating this entire composition. I was painting next to a building exit.  At one point the wind was so harsh that it broke the pneumatic hinge on the outer door. In addition to being very cold, I would have to hold canvas in place each time the door was opened or it would be blown off the easel.

As the conference day ended, I continued painting far away from the milling crowd.  A few braves souls crossed to long expanse and met me at the easel and we spoke of art and design. Juhan Sonin was the most apoplectic in his dismay.  "This was a design conference," he said. "How could a design conference accept this poor placement of an artist by a windy exit." I commiserated with him and said, it is okay it reminds me how it feels to be a patient: alone and ostracized with the wind in my face. I paint beauty from tragedy and grow stronger through adversity.

I am buoyed, and not bowed, by the winds of change.
            

HHS Mobile Device Roundtable

In 2008, I swore I would never own a cell phone.

I saw no point in them. If someone needed to reach me. they could call me at work or at home. If I needed to find a phone number, I would look in the phone book. If I needed to take a picture, I had a Kodak camera.

Then Fred became ill.

Then I could not work and I rarely went home. Then I would try to coordinate cancer care and childcare from the corded phone in my husband's hospital room and find it an impossible task. I bought my first cell phone and began to learn the power of mobile technology.

After Fred died, I began to work as a patient advocate, As I spent days away from home without computer access. As I learned more about twitter and saw the potential power of the conference hashtag in supporting patient rights, I upgraded from a cell phone to a smart phone.

Now, I use mobile devices constantly for communication, support and research. My phone is my flashlight, my camera, my computer, my calendar, my calculator. It is even my alarm clock.

So when I heard HHS was doing a Mobile roundtable I thought I must go. I live in DC, so I often attend meetings to fulfill my duty and mission to promote patient centered care. I have attended many roundtable talks. Most often these events are not conducted in the round either in physical design or in in a sense of well-rounded intellectual variety.

I have attended many events at HHS and some were almost magical in their appreciation and inclusion of the patient voice in Health Information Technology. On March 16th I attended the Mobile Devices Round Table at HHS. I attended as a member of the press since I blog a great deal on topics as they apply to HIT.

This meeting was not magical, although it had some memorable moments. As a matter of fact, it reminded me a a nursery rhyme that always puzzled me as a child.

"Mother may I go out for a swim?
Yes, my darling daughter,
hang your clothes on yonder branch,
but don't go near the water." -Best Loved Nursery Rhymes

You see, it was a roundtable on Mobile Devices Real World Usage and Real World Privacy and not one patient was presenting from the dais.

The day began on a high note with an enthusiastic welcome by Farzad Mostashari, MD National Coordinator for Health Information Technology. He managed in ten minutes to speak about prevalence of mobile adoption. It is a tool of the masses, embraced by the soccer mom, retail clerk, ivy league scholar and the homeless men in the park down the street from my apartment. It is ubiquitous. He also addressed privacy concerns as health professionals begin accessing patient information using mobile devices, but he did it in an even-handed manner that was more hopeful than concerned.

But then the first panel began and the audience settled into a warm stupor of being talked at rather than taking part in the conversation. Joy Pritts, JD, Privacy Chief at ONC was the moderator. All audience questions were submitted on paper cards and vetted. This panel focused on oversight and and it was quite the alphabet soup of governmental representatives. Tim Grance from NIST, Cora Tung Han from the FTC, Geraldine Matise from the FCC, Susan McAndrew from the OCR and Bakul Patel from the FDA spoke at length about device oversight using their various systems of government. Cora shared some of the more memorable examples of fraud in app design highlighting their action against an app said to treat acne using the glowing light of the cell phone.

The next panel was moderated by the amazing Jon White from AHRQ. He was understated and hilarious. He managed to reference Monty Python and Saturday Night Live while questioning the panel. I laughed out loud while those around me looked up in confused silence. This panel was focused on the real world usage of the healthcare provider. The panel consisted of Jacob DeLaRosa, MD from Portneuf Medical Center, Steven Jeff Heilman, MD from Norton Healthcare, Meri Shaffer, RN from Montefiore Home Care, Lisa A. Gallager from HIMSS and Christopher H. Tashjian, MD from River Falls,Ellsworthh and Spring Valley Medical Clinics.

Christopher Tashjian was amazing. He spoke frequently from the patient view. He used real world examples of mobile device usage with cloud based EMR providers. He made clear how easy it was to access his files remotely. He may be practicing in Wisconsin and his patient data remotely stored in Kansas City with Cerner, but in his practice it is only a few finger swipes away. At on point he even stated, "I want my records, no let's be honest, it is the patient's record."

(I did do a little cheer at that statement to consternation of my fellow press members.)

Then it was break. I looked at the time on my phone, as I have stopped wearing a watch. I should probably head back early to my paint brushes and my writing. Before leaving I went over to Joy Pritts from ONC. I told her I was disappointed no patients had been included in this event. She told me there was going to be national focus groups working on that. "Oh, will those be open to the public?" She asked in return if I understood how focus groups work. I responded I was pretty sure I did, so what then were they doing that involved the patient viewpoint on mobile devices in the public arena?

Joy looked at her staff. The staffer responded that probably Lygeia Ricciardi was working on that. She could introduce me. I told her not to worry, I knew Lygeia well and turned to go.

It wasn't hard to pack up my gear I wasn't allowed to paint at this event. I gathered my Ipad and smart phone and thought about what was missing this day. It was missing a soul. It was missing the heartfelt reality that a patient brings to the table. I had spent the last two hours hearing about easing provider labor and app fraud, while I was yearning to hear from the man who triaged himself in Haiti using a first aid app
or the first responder in Kansas city who can pull up a patient EMR in the field due to the adoption of the Cerner Smart Card.

I wanted to learn about real world usage mobile devices, and I wanted to see how privacy is valued by patients when their life hangs in the balance.

Perhaps some day I will.

Just a Picture of Health

Cherry Blossoms fill the air and bedeck my walking path. Whilst the tourists fill our fair city with pointing fingers and camera straps, my thoughts turn to death.

It is that time of year again: Fred's dying time. Three years ago today, Fred was admitted for tests. Three years ago he walked into a hospital, and I thought he was safe. I thought I could leave him in good hands. I thought I could take care of our children and work at my job.

But they broke his heart. They promised to treat him and did not. They left him alone without information and filled with false hope.

They lied to a dying man.

He was so young to die, only 39. Month after month, he worked at his job. He walked to his class. He did not look like he was so ill. We did not know an invisible killer was eating him up from inside. He had lost weight, he was becoming fit.

I thought of all of this as I painted Jenny's Jacket: "Just a Picture of Health."



Do you know Jenny Pettit? She is a blogger and advocate. She was diagnosed with the autoimmune disease Sjogren's Syndrome when she was only 15. She had pain symptoms since she was two years of age. She spent most of her youth fighting off illness. Her parents sought treatment and diagnosis for years to no avail. Then a bright sunny beautiful day, a happy day like within this painting, Jenny was out in the sun too long. Some of her hair fell out and she experienced severe dehydration.

Then Jenny went to college at Villanova and dove into activism. She worked with the university to create and promote awareness of invisible illness. Due to her extensive personal experience she focuses much of her advocacy on the perception of young adults with disability and workplace issues. A few years ago she started her first Facebook group: UII - Understanding Invisible Illnesses group. She continues to develop this needed resource and is currently seeking 501(c)(3) status. She has fully embraced social media in her pursuit of health advocacy using Twitter, Blogging and working with Wego Health.

She looks so healthy, just like her jacket.

I know what will happen when Jenny wears her jacket. People will pass by and compliment its beauty. People will think it is a happy painting. But some will stop and stare. Some people will look deeply and see the path is filled with young women like Jenny in contortions of pain.


You see Jenny is one of the brave ones, the ones who advocate while they suffer. She will walk this path no matter how much it hurts in order to help those that follow her. She will walk among the cherry blossoms, knowing all while they smell of heartbreak and pain.

The Patient Panel

For many years patient advocates have worked on greater presence of the patient view in medical conferences both as presenters and attendees.  Some of us have pushed even further and asked to be part of the planning stage and design of events or care systems.  Many of us have fought for years for mere inclusion. 

But the time has come for more than just inclusion.  I have attended far too many events that take a step toward including patients where they give us a panel at some odd point in the day or in a basement side hall.  I have watched rooms, once filled while the provider panel spoke, empty out as the patient panel begins its presentation.  The conference attendees congregate in the hallway drinking coffee and networking while patients speak to half-empty rooms.

Patients’ panels are not just an extra coffee break.

There are people and organizations out there fighting hard for patient inclusion.  One of these organizations is TMIT (Texas Medical Institute of Technology).  They have been working for more than a year on a healthcare documentary for the Discovery Channel called Surfingthe Healthcare Tsunami: Bring Your Best Board!™  They will premiere that documentary on Friday, April 27^th, in Washington, DC.  The documentary will be shown at a private screening at The National Press Club from 8:00am -10:00am that morning.  Then it will be shown that evening from 6:30-8:00pm as a public premiere with attendees who were in the movie, collaborators with TMIT, and limited general admission.

The film will introduce and close a day devoted to the positive role HIT can play in medicine and patient communication.  There will be a patient panel, and it will be integral to the flow of the meeting.  The entire Patient Safety and High Performance Leadership in Health Information Technology Summit will be live-streamed and the twitter handle is #HITTMIT.

Please save the date. If I do not see you there in person, I look forward to reading your tweets.

Out of Reach: a jacket for JoAnn Klinedinst

JoAnn Klinedinst strides tall through the corridors of HIMSS.  She is the Vice President of HIMSS Professional Development.  She is accomplished and muti-talented, able to compose works of great beauty with the keys of a computer or the keys of a piano.  She holds multiple degrees, and not much in life is out the reach of JoAnn.  But this was not always the case.

This is JoAnn’s jacket for the Walking Gallery: “Out of Reach.”

When JoAnn was a little girl she ran and played like other girls.  When she was nine years old her stable world was rocked with a diagnosis. Her mother had MS.  JoAnn’s mother was only 38 year old and terrified. 

When JoAnn was 11 her mother could no longer walk, and she was confined to a wheel chair.  Little JoAnn had to take on adult responsibilities.  Her father worked during the day and cared for his wife at night.  JoAnn would do the cooking and cleaning and the shopping for the family.  He mother would send her to the market to get cheese and meat.  The counter would loom high above her and she could not see over it.

There I stuck her in a painting.

She is always reaching and is too small, whilst her mother’s shoulders hunch in sorrow for her little girl.   This was not the way it was supposed to be.  JoAnn should have her parents at her side.  The mother should walk with pride those few steps to the counter.  The world should be a brighter place of with sunny years filled with school concerts and two parents clapping in the audience.

But that is not JoAnn’s story.  Her story is standing tiptoe to reach up to a counter and returning home to mother who cannot do all the things that mothers do.

The years past and JoAnn married at 19 with her mother’s blessing.  “Go, live your life, “ she said.  JoAnn moved to Chester County, PA and she went to college.  After four years she graduated and both her parents attended commencement exercises.  JoAnn was so happy. 

The years went by and JoAnn had two children of her own.  She would gather up the children and “Grannie” for field trips to the Mall.  Toward the end of Grannie’s life, she was confined to a nursing home.  Her body was now paralyzed but her mind knew no bounds.  It would soar, her beautiful soul brought joy to all those around her.

JoAnn’s mother left this world on April 11, 2008.  She left a prison of pain and paralysis.  She left a little girl, now a woman grown.  She left a little girl who could play a piano.  She left a little girl who loved her so.

That little girl walks the halls of HIMSS inside a woman’s body, and nothing is out of reach for her. Nothing.  And she will dedicate all her days to helping little girls and mothers in their patient journey and she will do it with the music of data.   

The Birth of an e-Patient

I met Ileana Balcu or @yogileana at HIMSS12 in Las Vegas and I handed her gallery jacket. 

I met Ileana and looked into her kind eyes and held her in my arms.  She sat within my session room all day and never failed to ask the most piercing questions.  She would speak slowly and with great determination and a slight accent. Some might think she and her questions could be brushed aside; after all, she is only a patient. Some might think her soft, yet she is as unbending as steel.

And she is so very brave.

For many years, she wrote a blog called: “Beating Social Anxiety.”  On that blog is post after post of Ileana coming to grips with asking questions in public.  It details the extreme stress she feels when asking questions of simple service personnel, let alone authority figures. 

This beautiful soul, always the outsider, was willing to wear a painting on her back depicting worst moment in her life in a room filled with strangers while asking tough questions about healthcare.

This is the patient story of Ileana.

There is a bible of expectation that many pregnant mothers read.  It tells us to avoid caffeine and eat whole gains.  It tells us all about the wonder and joy of carrying a child.  It tells us to avoid reading the back of the book where all the complications are explained.  We should avoid the extra worry that reading will bring unless we already are having problems. 

But who tells we are having problems?

Ileana Balcu was nearing her sixth month of pregnancy when her blood pressure began to rise.  Things were said, comments made, but the veiled innuendo of worry did not permeate Ileana’s happiness and denial was easy.  She and her husband were not told to monitor Ileana’s blood pressure or watch for certain symptoms. 

They did not know what to expect.

On Valentine’s Day nine years ago, Ileana’s heart was broken.  Whilst you and I ate chocolates or went to our children’s school parties, Ileana was in the hospital horrified at what the nurse was trying to tell her.  She must deliver immediately as she was suffering from preeclampsia.  Her husband was taken aside and told by the attendee that they would do everything in their power to save Ileana’s life.  At that moment he realized that he might lose his wife and child.

Their little Angel was stillborn at 24 weeks.   Ileana and her husband went home alone without their firstborn son.

In her sorrow, she sought out answers.  She joined a wonderful patient community at preeclemsia.org  She found doctors who specialized in her condition and worked on creating a database of information on early onset preeclampsia.  After three years of research, she and her husband decided to try again as fully informed parents.

They sought out a treatment team consisting of a PCP, specialist and a high rick OB.   Ileana insisted on the best care, often shuttling records herself from practice to practice. She was horrified that often computer systems did not work with one another inside of the same hospital.  She charted her blood pressure and was aware of every nuance of her body.

Robert was born at eight months and now is a healthy and happy six year-old.

A new Ileana was born as well; she was now an e-Patient.  She had walked through the crucible and came out the other side.  She would spend the next years studying HIT and defeating her social anxiety so she could advocate for others.  She would do everything in her power to stop the suffering.

She would blog.  She would tweet.  She would stand before us all asking such powerful questions. 

Yes, Ileana is so very brave and we are all blessed to know her.

The Island of New Jersey: HIMSS day 2

I rose early on February 23^rd and weighed down with luggage and painting gear trudged through the hotel lobbies and casino floor to the room in which I would be presenting my speech at HIMSS.  As I walked along, I noticed that the man in front of me had the tailor’s tacking stitches still in place on his suit.  I mentioned it to him and he thanked me profusely as he wanted to make a good impression that day.  Not long after, a woman mentioned to me that my large backpack was causing my skirt to rise in the back.  I readjusted skirt and bags and thanked her.  My son would say that’s karma.  I would say it is taking care of one another.

I was so excited to see many members of the gallery filing in to attend my session and was uplifted by their well wishes

As I arrived in my presentation room, I said hi to David Collins from HIMSS.  Then immediately began setting up my easel to paint that day.  I was the first Keynote in the session called Leading From the Future. Fellow Walking Gallery member Donna Scott introduced me.

Dr. to Dr.

View more presentations from Regina Holliday

I presented my speech combining together our personal patient story with the world of HIT using icons of pop-culture and images of art. 

The next keynote was Regina Benjamin, and I painted her Journey to Joy.

Soon there was a break for lunch, which I enjoyed in the company of Mary Ann Sterling.  Then I ran over to the room where Todd Park was supposed to speak, as I wanted to hand him his gallery jacket. 



When I arrived I saw Wil Yu from ONC speaking with HIMSS Staff and I asked if I could hand Todd his jacket backstage. 

They thought it would be even better if I handed it to him onstage.  So I surprised Todd with his jacket right before he began his speech.  It was a beautiful moment.  Then I went back to paint the next panel at in the Leading From the Future venue.

I began the painting “The Island of New Jersey” based on the presentation "Creating a Framework for Patient-Centered Health Information Exchange."  Linda Reed, RN, MBA, FCHIME, Vice President/CIO, Atlantic Health System, Robert Irwin, CIO, Robert Wood Johnson University Hospital and Lou Hermans, VP & CIO, JFK Health System delivered this presentation.  

I listened to member after member stress the name New Jersey far more than the concept of HIE (Health Information Exchanges) and so I began to paint a lonely island.  The focus of the speech was supposed to be: “The exchange of health information is important to our healthcare system, but more important still is helping patients become engaged, active participants in their care. As organizations exchange information, how can they ensure that the patient remains at the center of the HIE?“

Well, that was supposed to be the focus…

I began by painting a patient in the center of the island.  He looks slightly worried and is holding a puzzle piece.  He is the missing piece of the puzzle of HIE.  The panel spoke of the importance of e- prescribing, and coordination of the care team and so I began painting pills and doctors.  Then they spoke about the importance of some kind of patient portal and I painted a laptop computer, the blue button symbol and a scrolling patient story.  One member stated that patients could provide another set of eyes if we just let them see the medical record.  I painted a set of eyes to represent this concept.

Soon Q & A began and things got really interesting. 

Ileana Balcu or @yogileanna asked questions from the audience about the poor communication of the current system.  The panel answered broadly suggesting portal solutions for facilities in general.  Ileana then made it very clear that she was a patient in New Jersey using their system and it did not work well. 

The conversation devolved into a conversation about legal ramifications of data sharing and a lawyer entered the picture.

Then a member of the panel uttered the phrase I absolutely detest: “Patients need more skin in the game.”  So I wrote that phrase upon the Island of New Jersey.  Then I painted skin.  I painted skin around the eyes above and surrounding the blue button.  Now it seemed as though the blue button was less of a portal, than it was a ball gag wedged between the lips of a patient.  It is not enough to pour data into us; we must be able to respond back. 

An HIE must function as an exchange between provider-to-provider and patient to provider.  The data waves pound upon the Island of New Jersey and surround it.  How will it communicate with the outside world filled with patients?

Next Mark Scrimshire, co-founder HealthCamp Foundation spoke about the intersection of social media and patient engagement.

Empowering Health Care Engagement

View more presentations from Mark Scrimshire

He described a new concept called AEIOU a recipe for engagement.  Actionable, Easy, Immediate, Open and Unobtrusive. So in the painting I created #HIMSS12, a ship of social media propelled by the twin sails of facebook and twitter.  Upon the ship a patient reaches out to the island of New Jersey and tries to communicate.  The ship is embraced by the data waves. 

Finally Rick Skinner, VP/CIO of Cancer Care Ontario, Cancer Care Ontario finished the day by telling us about healthcare providers who are engaging their patients through social media and other strategies.  Then the attendees filed out of the room.  I spent the next hour finishing the paintings as the tech team worked around me on the next day’s presentations and the custodial staff threw away the detritus of a conference.  Around 6:30pm I cleaned my brushes and said good-bye to the nice fellows running the sound system.  I was alone with my luggage preparing to spend an evening in the airport before my red-eye back to DC.

Then Antonio Fernandez from the Puerto Rico REC called me.  He asked if I would join the Puerto Rico team for dinner. I said yes and we had a lovely evening talking about what health is all about: friendship and community.

Ashes: HIMSS Day 1

I left for HIMSS12 conference in Las Vegas on Ash Wednesday. 

My flight was at 5:45 in the morning.  I knew I would be spending my entire day at a casino hotel, so I went to get ashes from my Pastor on Tuesday.  I had helped our Church Vicar Cassandra Lamb the year before with the Imposition of Ashes at a local metro stop.  So I felt I could take the “ashes to go” a step further and bring it them to Las Vegas.

You do not blend into a crowd, even in Vegas, with ashes on your face and a painting on your back.

I was not the only person standing out within the crowd; there were several walkers from The Walking Gallery at HIMSS.  They stood out with their declaration of faith in a concept.   They believe that the patient voice must be heard within the halls of medicine and technology.

There were at least 25 members of the Walking Gallery wearing patient advocacy jackets at HIMISS.  As one of my friends quipped we are the 1%.  We were more like the .1% of the 37,000 attendees.

JoAnn Klinedinst, Ileana Balcu, Liza Sisler, Sue Woods, Matthew Browning, Todd Park, Ross Martin, Kym Martin, Colin Hung, Sherry Reynolds, David Collins, Brian Ahier, Gregg Masters, Janice McCallum, Jane Sarasohn-Kahn, Mary Anne Sterling, Dave DeBronkart, Paulo Machado’s, Keith Boone, Kourtney Govro, Lizzie Dunklee, Donna Scott, Mark Scrimshire, and Lygeia Ricciardi were there representing the patient voice. 

We might have been a tiny fraction of all the attendees, but we were noticed. 

The conference space itself was a mammoth construct of hotel wings built one upon the other in an endless maze of hallways and dead-ends.  I was carrying the weight of 10 jackets upon my back for most of the day so the endless circuitous paths were quite tiresome.   I hope that the EHR designers that roamed these endless halls took this lesson to heart: overbuilt structures and switchback paths are not welcome in the world of the weary traveler or the world of data.    

After securing my name badge, I hurried out the exhibition floor.  I saw a lot of booths.  Some had candy, some had cars, some had “booth babes” and some had all three.  Everywhere I turned the air hummed with electricity and the visual field was dominated with computer screens.  It was a very large exhibition floor, and many venders were so busy that I passed through their stalls without remark.

That being said, I had some lovely conversations with folks in several booths.   I spoke at length with Clay Patterson from Cerner about the potential of patient portals to improve health and wellbeing.  Also in the Cerner booth they had healthy snacks and water, which I relished a great deal.  I stopped by AZZLY too to see Turner Dean, and met with him later that evening as the Walking Gallery gathered.  I met Liza Sisler in the Microsoft booth and had a heart to heart conversation with Judith L. Kolde about patient care at end of life.  Then I gave Liza her jacket for the gallery.

I met Jerry Faiella in The JACO booth and we discussed the hygiene advantages of powder coat steel C.O.W.S  (computers on wheels).  I also spoke with Bill Rizos from afc industries, inc. and our conversation encompassed HAI to HIE.  I also got to speak with the nice gentlemen in the Hospira Booth.  Steve Severt and Roddick Adair explained the wonders of IV clinical integration as I praised their pump as the best we had used when my late husband was sick. 

I spent time with several members of the Society for Participatory Medicine discussing patient advocacy and painted stories.  Dirk Stanley, MD has a background in art and we began a very technical discussion about paint quality.  That was super cool.  





Then Keith Boon introduced me to me to his friend who is part of one of the stories depicted on his back.  Keith noticed the ashes on my forehead and said, “Oh no, I forgot it was Ash Wednesday.”  I said “Keith, I have ashes with me.  I am Lutheran, would you like me to give you the Imposition of Ashes?”  He said yes and I spoke the words, “Remember you are dust and to dust you shall return.”  We then parted ways and each of us went to advocate for the least among us.   

Many of us met later that evening in a small gathering of the gallery. It was so good to spend time together discussing our individual missions and our combined goals.

At the close of day, I walked and walked through endless halls and smoky casino rooms to find a taxi to take me to my hotel.  The line for taxis stretched around the block, but near the front of the line I saw my friend Antonio Fernandez from the Puerto Rico REC.  He hugged me warmly and we shared a cab.  He too saw my ashes as we parted and I assured him what was on one’s face was not as important as what was in one’s heart.

I went into my hotel tired in body but refreshed in spirit as a loved and loving member of The Walking Gallery.

Journey to Joy: Painting Regina Benjamin, MD

On July 13^th 2010, I met Surgeon General Dr. Regina Benjamin.  She stood at the podium and explained from the provider perspective the importance of electronic medical records in clinical practice.  Moments later I stood in her place and spoke about the importance of access to the electronic medical record from the patient perspective.

That day was the announcement of stage one Meaningful Use.

Based on her account on that day I painted a picture upon a jacket.  For over nine months Ted Eytan, MD has worn that story on his back to venue after venue.  His has told many of the powerful work of Regina Benjamin, primary doctor.

On September 13^th 2011, I met Regina again.  She was onstage at the ONC Consumer e-Health Launch.  That was a magical day.  On that day the patient stood front and center.  I stood in the back of room and painted speaker after speaker as they addressed the need for patient participation in healthcare.  An entire panel of patients sat upon the stage.

I painted joy that day and Dr. Regina Benjamin was in the middle of that joy.

Afterwards she came to my easel, she was so happy to see the resulting painting.  A few weeks later, I walked to the metro with the painting in hand.  Then took the train to the closest Metro Stop.  Then walked to HHS.  I think Regina would appreciate my healthy journey to deliver the painting.  I left the art in her office on loan and in good hands.

On February 23^rd, 2012 I greeted Regina once again.  We were at HIMSS in Las Vegas and would both be keynoting the opening session of Leading From the Future.  I spoke first and mentioned her within my slides.  Then I descended from the stage and Regina began to speak.

She took us on a journey filled with words and pictures.  As she spoke, I began to paint.



She told us she lost her paper medical records twice to flood waters and once to fire.  She explained how she and her staff lay page after page of medical records upon the sunny ground surrounding the practice.  Ah, the bravery of this woman! When others might fear a HIPPA violation, and so let such data molder, she did all she could to help her patients maintain their treatment history.  She said that after the hurricane she had no prescription forms and tore up pieces of bond paper and hand wrote prescriptions.  Many of her patients had no funds for food let alone medicine.  She covered the cost of many of those prescriptions herself.

So in this painting, Regina holds her torn prescription sheets and they fly around her to become the data that fills an EHR.  Behind her blue water flows upward, a red ribbon of fire destroys the paper past and green data streams save lives.

As she said that day “An EHR means never having to dry wet charts in the sun again.” 

But Regina speaks of far more than data, she told us about her better health campaign.  She wants to increase the health level of patients at every stage of life.  She told us we must not focus on what we can’t do; instead focus on what we can do. 

We must start our journey to joy. 

She said one in four American’s do not know that they have diabetes.  She said we must become aware of our health status and we must learn about our family medical history through generations.

She addressed the power of social media to spread the message of better health.  She spoke of a partnership with Facebook to report suicidal comments.  She explained that she had recently joined twitter as @SGRegina and participated in a heart chat that reached over three million people. 

She spoke about reason some women forgo exercise and said it was okay to have a “bad hair day.”  As the daughter of her hair stylist, Regina was well aware many women were not getting the exercise they needed, as they were concerned about maintaining their hairstyles.  Some people may consider this a “soft” issue, but women must often choose between economic viability and exercise.   If that is the choice, most women will choose to look professional and maintain employment. She also spoke of her continuing outreach to hair stylists as health ambassadors.  People see their hairstylists and barbers often.  She said hair professionals could be a great resource for promoting public health. I was so glad to hear this, as I am very aware of the palliative effect of hairstyling.

After her speech, we both stood upon the stage and answered question after question in tandem.  It was beautiful. It was participatory medicine at its finest and I am so honored to join Regina in her journey to joy.