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Friday, July 23, 2010

Let's change the Face of health care

On May 27th 2009, I met a group of amazing people. We had a health 2.0 meeting hosted by Christine Kraft. On that day Fred was in hospice and my life was at a crossroads. I was still a wife, a toy store clerk, and a sometimes artist. In three days I would be placing my first mural in the medical advocacy series. I met that day a group of people who would support me as I entered a new life of an art/health activist widow. I met Cindy Throop, Susannah Fox, Claudio Luis Vera, Nancy Shute, Dave Debrokart (By phone), and Ted Eytan, MD.

And that made me think about Stephen King’s Dark Tower books.

If you have read the Dark Tower series you are familiar with the concept of Ka. It is described as a controlling force in our lives. Call it destiny or fate, or even call it God moments. It is the energy that brings us together on the path of our life. My husband Fred loved this concept so much that his screen saver on his computer endlessly scrolls, ”All things serve the Beam.” And within in the concept of Ka, exists the idea of Ka-tet. A Ka-tet it a group of individuals brought together by Ka. They walk same path of the beam towards the Dark Tower. They are one from many. In Stephen King’s Dark Tower books his Ka-tet consisted of Roland- the Gunslinger, Jake Chambers, Eddie Dean and Susannah Dean. They are on quest together. They are Ka-tet.

On May 27, 2009 I found my Ka-tet and the quest was called 73 cents. Towering on the table was my husband’s medical record. This was a very important book, for on the table lay the story of Fred. Here began our journey. How could we change the world and create patient centered care. How could we access the data silos that seemed do distant and inaccessible to patients and their caregivers?

For the past year we have all worked on this goal using our many talents and abilities. I have had the pleasure of speaking on panels with Ted several times. We are great together. The energy of the other makes both of us better. When the patient and the doctor work together as a team great things can happen. Last night I had the opportunity to co-present with Ted at Health 2.0 Stat in Bethesda. We spoke about the importance of the patient and goal of patient access. And reminded those attending that when we speak of patients we must not forget “the face of our father.” I came to speak about the ways art can effect change within medicine. I also came to talk about how books can save lives. And if failing that goal, how books can help a life have meaning.

Do you know this face? Do you know this name? He is not the patient in room 6218. He is not “unfortunate ym 39yrs old..” He is Frederick Allen Holliday II, Phd. He was a loving husband, a devoted father, a professor of film studies, and a great friend. He was hospitalized for 79 days with a diagnosis of kidney cancer.

I had the honor of being Fred’s wife for almost 16 years. He fell in love with me at first sight… twice. He first saw me painting a flat at OSU in the fall of 1992. He saw me from behind and my long hair was trailing down my back. He thought I was beautiful. I did not see him, and cut my hair short the next day. He met me again about a week later and we talked Stephen King. We both loved horror stories. My favorite was The Stand, and he loved the Dark Tower books. We were meant to be.

Do you know this face? Do you know this name? She is not “the wife in room unhappy with progress.” She is not “little miss A-type personality.” That is what Fred’s oncologist called me as I spent days trying to get access to the medical record. He told Fred, “that if little miss A-type personality wants information she should come to his office hours.” I did. He never stopped answering the phone, talking with his nurses and he never closed the door during my one appointment with him. This face is Regina Holliday. I paint myself in the picture. I am loving mother, an artist, and I was the wife to a great man.

I asked for weeks for access to my husband’s medical record. I was allowed to view an imaging report for three minutes by an internist. I am not sure I got much out of my three minutes, and he told me he wasn’t supposed to let me see the information at all. I went down to medical records to ask for a copy and was told it would cost 73 cents per page and I would have to wait 21 days. I have spoken about this event and blogged about it. I have often seen comments saying I must have not tried very hard to get the copy. I have something to say about that.

There is always a B story and an A story. My husband studied narrative and would have told you that. All the while I was trying to get access to Fred’s record I was trying get another very important book. When I realized the advanced nature of Fred’s cancer I began emailing my friend Deborah about Stephen Kings’s new book that would release in November- Under the Dome. She emailed the publisher’s rep, and he emailed the publisher. They got permission from Stephen King to print an advance galley. Fred was told he had tumors and growth on March 27th 2009. On April 7th 2009, I handed Fred a copy of a book that would not be available to the public for six months.

Thank God for that book. Fred read it during every transport for radiation. It helped him in his darkest hour. And thank God for the Dark Tower, for I would scream the words of those books over the train-rushing roar of the MRI machines. I was unable to get a copy of Fred’s record for many weeks to come. Once I had access to the record, I used it to create an easy to understand “facesheet.” That became the design of the Medical Facts mural.

Then three days after meeting Ted and all the rest of my new friends, I painted Fred’s Medical Record on a wall in a local Deli for all of our neighbors to see… Next, my new friends in the world of Health 2.0 began blogging about the mural. You can see their posts here, here, and here.

After spending a few weeks in hospice Fred was told he would need to go home. Our one bedroom apartment was too small for five people and a hospital bed so we would have to move. With the help of friends we moved on June 10th. Fred came home on June 11th. All of his Stephen King books were arrayed beside him. On the day he died we were still talking Stephen King. On June 17th he died. I thought of the Dark Tower and what Roland had said:

"I do not aim with my hand; he who aims with his hand has forgotten the face of his father.
I aim with my eye.
I do not shoot with my hand; he who shoots with his hand has forgotten the face of his father.
I shoot with my mind.
I do not kill with my gun; he who kills with his gun has forgotten the face of his father.
I kill with my heart."
— Stephen King (The Gunslinger)

On June 23rd I began painting 73 Cents- my personal Guernica, and no one would forget this face. I would use my eyes, my mind and my heart and vow to make health care better for us all. I painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001 Connecticut Avenue in Washington, DC. It is a monument to Fred and patients everywhere. And just like the internet, it advocates 24 hours a day, and you cannot tell it to shut up.

Soon you will see my newest painting Give Us Our Dammed Data at the Clinovations Gallery Show on 7-29-10. It shows 19 authors, and I wonder if you know their faces. I wonder if you know their names. I wonder… can we use our “Cognitive Surplus” and activate our “Consequential Strangers” to help “The Empowered Patient?”

These are the authors:
1. Sanjaya Kumar, Fatal Care
2. Jari Holland Buck, Hospital Stay Handbook
3. Janet Mitchell, Taking a Stand
4. Michael Millenson, Demanding Medical Excellence
5. Margo Corbett, The Savvy Patient's Toolkit
6. Sandra Gilbert, Wrongful Death
7. Trisha Torrey, You Bet Your Life, The 10 Mistakes Every Patient Makes
8. Dave DeBronkart, Laugh, Sing, Eat Like a Pig
9. Julia A. Hallisy, The Empowered Patient
10. Carolyn Oliver, MD, Cautious Care: A Guide to Patients
11. Elizabeth Cohen, The Empowered Patient
12. Sorrel King, Josie's Story
13. Lisa Lindell, 108 Days
14. John James, A Sea of Broken Hearts
15. Melinda Blau, Consequential Strangers
16. Clay Shirky, Cognitive Surplus
17. Martine Ehrenclou, Critical Conditions
18. Patrick Malone, The Life You Save
19. Evelyn V. McKnight, A Never Event

I have read many horror stories in my life, a lot of them were written by Stephen King. But these are the true horror stories. These people have taken their pain and anguish then condensed it into a book so others do not have to suffer as they did. In each book, you read about that horrible moment, when if only these people could have had real time access to the medical record, someone would not have had to suffer or die. It reminds me so of Stephen King. It happens often in his work. He warns the gentle reader, you could stop reading right now and pretend the story ended well, but often it does not end well. I have communicated with all of these authors via email. They want you to know their story. They want you to see their faces.

Do you wonder if it matters if someone hears the patient’s story? Do you doubt that working together we can create a better medical system?

On Tuesday the 13th 2010, I presented a speech at Health and Human Services about the importance of patient access to the electronic record during the announcement of the definition of Meaningful Use in the final rule. Politely, I echoed e-Patient Dave’s call to action- Give us our data. How did I get to speak? I spoke because a husband and wife who own a deli gave me a wall. A man who owns a gas station gave another wall. I painted and you blogged, tweeted, and posted on Facebook. We are all patients in the end. Together, let’s change the face of health care.

Check out this SlideShare presentation:


  1. Regina, I've read and heard your tale many times now. Now, I'm rereading (something I rarely do with any book) Dave deBronkart's book "Laugh, Sing, and Eat Like a Pig." The two tales keep reminding me, at turns, one of the other.

    Dave went in for a minor pain, and his conscienscious physician (or radiologist, we never hear which) noted on Dave's shoulder x-ray, a shadow in his lung. Fred's complaints of pain were "treated" with pain killers. By "treated" I mean, of course, blown off. Not just ignored. He was treated like a hypochondriac. Take these pills and go away. Where were the x-rays, MRIs, and ultrasounds that might have found his tumors? Oh, yes, that's right, those are in Dave's tale.

    I'm sorry if thinking on this causes you even an inkling of pain, Regina, but I can't help wondering, had someone done just one more test, might they not have found the source a bit earlier? Might he not have had a chance at recovery--or at least control, a little more quality of life--if they'd found something when he first complained?

    I look at "73 cents" and the dark, sinister man with his head glued to the cell phone, and I try to reconcile him with Dave's Dr. Sands. I want to understand how, at a time when your idiot oncologist was yakking on the phone and labeling you "little miss type-A personality," at a time when your hospital was saying, "seventy-three cents per page and a 21 day wait," Dave was hearing about ACOR and staying in contact with his data via BIDMC's advanced, patient-centered review and email system.

    How can these two cases have happened in the same century, let alone the same year? How does this healthcare system abide stupid, self-centered asses like your dark oncologist? Why do any of us.

  2. Dave and I are called the Wonder Twins for a reason; we are mirror stories. But my glass is dark, and his is light. They had the same cancer with very different outcomes. Fred began his quest for help with an x-ray in January. He was told he must have broken his rib from coughing. In February, when he went to the doctor for back pain she did not connect to the rib pain. In mid March he had another x-ray due to extreme back pain, but they thought he just had a slight protuberance of Lumbar five. In late March after months of pain and two sets of x-rays, I demanded an MRI.

    You have caused me no extra pain. Each night I think of if only stories that would have extended Fred's life even if he couldn't have been saved. There are so many if only points to Fred's story.

    He was a funny great guy and I really miss him. I couldn't save him, but maybe I can save others. That is my hope. That is my goal.

    I am glad you see the oncologist as sinister in the 73 cents, that was my intention. Although physically he is not an exact duplicate of the man in question, I have been told by many that I copied his expression perfectly. I wish we had had Danny Sands as our doctor. I wish our story could have been a happier one.

    But there is a reason for everything. This was our story's ending. Perhaps in telling our tale others will live.

  3. I should correct one important error in what I said. Dave deBronkart's oncologist is David McDermott. Danny Sands is Dave's PCP. Just want to give credit where it's due.

    Must have broken his rib from coughing. I've had broken ribs. It took one hell of a stout blow to break them. My step-mother might be able to break her ribs just from coughing, but she has osteoporosis.

    If anyone reading or hearing Regina's tale of her ordeal with the Evil Trolls of the Medical Records Dungeon starts thinking, "I'm sure my hospitals in my state aren't that bad," take a look at this chart from the lovely people at the Lamb Law offices. Most states allow hospitals to charge outlandish sums for record retrieval and copying. Kudos to Kentucky for insisting that the first copy, at least, be provided for free.

    So, Regina, would you go as far as to say the evil cell phone man is Fred's Charlotte Corday?

  4. Thanks for the correction. I knew that Danny Sands was Dave's PCP and David McDermott was his oncologist, but everyone may not be aware of that. I had the pleasure of speaking to Dr. McDermott while Fred was still alive. He is a very good man. My own PCP said he did not believe a 38 year old man could break his ribs from coughing. I told this to Fred, but he was a "good" patient and never questioned his doctor.

    One of the reasons I usually do not name the hospital we were at, is I do not wish to impart a false sense of security. I am not suing this hospital or his PCP. The things that happened to us are happening everywhere. I decided to try to change the entire system. Lack of record access is a problem all over the country. When I wrote a letter of complaint to the Physician's Board, The Hospital and the insurer, I was told Fred was treated "within the standard of care." Well, if this is standard, the standard must change.

    Ah, Charlotte Corday... Although I use the pose of Marat for Fred. I use it as a powerful image of a martyr. Corday thought she was saving lives by killing a man she considered responsible for the death of hundreds of innocent people. She is far to honorable a historical figure for her to represent our oncologist. She cared deeply and saw Marat as a deadly enemy. Our oncologist did not care about us, I am not even sure he knew our names. We were no one, nobodies. He would walk by my mother-in-law or I in a hallway and not even acknowledge our presence.

    Someday, I hope he will realize that you cannot treat people this way.

  5. I remember hearing or reading somewhere that "the most personal is the most general", that by sharing what is most deeply personal to us we connect with a broad range of people, far beyond those we might ever imagine.

    Your story is powerful, and I'm glad that you continue to be offered platforms from which to share it.

    As for you and Dave being the "Wonder Twins", I think another element of your dynamic duoship is the art + words combination - your paintings and Dave's book - and the blog posts you both write (and inspire others to write) will surely lead to increasing empowerment of people known as "patients".

    I would never want to divert you from your visual art, but given your eloquent blog posts, I wonder if a book might offer you another platform for inspiring others.

    In any case, I welcomed the opportunity to read what others had written about your story and your art. To make it easier for others who may read your post (and comments), here they are again, with embedded links: Ted Eytan's Is it meaningful if patients can’t use it?, Christine Kraft's Medical Facts Mural #1, and Cindy Throop's Nothing Personal.

  6. Oops - here's the correct link to Cindy Throop's Nothing Personal (which has a very long and rather curious URL).

  7. Thank you, Joe, for the embedded links. Thank you also for your positive comments. When I am not painting, I am writing a book. I am relating the current feelings in health care to the reaction to and feelings about child abuse on a personal and national scale in the early 1980's. I continue to try to make this very "personal."

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