Regina Holliday's Medical Advocacy Blog

On Friday I was painting a picture of blood in a park.

It is a beautiful painting that seems at first serene, but as one looks upon it more deeply there is an undercurrent of stress. It is the jacket painting of Gina Neff. The title is “Under Pressure. “ I painted this painting under a deadline. I would be giving it to Gina at the Health Foo gathering in Boston that evening. I painted while listening to an NPR report an ever-widening lock down in Boston. There was a manhunt for the two fugitives who were believed to be behind the Boston Marathon bombing several days before.

So I painted blood where it should not be. Gushing in the park.

Gina Neff suffered from preeclampsia when her twin boys were born. Her blood pressure was dangerously high after the births and did not return to normal levels for weeks afterward. There was a danger she would have chronic severely elevated high blood pressure whilst caring for twin newborns. So she is painted with the stress of pushing two carriages while her blood pounds within her.

Then normality returned to Gina’s life. One day her heart calmed and the world continued.

As I put the finishing touches on this painting, I listened to the growing tension in Boston. I checked my email to see if the Health Foo event was still on. It was still a go, so I threw my clothes in one bag and threw my paints into another. I then received an email from my friend Susannah Fox who was also going. I was supposed to room with her that night. She wrote to say she had re-booked her flight for the following morning. Okay, I thought. Now, I had no place to stay. Hopefully, the hotel would have spare rooms. I lugged my bags to the curb and hailed a cab. Then I called my friend Ted Eytan. He assured me he was still going, so I responded if the two of us were going to be there, the conference would go on.

When I landed in Boston I checked my email to see that event had been cancelled due to the continued lock down. I waited for Ted’s plane to land and followed the tweet stream for #healthfoo. Danielle Cass had just flown in from California and did not relish the idea of heading right back. When Ted landed we both encouraged Danielle to stay as no matter what. This event should not be derailed.

That evening the remaining members of Health Foo met at the Royal Sonesta Hotel for light refreshments and drinks. I walked over to Gina Neff and handed over her new gallery jacket and was told I could room with her that night. What amazing friends we have within the world of health and social media! Soon Sara Winge VP of O’Reilly Radar group and co-founder of Foo Camp came carrying her sorrow and a box of books for attendees. The other materials were locked up inside our closed venue. We had no nametags, no markers and none of the supplies to rebuild an event from the ground up

That did not stop us.

We borrowed a white board from the hotel and began to plan the next day’s event. Sara got us started with a few words. Then we did the traditional introductions of each attendee around the room. We decided that the next day we would begin by having brunch. Then we would walk around Boston for a few hours as a Walking Foo (or Walking meeting). Then we would meet around 2 and hopefully have a venue by then. Several local attendees would ask around to try to find a place that would allow us to meet with no notice. We would communicate the real time status of the event on Twitter, Facebook and through texts and anyone who wanted to join us was invited!!

Next we proposed session topics. We filled the unconference board and decided to present a few ignite speeches without slides. Danielle Cass’s speech about work life balance and her new role at Kaiser Permanente was a type of catharsis for her and many other struggling souls in that room. She was brilliant. Our unconference sessions continued until Sara told us the hotel needed the room back and then our excited conversations continued in the hotel lobby well past mid-night.

The next day was Saturday and the Health Foo group split into two parts, some of us eating brunch at Friendly’s and some at Area Four on Main Street.

Very soon each group set out walking. We were blessed to have 15-year-old Abigail Boone in our group. As her father Keith Boone was willing to let her walk with us while he was in the other group.

We came across the make shift memorial for the fallen MIT officer. As we stood there taking photos, Abigail drew a small picture and laid it down as a gift upon the growing mound of flowers. Then we walked away.

We walked as octopus navigates the ocean floor, our form changing and reforming. I would talk with Ted, then Hugh, then Danielle Cass, then Danielle Gould, then Chach and then Abigail... Abigail is a student studying forestry and as she walked beside me she explained the growth of calluses on trees and pointed to ‘cancer’ on a trunk. I walked in awe beside her. I learned so much from a 15-year-old girl who would have never talked with me if this had been a traditional Health Foo.

Soon we met with the other group coordinating via twitter and Google maps. Anna Young from Little Devices told us she thought she could get us into a space at MIT. We walked over to the new space. It was perfect! We filled out another unconference planning board Fred Trotter took charge of this process and was amazing. I attended Ted Eytan’s session on transgender experiences and I began to paint.

This is the painting “The Open Door.”

This is the Boston I saw upon arrival: the streets devoid of cars and the buildings in lock down. Then the campers begin to walk upon the street as it buckles and bends in a crazy life ride. In the distance there is an open door on a building marked MIT.

One walker holds a transgender hula-hoop. A hula-hoop is toy that is only enjoyed while in constant motion. Always recalibrating to keep it up. I thought it a good metaphor for the constant frustrations of the transgender patient seeking medical care and respect.

Soon Hugh Montgomery would talk with us about climate, global warming and the power of wind energy, explaining that if Tylenol would just become available in smaller milligram tablets it would save energy in manufacture.

I began to paint the police tape that littered the ground as we walked earlier that day. It had joined the piles of windblown trash that made Abigail so sad as she saw the waste of our industrial world overlaying the roots of her beloved trees. We then talked about the future of education and a little red schoolhouse entered the picture. Soon it was 6:00pm and time to wrap up this conference day. I went to dinner with Ian Eslick and several other amazing campers and we talked about programming code a good part of the evening.

The next day I met Ted for breakfast and happily looked back on the weekend thus far. We were so glad that we had been able to encourage others to embrace the failure of a plan and build something great from the remains. I told Ted, this wasn’t that hard for a patient to do; after all, we have nothing upon entering the world of care. We have no space to call our own; we constantly must move, never sure where we will end up next. A Health Foo unconference created on the go was nothing new to the patient and family caregiver; it was the care model as we knew

it.

Soon Ted and I met the small Sunday morning crowd at MIT. Ted proposed a session to teach those who did not know how to tweet the wonders of twitter. Ted took Hugh Montgomery under his wing and I began explaining Twitter to Gorden Bell. He then showed me his self-tracking devices, which I tweeted out to the world. By the time an hour had past both gentleman were sending tweets and following accounts.

I returned to my painting and painted two young men building a go-kart on the left of the painting just as they were doing in the left of the room. Then I participated in a final session on the importance of tracking heart rate variability. The session was presented by an engineer and given to two doctors, another engineer and to this artist who only attained a high school degree.

That was pure Health Foo.

You see Health Foo brings us together: the smart techie, the artist, the doctor, the designer. In this moment we are all equal. We are all valued and from each of our singular natures we make a greater whole.

So I signed this piece and gave it to Anna Young for her willingness to host us inside her maker space. She was so happy she began to cry. Her whole face beamed with joy. Her blue eyes were an endless sparkling chasm; an open door. For when Anna unlocked the door to MIT that day she created a moment of communion and we are all greater for it.

As my friend Ted has said, It is the greatest cancelled event I have ever attended. It was an amazing weekend. It was a moment to recharge the batteries of so many of us who after weeks or months of travel and teaching needed to feel the embrace of great friends and agile minds.

We found in this gathering the peace that Gina found in her post partum home. We found the peace that I hope Boston will find as well. Our hearts calmed and the world continued.

I wanted to post an update in the continuing saga of my request for Hallmark to create hospice cards. At this point the petition has over 4,000 signatureson Change.org. While Hallmark has yet to create a card to fill this gap, Greeting Card Universe has created 24 hospice cards for friends and family of the hospice patient to use. I was overjoyed to hear this! This is another step closer to getting such cards in stores. You order Greeting Card Universe Cards online, but you can pick them up in your local Target store. Isn’t that wonderful? Mindy Rosso-Gaemi, community manager at Greeting Card Universe heard our original plea and decided to do something about it. She created the hospice category and several fields of card types. She then asked her artists to use their talent and life experience to create some cards. These lovely cards are the result.

I loved the heart-felt truth and honesty of this card:

And though it may have not been the intent of the author, this one with “You Are Not Alone” made me chuckle and would warm the heart of any Doctor Who fan. So my friends Michael, Rebecca and Will if you ever enter hospice I am totally sending you this card!

Thank you Mindy and all the artists at Greeting Card Universe for making the end of life a little brighter.

Full press release below:

Greeting Card Universe Offers Greeting Cards for Final “Good-Bye” to Hospice Patients & “Thanks” to Hospice Nurses

San Francisco, CA – (May 1, 2013) – In celebration and support of National Nurses Day on May 6th, Greeting Card Universe, the world’s largest greeting card store, announces its new collection of hard to find and uncommon cards for patients in Hospice Care – affording loved ones the words and sentiments to say a final “good-bye”.

“Together with regular nursing duties, hospice nurses provide palliative care to terminally ill patients,” says Mindy Rosso-Gaemi, Community Manager at Greeting Card Universe. “A hospice nurse not only helps a dying patient going through a distressing and often times frightening period, but shows the same level of caring and compassion in comforting the patient’s family and giving emotional and spiritual support when it’s needed most. A special ‘thank you’ card for a nurse or caregiver is a wonderful way to express gratitude to these special individuals”. Greeting Card Universe has a popular collection of over 1,000 Nurses Day cards.

Hospice care was first established in the 1970s. At the time, cancer patients made up the greatest number of recipients. Today, thanks to advances in medicine, less than 50 percent of hospice admissions are due to cancer. An estimated 1.65 million patients receive hospice care in the United States each year.

“Hospice patients need to hear from family and friends,” says Rosso-Gaemi. “They need to know they’re loved and won’t be forgotten, and that it’s okay to let go. For most people coping with a dying loved one is too difficult. They fear of saying the wrong thing and are at a loss for words so say nothing at all at a time when any words would mean so much. Not taking the opportunity to connect is a regret they’ll likely carry for the rest of their lives.”

Greeting Card Universe offers sympathetically designed Hospice Good-bye / End of Life cards created especially to give to hospice patients, providing a starting place for a loving, therapeutic conversation or a final good-bye. The new collection of cards was inspired by the plea of Regina Holliday, artist, widow and healthcare advocate, who publically petitioned Hallmark to create a collection of Hospice End of Life greeting cards.

“Where Hallmark stumbled, Greeting Card Universe has risen to the occasion offering a new collection of cards to serve this niche market,“ shares Rosso-Gaemi. “It’s not always about what’s politically correct or the size of the market, but instead if there’s a real need for expression. Once shoppers discover the variety of cards we offer, they’ll never shop anywhere else. ”

Greeting Card Universe put the request for hospice cards out to their community of 5,900 artists. Within two weeks the new collection emerged with over two dozen cards and more to come. Many of these artists drew upon emotions and experiences of hospice care and their own lost loved ones. The creations carry their tender words of thanks, good-bye and prayer for others to express when the words don’t come easily.

Ordering online from Greeting Card Universe’s collection is easy and convenient. An added convenience for last minute shoppers, cards can be ordered online and picked up— usually within one hour—from most Target stores across the country.

Greeting Card Universe’s traditional and niche offerings of over 589,000 cards gives nod to the importance of choice and personalization in today’s marketplace and stays true to its tagline “any card imaginable.”

Explore more uncommon holidays and occasions on the Greeting Card Universe blog. Mindy Rosso-Gaemi is available for guest blogs, radio and TV interviews on this topic and other uncommon occasions and holidays.

About Greeting Card Universe
Greeting Card Universe (www.greetingcarduniverse.com) is a division of BigDates Solutions, a private company that provides consumers with unique, personalized services for any holiday or occasion. Greeting Card Universe is the world's largest paper greeting card store, offering an unlimited selection of custom greeting cards, birthday greeting cards, photo cards, invitations, and note cards. BigDates Solutions is the leading provider of Online Reminder Service Solutions, powering gift-reminder services, including 1800Flowers.com and FTD.com. The company is also the owner of Birthday Calendar, a Facebook application with over 42 million installs.

Contact: Mindy Rosso-Gaemi Mindy.Rosso@bigdates.com

Recently, I delivered one of my favorite types of speeches: a speech with Dr. Ted Eytan! On April 26^th, 2013 I delivered a Patient Engagement Panel Speech at The Mid-Atlantic Healthcare Informatics Symposium presented by The Children’s Hospital of Philadelphia or CHOP, as it is known and the Center for Biomedical Informatics, CBMi. We were invited to present by Anthony Luberti, MD, Medical Director, Biomedical Informatics Education at CHOP and CBMi and Mark A. Diltz, ED. D., Manager, Biomedical Informatics at CHOP and CBMi.

Did you know I gave my first speech in the world of health on a panel with Ted? It was “Beyond the PHR: Promoting participation at all levels at all levels: internal and external: patient, family, community.” 5^th World Healthcare Innovation and Technology Congress, Washington, DC November 2009. The years would pass and we would present together informally at many roundtables and formally on many stages. We would always be so much the better for our collaboration. And just like several speeches in our past Ted came to my rescue at this CHOP event uploading my power point deck through slideshare onto his laptop seconds before I would speak. Just as hours before, I would paint the water ripples back onto his Walking Gallery jacket that the two years of constant use had made faint.

Philadelphia and Mid-Atlantic Bio Informatics 23089

You see, Ted and I, we help each other. We are doctor and patient/friends and collaborators. When I speak on the stage with Ted, I feel that optimism of the child within. Work becomes play and hope springs eternal. So I shared my speech on toys, data, childhood and abuse entitled “Thinking Outside the Toy Box.”

Thinking outside the toy box from Regina Holliday

Ted spoke of patient engagement and environmental stewardship.

2013 6th Annual Mid-Atlantic Informatics Symposium from Ted Eytan

Our Moderator was Alex Fiks, MD from CHOP with a background in urban pediatric care with a focus on HIT (Health Information Technology) integration. He did a great job of explaining the current HIT landscape. Also on our panel was Daniel Masys, MD. His focus was genomics and he redesigned his power point after seeing mine prior to the event. (That was super cool as I have a high school degree from Sapulpa High School and did a speech that compared toys to data and Daniel is an honor graduate from Princeton with 30+ years in biomedical informatics) His presentation focused on the true ramifications of embracing a learning health system and tracking serendipitous drug response.

Can you tell how much I loved this panel? It was a great moment for us and for the hundreds that attended. After we spoke there was a robust Q&A and I was able to share several important points with the crowd. One is that I have signed a Kaiser Permanente HIPAA waiver so Ted is free to talk about me at whatever venue he chooses. I love to remind folks the default in privacy and security is not lack of access, it is asking the patient what they want. Some of us want to share! Secondly, I was able to share the knowledge with audience about Leon Rodriguez and his work in The Office for Civil Rights. The OCR is helping patients who aredenied lawful access to information and ensuring their rights.

So that was my speaking, but it has been a few years since I have limited myself to only speaking at an event. I painted as well. The first painting was entitled “The Story Within.”

This painting was based on the morning presentations and in large part was inspired by the keynote of Daniel R. Masys, MD. In professorial tone, (I am not talking about a stuffy, somewhat patronizing lecture, but instead that endearing combination hesitancy and passion that an instructor will engage in when he truly loves his topic.) Daniel explained the beauty of genomics and compared it to an encrypted code within technology. So within my painting swirling curvaceous double helixes arise from within the book of our internal code and small children climb the ladder of time.

The lower half of this painting focused on concerns raised in the presentation “Provider Perception of the effectiveness of Early Warning System for Sepsis in and Academic Medical Center.” Here the gold tone background has a lovely etching of black brushwork that one slowly realizes is the word sepsis in constant repetition. A child lies upon this field and what was once a red bookmark in our book of self has become a thermometer reading a fever spike. A mother cradles the child’s head, as she worries. Is this only the flu or something far worse? In the Q&A after the presentation I was able to share information about an EMT pilot in rural Maine that will allow EMT’s to do home visits to complete remote testing. Happily the ambulances there have the ability to test for sepsis via lactate testing.

The afternoon painting is entitled “Moving.” It was largely inspired by a hallway conversation I had with Judy Murphy, RN Deputy National Coordinator for Programs and Policy, Office of the National Coordinator HIT. She would be our afternoon keynote. She was telling me about the trials and travails of moving cross-country for her job. She explained the stress of leaving her husband behind in Wisconsin while she worked inside the beltway. We commiserated about the challenges of maintaining care coverage as well as data access during a physical move. As I am moving myself into rural Maryland, I felt her pain acutely. We talked about the need to pack everything and sort later what should be kept and what should go. That is a very strong metaphor for complete patient access to the Electronic Health Record. Let me have my data, let me unpack it and let me decide what can be kept and what should be passed on.

So as Judy Spoke of HIE completion and Blue Button capability, I painted a green landscape with small white houses, a large hospital and the roadway spells “HL7.” Upon the roadways a large moving van has written upon it “HIE moving.” These are the movers you hire; they handle all the details and get your stuff or your data where it needs to go. Flying into “the cloud” is another moving truck. It is an U-Haul with the Blue Button symbol upon it. See some of us want to carry the load ourselves, our reasons may be varied: be they economic or a desire for control, we still want to download and transmit our data or ourselves.

Finally to the far left a patient on a motorcycle speeds by. I was live tweeting this event and my friend Keith Boone, or @motorcycle_guy on twitter asked, “Where is the motorcycle?”

So we end a day that started by uncoiling the innermost code of the human cell to focusing on the beginning of a girl like me. I exist because of a motorcycle and a hospital. My father was in a horrible motorcycle accident in the 1960’s. In the hospital he met my mother. They married had three wonderful children. My father was a hard man who often beat us and taught me by force that we must stand up to injustice. So I paint, I speak and share the truth that opens eyes and allows tears to flow.

I loved this day and each person I met. The greatest compliment I could ever receive came from many of the attendees as they told me my words were moving.

Moving, that is what we must do. Do not stop; do not give up until we get change in this nation. Data must move and we must be able to unpack it.

This is my second year painting an image that represents the wonder that is Medicine X at Stanford. The painting this year is called “Such as These.” The title is a literary reference to the New Testament passage where Jesus chides the disciples for turning away messy and exuberant children. I thought that a powerful concept as we reflect on an event that invites all of us to the table.

I focused on children this year. In the world of art, when children are depicted at all, they are often depicted as adults in miniature. But children are far more than that. They are flexible in limb and mind. One moment a child’s face can break with sorrow as tears freely fall and in the next moment a peal of laughter will fill the room. Children show such a range of emotion even though within our culture they are usually depicted as happy smiling creatures.

Often in fine art, children are accessories within a composition. They provide a still structural support within a scene and are not the focus of the piece. Here I paint them in all their glory of action and importance, even if their world is considered small compared to our own.

So we enter the world of metaphor and the patient becomes the child. For within the world of a medical conference patients are often relegated to this role. We are overly emotional, messy, uninformed, and ignorant; we tend to interrupt our elders. Very often we have special tracks and patient speaker panels that are attended by other patients but very few professionals join us at the children’s table.

But if we patients stray within the realm of the professional and like any observant child pick up the turn of phrase and jargon of the world of medicine, if we talk as they do, why then, we are considered “professionalized” and no longer in touch with the common man. What a dilemma for the epatient or patient advocate to face.

Not long ago my friend ePatient Dave, or Dave deBronkart as he was once known, shared with me the negative comments a member of industry used when describing my speaking style. The gentleman said I was not real because I cried at the same time in two speeches. Well, try as I might I cannot change the past. It sad every time and most times I cry. But like a child, I can leave the tears behind and within moments focus on a brighter future. Yet this process is painful; each night after the speech my eyes hurt and my soul mourns.

I decided to reach out the gentleman who misunderstood me so. It turns out seeing patients enter the world of medicine and lose their authenticity had frustrated him. I explained each person is different, but having lived through a childhood abuse allows me to go from experiencing obvious sorrow to being able to talk about the intricacies of health policy within moments. I told him that being beaten and then having to answer the door with a smiling public face is lesson you do not easily forget. I also said there are patients who cannot return so easily from darkness, but you do not see them speak anymore because this job became too much for such as these.

He continued to share his concerns that patients weren’t keeping it real and growing too distant from the source of their passion. I acknowledged his view but stated we each have different ways to stay in touch with day-to-day concerns of regular people. I still work in a toy store and talk of child development and patients rights in the game section. I still do painting with children and introduce them to the concept of participatory art. Not to mention with each Walking Gallery jacket I paint, I dive deep within the playground of another patient’s mind.

The gentleman apologized for thinking ill of me we he really did not know me. I look forward to having a chance to walk with him again in the future. Apologies are rare within this world and should be cherished, as should be the willingness to talk about hurt feelings.

Which brings us back to children and this special painting. Here within the scene a child pours tea for another. The serving child is concentrating on the task and the recipient of the tea looks at the viewer. He or she is an androgynous beauty who looks upon us but also slightly beyond, perhaps focusing on a field of questions that must one day must be answered. To their left a young girl proudly hefts a flag before her that billows in the breeze. The flag is Stanford red and emblazoned with XOXO, hugs and kisses from this conference to those who will join us at the table.

In the center of the composition an African American boy stares into the distance while another child checks his ear with a toy otoscope. The boy’s face holds a fleet of emotions from frustration to concern. His clothing is the same color as the sky and other than his questioning visage he could easily disappear into the background even though he is placed center in this composition. Sometimes we do not see that which is right before our eyes. Below the table a child looks up with a happy smile and offers a flower to her friend as the puppy Zoe completes the tableau.

To the right a red haired child stands tiptoe carefully constructing a familiar tower and the word medicine. He only has eyes for the world he is building and his countenance is one of peaceful work. To his right a girl in her skinny jeans holds her teacup as she looks with serious concentration at her smart phone. Which based on her expression, I do not believe is a toy.

That is the Medicine X painting for 2013. That is the energy and communication of the children’s table. This is a place where tears and laughter meet. This is a place where feelings may be hurt but we talk about it and say we are sorry. Welcome to our table.

On April 15, 2013 I enjoyed my first visit to Austin, Texas!!! I was super glad to visit another gem of a quirky town after spending 3 years in Lawrence, Kansas in the late 90s. (I hope some day to make it out to Boulder, Colorado as well.)

Kyra Hagan, VP of Marketing at Medseek, afforded me this golden opportunity. Last fall she enquired about the possibility of me presenting at their user group in their April Client Congress. Krya has a personal background that is strongly focused on patient safety and Medseek‘s focus is on patient portals, so I jumped at the chance to speak there.

Medseek works with 1,000 plus hospitals in the US and concentrates on website design and portal functionality. Their sole focus since 1996 is patient engagement and they work with many of large EMR companies. They integrate and collaborate and that is music to my ears!! So I could not wait to present at their event!

As I was visiting Austin, I reached out to a few dear friends who lived in the area. One was Naveen Rao, whom I met originally at a health meet up in DC. He now lives in Austin and works at Livestrong. He asked me if I would share my story with some of the Livestrong team. He also offered to pick me up at the airport.

My flight got in a bit early, so Naveen dropped me off at a whimsical eatery near Livestrong called Hot Mamas.

The place was super cool with a lot of original art. I was drawn to a wall that was covered with peacock imagery. Then I sat down to eat one of the best salads I have ever enjoyed. It was so good I even tweeted a picture of it! Four years into twitter and I send my first food tweet.

Next I walked down the sidewalk toward Livestrong cherishing the familiar spring foliage. Even the prickly weeds reminded me strongly of my Oklahoma youth. I spoke to the Livestrong folks then I was able to tour their very green facility that boasted a lot of reclaimed lumber.

Prior to leaving DC, I also spoke with Walking Gallery member Erin Gilmer, founder of Nebular Health Tech. She mentioned her desire to do a film screening of 73 Cents in Austin. She set up the eventbrite and began promotion, but a week prior to the event lost her screening location. Texas locals Joleen Chambers and Laura Slayton began searching for a venue. I began calling local Lutheran Churches and was so happy that St. Martin’s Lutheran Church near downtown was happy to oblige us! Erin met me that evening on crutches as she had hurt her foot badly and we had a great discussion about health and advocacy during dinner. I thank her for all her hard work putting this event together.

We had a wonderful screening and an excellent Q&A. I met so many wonderful people. My twitter friend Camea Kirkpatrick, who is a hospice nurse drove from three hours away to make it to the screening. She is as kind and loving in person as she has been on so many #eol chats. Both Walking Gallery member Laura Slayton and Margaret Crump from the American Nurse Practitioner Foundation were able to make it to the screening as was gallery member Joleen Chambers. One of the new faces in the room was Allison Peacock(which explained my peacock fixation earlier that day…). Allison is one of those delightful people that have triumphed over adversity and balances her advocacy between science and spirit. I am so glad we connected.

On April 16^th I presented my speech “Patient Engagement: We were here all along.”

I was able to thank Robert Aaron from Microsoft for Microsoft's generous sponsoring my Keynote that day.

Patient engagement from Regina Holliday

The crowd really enjoyed it and it helped set the tone for the rest of the meeting. After the speech, I went to my easel and began to paint the content of the meeting room the front of the room. Few conferences let me paint in front, but I always get amazing feedback when I do. Audience members tell me it helped them stay focused and engaged.

The next speaker was Leslie Kelly Hall from Healthwise. I have had the privilege of seeing Kelly at many meetings in DC, but have rarely heard her deliver a keynote. She looked so lovely, so fit and healthy in her blue suit I began to paint her thus with a ball of energy within her hand. The energy began to flow as she spoke, and spun around her. Behind her was darkness. The yellow energy and the darkness formed a kind of yin and yang. At the moment I finished that symbol, Leslie (who could not see my work from the stage) said she was speaking about the yin and yang of healthcare. I looked up and then behind me at the people watching me paint while Leslie spoke. We were amazed. Then Leslie shared a poignant story of her Mother’s care.

The receptionist at her mother’s doctor’s office told her she could discuss only 4 complaints per visit. Lesley’s mother took that directive very seriously so she did not bring up her shoulder pain. She thought she could deal with the pain. She dealt with that pain until she could suffer no more, and found out much too late the shoulder pain was a point of metastasis. Lesley’s mother died soon thereafter. So within the painting Leslie and I stand side by side, I hold up 4 fingers for her mother and we are both anchored in this space with the pain of loss.

The next session focused on the risk of trying new ways of doing business and I painted two children playing the classic game of Risk while one child hold’s within his hand a can of PAM or patient activation measures to help him win the game of care.

Next I listened to a marketing pitch as scrolled the twitter feed and laughed out loud at this tweet and thought it must be incorporated into the painting.

Then I left my painting to attend a session that focused on patient empowerment hosted by Randy Ayers and I saw some great concepts that medseek would be supporting in the coming years. The room was filled with mostly folks who loved data and I chuckled to hear the speaker throw in a subtle over 9000 meme reference.

Finally in the far right foreground I painted Kyra holding a plate with an egg upon it. It was an egg for energy, and egg that reminded me of the possibility of Medseek. It was the egg that Medseek fed us rather than and endless table of pastries.

On April 17^th I painted again. This painting was called “Babel Revisited.”

Our two final speakers inspired the painting: Reed Smith and Warren Macdonald. Reed explained the power of social media as it is applied to healthcare. I painted him standing high upon a mountaintop. One hand embraces the tree of knowledge the other lets a twitter bird fly.

Warren shared his personal story of losing both legs after a boulder on a mountain crushed them. He recounted his long struggle to recover and continue to be the athlete he always was. In the painting he looks up at the message the birds are telling him. So a circuit closes. In this moment we are reminded why we are all here this day. We are here for the patients and they were here all along.

Recently my new friend Mindy from Greeting Card Universe emailed to let me know their company not only makes hospice cards; they also make non-traditional Mother’s Day cards. They make Mother’s Day cards for single Dad’s. Which made think about of another non-traditional role: that of the Mother’s helper and the respect we should show them on this day.

When my son Freddie entered kindergarten at Murch Elementary nine years ago he made a very special friend named Henry. This quiet calm child was the opposite of rambunctious Freddie but they really enjoyed playing together. Kindergarten was a hard year for Freddie but Henry was definitely the bright spot. So at the end of the year when the other parents were requesting particular teachers for 1^st grade, we requested Freddie be placed in the same class as Henry.

Throughout third grade Henry and Freddie were great friends, then Freddie went to a special needs school and Henry continued on at Murch. We did not see him often. Then the spring of Freddie’s 4^th grade year became a time of sadness, as Freddie’s Daddy (Fred) grew very ill. Many neighborhood families would take in Freddie and sometimes Isaac as well. Several times Henry and his father Tom would play with Freddie and little three-year-old Isaac while Mommy was at the hospital with Daddy.

Then Daddy died.

There was a great hole in our life where his love once stood. Freddie and Isaac were so lonely for their father. That summer I would set up so many play dates for the boys. I noticed something very special would happen when Henry came over to play. Isaac filled with joy and Henry who had been Freddie’s friend was now a wonderful mentor for Isaac.

I proposed a deal with Henry. He could come over one day each week for an hour and a half a play with Isaac as a type of mother’s helper. He agreed to my proposal and came once every week for his entire 5^thgrade year.

Many children start with the best of intentions when they begin such a task and slowly stop visiting their little friends as life becomes busy and the teenage years approach, but Henry did not fail to visit as the years went by. All throughout the past 4 years Henry has dutifully came over to play with Isaac and Isaac has looked forward to each visit with unbridled joy. Isaac looks upon our move this summer to western Maryland with great anticipation and sorrow. He will miss his Henry.

Last week I was in California presenting a speech on a special day for Isaac. He would be performing on stage at his elementary school with his entire class singing a song in French. This was his first school performance and there would be no proud parent to cheer him on.

I asked Henry, “Will you go to Isaac’s performance in my stead.” Henry said yes. He filmed Isaac’s short song and he praised Isaac’s performance. Isaac beamed.

So this Mother’s Day I would like to thank those wonderful young boys and young girls who are known as Mother’s helpers. Thank you so much.

And thank you Henry. Someday you are going to make a great Dad.

I love earPlanes.

Do you know what I am talking about? earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying. The device consists of a silicone earplug and a ceramic pressure regulator. As a frequent flyer, I use them on every flight. They cost to $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days. This was quite a problem. It is hard to speak well if you cannot hear well. Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes. I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option. (By that point I already spent over 500 dollars on my air flight-induced ear infections.) Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about Earplanes is not to help Cirrus Healthcare Products. I want to help my friends and fellow travelers. You might also realize there were two brands enclosed in the above testiomony: Earplanes/Cirrus Healthcare Products and Regina Holliday.

This post on the meaning of branding was inspired by a cold call request made by Andrew from PM360 Magazine.

“I am with PM360 Magazine, a monthly publication for pharma marketers. We also send out a monthly e-newsletter called Panorama. Every month in the newsletter we ask our readers a questions about a new topic, and then we publish the responses we receive in an article in the next month's edition. I thought that this topic might interest you as a patient advocate.

Trend Talk: Patients as Brand Advocates?

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there? Email your responses… by May 14.

For the most part, we are only looking for a few sentences from each contributor. I thought you may want to contribute something from the patient's point of view. Let me know if you have anything to say on this topic and are interested in responding.

Thanks,

Andrew”

This request bothered me in its tone and scope, so I thought I would respond online and invite all my patient advocate friends to respond as well…

Do social Media much? The tone of this request is very off if you follow the ins and outs of social media. Klout and PeerIndex were launched almost 4 years ago and that is rather ancient on the internet. Also, I have never seen anyone in my social network utilize Klout “perks:” the commercial tie-ins to brands. I checked out PM360’s internet presence and it is a little sparse for a marketing magazine. They have 134 connections on LinkedIn, 65 page likes on Facebook and on Twitter they have 1,553 followers. I think some of the questionable tone of this request is due to inexperience in Social Media and too much exposure to the traditional group-think in marketing.

“While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar?”

A word of advice: Don’t ever ask a patient activist how you can take advantage in the realm of patients…

“What is the best way that pharma marketers can work with patients to improve their campaigns?”

Most patients in the social media space were just regular people who began to speak out. In many cases they did that out of pain. Just as cattle’s brand is seared upon his flesh, the patient’s brand is seared upon their soul. The patient may brand themselves with their formal name: Regina Holliday, a modification of said name: e-PatientDave, a created name: Afternoon Napper or the name of the organization they have created: Colontown. They complete this painful process to spread their message be it focused on patient data access, patient empowerment or disease specific research and funding.

So the primary brand in such discussions is the brand of self and those in marketing are interested in tagging along for the ride. Well, before you join my crazy life ride; I need to know something about you. I may sing the praises of earPlanes without ever meeting anyone from Cirrus Healthcare (10 followers on Twitter) based on satisfaction of the product. But I bet I would be even more appreciative if I was able to engage in active discussion with Cirrus Staff who shared on Twitter. We like to thank folks personally for the good work they have done. When we work on campaigns in Social Media we expect the support to be like a friendship: it goes both ways.

“What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?”

If you want to see a good example of pharma social media look at Lilly Clinical Open Innovation or @Lilly_COI on twitter. They talk with us. They attend our tweetchats. They even wished me Happy Birthday through a retweet last week. @Lilly_COI may not have a ton of followers, but they understand social media is not about using patients. Social media is about working with people.

The folks @Lilly_COI have done a great job at helping patients get the patient message out. They attended and helped sponsor The Partnership With Patients Summit in Kansas City last fall and even hosted an unconference session on clinical trials and patient experience. They actively retweeted what patients had to say and helped the conference hashtag trend on Twitter. That is what you meant by “to help get their message out there?” Correct, Andrew? You wanted to know how pharma could help get the patient's message out?

Well, those are my thoughts, but I would love for folks to respond to Andrew in the comments section of this blog or on the PM360 twitter account.

This is story about the jacket painting of TomEvans, MD. If you read Tom’s biography you’ll see many accomplishments in his long career. He has succeeded at so many things. He is President and CEO of Iowa Healthcare Collaborative. He has a BA, MA and MD to his name. He was the Chief Medical Officer at Iowa Health System. He was on the board of the National Patient Safety Foundation and is currently working with HEN’s in the Partnership for Patients Initiative.

But today we are going hear about Tom’s failure.

This is Tom’s jacket: “Stair Steps.”

Tom is the eldest of nine children. So like many large families they were arrayed as stair step order in family portraits. In this painting you can see Tom, his father and all of his siblings in descending order.

Here is Tom telling story that inspired this painting:

“This story is about my mother. As a family physician, and she a nurse, we always had a fairly frank and open discussion about medical issues. These took on an entirely new and unexpected dimension when her health began to fail.

I am the oldest of 9 children born over an eleven year span. I think we were more of a herd than a family sometimes! My mom was an RN and worked nights at the hospital. Dad was an insurance agent. My parents were always there and worked hard to make sure everyone had what they needed.

Mom became diabetic late in her 50s. Always too heavy and non-compliant with diet, she never took real good care of her diabetic management even though she was a nurse. I think she was in denial. She was happy, loving mother and the perfect grandmother to our kids. Complications began to catch up in her 70’s and by age 77, she had accumulated several medical conditions that made her a prime candidate for the medical system. Her diabetes was a constant challenge in balancing diet and insulin (she refused to exercise!). She also developed heart disease. She had a “silent” heart attack (no symptoms) and almost died. After a valve replacement and bypass surgery, she was recovering nicely when the wheels began to come off.

As the oldest son and a physician, my role evolved to make sure Mom’s medical needs were met. I found myself mentally moving from “visiting my parents” to a “making house calls” mentality. I also became quite vigilant for patient safety issues in her care. I saved her life three times from medication safety issues. Twice when in the hospital, she was over-medicated with narcotics. Neither situation required Narcan, but both required significant observation and dosage adjustments. The most dramatic intervention what when my father called me over to their home to evaluate Mom as she just wasn’t right. I watched her become unresponsive before my eyes and called 911. Before the ambulance arrived I put together that she might have double dosed her insulin. While a normal blood sugar is between 60 and 110, hers was 7. She was having a hypoglycemic reaction and needed hospitalization.

In the last year of her life, I spent a lot of time with my Dad just trying to keep Mom stable and in the home. Dad was managing her diet, housework, medical regimen (now after the insulin episode), the farm…and burning out. Mom was occasionally a little confused, and had also begun falling. While she had never been graceful, but she just seemed to be “sliding down” through weakness now about twice a month. When Dad was out one time, I came over and found Mom on the floor. She was fully conscious and content, but unable to get up. When I asked how long she’d been there, she replied about an hour. She was just waiting for Dad to help. I expressed to Dad my concern about his ability to care for her at home, and he basically said he would die before putting her in a nursing home. So we went on. Interestingly, her diabetic control was the best it had ever been, so I thought I was doing a good job.

On New Year’s Eve I got a call at 2 a.m. from Dad asking me to come over and check Mom. After watching “Guy Lombado reruns”, they were heading to bed and Mom fell in the kitchen. She hit her face on the floor, but more importantly, couldn’t move her right arm. She had broken her humerus and was admitted to the hospital. On the way home with my dad that morning, I noted that her care at home now exceeded his capability and he should consider a nursing home.

The physician taking care of Mom in the hospital requested a “palliative medicine” consult. Because this is usually reserved for patients at the end of their life, I didn’t really think this would do much good. The next day my dad and I were called in for the results. We were strongly encouraged to consider hospice placement. Though my mom didn’t have cancer, or some fatal debilitating disease, she had developed “failure to thrive” over the past 6 months…her body just wore out. Her falling, increased weakness, confusion and decreased appetite were all signs of this…and I missed it. The reason her diabetes was under such good control wasn’t that her medication regimen was finally good…it was that she had basically quit eating. When we discussed this situation with Mom in the hospital, and she whole-heartedly agreed.

Mom was admitted to a hospice unit the next day and we had a wonderful two months. As her arm healed though, her mind got weaker and she became increasingly disoriented. She was happy, comfortable, all of her wishes were met, and her all of her children were near. Most important, she and my Dad had a wonderful period to review their life together and to say good-bye.”

So within this image I painted Tom racing up a fire escape, as metaphor, to once again rescue his mother. The windows have become the pills she is supposed to take. We live within a world focused on rescue and in the case of fire that can be a great thing. But within our lives it leads us believe there is always one more treatment, one more path of care, when eventually each of us must end. We must appreciate ends as much as we do beginnings.

And I would like to close with Tom’s words:

For me, there are really two points to this story:

1) Medication safety is a huge issue. Adverse drug events account for 38% of the improvement opportunity for the Partnership for Patients hospital acquired conditions. Just few classes of drugs account for about 75% of medication harm. Work focused on blood thinners, management of blood sugar, and pain medication can eliminate a lot of unintended consequences for our patients. It takes vigilance and teamwork as the family and care providers work together for the best results. This communication is critical. We need both sets of eyes to see reality. Patient and families are part of the healthcare team…and must claim the statement “nothing about me without me”.

2) As a society, we don’t do “end of life” transitions well. Often the medical community considers dying a failure, and providers may vacillate from over delivery of care and total disengagement. The patient’s true wishes may not really be considered, and the family is left starved for information and confused. I found myself stuck between the roles of provider and family in this situation, and am embarrassed to note that hospice placement didn’t even occur to me…I was fixing her problems and missed her problem. I wish someone had thought about end of life strategies sooner. I wish I could rewrite the last 8 months of her story for the sake of both my mom and my dad.

I love to paint and I love the paintings I create. Like many an artist, I can be very protective of my work. Artists can show this love and protection in many ways. Some artists want to sue the folks who use an artist’s work without permission. Some artists are very picky about who can buy their art. You see, in a way, these are our babies and we want them in good homes. Recently, I was afforded an opportunity to paint at a medical conference and the painting that came from that meeting could be called a “favorite child.”

Several weeks ago a few friends in my circle of advocates pointed out that there was a conference coming up in DC called Engage:Unlocking Patient Engagement Through Innovation hosted by MedCityNews. These friends were quite disturbed that there appeared to be no patients involved in a patient engagement conference. Sarah Kucharski (or @afternoonnapper on twitter) was one of those concerned advocates. She contacted Veronica Combs from MedCity News and expressed her frustration. Veronica looked into Sarah’s patient advocacy. She discovered Sarah is a leader in this arena and then Veronica asked Sarah to be part of a panel.

Another health policy friend asked me if I would attend and I said, “Sure! As long as they are okay with me painting onsite.” He went to verify with the venue that painting would be okay. He was told no. So I would not be attending Engage. I love painting at events; I understand the content at a much deeper level when I paint. But more importantly, I feel that if a venue is unwilling to accept the “messiness of art;” they are also unable to accept the messiness of patients.

On Tuesday I was walking in the hallway at Health DataPalooza when Veronica Combs approached me asking if I were going to attend Engage. I told her no because of their stance on my painting. I followed up by telling her I had considered protest painting in front of the conference hotel to make a point. Then Veronica did a brave thing. She did not laugh off my response or grow offended. She listened to me and started making calls. That evening I got an email from Chris Seper who was running the event. He explained at the time of my request there were putting out a lot of fires, hence the “no” answer and admitted the idea of me painting out front was sort of exciting. But would cherish my work more if I came in and attended the event.

So I attended on June 5-6 and painted “My Baby.” I was also excited to see so many of The Walking Gallery members and amazing patient rights advocates like Gregg Masters, Pat Salber, Mary Anne Sterling, Alisa Hughley, Karen Herzog, Sherry Reynolds, Victor Montori and Matthew Holt at the event.

The first thing I painted was the swirling funnel of energy I felt within this space. The air crackled with a multitude of attitudes about patient engagement. The swirl quickly became a man and a woman embracing within the maelstrom. Their arms formed a ring. When attendees questioned the symbolism I reminded them that in the world beyond the medical conference “Engagement” means a very different thing. It is a time to rejoice and send congratulations to the happy couple.

I painted swirling litter in the funnel. This alluded to two things: one was the conference hashtag on twitter which quite a few folks thought a snarky reference on a McDonald’s type of engagement, secondly in honor of Wil Yu’s framing speech. He reminded us of the 50 year campaign to reduce littering and the struggle to create culture shift. He used a Mad Men clip to remind us how common it was once to just throw trash on the ground. Through twitter Leonard Kish asked the crowd:

Then I began to paint the skyline of Enid, Oklahoma. This is the town where I was born and spent the summers of my youth. Recently, Oklahoma has been buffeted by a series of tornados. Listening to NPR, I heard several folks commenting that residents should just move to another state. Those statements reminded me of the often-paternalistic attitude toward patients who are non-compliant. Leave the land that a family has lived on for generations? I think not.

The skyline of Enid has some rather famous grain elevators. These silos seem like skyscrapers on the prairie. Located side by side, I modified one into a pillbox with the Sunday slot open. The tornado funnel of patient engagement approaches these silos preparing to disrupt. Right about then Will Yu was taking questions so I jumped up and grabbed the microphone to ask, “What are you doing to include artists and poets and musicians in culture change?” He spoke about all the work the federal government did to encourage video challenges when he was with the ONC(Office of the National Coordinator for Health Information Technology). But I think Will forgot he no longer works there. What is Wil Yu, the amazing brilliant one person working for the betterment of patients everywhere, doing right now to encourage culture shift through the arts? To create culture change we must all take part: this is not the Beetles; this is Beetlemania.

The next day I began to paint the houses of MedCity with their pill capsule windows while Congressman Mike Honda addressed the room and spoke of innovation. Then Ramin Bastani founder of Qpid.me treated us to a surprise presentation. I have had the pleasure of painting about Ramin’s work two times before at Health 2.0. He is a wonderful change agent with an iPhone app that shows STD status. He has spent the last three years studying patient data access law in all 50 states and is now an expert on the topic. I watched this funny good-natured guy blossom into a force to be reckoned with. He might be wearing Hawaiian leis, but there is a steely determination under the apparent joke. So I painted his Qpid.me heart upon the Church door as I pondered the Freudian and somewhat prophylactic symbolism in the shape of a gothic arch Church window. When Ramin looked at my third attempt at painting his work he smiled as I told him, “Christ was into disruption.”

We were also blessed to hear from Peter Levin, who had worked at the VA on Blue Button, (download and transmit patient data) and Lygeia Ricciardi, Director of the Office of Consumer e-Health, ONC. As they spoke I painted a faint Blue Button symbol into the funnel. During lunch I had a chance to speak with John Moore III whao is CEO and Founder of RxApps and we spoke about the importance of the community pharmacist. So I added a mortar and pestle to the painting.

While this painting worked toward its resolution, a very special panel began: “What Do We Want as Patients, Consumers and Caregivers?” The moderator was Veronica Combs, Editor and Chief of MedCity News, the ever-irrepressible Suzanne Mintz, Co-Founder and CEO Emeritus, Caregiver Action Network, Adrienne Boissy, MD, Medical Director at Cleveland Clinic Center for Excellence, Sarah E. Kucharski, CEO/Chairman and Founder of FMD Chat and Roys Laux, General Manager Health Vertical, Angie’s List. As these women spoke, I returned to the funnel design of the painting. Dr. Boissy spoke of a client who she believed to be drug seeking. As she tried took a history the patient tried to describe her clinical journey. Dr. Boissy redirected the patient to focus on root problems. Then the patient explained her family did not believe her symptoms were real which was causing a great deal of stress. The patient, who was a pharmacy tech, said she was worried that she either had MS or parasites. The doctor then followed up with the question “Is there a history of abuse?” Now for those of use immersed in the world of medicine we are used to this phrase and know it is a code for drug abuse. This patient did not know that so she paused and answered: “Yes, I was raped as a child.” This answer led to Dr. Boissy learning that this patient was also a “cutter” who self-harmed to deal with all she had been through.

So now I knew why the clouds in my painting had the patina of an old bruise. As the stillness that emanated from this story filled the room Veronica Combs shared that she had a miscarriage and spoke about the shock of being told that news, but quickly apologized for sharing too much information.

As my eyes grew hazy from a film of tears and I looked at the faint symbol of Blue Button in the painting, it looked more like the image of an ultrasound than a healthcare symbol. I cried for Veronica who lost her baby in the messiness that is life.

At the close of this event I gave this painting to Veronica, I gave my art, my creation, my baby to the woman who made true patient engagement possible this day. Thank you Veronica.

My children often laugh at my rather empty cache on iTunes. For a very long time I had downloaded only one song and that was Martina McBride’s “Independence Day.” If you need a refresher on that song you can hear it here and the refrain is written below:

“Let freedom ring, let the white dove sing

Let the whole world know that today

Is a day of reckoning.

Let the weak be strong, let the right be wrong

Roll the stone away, let the guilty pay

It's Independence Day.”

Last 4^th of July, I listened to that song in continuous rotation all day as I painted Julia Hallisy’s jacket: “Independence Day.”

Independence Day a jacket for Julia Hallisy

Julia Hallisy is one of the stalwart defenders of patient safety in this nation. Today I want people to realize how much she and her family has been hurt by the current care system.

Julia’s Father’s Death:

Julia’s journey into healthcare harm began with her father Tony Bajone (legal name was Julius George Bajone) in 1988. Kidney stones were bothering him and went to the VA in San Francisco for treatment. It was determined that he needed surgery and pre-op studies were done, including a chest x-ray. Since he was a smoker, Julia asked his doctor if the chest film looked ok and was told the results were fine.

Nine months later Tony started coughing up blood.

A first year resident told the family that it was shame that they hadn't followed up with the chest film results. Julia was stunned and asked what the film had shown. The results had shown a large mass in his lung. The radiologist had written a report saying follow up would be needed immediately. Tony’s lung cancer that had gone untreated and at this point was terminal. Julia requested Tony’s medical records and the radiology report was not included. The VA said it was "missing" or didn't even exist. Julia went to the medical records department and told the staff that it did indeed exist.

They miraculously found it.

Julia’s Sister’s Death:

Donna Bajone, Julia’s sister, was born with a congenital heart condition that required surgery as a child. At the age of 25 she developed an irregular heartbeat. Donna went to Stanford University where she had been receiving care since she was 2 years old. She had no health insurance. Donna was too old in 1992 to be on her parents plan. (This lack of access has been addressed in the Affordable Care Act or what some folks call Obamacare) The bank she was working in kept her work schedule just below the number of hours to get insurance. Stanford did place a pacemaker in Donna on an emergency basis, even without the insurance. They released her in a few days and the facility requested she get on welfare if she wished to receive any additional care. Donna continued to experience an irregular heartbeat and several calls to Stanford did not help. They would not see her until the insurance or Medi-Cal coverage was available.

She died in her sleep less than a week later. Julia and her family tried to get access to Donna’s medical records after her death and they did not receive them for months.

Julia’s Daughter’s Life and Death:

Kate Hallisy died of Cancer at 10 years of age.

In 1989 five-month old Kate was diagnosed with bi-lateral retinoblastoma, which means she had malignant tumors in both eyes. This is usually a very treatable form of cancer, but things did not go well for little Kate. At 18 months Kate underwent surgery to remove her right eye. She had her right leg amputated in 1997 due to bone metastasis. In her last months the cancer spread into her brain. All throughout the family’s 10-year struggle they fought for appropriate care often finding themselves at odds with their insurer. In addition to being the caregiver of a very sick child, Julia would become the communication channel between the doctors and insurance; all while maintaining her dentistry practice. As the cancer spread they would have to fight for appropriate drugs to maintain a quality of life as Kate’s small body filled with cancer.

They even had to fight for access to an oxygen machine in Kate’s last months.

Julia wrote a book detailing her struggle to provide care for her daughter and to help others in their fight entitled The EmpoweredPatient.

For this is a fight.

There are folks who wish to join The Walking Gallery and hope to get a “pretty jacket.” Julia has this one. It is filled with beauty and pain. She has the weight of her family on her back.

I listened to “Independence Day” while I painted this because the pain she suffered is the same kind of terror as living for years in a home filled with abuse. Trust me, I know, I have suffered through both and they feel much the same.

Today is that day of reckoning.

This painting and my mural 73 Cents both contain the same quote from the Declaration of Independence: “Experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to arm themselves by abolishing the forms to which they are accustomed.”

I ask all who read this blog to write in your public comments supporting a need for

A Prototype Consumer Reporting System for Patient Safety Events here.

We need a safe way to report harm and abuse in they system. Please comment before July 8^th.

Do it for me. Do it in the memory of Fred Holliday II. Do it for three generations of Julia’s family who did not get to celebrate this Independence Day.

I have attended quite a few medical conferences over the years where health professionals from states that are struggling to improve their healthcare ratings remind the crowd that they may be bad, but Mississippi is worse. They may be 48^thout of 50 on obesity levels, diabetes care, low birth weight; but they end their speech with: “Thank God for Mississippi!”

These words draw a chuckle from the crowd because Mississippi ranks last or ties for last on rating systems. United Health Foundation and The Commonwealth Fund both place Mississippi as having the worst score on numerous measures and Mississippi has held this position for over 10 years.

So I was very glad when Cheryl Hamill, RN MS Clinical Outreach Coordinator from UMMC School of Nursing in Jackson, Mississippi reached out to me. Dave DeBronkart recommended me as a good choice of speaker for a potential keynote speech. The focus of this event would be heath literacy. She thought my background and health mission focus would be a good match for the needs of their mostly rural and very underserved population.

Now with most busy conference planners after this initial outreach and securing my agreement to present, the planner would hand me off to a subordinate. Cheryl is not like most conference planners. She kept me in the loop through two very informative planning conference calls with the speaking team. She communicated changes and new ideas through 177 emails in a six-month period. She friended me on Facebook and I began to know her as regular person. She joined twitter and began to tweet.

She was very organized and willing to try new things, which is such an unusual combination. Upon hearing my explanation of the importance of twitter in patient advocacy and the power of using twitter hashtags in communication during a conference, Cheryl decided to encourage all attendees to open twitter accounts prior to the event and raffle several prizes only eligible to those who “live-tweeted” the event. She even helped organize a pre-event tweet chat focused on how to “live tweet” a conference. I provided twitter guidance online as well as through a 1(800) number Cheryl set up just to facilitate tweeting.

Cheryl did not stop there. When I suggested we complete the conference by hosting and “unconference” session, she wholeheartedly endorsed the idea. So Bonnie Westra PhD, Associate Professor University Of Minnesota and I would teach the concept of open space to 89 unconference virgins in a little less than two hours.

That is what I call a brave conference planner.

On Monday June 17, 2013 we would meet just outside of Jackson Mississippi and discuss health literacy in this state. Our day began with Libby Mahaffey, PhD, saying opening remarks focusing on Cultural Awareness & Health Literacy...the Journey Continues. Next we would hear from Deb Washington, PhD, RN, Director of Diversity-Patient Care Services, Massachusetts General Hospital. Deb was an amazing speaker. Her power point deck had a crisp easy to read large font and she expounded on the difference between the Democrat belief in system design and Republican philosophy of individual responsibility within healthcare. She also showed us an advertisement from her Sky Mall magazine that informed travelers how to pack a suitcase with a built in compartment checklist for every need. We need this kind of organization in healthcare, she told the crowd.

Next Tonya Moore, PhD, RN, Chief Learning Office, UMMC spoke about Mississippi county health rankings and spoke in-depth about internet access within the state. She would soon introduce me and I would find out that she is the grand niece of Medgar Evers. She mentioned my mission focus of improving patients’ rights in relation to the history of civil rights. I was so very honored.

This was a special day for a keynote. This day was the fourth anniversary of my late husband Fred Holliday’s death. I could think of no better a crowd to share our personal story with on such a day, for I was in a room of those who had suffered and they understood pain.

When Terry Davis, PhD, Professor LSU Health Science Center began to speak she had the most amazing videos to share of patients with low health literacy being interviewed. One of the most poignant was of a young mother who did not know what a milliliter measurement was when dosing her children with ibuprofen. We also heard an elderly lady tell us she never bothered to read the warning labels. (On one of her bottles of medication she was advised not to drive and she had driven to the appointment)

Then I began to paint “The View From the 50 Foot Patient.”

The title of this piece was based on a corporate phrase and a B-movie title. I have been to quite a few events where I hear the phrase “Let’s take the 50,000 foot view.” I must admit I want to roll my eyes, because if you are taking this view you are in a highflying jet and way out of sync with those of us living in the daily grind of healthcare. I also felt a kind of exploitation of the b-grade movie when we watched the videos of those with poor health literacy. It made me think of the poor heroine of that film when no one would believe her due to her past history of alcohol abuse. So our lovely patient kneels down dressed only in a banner of drug warnings like some contestant in a pageant no one ever wishes to enter.

Behind her is a cloud of warning based upon the presentation of Melissa Stewart, DNP Faculty of Our Lady of the Lake College. She showed us her UPP (Understanding Personal Perception) to gauge a patients understanding using the image metaphor of a range from a bright sunny day to a deeply cloudy sky.

The second painting is based on the presentations of the second day especially Jonathan Vangeest, PhD, Chair Department of Health Policy and Mgt., Kent State University College of Public Health. This painting is called “Altar Call."

”

In this conference, unlike may others, the conversation of faith in was concert with questions of health and we benefited greatly from such dialog. We also heard the powerful story of Jonathan’s medical history. He was a promising student with an engineering bent when he was working in a workspace that all equipment was being sealed with a toxic sealant. Due to his hours spent in such an environment Jonathan suffered frontal lobe damage, which resulted in life long epilepsy. So within this painting a young Jonathan stares out of a stained glass window with the supervisor wearing a gas mask. Jonathan also spoke about the marketing of McDonalds and how they used a friendly clown to convince children to come and bring their parents to eat at McDonalds. So within the painting’s shadows I worked in an arched M and the clown’s face.

To the left is another M. It came from a speaker’s story about a local public health group that wanted to reach out to the “Mexican” population in their community. They built an entire health literacy program in Spanish. When they went to the community they realized the residents were Mayan not Mexican. I finished this painting quickly as I need to help Bonnie host the unconference session.

The unconference session was marvelous with 9 different individuals pitching sessions. I was able to host a session on how to crowd fund in healthcare, introducing the attendees to the wonders of Medstartr and HealthTechHatch. It was great. Bonnie was a wonderful facilitator making sure every session concluded when it should so the next could begin.

But everyone in the room learned it is not over until it is over. Then the raffles were won and I looked at the amazing reach of the hashtag on Symplur. You can see the analytics here and the transcript here.

The conference day finished and I thanked Cheryl for inviting me and I thanked God for Mississippi, not as some trite phrase or laugh line within a speech to inform. No, I thank God for Mississippi. I thank God as Jesus would. For in the parable of healthcare Mississippi would be the tax collector, the poor widow, the leper and Jesus saw the greatest hope with such as these.

The folks in Mississippi know what it feels to be the lowest of the low and from there anything is possible. Thank God for Mississippi.

The public comment of Regina Holliday on

“A Prototype Consumer Reporting System For Patient Safety Events”
(I have placed the slide image below in many of my speeches since September to encourage people to follow your work on this.)

Dear AHRQ Desk Officer and Doris Lefkowitz,

I have spoken at length these past four years since the death of my husband Frederick Allen Holliday II about the need for the patient/family caregiver to have real time access to the electronic medical record and the need for a national abuse telephone number/website for the reporting of harm. We desperately need this because there are always two sides to every story. As today is Sunday and the last day to report comment I will tell you this story.

As a child I would sit beside my mother in Church and draw. I know it is important to pay attention in Church, but I thought God would not mind if I drew pictures from the Bible. Eight years ago my son Freddie began drawing in Church. During one service, I looked down to see a peculiar picture on his drawing pad. The picture consisted of a series of small houses lined up along the bottom of the paper. Above the houses stood stick people and fish in the sky. Along the very top of the page was an elongated oval. I was stumped trying to figure out the meaning of this image. In my best Church whisper I asked, “What are you drawing?”

He looked at me as though I was being particularly dull and said, “Noah’s Ark…from below.”

I have seen many versions of Noah’s Ark in my life; but for the most part each picture contains a boat, animals, sunny blue sky and a rainbow. I never saw a picture of what lies beneath until Freddie’s drawing. I guess it is just a matter of perspective. Both images are equally valid and each focuses on a different part of the story.

Healthcare up to this point has been very blue sky focused. I commend you for your attempt to help us show the view from below.

I thank you for your request for comment on a Prototype Consumer Reporting System for Patient Safety Events. It is nice to be asked our opinion on such a important topic. I read your proposal. The language is a little hard to follow but to sum up:

The Agency for Healthcare Research and Quality (AHRQ) to request that the Office of Management and Budget (OMB) ask for approval of an information collection project: “A Prototype Consumer Reporting System For Patient Safety Events.”

Patient Advocates heard about this first in September of 2012 and had 60 days to comment, most of us missed this window, as it was not well publicized. AHRQ did get 45 comments and 65 personal stories in those 60 days. The project hopes to design and test a system that collects reports of harm using standard definitions and forms. Local providers can then use this data “to create or enhance their own local reporting systems.”

Now that clause bothers me a bit because a lot of us have already been reporting harm to our local providers and either getting no response or getting the response that our harmed loved ones were treated “within the standard of care.”

You mention that most healthcare systems do not ask for nor promote patient reporting of harm. I would respond it has been rarely in their financial or workflow interest to do so. You mention AHRQ is aware of the important and unique perspective of the patient/family caregiver. I would hazard to say that you recognize it because you are looking at the entire web of care throughout the US. You see the value in data aggregation from a wide variety of sources.

So it is the best interest of this study to consider large regional or national harm reporting. We have suffered through the voluntary local provider method for far too long.

(According to your letter, this research has the following goals)

1. To develop and design a prototype system to collect information about patient safety events.

Great! Let us know how we can help!

2. To develop and test web and telephone modes of a prototype questionnaire.

I would highly recommend you look at what Traitwise.com is doing in the survey world to see a system that has ease of use foremost in mind. Also please get some folks that are well versed in plain language to look at your word choice. The problem of being so well staffed with academics and researchers is that your word choice often reflects your worldview.

Also pictures and visualizations can be very helpful in creating greater understanding of the event intake form online.

3. To develop and test protocols for a follow-up survey of health care providers.

This demonstration project is being conducted by AHRQ through its contractor, RAND Corporation, with Brigham and Women's Hospital, Dana Farber Cancer Institute, and ECRI Institute…

Now, I am a mite concerned about the part where you talk about checking a patient report of harm against provider’s incident log. I personally saw a great many incidents of harm that occurred to my late husband while hospitalized but were not reflected in his medical record. In some cases this was omission in some cases blatant falsifications were recorded. Are you using the medical record to substantiate reporting of incidents? If so are you enquiring whether the patient and family caregiver were able to read the record in a real time fashion and able to amend errors in the record?

Those are my most pressing concerns right now. Please do reach out to us in the world of patient advocacy to help in the next phase of this project.

I must confess when I think of your organization in my mind I do not see AHRQ but an Ark. I see a promise to gather data in a kind of binary 2 by 2. I see a willingness to spread the knowledge that comes from that data.

Thank you for reaching out to all of us known as “the harmed.“ We will willingly share our saddest moments, our deepest hurt if by doing so you can promise it will never happen again.

We want to join you in building a rainbow, a spectrum of the many views in health care.

Regina Holliday,

Patient Activist and Artist, Founder of The Walking Gallery in Healthcare

The other night at dinner my youngest son Isaac said from the depths of his seven year old wisdom, “A human is the only animal that wears clothes.” He then went back to chewing his food as I nodded in agreement. Clothes and the adornments we place upon them say so much about the person. They can place a person on an economic scale and give a sense of belonging. Clothes can mark us as different and rebellious. If an outfit is strong and becoming it may be called a “Power Suit,” as though the clothes can make the man.

I think its works the other way within The Walking Gallery. Recently I painted a jacket story for Ian Eslick. Ian plans to wear that jacket for his dissertation defense at MIT. Ian is really smart, as in getting a doctorate from MIT smart; but Ian does not flaunt his mental abilities. He speaks from a patient view as he talks of data aggregation and the possibilities if we harness the power in patient reporting within scientific research.

The painting for Ian is entitled: “The Highest Double.”

"The Highest Double" a jacket for Ian Eslick

In this painting, I placed Ian, his mother-in-law and his two twin daughters. They are playing a game of Mexican Train. Have you played Mexican Train? I love it. I love it because it looks so hard at first but it is so easy. Someone had the brilliant idea to color code the dominoes. Each color is also a number, so seniors, children and parents can all play. I learned to play this game with my in-laws. I told my boss at the toy store we should carry it. He brought it in reluctantly. He said it wasn’t a very hard game, why would anyone want to play it? I told my boss it had some good addition drill and it was fun, but most important of all anyone could play. So if you look closely at these dominoes you will see they begin to morph from regular dominoes into patient reported diagrams. How can a chronic condition be affected if we remove one agent of causation and compare outcomes? What if we start comparing patient populations and look for doubles? Look for patterns? Think of that train of knowledge.

You see Ian is looking for that highest double. He is looking at entire patient populations just as you or I would look upon a pile of dominoes. He is looking for the match, the pattern, the train.

You might notice coins are laid upon this table (you also might notice they equal 73 cents). My family uses coins as markers when we play Mexican Train. If a coin is placed upon my domino track, I am unable to play on it and it becomes a train held in common. Anyone can play on it. In the game upon this table all trains are private. Ian has a train and his two daughters have trains. That final train with its foreshortened perspective facing the viewer; whose train is that? It is yours. It belongs to all of you who look upon Ian’s jacket. You are welcome to join this game of data.

Ian wants you to play.

Patients Included

In September of 2011 ePatient Dave asked me to paint a painting depicting his concept of "let patients help." I painted a painting of patient on stage before a crowd. This was a nameless patient that existed in my mind. The painting was not a good fit for Dave but upon second and third glance I realized it looked a lot like Lucien Engelen.

I learned about Lucien’s campaign to include patients at every conference back in 2012. He wants patients included in the design phase, attending the event and then on the stage. If a conference is willing to do that they can use the patients included logo on their event.

Today I read that through Lucien’s tireless efforts and others like him a Dutch conference was held at which 100 of the 600 attendees were patients!

I salute you Lucien!! So I updated this painting to include Lucien's current beard and glasses and will happily send it on to his home in the Netherlands.

Thank you Lucien from all of us!

If you visit the corporate offices of Merge in Chicago you will see a well designed space with a touch of candy. You will see modern tech next to vintage video games. As wandered around their offices I made the connection, “Oh, I have been in your booth at trade shows!!! You have the candy and the games! You are the ones that just offer a space to eat and play rather than the hard sell.”

I wondered aloud if they understood the feeling they were evoking in attendees. Patient or provider, we were once all children. We once had very little freedom and very little money. When we infrequently had the freedom and opportunity to spend what little we had our choice was usually between video games or candy.

So within Merge, a company that specializes in the exchange of digital medical images, we are reminded of the freedom and choice of youth and to choose wisely.

I feel like I attended the Merge conference twice because of the novel way the event was created.

I flew to Chicago and on August 5^th presented a keynote speech in front of the Merge internal staff. My speech was filmed and edited to include the slides. Then the speech was presented during #Mergelive via live stream on August 13^th.

Now if you follow my work, you know I paint the conferences I attend. This was the first time I live-painted a live-stream. I painted throughout the morning while listening to the other speakers.

I heard about the Merge Honeycomb Image Sharing and pondered the deep symbolism within that image. Merge works with radiology departments to quickly and securely transmit images. This is a big deal for patients. All too often over-testing can occur when images are not quickly made available within the care environment. Patients are exposed to additional radiation through unnecessary tests without timely access to such data.

If we are watching for the first signs of radiation harm, we need look no farther then the bees.

So within the painting #MergeLive I painted honeybees upon the honeycomb. I placed a patient in the center. Her back is to the viewer as she ponders her few coins and looks upon candy machines. These machines rest upon the spiral of a DNA double helix.

To our patient’s right a series of video games are displayed with names like Cerner, Surescripts and Epic. Here is the background service provider the patient does not see; but these venders are a large part of making image access a reality.

After my speech was streamed, I took part in a 40 minute QandA in the internal chat network. I also tried to tweet as well. There were very few people tweeting and that made me somewhat sad. The reason given was many of their facilities blocked social media sites. So I tweeted:

This caused a rousing debate on privacy and security vs. sharing in the internal chat. I think a lot of the IT folks did not know what to think of me and my e-patient brethren. How could we assign such low value to keeping our data private?

I wish all of my twitter friends could see the comments back and forth upon that topic, but it was a private chat.

I enjoyed #MergeLive, but next year I hope they jettison the internal chat and embrace the hashtag.

Let’s open up, let’s share and let’s do that publically.

This is the third year of the Walking Gallery of Healthcare. We now number 230 members walking around the world with patient story Paintings on our backs.

This "walking wall" is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

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

As of August 2013, 230 unique Walkers have joined the Gallery wearing 256 jackets. The Gallery has representatives on five continents, but the majority of Walkers reside in the US. One artist creates the majority of the art, but new artists are joining and currently make up 10% of content creation within of the Walking Gallery. The Gallery is promoted heavily on twitter, facebook and personal blogs. Its widening appeal within the health conference community is creating a new space for patients at such events.

The Artists of The Walking Gallery:

1. Regina Holliday 230 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 5 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 2 jackets

14. Jonah Daniel 5yrs 1 jacket

15. Fred Trotter 1 jacket

16. Leela 7yrs 1 jacket
17. Gayle Schrier Smith 1 jacket
18. Moira Simms 1 jacket
19. Joan Holliday 1 jacket

20. Adalyn 1 jacket

Year Three

256. "Silent No More" a jacket for Alice Mwongera

255. "My Chickens" a jacket worn and painted by Adalyn

254."Fly Space" a jacket for Colin Hung

253. "The Highest Double" a jacket for Ian Eslick

252. "Shift" a jacket for Nick Van Terheyden

If you would like to join the Gallery please find further instructions below the pictures of jackets of year three.

Here is a short film on the DC inaugural Gallery event:

http://vimeo.com/24857924

Read: http://reginaholliday.blogspot.com/2011/04/walking-gallery.html

to understand the origin of the idea.

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

To view the jackets in year one 1-162

http://reginaholliday.blogspot.com/2011/06/welcome-to-walking-gallery.html

To view the jackets of year two 163-251

http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html

Logistics of the Walking Gallery: What you need to do to be a member:

1. Promise that you will wear this jacket to conferences and public events in order to spread awareness of the power of the patient voice.

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

3. Tell me your patient story or patient-centered concept that is the center of why you work in health and medicine. Please send via email with some pictures if possible of yourself or the people in your story. If you don't want to provide a picture, that’s okay, I have a vivid imagination. Also please print it out and send with jacket so I can keep track of jackets and their stories.

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

5. I am using Twitter hash tag to link us all together so please tweet about your jacket appearances under #TheWalkingGallery

6. You are free to use the image in your own advocacy mission; I also retain the right to reproduce the image for advocacy purposes.

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

Welcome to the Gallery.

Any questions?

I was honored to paint a jacket for fellow widow Alice Mwongera. You can find her on twitter as @voice_patient or on Facebook. She decided to speak out and try to change the world.

Alice lives in Nairobi Kenya and a few years ago her husbandwas very ill. His kidneys were failing and in desperate need of dialysis treatment. They went to the public hospital. Their private insurance was depleted due to her husband’s long illness and there were no other choices. They waited for six hours in the busy waiting room.

In that room they waited, knowing each minute the condition worsened. In that room a marriage and a life ended. Alice’s husband died without receiving appropriate care. She went home a new widow to care for her young daughters.

Soon tragedy struck again. Six months after her husband’s death Alice’s brother Morris Moses developed a bad cold and began to have trouble breathing. They could not afford the payments a private hospital would require so Alice and her brother went back to the public hospital in despair. He needed ICU care and his subsequent treatment was substandard. Morris slipped into a coma. When Alice asked about treatment plans and diagnosis the staff decided to dump Morris in the standard ward. He died 20 days later, having wasted away. His diagnosis was never determined.

Alice decided to a very brave thing. She quit her human resources job and began to fight for the right of all patients. She realized in her country, like many others, the healthcare system is broken. She has vowed to be silent no more.

I painted her at the beginning of her struggle. Here in the chaos of the waiting room she holds her husband in her arms as her brother leans upon her shoulder. The staff moves busily by not hearing her calls for help.

Alice has a small organization called the Morris MosesFoundation, but she counsels other activists to do something to change things. Do not worry about the money or wait for funding; focus on action and spread the word.

I think Alice and I have much more in common than just being widows. We may be a world apart but I agree to enact system change we must speak out. Nothing will stop us.

Thank you Alice for being our first Kenyan member of the Walking Gallery.

When I paint about members of the Walking Gallery, I learn such amazing things. I see blog posts written before twitter was even born. I read books that describe tragedy and learn about rare and often fatal medical conditions. I delve into Facebook pictures and twitter comments of yesteryear. All this I do, in an attempt to walk within the story so I can depict the soul.

My challenge in creation is the quiet ones, the modest ones. The one that only exist as a mention in a pdf or a chair in a committee, their deeper story is as hard to find as Hansel’s fateful crumbs.

This is the jacket painting of Karin Jay. It is entitled “Return Flight.”

In this painting, Karin stands as a girl throwing paper airplanes in the air. These airplanes are the colors and shapes of The Joint Commission logo where Karin worked for 23 years. They circle around a Planetree. This is the tree under which Hippocrates would lecture and is the symbol of the organization for which she currently works.

Upon the paper airplanes ride patients. The patient in her hand is a new mother and receives help from the Infant Welfare Society of Chicago. The patients to her right are her parents who have survived cancer and heart disease and her best friend who survived cancer as well.

Karin knows each day the work she does helps patients just like her friends and family. Karin taught me quite a bit in researching her life. Although she is not yet using Facebook and twitter, Karen does have a profile on LinkedIn. So to reach out to folks like Karin who are rather quiet in the world of social media, I built a LinkedIn group entitled The Walking Gallery of Healthcare.

I hope to see you there to welcome Karin into the family.

I love Google image search. I must admit when I research someone I begin with pictures. Pictures can tell you so much about a person. I thoroughly enjoyed researching Lisa Donnarumma as the picture that I saw again and again was of a dog. A particular type of dog seems to be associated with Lisa. Lisa likes labs. She enjoys their spirit and exuberance. They are not very good at sitting still and have a little trouble doing exactly what they are told (like many e-patients).

Lisa loved her own lab Caya and wanted the world to see her smart special friend. She enrolled Caya in an agility trial with the New England Community of Canine Agility in 2008. As they waited Lisa realized Caya might be the only lab in a sea of Border Collies. As Caya barked within a crowd of obedient dogs, Lisa wondered if they could quietly slip away. At that moment their names were called.

With great trepidation Lisa walked Caya toward the course as the crowd of hundreds watched their progress. Four times Lisa said Caya’s release word “Okay,” yet Caya did not move. The tittering crowd was filling with outright laughter. Lisa felt like she was going to faint. At that moment a voice rang out saying “Lab Power!” Lisa was so glad someone understood! She said to Caya “Simon Says OKaaayyyy!” Caya quickly completed the course and they walked right over to the man yelling “Lab Power!”

And so this painting has a name:"Lab Power."

"Lab Power" a jacket for Lisa Donnarumma

That yelling man was Rich Dennison. Lisa soon met his beautiful yellow Labrador Gabby. Rich and Lisa became friends. Rich was one of those beautiful people. He was positive and supportive to Lisa and Caya, new to this course; but he shouted his support of the other teams. He always had a good word for his dogs regardless of how well they completed the course.

Lisa always looked forward to spending time with Rich on the weekends. Her weekday world focusing on healthcare policy would find respite in these breaks spent with such an unfaltering positive person. So that was the life of Lisa and her friend Rich until three years ago.

Rich came to a meet looking very sad. He had just found out he had pancreatic cancer. He was sad because he might have to stop participating in agility trials. Rich’s friends surrounded him with hugs and tears. Lisa, who worked in healthcare, was well aware that pancreatic cancer is often called a “kill cancer.” She knew Rich could leave them within mere weeks.

But to the surprise of many Rich rallied! He enrolled in several clinical trials whist running agility courses and undergoing treatment. Rich credited his extended life in part to his work with the dogs. His positivity coupled with treatment seemed to beating the odds. His novel approach at fighting cancer succeeded for three years.

In March 2013, Rich could no longer participate in clinical trials. He was failing rapidly. He looked frail and sad. He wanted his dog Gabby to get a chance to compete and finish her lifetime achievement award. Rich’s friends stepped forward and ran Gabby in his stead.

Then the entire New England Agility Community step forward to help. They created purple bracelets to wear in support of those living with pancreatic cancer. Lisa bought two one for herself and one for Captain Jack her young black lab. They wear those bands within this painting. Rich was so honored and he continued to attend and watch his dogs run until summer 2013. Then Rich’s family informed the agility community that Rich had entered hospice. He would not be coming back.

That is when the New England Agility Community created the “The Spirit of Agility Award” in honor of Rich Dennison. The money raised by the sale of the purple bracelets will fund this award and support cancer research. The first of what will be an annual award was presented to Rich Dennison at the New England Agility Team trial meet on May 18^th, 2013.

On June 2, 2013 Rich died.

Some have said he lost his battle cancer. I say that statement is wrong.

I painted Lisa’s jacket depicting the trials of Rich Dennison. I painted him with his beloved lab Gabby upon a hill of medicine. I painted Captain Jack racing through weave poles that are test tubes in a lab. You see Rich was one of those wonderful people who dedicated the end of his life to research of a terminal disease. He went through trial after agonizing trial. These trials had their u-turns, their ups and downs and time was of the essence. All the while he worked with his dogs and no matter how they did he praised the result with a smile and said “Awesome job!”

No, Rich did not lose a battle. He finished his course and has been called home. We are left to say, “Awesome job, Rich, awesome job.”

This weekend I painted Donna Cryer’s jacket in a park filled with children. I was running a booth at a local fair and representing Christ Lutheran Church, my art and the wonder of playing with Legos. Our booth was a very different type of booth from the others in the park. Most booths were operated by local organizations as fundraisers. The Lions made popcorn, the Cub Scouts made French fries, and so on. Each booth team was working so very hard on fundraising that they had little time to explain their mission or talk to potential new members. When I registered our booth as a non-profit, I was quickly asked, “What are you selling as your fundraiser?” I responded, ”Oh, we aren’t focused on fundraising, we just want to let the kids to be able to play a free game and learn about activities at Church.”

Yep, we were rather odd.

I explained Donna’s story to many children as I taught them how to build structurally sound Lego towers. The children looked at the jacket, which appeared to be a landscape and looked at a picture of the human liver that I was referencing while painting. “Why the liver?” they asked. I explained I was painting the life story of Donna Cryer and she had a liver transplant 20 years ago and that experience has affected her entire life path.

This is Donna’s jacket: “The Landscape of a Life.”

"The Landscape of a Life" a jacket for Donna Cryer

I saw Donna Cryer at health events in DC for the past 4 years. Her husband and business partner Dennis Cryer, MD often accompanied her to such events. They seemed to dance within the crowd, gentling circling the conversations and always returning to each other. They represent CryerHealth a consultancy with a mission to improve communication of doctors and patients.

You cannot help but notice Donna in a room. She is beautiful. Her face shines with warmth and her eyes sparkle with intellect. She always wears the most becoming dresses and suits. She looks the consummate healthy professional. You would never know how much Donna has suffered in her life.

Donna is a 20-year liver transplant survivor with activeCrohn’s disease. She is well aware if the challenge of chronic disease management. She has coupled this intimate health experience with a law degree and is an amazing advocate for other patients.

Within this painting I represent her love of the law with a scales of justice that doubles as a children’s toy. The weights and measures trays are replaced with tire swings and happy children.

Donna as a child drives by in a sporty red pedal car with a vanity plate: ”LIVRLDY.” She likes to drive health care discussions and often does it through her own determination.

As I explained the wonder that is Donna, I was showing a crowd of girls how to build their Lego towers. These young ladies had never had much exposure to building technique. Many of the girls just kept stacking block upon block and would watch their towers fall as the game began. I asked the crowd, “Do you know about bricking? Here, place this brick on top of the two other bricks at a point of connection. See how strong your wall is when you build it this way?” The girls smiled up at me and quickly built much stronger walls and towers.

Bricking is a great metaphor for the work Donna does. She connects people and organizations helping them build strong foundations in patient advocacy. She helps them on a personal level, and much like our little booth in the park, Donna well knows sometimes you must focus on education and advocacy over fundraising.

I salute you Donna for your bravery, perseverance and dedication to helping patients throughout the landscape of care.