My Baby

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.

Stair Steps

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 a happy, loving mother and the perfect grandmother to our kids. Complications began to catch up with her 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  moving from a “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, when 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 between 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.   

Patients as Brand, Advocates

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 $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 a 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. 

*********************************************************************************
Update: Andrew wrote this response piece: Learning a Lesson from Patient Advocates

Thank you Andrew for joining the conversation!

Mother's Helper: The Tale of Henry Lent

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^th grade 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.

Seek and You Shall Find

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 a Walking Gallery member. 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.

Keeping it Real

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 when 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.

Moving

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.

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.