Let Freedom Ring

This winter was hard for me. Winter always is.  In my mind, I walk through yesteryears and live through the months I lost my husband Fred. 

I had a bad cough in January and February just like I had in 2009.  My cough was pertussis this time, not a chest cold.  This time it was my ribs that broke from explosive coughs, instead from metastasis as Fred’s had.

This winter I felt I had to finish my memoir, so while coughed I wrote.  I tied together the story that I have been working on for five years.  This past week it became available on Amazon and it is called The Writing on the Wall.   I had wondered why I felt so frantic about quickly finishing my book on the importance of patient data access, but I have learned not to question such feelings.  I just act on them.

Then I went to HIMSS15 in Chicago.  Then I heard CMS (Centers for Medicare & Medicaid Services) was considering cutting a key measure that affected patients in Meaningful Use Stage 2.  Facilities and Providers complained that they were not able to ensure 5% of patients would view, download or transmit their data in the Meaningful Use Stage 2 reporting window.  Anyway, they assured CMS, patients did not want access anyway.  So CMS proposed gutting the legislation, removing the 5% requirement and replacing it with literally “1” patient.  

That is a slap in the face to patient rights and all the advocates who have fought so hard to ensure patients could access their data.  That is a slap in the face to projects like Open Notes, a study that proved that patients have better engagement when they can read their records.   

We must act swiftly to counteract the belief that patients do not wish to access the information that is by rights is theirs. 

1.  I am asking everyone to comment on the federal register Medicare and Medicaid Programs; Electronic Health Record Incentive Program-Modifications to Meaningful Use in 2015 through 2017 before June 15, 2015:

https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to

The section I am very concerned about is
II. Provisions of the Proposed Regulations,

• B. Meaningful Use Requirements for EHR Reporting Periods in 2015 Through 2017
• (c) Changes to Patient Engagement Requirements for 2015 Through 2017

Here is what is proposed: 

 "Patient Action To View, Download, or Transmit Health Information

++ Remove the 5 percent threshold for Measure 2 from the EP Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient seen by the provider during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider.

+ Remove the 5 percent threshold for Measure 2 from the eligible hospital and CAH Stage 2 Patient Electronic Access (VDT) objective. Instead require that at least 1 patient discharged from the hospital during the EHR reporting period views, downloads, or transmits his or her health information to a third party. This would demonstrate the capability is fully enabled and workflows to support the action have been established by the provider."

You need to let CMS know that patients do care and we do want to use our portals or access Blue Button.  We do want to be a partner in our care and that starts with access. might find it scary to write a comment, but fear not.  I just self-published a book as a dyslexic person suffering dysgraphia, I swear I did my best but my work is filled with spelling and grammar errors.  Even so, the beauty and purity of story shines through.  Tell your story too and explain why it is so very vital that patients be able to go online and read their information in a timely fashion.  If it is challenging to use your portal let the vender know and let the provider know.  If you need help getting logged on let your doctor and their staff know.  We will not make the system better if we do not use it and improve it. 

2.  I am asking you to stand with me, to paint with me, at noon on May 20, 2015 in front of the Health Human Services Headquarters Building at 200 Independence Ave, SW in Washington, DC.  Let’s show that we care in this very public way.  Even if we are just artists, even if we are just regular people, we care about getting access to data.  Lets paint about core measures and blue buttons on a concrete field.  Lets gather The Walking Gallery and show HHS we care.   I ask you to do this on May 20^th, the day my husband entered hospice in 2009. 

3. Please SIGN this petitionTODAY and share far & wide with your moms, family, friends, colleagues and networks.  Be part of a movement of individuals working toward greater patient access. 

Hashtag: #MyData

Resources:

·         PETITION: www.getmyhealthdata.org  (Bitly: http://bit.ly/1QyfYuG)

·         BLOG POST: Do it for Mom: Sign Up to Support Electronic Access to Your Health Records Today

·         BLOG POST: Mother’s Day is patient records access awareness day for consumer health advocates

·         FACT SHEET: What Health IT Means for Women (National Partnership for Women & Families)

4.  On July 4^th let’s declare a Data Independence Day!   That day we should all go on our patient portals, send our doctor an email, schedule an appointment and download or view our health information.  I know it is a national holiday and the doctor’s office is closed.  That is one of the reasons we patients want portals and Blue Button access.  We want to access information in a timely fashion day or night, whether it is a holiday or not. 

And God forbid something dreadful happen on a holiday.  It did in my small town last year. A local third grade boy was burnt on the Fourth of July.  A sparkler ignited his clothes. Most of his body was burnt and he is still having skin graft surgeries.  He is exactly why we must have access.  Illness and injury happen regardless of holiday schedules; and the internet never sleeps.

Have you listened to that song by Martina Mcbride?  It is called “Independence Day.”

“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.”

In that song abuse is described.  Independence Day is the day abuse could no longer be tolerated.  I suffered through 17 years of child abuse and I can tell you being stuck in a hospital without access to information hurts your heart and soul, as assuredly as any belt or switch ever hurts your skin.  If CMS guts this measure, the welt they will create will become an insurmountable ridge separating us from our data.

This year Mother’s day falls on my birthday again.  Just like it did in 2009.  This year my husband will not give me a birthday gift or a Mother’s Day gift.  He died too soon, partly due to poor access to data.  You are still here and can give the most amazing gift. 

You can publicly ask for your data, you can paint with me or demand a day of action.   

It is your choice.  You can help make a better future for us all.    

The Web We Weave

On January 29^th, 2014 I was honored to present at the 1^st Health Informatics Tri-State Summit on the campus of the University of Southern Indiana in Evansville.  The room was filled with energetic folks with interesting questions.  I was honored to present and paint.  This was of those venues where I painted in the front of the room and occasionally threw out questions to the speakers whilst painting.

At the event, I painted this piece entitled: “The Web We Weave.”

Gabriela Wilson began the day by greeting us warmly.  Peggy Graul explained the schedule of the day.  She even mentioned the twitter hashtag: #hitsusi and that made me very happy.  You can see it archived on Symplur. While they spoke I painted a swirling winter sky. As they explained the foundation upon which they plan to build future conferences, I painted the new earth ready for seeds.  Then I put down my brush and began to speak.

I delivered a speech entitled the “Power of Stickers” at 9:15.  It was very well received.  After my presentation some audience members spoke to me during the break.  One was a lovely woman mentioned she was going to DC soon with her life partner to be married.  I painted her into the painting at the upper left holding a small rainbow flag.

At 9:30 I was so excited to see Jeff Donnell, President of No More Clipboard speak.  This is my third time to see him speak and he is always great.  He began by blasting bad stock photography of patients used by so many healthcare institutions.  He explained what was happening in the HIE (Health Information Exchange) in Indiana.  They are doing some great work. They are also working on a pilot that got me so excited I copied its title right from the state of Indiana HIE site: “Implantable Cardiac Device Consumer Data Integration -- Use HIE to engage the patient in care management for chronic conditions and diseases by allowing health data to flow from an implantable cardiac device to both an EMR/patient portal and the patient’s PHR.”

While Jeff was discussing these topics I began to paint and HIE web into the painting.  This wasn’t the beautiful web of the orb spider. This was a cobweb.  I have attended HIE meetings all over the country.  Some systems are successful some are not, but most were built in fits and starts without a concept of over all design.  But like the common cobweb these structures still do the job of catching things. 

Then Jeff spoke of his work trying to incorporate patient data access to the HIE as part of an ONC Challenge Grant.  He said he now knows why they are called Challenge Grants because there was no blue print for patient access.  Then I realized the metaphor of a cobweb was more sweeping than was intended.  Unlike orb spiders, cobweb spiders do not live in their webs; they just use them and abandon them.  I fear HIE’s may suffer a similar fate if the patient is not made at home within their structure.

I painted a circle of people holding up the web.  Peggy Graul is front and center since she brought us the conference.  Jeff stands, clipboard in hand to the right distant side of the web.  He stands beside our next speaker Andrew VanZee.  

Andrew is the statewide Health IT Director. He elaborated on Jeff’s point and informed us of his focus on folding rural communities into the structure of an HIE that was designed with metro areas in mind.

Next we had a lovely lunch.  They sat us all in the same room at long tables instead of table rounds.  It was great!  It felt a little bit like eating in elementary school when friends surround you. 

Next up was Sunny Williams, VP of business development Telemon Corporation.  This was a high level talk about technology and telecommunications and how they apply it to healthcare. I placed Sunny to the far back left of the painting.  Her speech was a good speech about an interesting topic, but seemed out of phase with the other speakers.  This crowd had a relatively low adoption of social media and needed more information focused on their unique needs.  I did tweet my disagreement with her statement: “Who has time for social media with all you have to do?  There is a paid (marketing) workforce that does it.”  Social media is always more real and therefore successful when it is done by the individuals within an organization.   If social media is done well, you will have more free time, not less.

Next Keith Kelley, VP Professional Services, Indiana Health Exchange began to speak and I painted him into the lower right side of the painting.  He was a great speaker and as he spoke the room became more informal with folks joining in shouting out questions and answers.  He added greater nuance to the words spoken by Jeff and Andrew earlier in the day.  

Giving examples of HIE was working in Indiana, he mentioned that some towns with competing hospitals are sharing info with their Cerner systems. He ended his talk with stating consumers would be the ones to change health care. While Keith spoke, I realized a focal point was missing from the center of the painting.  I decided to stick the torch from Indiana’s State flag right in the middle of the web.  It would act as a beacon to other HIE’s in the nation.  The torch shoots out sparks to its border brethren and in the distance we see the flags of Ohio, Illinois, Iowa and the United States.

Next Robert Hoyt, MD, Director of the Medical Informatics Program School of Allied Health and Life Science at the University of West Florida began to speak.  The last time I heard a speech with the breadth and detail that Rob gave was when I saw Eric Topol present at HIMSS in 2013.  His title was : “The Future of Health Informatics Don’t Blink.”  He covered so many things from sensors to legislation to culture. These were all important topics, but the part I painted was about a patient encounter.  Robert shared that when he was a young doctor he saw an elderly patient who had been seen by so many providers but not one of them had told the patient he was terminal.  Dr. Hoyt went over the man’s medical record and explained what things meant and that these tests and these treatments meant that he was dying.  The man thanked him.  The man just wanted to know.  So I painted the man holding hands with Robert.  The man’s bag is packed and he is ready to go.

 

The last element in the center above the torch is an LED light.  Right now in my life I am moving into a new house. The old 1930s light fixtures need 10-watt bulbs. 

A few years ago, that would have meant ripping out fixtures and replacing them.  Now with LEDs that is no longer necessary.  This is the beautiful thing about technology.  When it works well, it allows us to take more time for other things like caring for others.  It gives us the light to appreciate old-fashioned things and concepts, like holding hands while someone is dying.

#MergeLive

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.

A Hospice Card at HIMSS13

I talk about HIT (Health Information Technology) often.  I am very excited about the potential for HIT to allow patients better access to information so they can make decisions about their health.  I attend a lot of policy meetings on the subject of HIT and the subject of patient safety.  Those conversations are wide-reaching, but one topic that is rarely touched upon is end of life.

Like many people in our culture, policy folks often side step this conversation in favor of a safer topic like “disparity.”  We can have in depth discussions about the need for a reduction in hospital readmission, but not address the panic readmit of a hospice patient when the family is ill prepared for the final days.  I can watch a room full of people hash through clause after clause on Meaningful Use regulations and see them barely touch upon transmission of advance directives.

So, I am bringing a large hospice card to HIMSS13.

HIMSS 2013 Annual Conference andExhibition is March 3-7, 2013 at Ernest N. Morial Convention Center, New Orleans. The HIMSS (Healthcare Information and Management System Society) conference focuses on Health information Technology and Informatics.  The conference is the largest in the field of HIT and 40,000 attendees are expected. 

I will be attending and painting on site on March 5th. I will be in a special session:

 

“PatientExperience through HIT Forum” location: Room 252

Is e-engaging with your patients worth the effort? This one-day forum features three sessions dedicated to the value of enhancing the patient experience.

Making Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives: Case Studies in Patient Engagement

March 5, 2013 
9:45 AM - 10:45 AM

Description:

Speaker(s):

§  Eric Manley

§  Simeon Schwartz, MD

§  David Rowe

The Business Case for Implementing a Patient-Centered Communication Strategies
1:00 PM - 2:00 PM

Description:

Speaker(s):

§  Jonathan S Wald, MD, MPH

§  Dave Chase

 

Building Patient 2.0: Engaging People in Health through Consumer-Facing Devices and Tools
2:15 PM - 3:15 PM

§  Sandra Elliott

§  Christine Robins

§  Jane S. Sarasohn-Kahn

I am really excited to paint these sessions as I know several of these speakers and they have amazing things to say about the intersection of patients and health information technology.  I am happy that Meaningful Use does require that 50% of the time hospitals/doctors find out whether a patient has an advance directive, but I wish it were for 18 and older not just 65 and older.

Many folks at this event will be talking about the power of patient reported data and its importance in a vibrant electronic health record.  But I bet most of those folks will be thinking about data submissions as information from scales and blood pressure cuffs with wifi rather than wondering if their local HIE (health information exchange) can connect with a personal account on MyDirectives.

If you come to the session please sign the hospice card.  I plan to send it to Hallmark via a few of my Kansas City friends as an example of our support of an End-depth discussion on policies that affect us all.  

If you do not make to the Patient Experience through HIT Forum, there will be a post session tweet-up on Patient Engagement at 3:30 at the HIMSS Social Media Center.  I hope to see you there.

Lives not Livelihoods in Meaningful Use

If I were to die tomorrow and all that was left of me was my right hand, you would know two very important things about me.  You would know that I am a painter and I was a writer.  No matter how often I scrub my fingers the patina of paint discolors my cuticles and the cracks in my skin.  And though I left a childhood of writing lines 30 years behind me, I still have the finger callus of a longhand writer. 

If I were to die tomorrow, and all that was left of me were these words that I write.  You would know I learned how to type on a typewriter.  The two spaces behind each line is a tell.  I learned to type in an age where uniformly sized keys created unevenly spaced letters.  Hence two spaces were necessary to signify the end of a sentence.

I do not need to do that anymore.

Yet, I persist.  I have tried and tried to change my ways and press the bar only once, but I fail.  I have fallen into the siren sway of habit.  My muscle memory runs ahead of my mind and leaves my thoughts to rest two spaces behind the last.

Today while working on my public comments for Meaningful Use Stage 2, I saw once again that the American Hospital Association has decided to promote livelihoods over life itself.  They do not support our rallying cry that patient data access must be part of Meaningful Use and it must be timely.  In stage one Meaningful Use the rule called for access within 4 days of request.  As we head toward defining stage 2 many patient advocates are asking for data access within 24 hours or real-time.  The AHA (American Hospital Association) is asking us to go back in time and accept data access 30 days after a care episode as was codified under HIPAA.

AHA is stuck two spaces behind us. 

 This organization is living in a world of 30 years ago, consisting of typed reports and hands that are marked with the callus of a scribe.

Their very insistence of a return to the rules of yesteryear demonstrates the dangerous path of habit itself.  Once you begin to design systems without patient inclusion it becomes habit to leave us out.   Habit tends to settle like concrete, pliable only in it early stages and hard as rock as it cures.  Like concrete, habit crumbles in time, but often it takes decades or jackhammers to remove it.

I urge those who are in a position to create the final rule of Stage 2 Meaningful Use to be brave and leap beyond a past care model that left patients out and embrace a new tomorrow of patient inclusion.

I urge everyone to publicly comment before May 7, 2012.  Please send a message strong and clear that we are all patients in the end and we deserve to see our own information.  Do it for the ones who died due to simple errors hidden within closed records or comment for the children yet to come who will live in a different tomorrow.  They will not comprehend an education system that creates a writer’s callus. They will expect timely information.

You are setting the concrete upon which these children shall tread.  You decide.  Shall they lead the world or shall they walk two steps behind? 

Long Stories: The Story Of Meaningful Use and Why the patient voice matters..

View more presentations from Regina Holliday

Ashes: HIMSS Day 1

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

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

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

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

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

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

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

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

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

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

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

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





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

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

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

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

Journey to Joy: Painting Regina Benjamin, MD

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

That day was the announcement of stage one Meaningful Use.

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

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

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

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

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

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



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

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

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

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

We must start our journey to joy. 

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

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

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

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

Measures

Yesterday I gathered my easel and my testimony, and descended into the conference room depths of a hotel in Silver Spring, MD.  I walked into a room defined by a U shaped conference table and row upon row of empty chairs.  This was the meeting of NCVHS or NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS QUALITY SUBCOMMITTEE HEARING on Measures that Matter to Consumers.

Matt Quinn, on behalf of Drs. Blackford Middleton and Paul Tang co-chairs of the Quality Subcommittee, asked me to testify from the patient view at 2:45pm.  I arrived at 9:00 am and began to paint.  Those assembled were pleasantly surprised that I would be painting the meeting.

This is my painting “Measure for Measure.”

This painting is bisected in two directions.  The floor is a spiraling turbulent flow of ideas while the blue wall in the distance is an upright expanse of bar charts and tombstones.  It is divided again by the two opposite sides of the conference table.  One side consisting of experts clothed with authority; on the other side patients sit half naked in their gowns. 

Several thought leaders in the world of healthcare and industry provided the expert testimony: Joyce Dubow from AARP, Christine Bechtel from National Partnership for Women and Families, Lynn Quincy from Consumer Union, James Sutton from Rochester Community Health and Jake Flaitz from Paycheck.

Christine Bechtel was amazing. 

She presented from the patient view.  She told a narrative account of the hours she spent trying to get a simple answer from her current doctor.  She chose this provider based on his decision to use an EHR system when few providers were doing so.  Sadly, rather than realizing the ability to use this technology for expanded consumer access it was being utilized as a glorified paper record.  Christine decided to try to find a new doctor online using available public data sets combined with her immense knowledge and skill from her work in the world of HIT.  She spent over 8 hours on it and was still not successful.

Joyce Dubow told us that the average patient has not the background nor resources of Christine and asked us to imagine their challenges.  She spoke of the importance of providing patients “just in time” information in order reduce the stress of the cognitive load.  I wonder how much the process of medical education would change if we encouraged "just in time" information access among providers as well.

Next up was Lynn Quincy.  She works in the division of Consumer Reports focused on healthcare.   She stated that shopping for health insurance was a gateway for patients to understand quality.  She also mentioned a surprising finding on their internal surveys.  When asked whose advice would the consumer seek before making a choice on a policy, many respondents said they would ask their mother.

James Sutton and Jake Flaitz presented together so I combined them into one man in the painting.  They had some very interesting things to say about public private partnerships and the ability of such partnerships to improve overall health of the citizens of Rochester, NY.

Soon we broke for lunch, and I put aside my brushes to enjoy a meal with Jim Hansen from Dossia.  Jim is a great voice in HIT and we spent much of lunch talking about the sad state of autopsies in the US. 

When the hearing resumed, we heard from Heather Smith from American Physical Therapy Association, Dr. John Hough of the National Center for Health Statistics and Matt Stiefel from Kaiser Permanente.  Heather told us quite a bit about functional mobility measures. She is the young blond woman in the painting.  Dr. John Hough addressed us with perfect elocution as he described in depth the International Classification of Functioning, Disability and Health (ICF). He stated, “The overall aim of the ICF classification is to provide a unified and standard language and framework for the description of health and health-related states".  John showed a man with a hook hand trying to draw with chalk upon a blackboard.  He explained how IFC could depict this ability in a code while I depicted it in paint.

During this panel one member stated that our current search for measures reminded him of the time before people understood the concept of temperature.  We were still trying to figure temperature and should not be focused on which thermometer was best. 

We do not know what we are measuring.  

Then it was time for my panel.  The panel had several speakers including Dale Shaller from Shaller consulting, who works with AHRQ and Susan Madden and Rick Siegrst from Press Ganey.  Dale spoke first and explained his work with CAHPS since its inception.  I was so excited to sit beside him as several of my paintings focus on HCAHPS data.  He went on to explain a data trial they had complerted with a group of patients to determine which information patients wanted to use to choose a doctor.  Did they want structured data, patient comments or a combination of both?

Next I was speaking and this is my power point. 

Measure For Measure

View more presentations from Regina Holliday

I connected measures important to patients using quotes from Shakespeare.  I bombarded the group with a massive list of concerns gleaned by crowd sourcing my power point on SlideShare.  I accompanied the measures with powerful painted images supporting our concerns.  I may have been the only patient on the panel but I was trying to speak for the many who were not there.

Susan and Rick from Press Ganey spoke next.  They spoke about the large data sets they had amassed with their clients using CAHPS scores, natural language processing and sentiment analysis.  They pointed out that the analytic tools used in the retail and travel industry could be used in the world of medicine to help the patient experience. 

During Q and A most of the questions focused on Susan and Rick’s use of sentiment analysis.  The committee was also very intrigued that Dale’s explanation that when CAHPS data was combined with patient narrative comments, the narrative comments were considered of greater value than the CAHPS quantitative data. 

The panel looked perplexed, “Why would patients pick narrative over quantitative data?"

The committee then asked me a few questions. If I were to choose one Shakespearean character as a perfect patient whom would I pick?  I said, “The Shrew from The Taming of the Shrew because she questioned authority for most of the play.”

They commented on the powerful imagery in my slide deck and asked where it could be found.  I said most of my work was available on Slideshare and Flickr.  They also mentioned that perhaps art therapy could be a type of measure and we spoke about the powerful emotional release while painting and discussed how that could help patients.  I added that it could help providers as well, “I was at Avatar, a survey company, last year and we painted with a room full of providers.  They each painted their patient story and all was silent as they worked and the room was a holy space.  Many of the images were simple as they were created by untrained artists, but they were true and powerful.”

That was it. 

I had made 12 separate points in my speech covering patient created content, timely data access, disability, mental health, patient education, medical error, autopsy rates, health literacy, non-compliance, failure of the law to regulate, data aggregation and the demand that patients be included on panels.

The committee focused on Shakespeare and painting.

And that dear readers, is focusing on narrative over dry statistical content. 

This is the reason my sons ask me to tell them a bedtime story rather than a bedtime math problem.  The sooner we harness the power of the patient story and show we value "soft data," the sooner we will be able to grasp the value of quantitative data as well.