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Wednesday, February 29, 2012

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.”
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.
The panel

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. 

Taking the temperature

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.

Measure for Measure

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 sub committee

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.
  
Look at her

7 comments:

  1. Regina Holliday -you do represent the patients! There are very few people I would honor with that title and endorsement. Bless you and your family for the efforts you have made on behalf of people you don't even know.

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  2. Regina,thanks for representing me there. I love your narratives and am grateful your voice was there- and in so many other places others haven't been. I am also very pleased to hear that Christine Bechtel spoke from a place of patient rather than patient group advocate. We all have powerful stories, if only we can remove our "professional hats" and really speak from a place of "patient."

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  3. Joleen, thank you that is high praise as I know your standards are very high. I was even able to mention you and Hugo at one point in a side conversation about implantable devices.

    Kait it is such an honor to represent you. And Christine was truly amazing she threw her set to the side and spoke from her center.

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  4. Regina,

    Ahhh...I didn't know the part about Matt Quinn, who has brought the patient perspective into so many environments through his curiosity and championship. The voice of the patient does have a lot of friends in the world of the horseshoe roundtable.

    Here's hoping that the narrative exploration turns into ongoing patient representation. Our job is always to bring the patient perspective forward,

    Ted

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  5. Brilliant. Can we measure tipping points as they are happening?

    "Be not afraid of greatness: some are born great, some achieve greatness, and some have greatness thrust upon them."

    thank you for speaking, for all of us.

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  6. Thank you Regina....I've been working on death certificate reform and have asked that the NCHS include patient reps on all their committees. Dr. Frieden responded to a letter that I wrote (with many national patient safety orgs. signed on) and he committed to looking into patient representation on future death certificate reform committees. Unless we have accurate DC's (via autopsies), our vital statistics are worthless. So much funding goes into leading causes of death, but in reality the leading causes of death don't even make the list (!).
    Keep up the great work. Art like music, is spoken the same in every language.

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  7. Amazing stuff. I heard about your work via Kathy Apostolidis from Greece! I am a cancer patient advocate whose issues include QoL, reduction of toxicities, intergrative cancer treatments, lifestyle modifications and much more.

    I salute you with all my heart for using your creative power to make changes.

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