Language Matters

Victor Montori's book, Why We Revolt, invites patients and clinicians alike to change not only the way we look at healthcare, but also how we talk about healthcare.  We asked, "Why is this shift in language important?"

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Language shapes the way we see, think, and act. Today, industrial healthcare and those seeking to shape it rely on industrial terms and therefore industrial thinking to respond to its problems and to improve. Problems of access, throughput and value don’t reveal the tragedy of people suffering without care that responds to their situation. Efforts to improve efficiency - value by its less glamorous name - drive the need to blur the differences between people  - patients and clinicians - to make them interchangeable, and what they do standardized. Making people a blur makes care generic, ineffective. And ineffective care cannot be efficient. Industrial efforts sound good particularly when the need to spend less is ever more acute.

And yet, profits soar and tax funded safety net programs languish because of austerity and ideology. The problem is greed. And caring must respond to challenges of waste not with efficiency to fuel greed but with elegance that makes solidarity viable. Language matters. We don’t want industrial healthcare. We need careful and kind care. I trust that the actions we will take, the decisions we will make, the debates we will have, and the social compacts we will forge will be dramatically different when lovingly wrapped in the language of care. 

Join us on July 17 on Twitter for our first digital book club about Why We Revolt.  Follow @PatientRev on Twitter for details, and if you need more information on how to participate in a tweetchat, check out this blog post.

July 17th - #WhyWeRevolt Tweetchat!

The Why We Revolt book club is here, and you have a chance to join - to lead! - the discussion real-time.  Our first digital discussion will take place on July 17th at 6 pm PT / 9 pm ET through Twitter.  Tune into the @patientrev Twitter account for questions on July 17th, and follow the discussion via the hashtag #whywerevolt.  

Need to grab a copy of Why We Revolt?  We're proud to say that it's been selected for the Gold Foundation's compassionate clinicians reading list.  Check out this link for details on how to get your copy.  

What's a Tweetchat?  It's a moderated discussion on Twitter, centered around a specific topic and hosted by a discussion leader.  Our Tweetchat will be about Why We Revolt, with a focus on the language we use to talk about healthcare and the power of careful and kind care.  We'll be joined by Why We Revolt author Victor Montori (@vmontori)!

This is our way to take action as individuals and to come together, sharing our stories and rebuilding healthcare in pursuit of a system that is careful and driven by kindness. Continue to watch this space for details on how you can host a book club discussion of your own in your community.!

And if you want to share your story, we're always listening.  

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Threads in Tapestries

This poem was submitted by Jonathan Richards, FRCGP, Visiting Professor of Primary Care, University of South Wales, written in response to reading Why We Revolt.  The Patient Revolution team is grateful to Jonathan for allowing us to share his beautiful words.  

Threads  in  tapestries  
by Jonathan Richards

for  Victor  Montori  

As  I  walked  in  to  the  Department  Store  yesterday  
I  caught  sight  of  a  retired  teacher,  known  for  twenty  years.  
Our  lives  imprinted  one  into  each  other,  life’s  lines  crossed.  
I  will  never  forget  the  boiled  egg  Hodgkin’s  gland  nestling  
in  the  hollow  above  the  collarbone  of  her  young  son.
It  was  the  oncologist  who  saved  his  life,  I  might
have  missed  it  had  I  not  been  paying  enough  attention.  

Within  the  hour  I  visited  another  retired
teacher,  known  for  thirty  years,  for  Home  Communion. 
Memories  came  as  I  drove  away:  her  only  son  
might  have  died  if  I  had  not  checked  his  blood,  in  case. 
I  had  always  feared  missing  Addison’s;  I  always
tested.  His  kidneys  were  failing;  they  were  caught  in  time.  
A  transplant  has  saved  him;  now  a  father  of  three.
 
Threads  from  the  tapestry  of  my  life  woven  into  
theirs:  mothers,  sons  and  following  generations.  
Yarn  from  their  lives  knotted  into  mine  as  we  passed  by,    
changing  directions,  finding  doors  open  and  new  roads.
A  working  life  of  meeting  people,  touching,  glancing,  
becoming  entangled  for  a  time.  Or  for  ever.
Discontinuous  wefts  compacted  into  patterns.
   
On  both  sides. 

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From Jonathan - I served the people of Merthyr Tydfil, one of the most deprived and unhealthy communities in England and Wales, as a Family Doctor from 1981-2015. I have always had an interest in what happens when people meet with a doctor or nurse. I was a Clinical Director, responsible for quality and service improvements in the National Health Service from 2010-2016.

I have been learning to write poetry and was a Masters in Writing student at the University of South Wales in 2015-2017.

I encountered 'Why We Revolt' and it both stretched my mind and imagination and sang tunes that resonated in my heart. I was especially struck by the metaphor of weaving for the clinician/person relationship. (I prefer not to use the word patient.)

It was in my mind as I arrived at the experiences in this poem and in my mind as the poem arrived a couple of hours later. After putting the words down, I was struck by how ideas from the Primo Levi poem 'To My Friends' had arrived. I have now reconsidered my life's work as a partnership with my friends.

I Screen, You Screen

When you're meeting with your patient, or your clinician, does the computer feel like a blessing or a curse?  With electronic medical records implemented in most practices, the omniscient and ever-present screen can get in the way of productive and meaningful conversation.  A challenge to both patients and clinicians is to retain the human connection during visits while also updating and maintaining the electronic health record.

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A recent publication from The Gold Foundation - Turning foe into friend: Leveraging the electronic health record to promote humanism - highlighted a study with strategies to help improve patient/clinician communication while promoting and engaging with technology.  Part of the approach included the HUMAN LEVEL (see table below), which includes suggestions like making the first few minutes of the appointment technology-free, nixing the screen when it comes to discussing sensitive information, and maintaining eye contact.

  From Breaking Away from the iPatient to Care for the Real Patient: Implementing a Patient-Centered EMR Use Curriculum,  downloadable here

From Breaking Away from the iPatient to Care for the Real Patient: Implementing a Patient-Centered EMR Use Curriculum, downloadable here

Patients, have you had clinicians that practice these sorts of strategies?  Do you feel like it was helpful?  Clinicians, do you try to follow these kinds of guidelines?  Does it work?  And as a team, would this kind of approach improve communication?

Stepping outside of the intimate interaction between patients and clinicians, what could clinics and hospitals do to achieve some of these HUMAN LEVEL goals?  Is there something that EHR companies could do to contribute?  

We'd love to hear your thoughts.  Email us at submissions@patientrevolution.org or connect through Facebook or Twitter.

A Revolution to Make Healthcare Actually Care

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"It's not a tech revolution, or a scientific revolution, he's going for a HUMAN revolution to make healthcare actually care, and also kind."

Host of Healthcare is HilariousCasey Quinlan, talks with Victor about how patients and clinicians alike are crucial to the movement, the opportunities and issues with working within the existing healthcare system, and neatly drops a Death Star reference into the mix.

Listen to the podcast below, and let us know what you think on Twitter, on Facebook, or by sending us an email.

Changing the Language of Healthcare

Last month, Patient Revolution co-founder and board chair Dr. Victor Montori gave the closing keynote at the Lown Institute's 2018 Conference.  His talk centered on the problems of industrialized healthcare and planted the seeds for a patient revolution.

Maria Louisa's story matters.  Your story matters.  Share your story with the Patient Revolution team today, and help move healthcare to something we're proud of, something careful and kind.

The View from 10,000 Feet

On her flight home from the Lown Conference last week, Mary Mack thought about Victor's essay questioning the mantra that healthcare should be more like air travel. It is a thing of beauty. Read the book and send us your musings.

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Dear Victor,

I recently heard you speak at the Lown Conference in DC and I bought your book, Why We Revolt.  I read it later that day. 

Your book is heartbreaking and beautiful and full of hope for the much needed change in the US health system. There were times, while reading your book, that I sobbed, for I have experienced both the cruelties and the transcendent kindnesses that you speak about. 

On my flight home, I was pondering your passenger/patient as a blur airline analogy;  in your book you write, "...my colleague brought up the pilot with an unexpected twist..."--  your colleague suggested that air travel would be a good template for, "quality improvement" and a, "new vision for healthcare!" Specifically, No need to know the pilot/doctor; no need to know the passenger/patient-- just streamlined efficiency. 

I had an aisle seat on the right, the very first row in coach, with the extra leg room;  just the divider was between first class and economy class. The curtain was open, so I had a perfect view and noticed all the elaborate attention given to the first class passengers. At times it seemed even over solicitous; one passenger said to the attendant respectfully, but with a bit of a sigh "don't worry, I'm absolutely fine." It was clear he just wanted to read and all the "intervention" was unnecessary (I realize there is no harm here, but still it fits). 

In the cramped spaces of coach, I noticed passengers trying to stow their luggage and move about in impossibly small spaces. Someone's bag got caught on another passenger's armrest. Someone dropped something. Someone was bigger than average. Someone in the way back of the plane found nowhere to stow their carry-on bag, and had to backtrack, jostling through the line - kind of panicked - hoping to find room, so they didn't have to check their bag. The airline attendant was displeased.  And someone was traveling with small children and was trying to work to correctly place a child's travel seat. The airline attendant cited the rules and regulations. The mom quickened her pace, trying to work with the seatbelt. A thin woman, yet her backside was blocking the aisle. 

The airline attendant became annoyed and judgmental, other passengers in line were becoming surly and grumbling, tired of the continued hold up. Cruel comments were made. 

It had become a negative and impossible environment inside that economy class section of the plane!  Passengers lacked compassion and understanding for one another, and the attendants blamed some passengers for the "unnecessary" hassles and delays. 

The passengers in coach are under cared for and the folks in first class are - from what I saw - overly cared for. 

Thank you for writing such a great book. I look forward to your next. 
All the best to you!
Mary Mack 

Visualizing Our Health History

“At the hospital, I kept getting asked the same question over and over again – our systems aren’t capturing information in a way that takes the burden off patients,” said Katie. “Our tech systems need to be considerate. The whole system and how it’s designed to help people work together; it needs to be considerate.”

Katie McCurdy is a user experience designer and researcher focusing on healthcare, drawing from her experiences as an autoimmune patient. “As a longtime patient and patient advocate, I have a deep understanding of the problems patients face, and through my personal experiences and past research and design projects, I have developed a strong sense of the obstacles providers are facing.”

Years ago, aiming to make sense of a set of strange autoimmune symptoms, Katie created a visual timeline of her experiences to help express herself during limited time with a new clinician. “You have such a loss of control and confusion and anxiety when things are happening with your body and no one can figure out why. That doctor visit, I realized that bringing my story in this very visual format helped me take control of the conversation; it helped me remember what I wanted to say and structure the conversation in a more coherent way. I used this [visual] format in a number of subsequent visits and it was a helpful way to tell my story and very helpful for the doctor as well."

She added, ”multiple doctors have told me ’that’s the coolest thing ever.’”

Since that time Katie has created Pictal, which is a set of worksheets that patients can use to create a health history timeline and show how symptoms look and feel on their body. "As a patient, I have extensively used timelines to efficiently talk about my own health history, and I have also used drawings on body shapes to show my symptoms. I decided to create worksheets that would help other patients could use to do the same." People can download the worksheets and use provided visuals, or create their own interpretations, to map the symptoms they are feeling.  

“It’s one thing for a doctor to hear someone tell them what’s wrong. Another thing to see exactly what they are feeling.”

"I have a vision of better collaboration and mutual understanding. Patients have so much information! And doctors want to know that information. The problem is that many patients don’t have the tools or time to tell their story efficiently and coherently.” Working within a system that often whittles patient/clinician interacts down to a single-digit number of minutes, the ability to streamline collaboration is more important than ever. Through this tool, patients of varying health literacy levels can share their experiences and symptoms, helping bring their clinicians up top speed quickly during a visit, ultimately leading to more productive discussions.

To learn more about Katie's work, you can visit her website, or follow her on Twitter @katiemccurdy. To download the Pictal worksheets, click here.  

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