"A system based on greed will never be good enough. But a system based on solidarity has a chance."
"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 Hilarious, Casey 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.
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.
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!
“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.
The Patient Revolution received a wonderful shout out from Kasey Boehmer, a researcher and health coach at the Mayo Clinic, as part of a write up on self-care at Redbook.
“If a doctor tells you to do something that’s too much of a burden, you’re not going to do it,” Boehmer says. “Conversation is your most powerful tool to get treatment that fits your life.” The Patient Revolution can help you determine the things that are most important for your doctor to know and tackle barriers that keep you from bringing them up."
Click here to read more from this Redbook article about maintaining your own balance and self-care routine, and for tips on planning your next conversation with your clinician, check out our Plan Your Conversation cards.
In a series of brief and personal essays, Why We Revolt describes what is wrong with industrial healthcare, how it has corrupted its mission, and how it has stopped caring. We propose a revolution of compassion and solidarity, of unhurried conversations, and of careful and kind care.
Reading the words that Dr. Victor Montori has penned can change your views on healthcare and inspire you to take action to improve our collective experience. You can also download an audio version of Why We Revolt on Amazon.
In efforts to share this vision of the Patient Revolution live and in-person with clinicians, students, and the general public, Victor has been traveling to cities across the country, offering insight and conversation, in addition to readings from Why We Revolt. His schedule can be a little tricky to navigate but if you'd like to talk to Victor about visiting your organization or community, email him.
"This medication makes me feel terrible all the time but my doctor said I have to take it."
"They told me I had to switch medications based on my insurance coverage."
The healthcare system as a whole feels large and looming, like a mountain whose shadow we stand in at all times. Changing the system? That feels like an incredibly daunting call to action. Where do we start? What actions matter most?
As patients, oftentimes we're not asked what we want or need, but instead told. Once we start questioning the system, it becomes an exhausting cycle of power struggles between departments, insurers, receptionists, and pharmacies. Feeling equipped and empowered to change things can be a challenge, depending on what health circumstances we're navigating at any moment, and when you're dealing with a health condition, adding "system change" to your to do list can be daunting.
But it's time to move out from under the shadow of that giant healthcare mountain. We might not be able to move it, but we can start to tunnel through it, drawing awareness to it and using small changes to help pave the way towards careful and kind care.
What small changes could you make during your clinical encounters in effort to up the empathy and empowerment quotient? One suggestion we heard was for a patient to wear a button that says, "Please look me in the eye" or "Ask me about my emotional health." Another suggestion we heard from a patient was to have the clinician ask, "How are you doing, and what are your goals for this appointment?" at the beginning of the appointment.
Resources like our Plan Your Conversation cards and the Reflection Document can help patients self-identify what information is important for their clinician to know and can assist in guiding conversations to put patient goals and clinician goals on equal footing from the outset.
Championing empowerment to people who think healthcare is something that happens to them is hard, but not impossible. We know the script seems set, but it is more flexible than you think. Tell one detail about your life that you normally wouldn't and the power dynamic can shift and equalize, pushing closer to careful, kind, and empathetic care.
On January 26th, the Patient Revolution team partnered with @PatientChat to help facilitate a discussion about patient empowerment and helping improve patient and clinicians interactions. We centered our discussion around our Reflection Tool, which encourages discussions between clinicians and patients that help foster more empathy and interaction. Here are some highlights from the chat.
(To view the full chat transcript, you can find that here.)
Dr. Victor Montori joins podcast host and patient advocate Christopher Snider this week on the Just Talking podcast. They chat about Victor's experiences growing up in Peru, defining his medical career at Mayo Clinic’s Knowledge and Encounter Research Center, the importance and value of love in conversations with patients, the reasons for Why We Revolt: A patient revolution for careful and kind care, and the mission behind The Patient Revolution.
You can listen to the podcast by clicking the link below, or by visiting the Just Talking website.