Last month, the Patient Revolution team took to Twitter to host our first #WhyWeRevolt tweetchat. We want to get to know the folks who are sharing their stories and engaging in these conversations about moving healthcare to something that is careful and kind, and we kicked off our first chat by taking a look at Victor Montori's book, Why We Revolt.
Our questions were centered around the language of the book and the discussion online was exciting. We have picked a few of our favorite Tweets in case you missed the chat. Enjoy the read, and if you'd like to see all of the discussion, take a look at the #WhyWeRevolt hashtag on Twitter. Our next Tweetchat will be announced soon!
#WhyWeRevolt At first blush, maybe not (other than me saying things like "I love my cardiologist!" (which I do) but as the book says: 'Failure of love to prevail (in medicine) has consequences'. It's thus the absence of love in our healthcare relationships that dictates reality.— Carolyn Thomas (@HeartSisters) July 18, 2018
Q1 A1 #WhyWeRevolt The word love does not bubble up, except in how I support my loved 1s as they support me when I need care.— Tami Dew Rich (@bostonheartmom) July 18, 2018
For me some words that denote positive emotion-filled strength include
When the doctor who diagnosed me with type 2 stopped answering my ?’s ignored my concerns and family history, I was angry and felt neglected.— Mila Clarke Buckley (@thehangrywoman) July 18, 2018
When I went to a new doctor who said “I get it, I got you. We’re going to work on this together.” I finally felt hopeful. https://t.co/jZpRow7JV7
Q2. When has your healthcare felt careful and kind? When hasn’t it?— Carolyn Thomas (@HeartSisters) July 18, 2018
A2: Little things mean a lot: good: eye contact (remarkably absent sometimes - competing w. computer screen = not good).
Best: cardiac nurse's gentle hand on my shoulder post-op gurney ride to CCU #WhyWeRevolt
Yes ! It's this but so much more. There is this notion within adult centered care that kids growing up and surviving against all odds still made bad lifestyle choices and ended up with their defects/diseases 🙄 It's maddening !— Stephanie (@ZakkisMom) July 18, 2018
Zakki's Peds Doctors are Always careful AND kind! Adult Centered Doctors are NOT careful about admitting that they aren't trained to care for kids saved on the frontier of medicine, and are NOT kind to the peds patients surviving against all odds and their parents 🙁#CHD #ACHD— Stephanie (@ZakkisMom) July 18, 2018
Q2💔When it was careless, and not Pt-Centered, my son almost died - 3x that I know of.— Tami Dew Rich (@bostonheartmom) July 18, 2018
Which, if you know me, you know it haunts me.
They have no idea how their actions will affect his health, forever
I imagine it WOULD have felt Kind IF they’d acknowledged mistakes #WhyWeRevolt https://t.co/PozLS3wuwV
Q3 #WhyWeRevolt Yes:The biggest place I see greed is new players who step in to what they see as opportunities: They exploit, monetize; get in + get out. On Hospital PFACs we’re expected to play nicely with them, yet they ignore our chronic pain points abt hospital systems 1/ https://t.co/QcGRRPVReZ— Tami Dew Rich (@bostonheartmom) July 18, 2018
This hurts the clinician too. Big % has symptoms of burnout. Unable to notice their patients, care for and about them, they miss the meaning of it all. Industrial healthcare is cruel to patients + clinicians. What is the ICD-10 code for healthcare cruelty? #WhyWeRevolt— Victor Montori, MD (@vmontori) July 18, 2018
$$$ Your federal appeals court decided on a Utah case in which a cardiologist falsely claimed 861 cardiac procedures in 2010. Comparison: @ClevelandClinic cardiologists, performed just 37 the same year. How did hosp/colleagues sit by allow it? https://t.co/6EdLI84dnV #WhyWeRevolt— Carolyn Thomas (@HeartSisters) July 18, 2018
I hit ❤️because @Twitter doesn’t offer me a response of 😡or Grrr— Tami Dew Rich (@bostonheartmom) July 18, 2018
That doc’s response to your wife reminds me of when docs told me I should “Just Be The Mom”
I’d LOVE to, if only Jamie had a better case manager than Me
or if there were #NoSilos
No fragmented care #WhyWeRevolt
A4: I felt like a blur at a practice that I left (which led to me finding @DrDannySands). I felt like a blur at a PT practice that I left. #WhyWeRevolt NOTE: whenever a clinician treats me kindly I look them in the eye and THANK them. For making the choices to go into HC.— Dave deBronkart (@ePatientDave) July 18, 2018
If I’m not counting the question on the paperwork, I’ve never been asked questions on how I’m doing mentally. Maybe they think my positivity is confidence? It’s just optimism.— Juvenile Johnny (@T1DJohnny) July 18, 2018
As a mom of a T1kiddo....I’ll switch to another practice. I want my kid to EXPECT a moment of personal contact and human interaction as he grows with T1.— Heather D Nelson (@LegitHDNelson) July 18, 2018