Discover and read the best of Twitter Threads about #patientExperience

Most recents (16)

@MondayNightIBD @AaronBlocker_ 1/2 #IBDPoll1️⃣:
📊If you are/were a caregiver for an adolescent/young adult (AYA) with #IBD or are an AYA who transitioned from #PedsGI to adult GI for your #IBD care, how was that transition?

Pls share your #PatientExperience with #MondayNightIBD!!
@MondayNightIBD @AaronBlocker_ 2/2 #IBDPoll2️⃣ #MondayNightIBD

Adolescent & young adults (& caregivers) who transtioned from #PedsGI to adult GI for #IBD care:

🚧 What did you find most difficult in the transition?
#Crohns #UlcerativeColitis
@MondayNightIBD @AaronBlocker_ Just to share my personal story, I found my biggest barrier was navigating the different care coordination style amidst a major life transition that coincided with my #PedsGI to adult GI transition! 1/5
Read 11 tweets
📣#GITwitter
Join⚕️@DCharabaty @AmyLightnerMD #DrMarlaDubinsky+ Brandon Pomish 4 #Crohns #PerianalFistula

🗓️#CPF #MNIBDWebinar Sat 2/11
🎯MultiD Mgmt
🎯Stem Cell Therapy
🎯#PatientExperience

🆓#CME👉bit.ly/CPF-MNIBD-CME
🗳️#IBDPolls👇
🔸Supported by an edu grant @TakedaPharma ImageImage
2/#PreConvo #IBDPoll 1️⃣
#MNIBDWebinar #Crohns #PerianalFistula #CPF

🆓#CME🔗bit.ly/CPF-MNIBD-Pre2

🟢The addition of which of the following to an anti-TNF agent is associated with a higher rate of #Crohns #PerianalFistula CPF healing vs the anti-TNF agent alone?
Read 7 tweets
The annual @CareQualityComm #StateOfCare report’s out today, just in time to focus minds as decisions are made about future health and care funding. Here’s my thread, picking out some of the nuggets that have got me thinking. 🧵 1/10
cqc.org.uk/publication/st… Cover of CQC report: The state of health care and adult soci
2/10 Overall #StateOfCare message: gridlocked care, growing risks of harm and a need to tackle inequalities. Summarised here in the foreword. Stresses need for workforce investment at system level. Rightly says need to understand people’s experiences overall not in isolation. Text of first page of report foreword.Text of second page of report foreword.
3/10 Good to see this reminder in #StateOfCare that ICSs need to use insights from local people to drive and track improvement. Key role for #Healthwatch and #VCSFE organisations there, I’d say. Very relevant to the need for shared learning described in section on collaboration. The aim of ICSs is to deliver joined-up care that better meeAlthough services were under great pressure, we have raised
Read 11 tweets
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Tina from 🇺🇸 co-founder of Team @ibdesis. We are proud to lead #PatientExperience on @MondayNightIBD to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care & reduce disparities in our community around the 🌍 thru @southasianIBD. #MondayNightIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ Even though my dad suffered from #Crohns, when I presented with #IBS #constipation, #GERD, joint pains & eye issues as a child, no one made the connection or escalated it to a gastroenterologist. #MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ When my dad passed from #CRC, my family went into poverty & couldn't afford health insurance. Though I was symptomatic as a child, I didn't have a #colonoscopy until 22 when I got my 1st job. That's when I received my very delayed #IBD diagnosis. #MondayNightIBD #SouthAsianIBD
Read 11 tweets
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Sharan from 🇬🇧, co-founder Team @ibdesis. We are proud to lead #PatientExperience on @mondaynightibd to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care for our community around the 🌍. #MondayNightIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ My initial diagnosis came after months of going back & forth w my GP who was reluctant to refer to a specialist because they were certain that my symptoms couldn't be due to #IBD. In their own words, "#SouthAsians don't get IBD" #MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ This delay led to extreme weight loss and worsening of symptoms to the point where I was unable to get myself out of bed. I was admitted into hospital with my weight down to 28kgs, from 38kgs just months before.
#MondayNightIBD #SouthAsianIBD
Read 13 tweets
@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 📣 #IBD patients & caregivers:

#IBDPoll 1️⃣

📊Thinking abt your IBD needs, what's been the biggest hurdle to your care?
📝 In the replies, elaborate. What’s helped your care?

Please share your #PatientExperience w #MondayNightIBD 👇🏽

👨‍👩‍👧‍👦=Family
👩🏼‍🤝‍👩🏽=Friends
🥼=Specialist
@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita #MondayNightIBD #PatientExperience
#IBDPoll 2️⃣

🧐Thinking about your culture’s expectations

📊 Have you tried Complementary and Alternative (CAM) Therapies (ex: ayurveda, homeopathy)?

What drove you to try these therapies? Please share your experience.

SE=side effects
@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita Thank you @MondayNightIBD for shining a spotlight on 🌏 #SouthAsianIBD pt experience!

I'm Madhura from 🇮🇳, co-founder Team @ibdesis. We are proud to lead #PatientExperience on #MondayNightIBD!

We hope to improve care for our community around the 🌍 through @SouthAsianIBD.
Read 22 tweets
🧵One of the tools we use at FLC is 'The Thinking Environment'

"The most valuable thing we can offer each other is the framework in which to think for ourselves"
#NancyKline

The #10Components that help generate independent thinking

👇🏾1/10 a short intro on each #MedTwitter
1 ATTENTION

"The quality of your attention determines the quality of other people's thinking "
#NancyKline

#timetothink #thethinkingenvironment #coaching #MedTwitter #importantconversations
Read 11 tweets
Pls join us in welcoming @JohnEbbenMDPhD to #TumorBoardTuesday!! 🎊

Dr Ebben is an onc fellow from WI, interested in🧬med & immunotherapy. He’ll also debate🧀curds & the best🍦custard in WI! He’ll be assisting with case wrap up🎀

We’re excited to have him!! #TBTFellow 1/17 White male with short brown...
2/17 #TumorBoardTuesday Thursday Case🎀(08/24/21)

Bringing #ctDNA to bear to improve pts🙌🏽 @pashtoonkasi shows us how we can♻️ 🎯therapies to extend survival.

We go deep -🔬molecular biology➡️clinical trials➡️pt case.

👉🏽Don’t forget🆓#CME credit: bit.ly/3B9i6Wd
3/17 #TumorBoardTuesday Thursday Case🎀(08/24/21)

📚We captured as much of @pashtoonkasi's discussion as we could in this moment:
#ColorectalCancer #CRC #OncTwitter

twitter.com/i/events/14288…
Read 19 tweets
Welcome to #TumorBoardTuesday
Hello Everyone,

I’m Manju George, a stage 3b rectal cancer survivor
I was diagnosed in 2017 & I wasn’t yet 45 then

Are you excited to discuss #CtDNA testing?

Let's get started..
But first things 1st
Tell us about you
#PatientExperience #CRCSM
My tumor
-In the upper rectum near the recto-sigmoid
Clean CAP CT scan & MRI pelvis
CEA 1.0 at dx
LAR sx 1st
Stage 3b rectal, MSS, BRAF WT

No chemo-RT
4 cycles of CAPOX
Clean scans at the end of treatment🎉🎉

What about you?

#TumorBoardTuesday #CRCSM #CtDNA #LiquidBiopsies
Survivorship--Different parts, very nice diagram from @CancerSurvSM
Great patient worksheet resource here--smhs.gwu.edu/cancercontrolt…
#TumorBoardTuesday #PatientExperience #CtDNA
Read 10 tweets
#TumorBoardTuesday

THANK YOU to @KristenCiombor for leading us through a🗣️on pMMR CRC w/ dMMR liver mets

AND thank you for @fireflyann for leading our #PatientExperience 🗣️as well

👉Don’t forget your🆓#CME credit-answer 3 quick❓
Here's the postest🔗
surveymonkey.com/r/DMN786G
#TumorBoardTuesday
Thursday Case🎀(Reverse jet-lag edition✈️)
(07/06 and 07/07/21)

We🗣️ #ColorectalCancer and:
✅1st line Tx for dMMR met CRC
✅✔️ing MMR status EVEN in patients with Lynch Syndrome
✅Tumor heterogeneity

We captured the🗣️in this moment:
twitter.com/i/events/14131…
#TumorBoardTuesday
Thursday Case🎀
(From 07/06 and 07/07/21)

In the #PatientExperience 🗣️we added:
✅Defining the "lingo", e.g.
👉dMMR = MSI-high
👉pMMR = MS-stable
✅Ensuring tumor testing - and🗣️results w/ docs
✅Scanxiety

Also captured in this moment:
twitter.com/i/events/14132…
Read 18 tweets
Gather around with a snack and ☕️!! We’ll begin with @fireflyann in ≈ 30mins!!

Please share and invite other members of the cancer community!

#TumorBoardTuesday #PatientExperience #ColorectalCancer @MPishvaian @KristenCiombor @Empoweringpts9
A couple of reminders.
If you need medical advice, or questions about your treatment or your personal care, please speak with your in-person care team.

#TumorBoardTuesday #PatientExperience #ColorectalCancer #CRC 1/3 @fireflyann reminders.  If you need medical advice, or questions about y
Reminder:
Everyone responds to treatment different, please be mindful of other’s experiences.

#TumorBoardTuesday #PatientExperience #ColorectalCancer @fireflyann 2/3 Reminder:  Everyone responds to treatment different, please
Read 6 tweets
#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
Read 21 tweets
Over the next month I'll be sharing thoughts from the 32 articles in our new special issue of @PXJournal: Sustaining a Focus on #HumanExperience in the Face of #COVID19.

Generous contributions of action & hope from authors around the world. Stay tuned:
pxjournal.org/journal/ Image
Starting my review of @PXJournal special issue with our editorial "A Commitment to Hope" co-authored by our Assoc Editor Geoffrey Silvera of @AuburnU.

"In this moment, the humanity of healthcare continues to shine."

Read more:
pxjournal.org/journal/vol7/i…

#HumanExperience #COVID19 Image
Next in @PXJournal: #Leadership matters: A conversation w/ Dr. @JamesEKHildreth

Need to start having honest conversations. They're difficult to have about who we are, what motivates us, but the results could be really powerful.
pxjournal.org/journal/vol7/i…

#COVID19 #humanexperience Image
Read 35 tweets
Inspiring story shared by @SafiBahcall on #PatientExperience

Brian Druker was denied tenure because his work was felt to lack 'potential'. Drug he discovered: Gleevec (imatinib).

Life expectancy of pts with chronic myeloid leukemia today: normal.

#JPMHC20 #JPM20 Image
A few years ago Safi attended a research meeting sponsored by a patient foundation group. One of the first people he met after I in hotel lobby started asking him detailed questions about the science behind the cancer drug they were working on at the time
(he was running a biotech co). After they were done speaking, he asked the other person "What university are you from?"

"I'm not with any university," he said. "I'm a patient. I was diagnosed seven years ago and given 6 months to live.
Read 4 tweets
#? Thinking about #surpriseMedicalBills ...
- Does any U.S. agency have authority over this?
- How/why is this business practice different in medicine than other industries?
- Is there a national registry of hospitals who do and don't do it?

1/
One thing's certain: EVERYONE talking about importance of #patientExperience damn well better have an ironclad policy against #surpriseMedicalBills and against suing patients.

Patient experience doesn't end at discharge. /end
Read 5 tweets

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