#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients
ISurvivor Lisa Deck @lbdeck
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://…
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://…
HealthSparq @HealthSparq
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
ISurvivor Lisa Deck @lbdeck
RT @patientchat: New to tweet chats? Follow the hashtag #patientchat and include it in every tweet during the next hour. You can engage w/…
Kevin Freiert @K_SalemOaks
Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfizer I am committed to helping patients+ shape the future of medicine. #patientchat
Patient Chat @patientchat
Excited to have guest @HealthSparq here, who is dedicated to empowering people to make smarter health care choices, co-hosting today’s #patientchat
Patient Chat @patientchat
Joining along is Lisa @lbdeck and Emily @mcintose, the winners of patient scholarships to attend The Patient Experience Symposium #patientchat
HealthSparq @HealthSparq
Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0
Emily McIntosh @mcintose
Here we go! Join in the chat - and be sure to use the hashtag (#patientchat) so we can see your responses!
ISurvivor Lisa Deck @lbdeck
Hi! I’m Lisa from Massachusetts. I’m a four time stroke survivor that was eventually diagnosed with #moyamoya disease. Two #brainsurgeries restored my blood flow. For two decades, I’ve advocated and spoke up for #stroke, #heartdisease and #raredisease
HealthSparq @HealthSparq
@K_SalemOaks @SalemOaks @pfizer Hi Kevin! Glad you could join us! Will you be at @patientexpsym in a couple weeks?! #WTFix #patientchat
Amanda @LAlupusLady
RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to dis…
Emily McIntosh @mcintose
.@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited to be going to the Patient Experience Symposium soon thanks to @HealthSparq #WTFix #patientchat
Patient Chat @patientchat
You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat
Lisa Davis Budzinski @lisadbudzinski
@patientchat @lbdeck @mcintose Yay!! That’s very exciting!! 👏👏👏 #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Alan Brewington @abrewi3010
Alan here from Boise Idaho. I’m a month out from neck surgery, has #rheumatoidartritis #chronicpain #PTSD and I’m ready for lunch! #patientchat
ISurvivor Lisa Deck @lbdeck
RT @lisadbudzinski: @patientchat @lbdeck @mcintose Yay!! That’s very exciting!! 👏👏👏 #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Carly Flumer @carlyflumer
My name is Carly and I’m a recent thyroid cancer survivor looking to start a career path in patient advocacy! #patientchat
HealthSparq @HealthSparq
We’re @HealthSparq & through #WTFix are committed to ensuring patients are at the center of #healthcare conversations & work to highlight patient stories & efforts for change, no matter how small. #PatientChat
Enlightening Results @GraceCordovano
@patientchat @lbdeck @mcintose Congrats! That's wonderful news! #PatientChat
Kevin Freiert @K_SalemOaks
@patientchat @power4patients Hi Kara. #patientchat Thanks for hosting.
Global Genes @GlobalGenes
RT @K_SalemOaks: @WestchesterBio #PatExpSym #patients2019 @GlobalGenes @wegohealth @CureFA_org @robertweker Come have a great chat with u…
Amanda @LAlupusLady
Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
David C. Norris, MD @davidcnorrismd
Hello, #patientchat! David here, precision-medicine methodologist w/ special interest in early-phase cancer trial methodology & ethics.
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Lisa here from Florida & @Cpnervecenter with my fantabulous colleague @bbhomebody#patientchat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
HealthSparq @HealthSparq
RT @mcintose: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited…
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Michele Rhee @michelerhee
@patientchat Hi, Michele from Boston. Diagnosed with thyroid cancer at 20 & a #RareDisease at 21. #PatientAdvocate professionally & personally. So excited for this topic! #PatientChat
Patient Empowerment @power4patients
RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to dis…
HealthSparq @HealthSparq
@LAlupusLady Hi Amanda! So great to see you! #patientchat #WTFix
Amanda @LAlupusLady
RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical need…
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat
Enlightening Results @GraceCordovano
Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #patientchat
Lydia L. Seiders @lseiders3
RT @lbdeck: Hi! I’m Lisa from Massachusetts. I’m a four time stroke survivor that was eventually diagnosed with #moyamoya disease. Two #bra
ISurvivor Lisa Deck @lbdeck
#patientchat Hi! I’m Lisa from Massachusetts. I’m a 4x stroke survivor that was eventually diagnosed with #moyamoya disease. 2 #brainsurgeries restored my blood flow. For 2decades, I’ve advocated and spoke up for #stroke, #heartdisease & #raredisease @HealthSparq @patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Inspire @teaminspire
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://…
HealthSparq @HealthSparq
@GraceCordovano @patientchat @lbdeck @mcintose YAY! Hi Grace! Congrats on your award ❤️ #WTFix #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical need…
HealthSparq @HealthSparq
@abrewi3010 Hi Alan! Great to see you! #patientchat #WTFix
Lydia L. Seiders @lseiders3
RT @patientchat: Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Lydia L. Seiders @lseiders3
RT @patientchat: You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat
Enlightening Results @GraceCordovano
@lisadbudzinski @Cpnervecenter @bbhomebody Great to see you ladies! #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@carlyflumer Hi fellow thyroid cancer survivor ✨ #PatientChat
Lydia L. Seiders @lseiders3
RT @patientchat: Joining along is Lisa @lbdeck and Emily @mcintose, the winners of patient scholarships to attend The Patient Experience Sy…
HealthSparq @HealthSparq
@lisadbudzinski @patientchat @lbdeck @mcintose Hi Lisa!!! So glad you're here!!!! #WTFix #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: Excited to have guest @HealthSparq here, who is dedicated to empowering people to make smarter health care choices, co-hos…
Inspire @teaminspire
Hello to #patientchat, John Novack from Inspire checking in.
Lydia L. Seiders @lseiders3
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
HealthSparq @HealthSparq
RT @lbdeck: #patientchat Hi! I’m Lisa from Massachusetts. I’m a 4x stroke survivor that was eventually diagnosed with #moyamoya disease. 2…
Enlightening Results @GraceCordovano
@davidcnorrismd Hi David! Nice to see you #PatientChat
HealthSparq @HealthSparq
@michelerhee @patientchat Hi Michele! Great to see you and thank you for joining! #patientchat #WTFix
Enlightening Results @GraceCordovano
@LAlupusLady Hi Amanda! #PatientChat
Patient Empowerment @power4patients
@carlyflumer Hey, Carly! So happy you joined us today! #patientchat
Alan Brewington @abrewi3010
@HealthSparq Good to see you too! #patientchat
Patient Chat @patientchat
RT @lbdeck: #patientchat Hi! I’m Lisa from Massachusetts. I’m a 4x stroke survivor that was eventually diagnosed with #moyamoya disease. 2…
Josefine Björkqvist @josefinebjork
Hi everyone, Josefine Björkqvist here from @aberdeenuni, Scotland. The focus of my research is patient involvement in the design of care. Also a carer. Looking forward to my first #patientchat
Becky Brandt RN @bbhomebody
Hi I'm Becky RN, #RareDisease patient, advocate and cofounder of @Cpnervecenter along with my amazing partner @lisadbudzinski I'm in Washington-the state😀 #patientchat
Amanda @LAlupusLady
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Lydia L. Seiders @lseiders3
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Patient Chat @patientchat
RT @mcintose: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited…
HealthSparq @HealthSparq
@teaminspire Hi John! #patientchat
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Stephanie Fischer @RarePOV
Glad to join #patientchat as a #raredisease patient & #stroke survivor - and to support my friend & fellow rare advocate @lbdeck
Lydia L. Seiders @lseiders3
RT @lbdeck: #patientchat Hi! I’m Lisa from Massachusetts. I’m a 4x stroke survivor that was eventually diagnosed with #moyamoya disease. 2…
Barby Ingle 📣 @BarbyIngle
Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best selling author, cheerleader of hope, and dancer for life, coming to the chat from AZ today!
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @Cpnervecenter @bbhomebody You as well stranger! 😉 #PatientChat
ISurvivor Lisa Deck @lbdeck
RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best se…
Enlightening Results @GraceCordovano
@carlyflumer Hi Carly! That's wonderful! Best wishes to you #PatientChat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq @patientchat @lbdeck @mcintose Hi Anna!!! It’s still Anna right?! 😄 #patientchat
Enlightening Results @GraceCordovano
@BarbyIngle @patientchat @lbdeck @HealthSparq @mcintose Hi Barby! Great to see you #PatientChat
Patient Chat @patientchat
T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to attend? Was there support? #patientchat https://t.co/hbZ2hkow0Q
Alan Brewington @abrewi3010
@teaminspire Hi! #PatientChat
Becky Brandt RN @bbhomebody
@lisadbudzinski @Cpnervecenter Hey pard, good morning😀 #patientchat
Lisa Davis Budzinski @lisadbudzinski
@bbhomebody @Cpnervecenter Hey Pard!!! #patientchat
Enlightening Results @GraceCordovano
@josefinebjork @aberdeenuni How wonderful that you could join us! Welcome! #PatientChat
Patient Empowerment @power4patients
RT @patientchat: T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to at…
Lisa Davis Budzinski @lisadbudzinski
@teaminspire Hi John!! #PatientChat
Marni Cartelli @Purrfectly_Rare
#patientchat Hi Marni from NY I’m an advocate and pt with #CRPS. Happy to be here
Enlightening Results @GraceCordovano
@michelerhee @patientchat So nice to see you Michele! Happy Friday! #PatientChat
HealthSparq @HealthSparq
We’re excited to be a sponsor of the upcoming @patientexpsym to help two patients, @lbdeck & @mcintose, attend! #WTFix #PatientChat
Emily McIntosh @mcintose
RT @patientchat: T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to at…
HealthSparq @HealthSparq
RT @patientchat: T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to at…
Becky Brandt RN @bbhomebody
@GraceCordovano Congrats again Grace! I'm So happy for you!!! 👍😁 #patientchat
Lydia L. Seiders @lseiders3
I'm Lydia. #MD State Ambassador (volunteer) for @RareAction with @RareDiseases; #advisor for @RareDiseaseGh & @dazzle4rare But here today on my own to help #RT. #patientchat
Jamie Roger @JamieRoger8
Hi #patientchat Jamie from CT and @SalemOaks Was caught up in the middle of working and lost track of time!
Emily McIntosh @mcintose
T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learned about the current and future healthcare trajectory in Ontario. I was fortunate that CTO covered registration and travel expenses. #patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat Hi, Michele from Boston. Diagnosed with thyroid cancer at 20 & a #RareDisease at 21. #PatientAdvocate profess…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @michelerhee @patientchat Hi Michele! Great to see you and thank you for joining! #patientchat #WTFix
Lydia L. Seiders @lseiders3
RT @RarePOV: Glad to join #patientchat as a #raredisease patient & #stroke survivor - and to support my friend & fellow rare advocate @lbde
Lydia L. Seiders @lseiders3
RT @teaminspire: Hello to #patientchat, John Novack from Inspire checking in.
Carly Flumer @carlyflumer
@patientchat T1: I have never attended a conference, but I would LOVE to! I have written stories about my patient journey that have been published, but would love to attend a @ThyCaInc conference! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@RarePOV @lbdeck Hi Stephanie! ✨ #patientchat
David C. Norris, MD @davidcnorrismd
RT @mcintose: T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learne…
HealthSparq @HealthSparq
#WTFix is all about finding stories that #healthcare needs to hear — and highlighting them for the world to see. To learn more about us, or to learn how to share your story, visit: https://t.co/zWURc7nYWP #PatientChat https://t.co/VYPzV9OW36
Becky Brandt RN @bbhomebody
@Purrfectly_Rare Howdy Marni🖐😁 Happy Friday! #patientchat
Lydia L. Seiders @lseiders3
@teaminspire Hi John! #patientchat
Amanda @LAlupusLady
A1. YES! As a patient leader/advocate, it is important for the community serving and designing the future health technology engage and meet patients to find out our needs. #patientchat
Candace @RareCandace
I'll be trying to keep up with chat while at work, hi everyone! #patientchat
Alan Brewington @abrewi3010
A1 My first conference as a patient advocate was #Medx. Patients were the real center of the conference, not just ceremonial center. #patientchat
HealthSparq @HealthSparq
@BarbyIngle @patientchat @lbdeck @mcintose Barby! So glad you could join us - so great to see you! #PatientChat #WTFix
Salem Oaks @SalemOaks
RT @K_SalemOaks: Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfiz
Michele Rhee @michelerhee
@patientchat T1: I’ve attended industry meetings as an industry representative...& then spoken from my patient perspective bc there weren’t patients (or enough patients) represented. #PatientChat
Lydia L. Seiders @lseiders3
@michelerhee @patientchat Hi Michele! #patientchat
HealthSparq @HealthSparq
@lisadbudzinski @patientchat @lbdeck @mcintose It sure is!!! It's been too long! #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to at…
Lydia L. Seiders @lseiders3
RT @patientchat: Time to start our topics. Here comes T1: #patientchat
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq @patientchat @lbdeck @mcintose Wayyyyy too long! 😘 #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
Lydia L. Seiders @lseiders3
RT @mcintose: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited…
HealthSparq @HealthSparq
RT @LAlupusLady: A1. YES! As a patient leader/advocate, it is important for the community serving and designing the future health technolo…
David C. Norris, MD @davidcnorrismd
RT @abrewi3010: A1 My first conference as a patient advocate was #Medx. Patients were the real center of the conference, not just ceremonia…
Lydia L. Seiders @lseiders3
@mcintose @patientchat @HealthSparq Hi Emily! #patientchat
HealthSparq @HealthSparq
@bbhomebody @Purrfectly_Rare Hi Becky!!! Thank you for joining, great to see you! #patientchat
David C. Norris, MD @davidcnorrismd
RT @michelerhee: @patientchat T1: I’ve attended industry meetings as an industry representative...& then spoken from my patient perspective…
Amanda @LAlupusLady
A1 My first @HIMSS there were only 3 exhibitors who were excited to have a patient perspective. So many vendors, do not want patients at conferences. #PatientChat
HealthSparq @HealthSparq
RT @carlyflumer: @patientchat T1: I have never attended a conference, but I would LOVE to! I have written stories about my patient journey…
Lisa Davis Budzinski @lisadbudzinski
@lbdeck @RarePOV #patientchat https://t.co/tBnZpozkZc
Patient Empowerment @power4patients
A1: We've attended @ASCO and @ASH_hematology for many years and both of those conferences have come a loooooooooooong way in meaningfully involving patients and care partners #patientchat
Barby Ingle 📣 @BarbyIngle
T1: Yes, I have attended over 100 industry events since 2007 to rep the patient voice... mostly welcomed (a few providers have stigma when it comes to PT voice), but I keep going because I have the nerve to be heard ;) and mostly am loved and respected as a PT voice #patientchat
HealthSparq @HealthSparq
RT @mcintose: T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learne…
David C. Norris, MD @davidcnorrismd
RT @LAlupusLady: A1 My first @HIMSS there were only 3 exhibitors who were excited to have a patient perspective. So many vendors, do not w…
ISurvivor Lisa Deck @lbdeck
A1: I’ve been a patient for 20 years and an active advocate but I haven’t had the chance to represent the #patientvoice at an industry conference yet. #patientchat
Patient Empowerment @power4patients
RT @LAlupusLady: A1. YES! As a patient leader/advocate, it is important for the community serving and designing the future health technolo…
HealthSparq @HealthSparq
@Purrfectly_Rare Hi Marni! #patientchat
Lydia L. Seiders @lseiders3
@BarbyIngle @patientchat @lbdeck @HealthSparq @mcintose Hi @BarbyIngle! #patientchat
Enlightening Results @GraceCordovano
T1) I have been invited to speak at industry events. Some are more welcoming than others. Most cover event registration. Some cover some travel & hotel expenses. There are so many factors to consider when attending. #PatientChat
Emily McIntosh @mcintose
@carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some have patient scholarships! I'd encourage you to apply - I'm very lucky to have just received one of these from @HealthSparq. #patientchat
Stephanie Fischer @RarePOV
T1 I've attended events hosted by @IAmBiotech & @massbio, both of which welcome participation by patient advocacy organizations & recognize the critical importance of including patients/caregivers in the discussions. #patientchat
ISurvivor Lisa Deck @lbdeck
That’s great news! #patientchat
Amanda @LAlupusLady
A1 Things have changed @PCHAlliance strives to include patients in their #Connect2Health conference. #HealtheVoices is all about empowering patients. #PatientChat
David C. Norris, MD @davidcnorrismd
@LAlupusLady @HIMSS That’s very interesting, Amanda. Would you elaborate? #patientchat
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @HealthSparq @patientchat @lbdeck @mcintose Wayyyyy too long! 😘 #patientchat
Lydia L. Seiders @lseiders3
RT @LAlupusLady: A1. YES! As a patient leader/advocate, it is important for the community serving and designing the future health technolo…
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T1: I’ve attended industry meetings as an industry representative...& then spoken from my patient perspective…
Enlightening Results @GraceCordovano
@power4patients @ASCO @ASH_hematology Agreed! Seeing more along the lines of advocacy. More work to do though #PatientChat
Lydia L. Seiders @lseiders3
RT @carlyflumer: @patientchat T1: I have never attended a conference, but I would LOVE to! I have written stories about my patient journey…
Lydia L. Seiders @lseiders3
RT @mcintose: @carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some hav…
Amanda @LAlupusLady
RT @HealthSparq: #WTFix is all about finding stories that #healthcare needs to hear — and highlighting them for the world to see. To learn…
Kevin Freiert @K_SalemOaks
T1: I haven't. Always thought I was too pharma. But you know… I should. #patientchat #PatExpSym #WTFix #askpatients
ISurvivor Lisa Deck @lbdeck
I’m excited to be one of those patients thanks to @HealthSparq #patientchat
Carly Flumer @carlyflumer
@mcintose @patientchat @ThyCaInc @HealthSparq I did not! I’ll definitely look into it! Thank you! #patientchat
Alice Lee @alee7095
RT @BarbyIngle: T1: Yes, I have attended over 100 industry events since 2007 to rep the patient voice... mostly welcomed (a few providers h…
Lydia L. Seiders @lseiders3
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://…
Lydia L. Seiders @lseiders3
RT @patientchat: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #pat
ISurvivor Lisa Deck @lbdeck
RT @mcintose: @carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some hav…
Becky Brandt RN @bbhomebody
T1 Yes, #raredDC . I felt Very supported by @RareAdvocates as well as most of the politicians we spoke with on Capital Hill, But not every politician. Patients offer Alot of support to each other! #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: New to tweet chats? Follow the hashtag #patientchat and include it in every tweet during the next hour. You can engage w/…
David C. Norris, MD @davidcnorrismd
RT @BarbyIngle: T1: Yes, I have attended over 100 industry events since 2007 to rep the patient voice... mostly welcomed (a few providers h…
Inspire @teaminspire
RT @patientchat: T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to at…
Patient Empowerment @power4patients
@GraceCordovano @ASCO @ASH_hematology True #patientchat
Rachel Martens @RaeofSunshine79
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Emily McIntosh @mcintose
@LAlupusLady @HIMSS Hi Amanda. I'mso sorry that you've had that experience. I think and hope that things are beginning to change! Has this discouraged you or will you continue to attend conferences? #patientchat
Enlightening Results @GraceCordovano
@mcintose @clinicaltrialON SO great to hear you had an awesome experience! #PatientChat
HealthSparq @HealthSparq
@GraceCordovano So many factors! We still love this video you did for #WTFix last year, @GraceCordovano - sums it up perfectly: https://t.co/PjXjynF03q #patientchat
Candace @RareCandace
A1: I just returned from #efpPhilly. Not only did I feel welcomed, I was invited so I could provide the patient perspective during the conference. It was a fantastic experience. #patientchat
Stephanie Fischer @RarePOV
T1 My participation in for-profit conferences hasn't always been positive. I was told by an organizer not to ask questions during Q&A because pharma industry reps (who sponsor & pay to attend) wanted to ask their questions. My Qs could wait for the coffee breaks. #patientchat
Patient Empowerment @power4patients
@K_SalemOaks You definitely should #patientchat
Kevin Freiert @K_SalemOaks
@michelerhee @patientchat Yes - I want to hear more. ??There weren't enough patients??? #patientchat
Lydia L. Seiders @lseiders3
RT @carlyflumer: My name is Carly and I’m a recent thyroid cancer survivor looking to start a career path in patient advocacy! #patientchat
Enlightening Results @GraceCordovano
@HealthSparq @patientexpsym @lbdeck @mcintose This is so awesome! Thank you for doing that! Would love to hear if you have tips for other companies who may want to sponsor patients to attend events/conferences? #PatientChat
Lydia L. Seiders @lseiders3
@carlyflumer Hi Carly! #patientchat
Chuck Webster MD MS AI MS Industrial Engineering @wareFLO
@LAlupusLady I too love healthcare conferences! (such as #HITMC #HITMC19 ☺) Every other week, via shared #VirtualReality, we host #HealthSystemsChat in #SocialVR in conjunction w/a conference. Many patients & care givers attend & are well represented! 🏆 #patientchat https://t.co/X1Sw3IKCTW
Chuck Webster MD MS AI MS Industrial Engineering @wareFLO
RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learne…
Candace @RareCandace
A1: I attend a lot of conferences and events for pharma where I am asked to provide patient and healthcare attorney perspectives. It's important to have both of those things present to push collaboration forward. #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: Here we go! Join in the chat - and be sure to use the hashtag (#patientchat) so we can see your responses! https://t.co/AL8W…
Inspire @teaminspire
RT @RareCandace: A1: I just returned from #efpPhilly. Not only did I feel welcomed, I was invited so I could provide the patient perspectiv…
Becky Brandt RN @bbhomebody
@JamieRoger8 @SalemOaks Hi Jamie🖐😀 Happy Friday. #patientchat
ISurvivor Lisa Deck @lbdeck
That’s a great collaboration for #PatientsIncluded
Lydia L. Seiders @lseiders3
RT @carlyflumer: @mcintose @patientchat @ThyCaInc @HealthSparq I did not! I’ll definitely look into it! Thank you! #patientchat
Alan Brewington @abrewi3010
A1 at the time I felt incredibly supported by #medx. They even had a quiet room for patients that needed a break. #patientchat
Michele Rhee @michelerhee
@patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & represented individually. It’s unacceptable when the topic is patient-related, but there aren’t patients speaking. #PatientChat
David C. Norris, MD @davidcnorrismd
RT @RarePOV: T1 My participation in for-profit conferences hasn't always been positive. I was told by an organizer not to ask questions dur…
Patient Empowerment @power4patients
RT @RareCandace: A1: I just returned from #efpPhilly. Not only did I feel welcomed, I was invited so I could provide the patient perspectiv…
Enlightening Results @GraceCordovano
RT @HealthSparq: @GraceCordovano So many factors! We still love this video you did for #WTFix last year, @GraceCordovano - sums it up perfe…
Ken Taylor @KenRayTaylor
T1: Yes,Yes and Yes! I think the patient message is welcomed by most and many. We love to bring the message to the public #patientchat @iPainFoundation @iPainLivingMag
Jamie Roger @JamieRoger8
@bbhomebody @SalemOaks Happy Friday Becky! I hope you had a great week! #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up... https://t.co/LxR68rpQTI #patientchat
Kevin Freiert @K_SalemOaks
RT @michelerhee: @patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & repres…
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️🆘 @NatriceR
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Marni Cartelli @Purrfectly_Rare
T1. #patientchat I just attended what I would call my 1st true industry geared conference as a pt advocate & there is a def. difference I did feel welcome as attendee but didn’t feel included/represented in sessions. They talked about pt inclusion but it sounded like tag lines
Patient Chat @patientchat
T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re attending? Does #PatientsIncluded, patient scholarships, etc. cross your mind? #patientchat https://t.co/g4n1OX4Gn8
Lydia L. Seiders @lseiders3
RT @RarePOV: T1 My participation in for-profit conferences hasn't always been positive. I was told by an organizer not to ask questions dur…
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & repres…
Lydia L. Seiders @lseiders3
RT @Purrfectly_Rare: #patientchat Hi Marni from NY I’m an advocate and pt with #CRPS. Happy to be here https://t.co/QI0ZUX3Gkj
Tommy Geraci @teeco71
RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
HealthSparq @HealthSparq
@GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't have to be locked into a pre-set sponsorship if you want to do something different. @patientexpsym was so excited & open to ideas, so that definitely helped as well. #WTFix #PatientChat
Patient Empowerment @power4patients
@michelerhee @patientchat TRUTH! #patientchat
David C. Norris, MD @davidcnorrismd
RT @abrewi3010: A1 at the time I felt incredibly supported by #medx. They even had a quiet room for patients that needed a break. #patientc
HealthSparq @HealthSparq
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
Becky Brandt RN @bbhomebody
@RarePOV Wow-How insulting! That's terrible! #patientchat
Amanda @LAlupusLady
Nothing is going to stop me from sharing my patient journey/advocacy it is vital for patients to be present. From the exam room, to clinical trials and healthcare conferences. #patientchat *We need more than patient scholarships, patients who share deserve an honorarium.
Lydia L. Seiders @lseiders3
@Purrfectly_Rare Hi Marni! #patientchat
Lydia L. Seiders @lseiders3
RT @RarePOV: T1 I've attended events hosted by @IAmBiotech & @massbio, both of which welcome participation by patient advocacy organization…
Lydia L. Seiders @lseiders3
RT @lbdeck: That’s a great collaboration for #PatientsIncluded https://t.co/KugbS2OMKa
ISurvivor Lisa Deck @lbdeck
A2: I’m always on the look out for #patientscholarships which allow me to participate. I highly value companies that offer this as an option. #patientchat @patientchat
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
Yes! I was a keynote at @GlobalGenes RARE Patient Advocacy Summit last fall and it was an AWESOME experience. Not only was I one of several patients in attendance, it was 100% live-streamed for folks who couldn’t attend - whether for health/financial reasons #patientchat
Lydia L. Seiders @lseiders3
RT @RareCandace: A1: I just returned from #efpPhilly. Not only did I feel welcomed, I was invited so I could provide the patient perspectiv…
Lydia L. Seiders @lseiders3
RT @bbhomebody: T1 Yes, #raredDC . I felt Very supported by @RareAdvocates as well as most of the politicians we spoke with on Capital Hill…
Lydia L. Seiders @lseiders3
RT @bbhomebody: Hi I'm Becky RN, #RareDisease patient, advocate and cofounder of @Cpnervecenter along with my amazing partner @lisadbudzins
HealthSparq @HealthSparq
RT @michelerhee: @patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & repres…
David C. Norris, MD @davidcnorrismd
RT @Purrfectly_Rare: T1. #patientchat I just attended what I would call my 1st true industry geared conference as a pt advocate & there is…
Lydia L. Seiders @lseiders3
@bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky! #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfiz
Michele Rhee @michelerhee
@RarePOV This made me so sad for multiple reasons. Part of the value of patient participation is...participation. The dialogue & perspective are necessary to ensure we all learn from each other. #PatientChat
Emily McIntosh @mcintose
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
ISurvivor Lisa Deck @lbdeck
That’s another amazing collaboration! #patientchat
Lydia L. Seiders @lseiders3
@K_SalemOaks @SalemOaks @pfizer Hi Kevin! #patientchat
Enlightening Results @GraceCordovano
@michelerhee @patientchat This happens at more than just industry events. I've lost count of how many times people are speaking to #PtExp & aren't a patient. We are not all patients, #PatientChat
Patient Empowerment @power4patients
@abrewi3010 I've always wanted to attend #medx. I'd love to hear more about your experience and maybe find a way to go at some point #patientchat
Rachel Martens @RaeofSunshine79
@patientchat T1: I have when I’ve had the benefit of receiving funding as a family advisor. It’s a wonderful learning experience that I wish were more accessible. The landscape is changing a bit with getting new info out there but that demands making patient access a priority. #patientchat
Becky Brandt RN @bbhomebody
@lisadbudzinski @lbdeck @Cpnervecenter Yahoo! I'm with you, Many more!!! #patientchat
Kevin Freiert @K_SalemOaks
There sure is a big difference. For example @GlobalGenes the feel of family is amazing. At others, feels just a bit too businessy. #patientchat
Patient Empowerment @power4patients
RT @lbdeck: A2: I’m always on the look out for #patientscholarships which allow me to participate. I highly value companies that offer this…
Mary MACK @MaryOCMack
T1: I’ve attended patient conferences that—truthfully—had the agenda of industry, but was veiled as a patient conference. #patientchat
ISurvivor Lisa Deck @lbdeck
You do an amazing job of being both the professional and patient perspective. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
Lydia L. Seiders @lseiders3
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
Kevin Freiert @K_SalemOaks
T2: Absolutely! Given that @SalemOaks see ourselves as "on the patients' side," it is critical to have patients involved. Not just attending, but LEADING discussions. #patientchat @GlobalGenes #PatExpSym #askpatients @WestchesterBio #pinksocks #WTFix
Lydia L. Seiders @lseiders3
RT @patientchat: Topic 2 (T2:) coming up... https://t.co/LxR68rpQTI #patientchat
Emily McIntosh @mcintose
@LAlupusLady Amazing! You sound like a very strong voice. Keep up the good fight! #patientchat
Patient Chat @patientchat
RT @michelerhee: @RarePOV This made me so sad for multiple reasons. Part of the value of patient participation is...participation. The dial…
Jamie Roger @JamieRoger8
Yes, this is definitely a factor in deciding what conferences we attend. @SalemOaks exists to empower patients to use their voice. #patientchat
Candace @RareCandace
A2: It depends on the conference. Drug development, marketing, and commercialization need the patient voice. For legal issues, it really needs to be attorneys only. #patientchat
Alan Brewington @abrewi3010
A2 all conferences & med school events must have actual patient participation. This means leadership to running social media. These events should be broadcasted for free! #patientchat
Inspire @teaminspire
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
HealthSparq @HealthSparq
T2. YES! Whenever we look at conferences, we look for who will be on stage & what support there for those impacted most by health care: patients, caregivers, and their families to attend. #WTFix #PatientChat
ISurvivor Lisa Deck @lbdeck
Glad you’re here to share this and work on solutions. #patientchat
Stephanie Fischer @RarePOV
@bbhomebody The organizer complained about patients who got scholarships not attending all sessions - seemingly without considering that perhaps they were conserving energy to do well on the panels on which they were speaking. I was so uncomfortable, I didn't return for day 2. #patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @RarePOV This made me so sad for multiple reasons. Part of the value of patient participation is...participation. The dial…
Lydia L. Seiders @lseiders3
RT @lbdeck: A2: I’m always on the look out for #patientscholarships which allow me to participate. I highly value companies that offer this…
Lydia L. Seiders @lseiders3
RT @lbdeck: You do an amazing job of being both the professional and patient perspective. #patientchat https://t.co/2X4NfcA13g
Lydia L. Seiders @lseiders3
RT @lbdeck: That’s another amazing collaboration! #patientchat https://t.co/6T4ZCXIj15
Michele Rhee @michelerhee
@K_SalemOaks @patientchat At some industry meetings, even when the topic is patient engagement, for example, only the industry side of that engagement might be represented as a speaker or audience member. #PatientChat
Lydia L. Seiders @lseiders3
RT @BarbyIngle: T1: Yes, I have attended over 100 industry events since 2007 to rep the patient voice... mostly welcomed (a few providers h…
Stephanie Fischer @RarePOV
RT @michelerhee: @RarePOV This made me so sad for multiple reasons. Part of the value of patient participation is...participation. The dial…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #p
Becky Brandt RN @bbhomebody
@lseiders3 @Cpnervecenter @lisadbudzinski Hi Lydia🖐😀 Happy almost weekend! #patientchat
Josefine Björkqvist @josefinebjork
Yes it’s important that conferences are #PatientsIncluded Good guidance on https://t.co/xKP80loVc7 Ideally conferences have reduced fees or bursaries available for patients. More patient-led sessions and conference tracks would also be welcome at medical conferences #patientchat
Lydia L. Seiders @lseiders3
RT @GraceCordovano: T1) I have been invited to speak at industry events. Some are more welcoming than others. Most cover event registration…
Lydia L. Seiders @lseiders3
RT @abrewi3010: A1 My first conference as a patient advocate was #Medx. Patients were the real center of the conference, not just ceremonia…
Amanda @LAlupusLady
A1 The most inclusive conference is https://t.co/VURfG0vZqc because @Colin_Hung and @techguy recognize the value of #PatientsIncluded and I was the Opening Keynote speaker last year. #patientchat
Lydia L. Seiders @lseiders3
RT @josefinebjork: Hi everyone, Josefine Björkqvist here from @aberdeenuni, Scotland. The focus of my research is patient involvement in th…
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose I’ve tried asking many organizers & was told they could not use their sponsor money for patients (?) #patientchat
Amanda @LAlupusLady
RT @mcintose: @LAlupusLady Amazing! You sound like a very strong voice. Keep up the good fight! #patientchat
Kevin Freiert @K_SalemOaks
T2: @SalemOaks strives successful enough to sponsor scholarships, travel, and participation for patients+. (Take a course and support the cause https://t.co/GAHYfd0UDh ) #patientchat #PatExpSym @GlobalGenes #askpatients @WestchesterBio @S4PM #WTFix
Jamie Roger @JamieRoger8
@G17Esiason @GlobalGenes The option to livestream events for people who are unable to attend definitely opens up the opportunity to expand the audience perspective and give more patients the ability to attend. #patientchat
David C. Norris, MD @davidcnorrismd
A2. This may not cross my mind as I select a *conference*, but it does inform my selection of *sessions* to attend. I generally would not miss a session highlighting a patient speaker. #patientchat
Lydia L. Seiders @lseiders3
RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
Enlightening Results @GraceCordovano
Are you organizing a conference? Have you considered sponsoring patients to attend? We don't need more swag at conferences. We do need more patients. #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @wareFLO: @LAlupusLady I too love healthcare conferences! (such as #HITMC #HITMC19 ☺) Every other week, via shared #VirtualReality, we h…
Lydia L. Seiders @lseiders3
@LAlupusLady Hi Amanda! #patientchat
Barby Ingle 📣 @BarbyIngle
T2. Wait, what... U can take the PT out of us? Everything I attend is as a chronic PT. U cant take that out of me... over the years more & more PT like me are attending & sharing, industry pros learn from us big-time, They dont get r knowledge n med school classroom! #patientchat
Emily McIntosh @mcintose
@G17Esiason @GlobalGenes I love this. Having a live-stream option or even posting video coverage after the fact is an excellent way of increasing accessibility and inclusion! #patientchat
Lydia L. Seiders @lseiders3
RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best se…
Michele Rhee @michelerhee
@GraceCordovano @patientchat Dude. The phrase “We are all patients” makes me want to squish things with my bare hands. #PatientChat
Lydia L. Seiders @lseiders3
RT @abrewi3010: Alan here from Boise Idaho. I’m a month out from neck surgery, has #rheumatoidartritis #chronicpain #PTSD and I’m ready for…
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
RT @josefinebjork: Yes it’s important that conferences are #PatientsIncluded Good guidance on https://t.co/xKP80loVc7 Ideally conferences h…
Patient Empowerment @power4patients
@MaryOCMack Yup. Been there, done that as well. Like @RarePOV said, when you're asked to hold your Qs until the coffee break, it's a dead giveaway re: the real agenda #patientchat
Lydia L. Seiders @lseiders3
@abrewi3010 Hi Alan! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@JamieRoger8 @SalemOaks Hi Jamie!!! #patientchat
Lydia L. Seiders @lseiders3
RT @Purrfectly_Rare: T1. #patientchat I just attended what I would call my 1st true industry geared conference as a pt advocate & there is…
Lydia L. Seiders @lseiders3
RT @HealthSparq: We’re excited to be a sponsor of the upcoming @patientexpsym to help two patients, @lbdeck & @mcintose, attend! #WTFix #Pa
David C. Norris, MD @davidcnorrismd
RT @RarePOV: @bbhomebody The organizer complained about patients who got scholarships not attending all sessions - seemingly without consid…
Alan Brewington @abrewi3010
@power4patients Please feel free to reach out to me whenever you want, I would be happy to talk. I was on their epatient advisory board too. #medx #PatientChat
Lydia L. Seiders @lseiders3
RT @HealthSparq: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't hav…
Rachel Martens @RaeofSunshine79
@RarePOV Wow this is truly unfortunate! So sorry to hear that. #patientchat
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose I’ve tried asking many organizers & was told they could n…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't hav…
Heather McCullen @H_SalemOaks
I’m always out getting lunch during #patientchat
Stephanie Fischer @RarePOV
RT @michelerhee: @GraceCordovano @patientchat Dude. The phrase “We are all patients” makes me want to squish things with my bare hands. #Pa
Michele Rhee @michelerhee
@lbdeck Thank you! I worry about that balance a lot. I constantly check in with myself & others to make sure that I’m representing my patient experience & my relevant patient communities, that I’m not jaded. #PatientChat
Rachel Martens @RaeofSunshine79
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: Are you organizing a conference? Have you considered sponsoring patients to attend? We don't need more swag at confer…
Jamie Roger @JamieRoger8
@lisadbudzinski @SalemOaks Hello Lisa. Are you doing any better this week? #patientchat
Ken Taylor @KenRayTaylor
T2: Absolutly, patients i know, need all help can get. Financially and medically. I am happy to see a conference is offering scholarships to patients that are looking for answers and empowerment. #iPainSummit2019 has patient scholarships available to apply for now. #patientchat
Lydia L. Seiders @lseiders3
RT @josefinebjork: Yes it’s important that conferences are #PatientsIncluded Good guidance on https://t.co/xKP80loVc7 Ideally conferences h…
Stephanie Fischer @RarePOV
RT @GraceCordovano: Are you organizing a conference? Have you considered sponsoring patients to attend? We don't need more swag at confer…
Lydia L. Seiders @lseiders3
RT @RareCandace: A2: It depends on the conference. Drug development, marketing, and commercialization need the patient voice. For legal iss…
Lydia L. Seiders @lseiders3
RT @davidcnorrismd: A2. This may not cross my mind as I select a *conference*, but it does inform my selection of *sessions* to attend. I g…
Lydia L. Seiders @lseiders3
RT @JamieRoger8: @G17Esiason @GlobalGenes The option to livestream events for people who are unable to attend definitely opens up the oppor…
Lydia L. Seiders @lseiders3
RT @LAlupusLady: A1 The most inclusive conference is https://t.co/VURfG0vZqc because @Colin_Hung and @techguy recognize the value of #Patie
HealthSparq @HealthSparq
Exactly! #WTFix #PatientChat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T2: @SalemOaks strives successful enough to sponsor scholarships, travel, and participation for patients+. (Take a course…
Enlightening Results @GraceCordovano
@G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follow along. Personally can't stand when conferences post signs: no taking pictures. #PatientChat
Lydia L. Seiders @lseiders3
RT @BarbyIngle: T2. Wait, what... U can take the PT out of us? Everything I attend is as a chronic PT. U cant take that out of me... over t…
David C. Norris, MD @davidcnorrismd
RT @lbdeck: A2: I’m always on the look out for #patientscholarships which allow me to participate. I highly value companies that offer this…
Lydia L. Seiders @lseiders3
RT @power4patients: @MaryOCMack Yup. Been there, done that as well. Like @RarePOV said, when you're asked to hold your Qs until the coffee…
Becky Brandt RN @bbhomebody
@davidcnorrismd Thats GREAT! Glad to hear that you're interested in the #patientperspective . 👍😀 Hopefully that attitude is trending! #patientchat
Patient Empowerment @power4patients
@abrewi3010 Thanks! Will do :) #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up... https://t.co/LxR68rpQTI #patientchat #patientchat
Kevin Freiert @K_SalemOaks
@lisadbudzinski @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose They may be constrained by their internal compliance rules. The organizers need to find a way to make such sponsorship to a pool. #patientchat
Amanda @LAlupusLady
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
David C. Norris, MD @davidcnorrismd
RT @bbhomebody: @davidcnorrismd Thats GREAT! Glad to hear that you're interested in the #patientperspective . 👍😀 Hopefully that attitude is…
Stephanie Fischer @RarePOV
RT @GraceCordovano: @G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follo…
Carly Flumer @carlyflumer
@GraceCordovano @G17Esiason @GlobalGenes I love that organizations and conferences offer live-streaming or have a video for people to watch after if they weren’t able to view the live-stream. #patientchat
Patient Chat @patientchat
T3: What is the value in lowering barriers to conference access/attendance to patients? What are conferences missing out on when they don’t include patients? #patientchat https://t.co/55DycK8BCE
Lisa Davis Budzinski @lisadbudzinski
@JamieRoger8 @SalemOaks Still on recovery mode. It’s hard to have #intractablepain, try to represent the #patientperspective and come home back into my #caregiver role for my hubby✨ How are you? How have you been? #PatientChat
Michele Rhee @michelerhee
@patientchat T2: Absolutely! For all patient-related meetings, I tend to only go if I’m asked to speak (bc I travel a lot for work, so I try not to travel!), & I will only speak if they accommodate patients. #PatientsIncluded #PatientChat
Patient Empowerment @power4patients
RT @GraceCordovano: @G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follo…
Stephanie Fischer @RarePOV
RT @power4patients: @MaryOCMack Yup. Been there, done that as well. Like @RarePOV said, when you're asked to hold your Qs until the coffee…
David C. Norris, MD @davidcnorrismd
RT @MaryOCMack: T1: I’ve attended patient conferences that—truthfully—had the agenda of industry, but was veiled as a patient conference.…
Patient Empowerment @power4patients
RT @KenRayTaylor: T2: Absolutly, patients i know, need all help can get. Financially and medically. I am happy to see a conference is offer…
Lydia L. Seiders @lseiders3
Pardon the interruption to my followers. Today's #patientchat #twitterchat. I believe in collaboration and will be supporting their efforts and encourage you to! Join us!
ISurvivor Lisa Deck @lbdeck
@power4patients @abrewi3010 Ditto! So glad to hear positive feedback on #medx #patientchat
Alan Brewington @abrewi3010
@lseiders3 Hi, how are you? #patientchat
Candace @RareCandace
A3: you're providing more value to the companies paying to attend your conference by providing access to patient advocates. Something they don't get to experience every day. #patientchat
Enlightening Results @GraceCordovano
@michelerhee @patientchat "We are all patients" causes instant 👇👇. It is a great statement as a segway to teachable moments #PatientChat https://t.co/kKz5izPslG
HealthSparq @HealthSparq
@mcintose @G17Esiason @GlobalGenes YES! Livestream is so important for including patients and caregivers that can't otherwise travel or take that much time away. Livestream encourages even more participation & discussion! #WTFix #PatientChat
Lydia L. Seiders @lseiders3
RT @patientchat: Topic 3 (T3:) coming up... https://t.co/LxR68rpQTI #patientchat #patientchat
Lydia L. Seiders @lseiders3
RT @bbhomebody: @davidcnorrismd Thats GREAT! Glad to hear that you're interested in the #patientperspective . 👍😀 Hopefully that attitude is…
David C. Norris, MD @davidcnorrismd
RT @K_SalemOaks: T2: Absolutely! Given that @SalemOaks see ourselves as "on the patients' side," it is critical to have patients involved.…
Emily McIntosh @mcintose
@JamieRoger8 @G17Esiason @GlobalGenes Yes! Lives stream - or post slides/video coverage after the fact for those that have other commitments or possible medical appointments during the conference. #Patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T2: Absolutely! For all patient-related meetings, I tend to only go if I’m asked to speak (bc I travel a lot…
Patient Empowerment @power4patients
RT @patientchat: T3: What is the value in lowering barriers to conference access/attendance to patients? What are conferences missing out o…
Lydia L. Seiders @lseiders3
RT @power4patients: @abrewi3010 Thanks! Will do :) #patientchat
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @JamieRoger8 @SalemOaks Still on recovery mode. It’s hard to have #intractablepain, try to represent the #patientperspe
Lydia L. Seiders @lseiders3
RT @JamieRoger8: @lisadbudzinski @SalemOaks Hello Lisa. Are you doing any better this week? #patientchat
Michele Rhee @michelerhee
@patientchat T2: I’m really thrilled to say that almost every single meeting has had accommodations in the form of patient scholarships, live streaming, disability access, etc., & the 1 meeting that didn’t is not implementing a plan! #PatientChat
ISurvivor Lisa Deck @lbdeck
RT @JamieRoger8: Looking forward to #patientchat later today. Hope to see some familiar faces... @abrewi3010 @Chris_Anselmo @Purrfectly_R
Lydia L. Seiders @lseiders3
RT @H_SalemOaks: I’m always out getting lunch during #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: @lisadbudzinski @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose They may be constrained by their internal co…
Amanda @LAlupusLady
A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient community representatives that shows up... #patientchat
Lydia L. Seiders @lseiders3
RT @carlyflumer: @GraceCordovano @G17Esiason @GlobalGenes I love that organizations and conferences offer live-streaming or have a video fo…
Lydia L. Seiders @lseiders3
RT @HealthSparq: Exactly! #WTFix #PatientChat https://t.co/RZqGVPM89s
Emily McIntosh @mcintose
RT @patientchat: T3: What is the value in lowering barriers to conference access/attendance to patients? What are conferences missing out o…
Marni Cartelli @Purrfectly_Rare
T.2 #patientchat Yes! As an #advocate I can’t fathom supporting conferences which don’t stand by #patientsincluded especially 4 profit ones. Pts need 2 B recognized as #stakeholders just as much as CEOs & respected as drivers of #innovation
Lydia L. Seiders @lseiders3
RT @michelerhee: @K_SalemOaks @patientchat At some industry meetings, even when the topic is patient engagement, for example, only the indu…
Amanda @LAlupusLady
RT @KenRayTaylor: T2: Absolutly, patients i know, need all help can get. Financially and medically. I am happy to see a conference is offer…
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T2: Absolutely! Given that @SalemOaks see ourselves as "on the patients' side," it is critical to have patients involved.…
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: T2: Absolutely! Given that @SalemOaks see ourselves as "on the patients' side," it is critical to have patients involved.…
Lydia L. Seiders @lseiders3
RT @HealthSparq: T2. YES! Whenever we look at conferences, we look for who will be on stage & what support there for those impacted most by…
Lisa Davis Budzinski @lisadbudzinski
@K_SalemOaks @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose Thank you for understanding what I was saying! I hear the compliance a lot when it’s only Drs, industry & business attending certain conferences ✨ #patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @lbdeck Thank you! I worry about that balance a lot. I constantly check in with myself & others to make sure that I’m repr…
Lydia L. Seiders @lseiders3
RT @bbhomebody: @RarePOV Wow-How insulting! That's terrible! #patientchat
Carly Flumer @carlyflumer
@patientchat T3: They’re missing a patient’s VOICE. Their EXPERIENCE. The journey that makes up THEIR LIFE!! #patientinclusion #patientchat
Lydia L. Seiders @lseiders3
RT @lbdeck: Glad you’re here to share this and work on solutions. #patientchat https://t.co/O8bLlryfDY
HealthSparq @HealthSparq
@michelerhee @patientchat YES! That is so awesome @michelerhee - forces organizers to really think about what they're doing with their event! #patientchat
Lydia L. Seiders @lseiders3
RT @G17Esiason: Yes! I was a keynote at @GlobalGenes RARE Patient Advocacy Summit last fall and it was an AWESOME experience. Not only was…
David C. Norris, MD @davidcnorrismd
RT @josefinebjork: Yes it’s important that conferences are #PatientsIncluded Good guidance on https://t.co/xKP80loVc7 Ideally conferences h…
Lydia L. Seiders @lseiders3
RT @JamieRoger8: Yes, this is definitely a factor in deciding what conferences we attend. @SalemOaks exists to empower patients to use the…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @michelerhee @patientchat This happens at more than just industry events. I've lost count of how many times people are…
Jamie Roger @JamieRoger8
@lisadbudzinski @SalemOaks that's rough... it's all about balance. Use #selfcare as much as you need to and just let him know when you need to take a break from any extra responsibilities to give yourself a moment. I am doing really well, enjoying the warmer weather finally coming my way. #patientchat
Emily McIntosh @mcintose
T3. Conferences are beneficial for KT and collaborations that help advance care. Without patient voices there's a missed opportunity for practical insight. Cross-functional teams are innovative because they combine diverse skill sets. Patients should be partners! #patientchat
Stephanie Fischer @RarePOV
T2 I am incredibly grateful to allies in industry such as @michelerhee & @lukebrosen who make participation in a conference conditional on the involvement of patients. If more people did that, comp passes & travel stipends for patients/caregivers would be the norm. #patientchat
Patient Empowerment @power4patients
RT @LAlupusLady: A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient commu…
Kevin Freiert @K_SalemOaks
T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value comes by growing participation. More voices, more stories, more diversity, better solutions. #patientchat #PatExpSym #pinksocks @GlobalGenes @S4PM #WTFix https://t.co/1V68noSZbP
Rachel Martens @RaeofSunshine79
@patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have every intent of finding all accessible avenues I can My dad once asked me why people cant just rent a hall, buy some buckets of chicken. If only it were that easy. #patientchat
Enlightening Results @GraceCordovano
@HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offering behind the scenes sessions. Made those attending virtually feel extra special, not just an online attendee #PatientChat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T2: Absolutly, patients i know, need all help can get. Financially and medically. I am happy to see a conference is offer…
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️🆘 @NatriceR
RT @RaeofSunshine79: @patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have e…
HealthSparq @HealthSparq
RT @patientchat: T3: What is the value in lowering barriers to conference access/attendance to patients? What are conferences missing out o…
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️🆘 @NatriceR
RT @patientchat: T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re atte…
Lydia L. Seiders @lseiders3
@abrewi3010 Just #RTing away! 😁 #patientchat We ARE #StrongerTogether and #EvenLouder
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@abrewi3010 Yes! #medx is a fabulous forward-thinking patient-centered conference. #PatientChat
Becky Brandt RN @bbhomebody
@RarePOV Wow that's just awful! I wonder if those organizations learn from their mistakes? Or if they offer a survey after the event? They need some serious schooling. #patientchat
ISurvivor Lisa Deck @lbdeck
RT @GraceCordovano: @HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offeri…
Lisa Davis Budzinski @lisadbudzinski
@RarePOV @bbhomebody Oh no! We are patients with a wealth of knowledge but we are genuine patients! #patientchat
Lydia L. Seiders @lseiders3
RT @wareFLO: @LAlupusLady I too love healthcare conferences! (such as #HITMC #HITMC19 ☺) Every other week, via shared #VirtualReality, we h…
Lydia L. Seiders @lseiders3
RT @RarePOV: T2 I am incredibly grateful to allies in industry such as @michelerhee & @lukebrosen who make participation in a conference co…
Alan Brewington @abrewi3010
A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T2: I’m really thrilled to say that almost every single meeting has had accommodations in the form of patient…
Lydia L. Seiders @lseiders3
RT @lbdeck: A1: I’ve been a patient for 20 years and an active advocate but I haven’t had the chance to represent the #patientvoice at an i…
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: Hi everyone! Lisa here from Florida & @Cpnervecenter with my fantabulous colleague @bbhomebody#patientchat
Lydia L. Seiders @lseiders3
@lisadbudzinski @Cpnervecenter @bbhomebody Hi Lisa! #patientchat
Lydia L. Seiders @lseiders3
RT @power4patients: A1: We've attended @ASCO and @ASH_hematology for many years and both of those conferences have come a loooooooooooong w…
Kevin Freiert @K_SalemOaks
Check out @GlobalGenes They may be able to help you find those avenues to reach your wonderful goal. #patientchat
Lydia L. Seiders @lseiders3
RT @HealthSparq: We’re @HealthSparq & through #WTFix are committed to ensuring patients are at the center of #healthcare conversations & wo…
Amanda @LAlupusLady
A2 I am grateful that @powerofpain is including patients in all aspects of the #iPainSummit2019 I am on the planning and sponsorship committees as well as speaking on the patient experience and moderating a panel on how CBD can reduce and relieve pain. #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: T3: What is the value in lowering barriers to conference access/attendance to patients? What are conferences missing out o…
Lydia L. Seiders @lseiders3
RT @lbdeck: @power4patients @abrewi3010 Ditto! So glad to hear positive feedback on #medx #patientchat
HealthSparq @HealthSparq
@GraceCordovano @mcintose @G17Esiason @GlobalGenes Gotta keep thinking differently to drive change - one of the things we love most about #WTFix! #patientchat
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follo…
Lydia L. Seiders @lseiders3
RT @michelerhee: @GraceCordovano @patientchat Dude. The phrase “We are all patients” makes me want to squish things with my bare hands. #Pa
Jamie Roger @JamieRoger8
RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@JamieRoger8 @SalemOaks Well, yay!!! Grasp all the warm weather you can scoop up 💕 #patientchat
Lydia L. Seiders @lseiders3
RT @LAlupusLady: A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient commu…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
Lydia L. Seiders @lseiders3
RT @davidcnorrismd: Hello, #patientchat! David here, precision-medicine methodologist w/ special interest in early-phase cancer trial metho…
Kevin Freiert @K_SalemOaks
@GlobalGenes BTW - I see what you did there with "buckets" #patientchat
Rachel Martens @RaeofSunshine79
@patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences either. This is an opportunity to inform and empower patients with new knowledge. We too become knowledge brokers #patientchat
Michele Rhee @michelerhee
@HealthSparq @patientchat I would like every speaker to require meeting organizers to ensure patient accommodations. If every presenter did the same, organizers would ideally have to include patients in the planning & execution, alleviating so many of the problems we’ve all seen. #PatientChat
ISurvivor Lisa Deck @lbdeck
A3: Patients are the most educated consumers and provide valuable insights to industry. #patientchat
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️🆘 @NatriceR
RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences ei…
Ken Taylor @KenRayTaylor
T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer their gained knowledge from in-person events and reach people that would otherwise never get the info. #patientchat
Lydia L. Seiders @lseiders3
@davidcnorrismd Hi David! Glad you made it! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@lseiders3 @Cpnervecenter @bbhomebody Hi Lydia!! ✨ #PatientChat
Barby Ingle 📣 @BarbyIngle
T3. The value of lowering barriers 2 conference access 2 PT is real life examples, stories, how end-user is experiencing this industry. Our ideas & solutions 2 make challenges we face better for the masses. There should be nothing about us w/o us... (or R caregivers) #patientchat
Michele Rhee @michelerhee
@RarePOV @lukebrosen #PatientChat https://t.co/9otXr6tzMy
ISurvivor Lisa Deck @lbdeck
RT @KenRayTaylor: T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer…
Lydia L. Seiders @lseiders3
@lisadbudzinski @Cpnervecenter @bbhomebody 💪 #patientchat
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat
Jamie Roger @JamieRoger8
@lisadbudzinski @SalemOaks I am definitely trying! I can't wait until it's not rainy/ damp and I can work outside again, both in my garden, and as an office! #patientchat #outdoors #workfromhome
International Pain Foundation® @powerofpain
RT @LAlupusLady: A2 I am grateful that @powerofpain is including patients in all aspects of the #iPainSummit2019 I am on the planning and s…
Kevin Freiert @K_SalemOaks
T3: Conferences without patients, about patients? Yuck. Nothing about us without us! #patientchat #askpatients #PatExpSym #bridgingthechasm #WTFix https://t.co/1LKg9fpOUE
Lydia L. Seiders @lseiders3
RT @HealthSparq: @michelerhee @patientchat YES! That is so awesome @michelerhee - forces organizers to really think about what they're doin…
Rachel Martens @RaeofSunshine79
@K_SalemOaks @GlobalGenes Lol! You caught me. 😉 Thanks for the tip! #patientchat
Lydia L. Seiders @lseiders3
RT @HealthSparq: @mcintose @G17Esiason @GlobalGenes YES! Livestream is so important for including patients and caregivers that can't otherw…
Amanda @LAlupusLady
RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat
Lydia L. Seiders @lseiders3
RT @RaeofSunshine79: @patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have e…
ISurvivor Lisa Deck @lbdeck
Amazing idea. #PatientsIncluded
Lydia L. Seiders @lseiders3
RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @michelerhee @patientchat It is a great segway! 👏👏👏 #patientchat
Inspire @teaminspire
@abrewi3010 Agreed. And the #MedX livestream was excellent. Other good examples of good livestream, intended for audience of patients/caregivers, have been @healthevoices and WTFix, as @GraceCordovano mentioned. The challenge is that good livestreams add cost/complexity. #patientchat
ISurvivor Lisa Deck @lbdeck
RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences ei…
Laura @auract
@patientchat I was at #wodc2019, my 1st pharma conf (I’m used to academic ones). The organizers were great and made it smooth for us @CreatineInfo to present. I got to ask lots of questions. I hope patient voices have more of a presence in panels with pharma leaders #patientchat
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @michelerhee @patientchat "We are all patients" causes instant 👇👇. It is a great statement as a segway to teachable mom…
Kevin Freiert @K_SalemOaks
T3: The more patients can attend, the more they understand and the more effective partners they can become. Industry needs to invest in the development of these partners. #patientchat #askpatients #PatExpSym #WTFix
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A1: I’ve attended a few with @GlobalGenes and @obesityhelp. Diff experiences, growth, and small connections. I rec’d scholarships on both & haven’t been approved for any others. #PatientChat
Enlightening Results @GraceCordovano
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Lydia L. Seiders @lseiders3
@GraceCordovano @michelerhee @patientchat #patientchat https://t.co/RfqTUmt3IG
Josefine Björkqvist @josefinebjork
It's important to have #PatientsInvolved because they bring a different perspective to healthcare professionals or pharmaceutical companies. For example, for many cancers quality of life and #survivorship are important topics for patients that need to be highlighted #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up... https://t.co/LxR68rpQTI #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/IqBQ0maGJ7
Emily McIntosh @mcintose
Absolutely. Spreading (informed) knowledge through support groups and other connections helps patients to be empowered and to remain current with healthcare innovations #patientchat
HealthSparq @HealthSparq
RT @michelerhee: @HealthSparq @patientchat I would like every speaker to require meeting organizers to ensure patient accommodations. If ev…
David C. Norris, MD @davidcnorrismd
A3. A conference without patients lacks a crucially important #critical voice. I believe science (medical science included!) makes progress in large part by criticizing and discarding bad ideas. The greater the diversity of criticism, the faster our progress. #patientchat
ISurvivor Lisa Deck @lbdeck
I’m new to #wtfix but am excited to learn more and get more engaged! #patientchat
Jamie Roger @JamieRoger8
@G17Esiason @CF_Foundation This is why more patients need to be included in the planning of conferences& what elements are most important to them. Patients are aware of the health risks that they face when put in a room with a couple hundred people, pharmaceutical companies may overlook this. #patientchat
Lydia L. Seiders @lseiders3
RT @Purrfectly_Rare: T.2 #patientchat Yes! As an #advocate I can’t fathom supporting conferences which don’t stand by #patientsincluded esp…
Lydia L. Seiders @lseiders3
RT @lbdeck: Amazing idea. #PatientsIncluded https://t.co/T5Zo9CaHmF
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat
Stephanie Fischer @RarePOV
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Lydia L. Seiders @lseiders3
RT @michelerhee: @RarePOV @lukebrosen #PatientChat https://t.co/9otXr6tzMy
Lydia L. Seiders @lseiders3
RT @KenRayTaylor: T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer…
Patient Chat @patientchat
T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Lydia L. Seiders @lseiders3
RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences ei…
Stephanie Fischer @RarePOV
RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences ei…
Inspire @teaminspire
RT @davidcnorrismd: A3. A conference without patients lacks a crucially important #critical voice. I believe science (medical science inclu…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RarePOV REALLY?! #PatientChat
HealthSparq @HealthSparq
T3. The conversations that can be had by including #patients are priceless. Plus, by including patients, it's recognizing that patients are at the center of everything in #healthcare...which is what we need to drive change for the better. #patientchat #WTFix
Lisa Davis Budzinski @lisadbudzinski
@JamieRoger8 @SalemOaks Get those hands in the dirt and be ready-energized ✨ #patientchat
Alan Brewington @abrewi3010
As @GraceCordovano said, less swag and more access! #PatientChat
HealthSparq @HealthSparq
RT @patientchat: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Carly Flumer @carlyflumer
@josefinebjork Love this!! Yes!! Providing different perspectives on experiences had only enhances #healthcare, not diminishes it! #patientchat
Lydia L. Seiders @lseiders3
RT @KenRayTaylor: T2: Absolutly, patients i know, need all help can get. Financially and medically. I am happy to see a conference is offer…
Enlightening Results @GraceCordovano
T3) This is about more than just lowering barriers. We are talking about refreshing priorities & striving for partnership. If you view #patients & #carepartners as essential, not just a whim or token, barriers are organically removed bc they are part of the strategy. #PatientChat
Patient Empowerment @power4patients
A3: 1 example among countless Long term engagement w/ #arthritis pts in biannual conference has influenced outcome research & contributed to research by identifying new patient reported outcome measures & domains that are important to pts https://t.co/K4XbVBVnj0 #patientchat
HealthSparq @HealthSparq
@lbdeck And we are THRILLED to have you joining us in Boston & becoming part of #WTFix! #patientchat
Lydia L. Seiders @lseiders3
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Stephanie Fischer @RarePOV
RT @JamieRoger8: @G17Esiason @CF_Foundation This is why more patients need to be included in the planning of conferences& what elements are…
Lydia L. Seiders @lseiders3
RT @RareCandace: I'll be trying to keep up with chat while at work, hi everyone! #patientchat
ISurvivor Lisa Deck @lbdeck
@HealthSparq Thank you. Me too! #patientchat
Kevin Freiert @K_SalemOaks
T4: Accountability. Nothing better than when someone in the audience can call the speaker or panel on a misconception. #patientchat @GlobalGenes #PatSymExp #pinksocks @1111lino #WTFix
HealthSparq @HealthSparq
RT @josefinebjork: It's important to have #PatientsInvolved because they bring a different perspective to healthcare professionals or pharm…
Lydia L. Seiders @lseiders3
RT @JamieRoger8: @G17Esiason @CF_Foundation This is why more patients need to be included in the planning of conferences& what elements are…
Alan Brewington @abrewi3010
RT @JamieRoger8: @G17Esiason @CF_Foundation This is why more patients need to be included in the planning of conferences& what elements are…
Patient Empowerment @power4patients
RT @patientchat: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Lydia L. Seiders @lseiders3
RT @teaminspire: @abrewi3010 Agreed. And the #MedX livestream was excellent. Other good examples of good livestream, intended for audience…
Lydia L. Seiders @lseiders3
RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to dis…
Patient Empowerment @power4patients
RT @davidcnorrismd: A3. A conference without patients lacks a crucially important #critical voice. I believe science (medical science inclu…
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @RarePOV @bbhomebody Oh no! We are patients with a wealth of knowledge but we are genuine patients! #patientchat
Lydia L. Seiders @lseiders3
RT @bbhomebody: @lisadbudzinski @Cpnervecenter Hey pard, good morning😀 #patientchat
Lydia L. Seiders @lseiders3
RT @auract: @patientchat I was at #wodc2019, my 1st pharma conf (I’m used to academic ones). The organizers were great and made it smooth f…
Carly Flumer @carlyflumer
@patientchat T4: Through the sharing of stories, emotions, and experiences! Everyone thrives and takes away some sort of hope in their own way. #patientchat
Lydia L. Seiders @lseiders3
RT @RaeofSunshine79: @RarePOV Wow this is truly unfortunate! So sorry to hear that. #patientchat
Patient Empowerment @power4patients
RT @josefinebjork: It's important to have #PatientsInvolved because they bring a different perspective to healthcare professionals or pharm…
Lydia L. Seiders @lseiders3
RT @patientchat: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: @patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat
Michele Rhee @michelerhee
@patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialogue/open discussion/forum for learning & dissemination of info & best practices. We need real life, & patients give us that. #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@JamieRoger8 @SalemOaks Balance sounds like a nice, soothing, serene kinda word but ..........😉 #patientchat
Lydia L. Seiders @lseiders3
RT @bbhomebody: @RarePOV Wow that's just awful! I wonder if those organizations learn from their mistakes? Or if they offer a survey after…
Emily Drake @EK_Drake
RT @michelerhee: @GraceCordovano @patientchat Dude. The phrase “We are all patients” makes me want to squish things with my bare hands. #Pa
Lydia L. Seiders @lseiders3
RT @bbhomebody: @Purrfectly_Rare Howdy Marni🖐😁 Happy Friday! #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: @LAlupusLady @HIMSS Hi Amanda. I'mso sorry that you've had that experience. I think and hope that things are beginning to ch…
Lydia L. Seiders @lseiders3
RT @abrewi3010: A1 at the time I felt incredibly supported by #medx. They even had a quiet room for patients that needed a break. #patientc
Lydia L. Seiders @lseiders3
RT @RareCandace: A1: I attend a lot of conferences and events for pharma where I am asked to provide patient and healthcare attorney perspe…
Amanda @LAlupusLady
A3 The value is the "priceless" when a conference invites and has patients on panels and giving keynotes. The barriers may be that a ramp in needed for the stage. Wider lanes in the exhibitor area. A quiet room is my favorite thing at a healthcare conference. #patientchat
Lydia L. Seiders @lseiders3
RT @JamieRoger8: Hi #patientchat Jamie from CT and @SalemOaks Was caught up in the middle of working and lost track of time!
Lydia L. Seiders @lseiders3
RT @LAlupusLady: A1 Things have changed @PCHAlliance strives to include patients in their #Connect2Health conference. #HealtheVoices is all…
HealthSparq @HealthSparq
RT @GraceCordovano: T3) This is about more than just lowering barriers. We are talking about refreshing priorities & striving for partnersh…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @power4patients @ASCO @ASH_hematology Agreed! Seeing more along the lines of advocacy. More work to do though #PatientC
David C. Norris, MD @davidcnorrismd
RT @RarePOV: T2 I am incredibly grateful to allies in industry such as @michelerhee & @lukebrosen who make participation in a conference co…
Patient Empowerment @power4patients
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Amanda @LAlupusLady
RT @BarbyIngle: T3. The value of lowering barriers 2 conference access 2 PT is real life examples, stories, how end-user is experiencing th…
Lydia L. Seiders @lseiders3
RT @davidcnorrismd: A3. A conference without patients lacks a crucially important #critical voice. I believe science (medical science inclu…
Emily McIntosh @mcintose
@davidcnorrismd Absolutely. Researchers face their fair share of criticism from Reviewer 2. Study designs should be able to be scrutinized by their target audiences to help improve feasibility, deliverability, and to ensure that the desires of the consumers (patients) are met! #patientchat
Lydia L. Seiders @lseiders3
RT @BarbyIngle: T3. The value of lowering barriers 2 conference access 2 PT is real life examples, stories, how end-user is experiencing th…
Patient Empowerment @power4patients
RT @BarbyIngle: T3. The value of lowering barriers 2 conference access 2 PT is real life examples, stories, how end-user is experiencing th…
Lydia L. Seiders @lseiders3
RT @lbdeck: I’m excited to be one of those patients thanks to @HealthSparq #patientchat https://t.co/I4I7sLAc47
Lisa Davis Budzinski @lisadbudzinski
@RarePOV @michelerhee @lukebrosen Hear hear!!! 👏👏👏👏 #patientchat
Enlightening Results @GraceCordovano
T4) Patients & carepartners often ask the most thought-provoking questions. Also great at cutting through blatant BS. We need that. Patients on stage is even more powerful. #PatientChat
Amanda @LAlupusLady
RT @KenRayTaylor: T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer…
ISurvivor Lisa Deck @lbdeck
T4: Patients in the audience allow for medical professionals to have direct access to those they’re trying to help. #patientchat
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @carlyflumer Hi fellow thyroid cancer survivor ✨ #PatientChat
Rachel Martens @RaeofSunshine79
@mcintose Absolutely! Was speaking with a researcher the other day about how interesting it would be to somehow keep track of how far new knowledge funnels through support networks. #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: Absolutely. Spreading (informed) knowledge through support groups and other connections helps patients to be empowered and to…
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: There sure is a big difference. For example @GlobalGenes the feel of family is amazing. At others, feels just a bit too…
David C. Norris, MD @davidcnorrismd
RT @mcintose: @davidcnorrismd Absolutely. Researchers face their fair share of criticism from Reviewer 2. Study designs should be able to b…
Patient Empowerment @power4patients
RT @michelerhee: @patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialo…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @Purrfectly_Rare Hi Marni! #patientchat
Barby Ingle 📣 @BarbyIngle
T4: The topics and questions asked by patients and their caregivers bring a spotlight to healthcare that has been left out or not shown brightly enough... We are putting light where its needed to help fix the system! #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T1: I haven't. Always thought I was too pharma. But you know… I should. #patientchat #PatExpSym #WTFix #askpatients htt…
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat T4: Through the sharing of stories, emotions, and experiences! Everyone thrives and takes away some sort of h…
Emily McIntosh @mcintose
RT @patientchat: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Lydia L. Seiders @lseiders3
RT @josefinebjork: It's important to have #PatientsInvolved because they bring a different perspective to healthcare professionals or pharm…
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialo…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @patientchat @lbdeck @mcintose Congrats! That's wonderful news! #PatientChat
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: A1: I’ve attended a few with @GlobalGenes and @obesityhelp. Diff experiences, growth, and small connections. I rec’d sch…
ISurvivor Lisa Deck @lbdeck
T4: Diverse opinions, passionate stories and first hand market research happen when patients are in the audience at a health care event. #patientchat
Lydia L. Seiders @lseiders3
RT @HealthSparq: T3. The conversations that can be had by including #patients are priceless. Plus, by including patients, it's recognizing…
David C. Norris, MD @davidcnorrismd
RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences ei…
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T3: The more patients can attend, the more they understand and the more effective partners they can become. Industry nee…
Emily McIntosh @mcintose
T4. Patients are the consumers of healthcare – so why wouldn’t you want feedback to offer better services? Lived experiences are valuable! Patients and caregivers are some of the most intrinsically motivated people I’ve come across #patientchat
Lisa Davis Budzinski @lisadbudzinski
This👇! 👏👏👏 #patientchat 💕
Lydia L. Seiders @lseiders3
RT @KenRayTaylor: T1: Yes,Yes and Yes! I think the patient message is welcomed by most and many. We love to bring the message to the public…
Enlightening Results @GraceCordovano
@carlyflumer @patientchat The authenticity & vulnerability as well as lived experiences & expertise fully enrich the discussion & event. #PatientChat
Lydia L. Seiders @lseiders3
RT @lbdeck: That’s great news! #patientchat https://t.co/beuscdlkLN
HealthSparq @HealthSparq
T4. Not only does including patients give the appropriate recognition that patients are what #healthcare is all about, but gives an important aspect of access, inclusion, transparency, & openness to conversations, criticism & working together to make change. #WTFix #PatientChat
Lydia L. Seiders @lseiders3
RT @LAlupusLady: Nothing is going to stop me from sharing my patient journey/advocacy it is vital for patients to be present. From the exa…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: T3) This is about more than just lowering barriers. We are talking about refreshing priorities & striving for partnersh…
Lydia L. Seiders @lseiders3
RT @carlyflumer: @patientchat T4: Through the sharing of stories, emotions, and experiences! Everyone thrives and takes away some sort of h…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @michelerhee @patientchat So nice to see you Michele! Happy Friday! #PatientChat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: @michelerhee @patientchat Yes - I want to hear more. ??There weren't enough patients??? #patientchat
Marni Cartelli @Purrfectly_Rare
T.3 #patientchat I feel like pts bring much 2 Conf & more importantly bring Conf message back 2 own communities More & more pts are influencing their care directly & no longer go w what 1st Dr says. I don’t understand Y Conf organizers & sponsors wouldn’t want more in attendance
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @RarePOV @michelerhee @lukebrosen Hear hear!!! 👏👏👏👏 #patientchat
Lydia L. Seiders @lseiders3
RT @LAlupusLady: A2 I am grateful that @powerofpain is including patients in all aspects of the #iPainSummit2019 I am on the planning and s…
Becky Brandt RN @bbhomebody
T3 Without Patients nobody has a job! The #patientperspective should guide many decisions for healthcare companies. We can save them money from top to bottom! If patients don't use a med or product, its over for the producer. WHEN WILL THEY LEARN? #patientchat
David C. Norris, MD @davidcnorrismd
RT @KenRayTaylor: T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @GraceCordovano So many factors! We still love this video you did for #WTFix last year, @GraceCordovano - sums it up perfe…
Lydia L. Seiders @lseiders3
RT @lbdeck: A3: Patients are the most educated consumers and provide valuable insights to industry. #patientchat
Carly Flumer @carlyflumer
@K_SalemOaks @GlobalGenes @1111Lino Didn’t even think of this - great point! Reminds me of the recent argument about doctors and “Dr. Google.” #patientchat
Lydia L. Seiders @lseiders3
RT @GinaMcGalliard: @abrewi3010 Yes! #medx is a fabulous forward-thinking patient-centered conference. #PatientChat
Lydia L. Seiders @lseiders3
RT @power4patients: @michelerhee @patientchat TRUTH! #patientchat
Inspire @teaminspire
@patientchat We helped get a cancer patient advocate on stage at a healthcare journalism conference apx 5 years ago, and the advocate told me several physicians & journalists thanked her not just for what she said, but for bringing perspectives that wouldn't have been there. #patientchat
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value…
Stephanie Fischer @RarePOV
This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & caregivers who are well-off financially can participate & we miss an opportunity to hear from people struggling financially (often due to health) #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: Check out @GlobalGenes They may be able to help you find those avenues to reach your wonderful goal. #patientchat https:/…
Jamie Roger @JamieRoger8
@lisadbudzinski @SalemOaks hahaha, so true, but it's important in finding the balance that works for you TODAY... not yesterday or tomorrow, but what you need right now to heal. #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: @G17Esiason @GlobalGenes I love this. Having a live-stream option or even posting video coverage after the fact is an excelle…
Lydia L. Seiders @lseiders3
RT @abrewi3010: As @GraceCordovano said, less swag and more access! #PatientChat https://t.co/S3FKxnoECE
Stacey Tinianov @coffeemommy
Interesting question & great #patientchat topic. I think the first tip-off to whether or not my patient/advocate voice will be welcomed is whether or not they have an advocate/patient rate for registration. @SABCSSanAntonio & @ASCO have been awesome. Both offer advocate rates.
Lydia L. Seiders @lseiders3
RT @power4patients: A3: 1 example among countless Long term engagement w/ #arthritis pts in biannual conference has influenced outcome rese…
Lydia L. Seiders @lseiders3
RT @BarbyIngle: T4: The topics and questions asked by patients and their caregivers bring a spotlight to healthcare that has been left out…
Candace @RareCandace
A4: Patients in the audience can provide instant feedback, and keep the conversation going long after the session has ended. #patientchat
Lydia L. Seiders @lseiders3
RT @Purrfectly_Rare: T.3 #patientchat I feel like pts bring much 2 Conf & more importantly bring Conf message back 2 own communities More &…
Nick Dawson @nickdawson
@patientchat @HealthSparq #PatientChat lots of experience here :) It often humanizes, grounds, and reframed the discussion. But it’s important to note that it also makes some people feel uncomfortable (which is on them, but never the less it exists)
Lydia L. Seiders @lseiders3
RT @carlyflumer: @josefinebjork Love this!! Yes!! Providing different perspectives on experiences had only enhances #healthcare, not dimini…
Lydia L. Seiders @lseiders3
RT @lisadbudzinski: @JamieRoger8 @SalemOaks Get those hands in the dirt and be ready-energized ✨ #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A4: If it’s RE health, and we as patients have health issues/trials/conditions, wouldn’t it make sense for us to be there? To ask US? #PatientChat
Stephanie Fischer @RarePOV
RT @mcintose: T4. Patients are the consumers of healthcare – so why wouldn’t you want feedback to offer better services? Lived experiences…
Sharon Thompson @sharontwriter
RT @patientchat: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql
Jamie Roger @JamieRoger8
@lbdeck @lisadbudzinski @SalemOaks Hi lisa, how are you? #patientchat
Patient Empowerment @power4patients
RT @RarePOV: This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & care…
Stephanie Fischer @RarePOV
RT @BarbyIngle: T4: The topics and questions asked by patients and their caregivers bring a spotlight to healthcare that has been left out…
Abby Hershberger @AbbyHershberger
@patientchat T1- No I have never attended one and I have never been invited to one that I can think of? #patientchat
Lydia L. Seiders @lseiders3
RT @lbdeck: @HealthSparq Thank you. Me too! #patientchat
HealthSparq @HealthSparq
@GraceCordovano @carlyflumer @patientchat Yes! #patientchat
DoubleTrojan @DoubleTrojan
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Lydia L. Seiders @lseiders3
RT @lbdeck: T4: Diverse opinions, passionate stories and first hand market research happen when patients are in the audience at a health ca…
Becky Brandt RN @bbhomebody
@Purrfectly_Rare Great point Marni! Patients educate many others around them! #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value…
Stephanie Fischer @RarePOV
RT @GraceCordovano: T4) Patients & carepartners often ask the most thought-provoking questions. Also great at cutting through blatant BS. W…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @lbdeck And we are THRILLED to have you joining us in Boston & becoming part of #WTFix! #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: T4. Patients are the consumers of healthcare – so why wouldn’t you want feedback to offer better services? Lived experiences…
Marni Cartelli @Purrfectly_Rare
*drop 🎤 *
Lydia L. Seiders @lseiders3
RT @HealthSparq: T4. Not only does including patients give the appropriate recognition that patients are what #healthcare is all about, but…
Jamie Roger @JamieRoger8
RT @BarbyIngle: T4: The topics and questions asked by patients and their caregivers bring a spotlight to healthcare that has been left out…
David C. Norris, MD @davidcnorrismd
RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to di…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offeri…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @HealthSparq @patientexpsym @lbdeck @mcintose This is so awesome! Thank you for doing that! Would love to hear if you h…
HealthSparq @HealthSparq
RT @nickdawson: @patientchat @HealthSparq #PatientChat lots of experience here :) It often humanizes, grounds, and reframed the discussion…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: T4) Patients & carepartners often ask the most thought-provoking questions. Also great at cutting through blatant BS. W…
Stephanie Fischer @RarePOV
RT @michelerhee: @patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialo…
ISurvivor Lisa Deck @lbdeck
RT @BarbyIngle: T1: Yes, I have attended over 100 industry events since 2007 to rep the patient voice... mostly welcomed (a few providers h…
Alan Brewington @abrewi3010
A4 health literacy will only improve if all partners are participating in the conversation. You can’t have a open and 2 way conversation without everyone included #patientchat
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
@HealthSparq @mcintose @GlobalGenes Especially when the folks live streaming have the ability to communicate with presenters and in-person attendees via conference apps or virtual meeting portals. #patientchat
ALS Advocacy @alsadvocacy
RT @RarePOV: This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & care…
Lydia L. Seiders @lseiders3
RT @teaminspire: @patientchat We helped get a cancer patient advocate on stage at a healthcare journalism conference apx 5 years ago, and t…
Amanda @LAlupusLady
A4 The diversity of the healthcare conference audience creates an innovative space for a authentic exchange of ideas and insight. Conferences are a great place to "listen, share, connect and engage." as @jeffpulver says. #patientchat
Stephanie Fischer @RarePOV
RT @GraceCordovano: T3) This is about more than just lowering barriers. We are talking about refreshing priorities & striving for partnersh…
Lydia L. Seiders @lseiders3
RT @RarePOV: This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & care…
ISurvivor Lisa Deck @lbdeck
RT @Purrfectly_Rare: T.3 #patientchat I feel like pts bring much 2 Conf & more importantly bring Conf message back 2 own communities More &…
Nick Dawson @nickdawson
@G17Esiason @CF_Foundation #PatientChat you’re pointing out a fundamentally abelest thing about most meetings - they happen in person which isn’t doable for many.
HealthSparq @HealthSparq
RT @RarePOV: This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & care…
ISurvivor Lisa Deck @lbdeck
RT @JamieRoger8: @lbdeck @lisadbudzinski @SalemOaks Hi lisa, how are you? #patientchat
Amanda @LAlupusLady
RT @HealthSparq: T3. The conversations that can be had by including #patients are priceless. Plus, by including patients, it's recognizing…
Lydia L. Seiders @lseiders3
RT @lbdeck: T4: Patients in the audience allow for medical professionals to have direct access to those they’re trying to help. #patientch
Lisa Davis Budzinski @lisadbudzinski
T3 Patients have a wealth of knowledge living with the condition 24/7. #livedexperience is such a valuable teaching tool for the #healthcare industry #patientchat
Stephanie Fischer @RarePOV
RT @HealthSparq: T3. The conversations that can be had by including #patients are priceless. Plus, by including patients, it's recognizing…
David C. Norris, MD @davidcnorrismd
RT @GraceCordovano: T3) This is about more than just lowering barriers. We are talking about refreshing priorities & striving for partnersh…
Ken Taylor @KenRayTaylor
T4: It adds perspective and makes the event participation more rounded. Opinions from all sides matter. Patients have a powerful voice and want to be heard. #HaveTheNerveToBeHeard #patientchat
DoubleTrojan @DoubleTrojan
@G17Esiason @CF_Foundation It blows me away that in 2019 the @CF_Foundation is discriminating against the population they are supposed to serve when it comes to access to their annual conference . #patientchat #patientsincluded #NothingAboutUsWithoutUs https://t.co/JWYSTOUgbe
Michele Rhee @michelerhee
@patientchat T4: Patients cut thru BS. When speakers are sticking to talking points or being polite, I’ve seen patient speakers & audience members say the thing or ask the ? that WE ALL were thinking. Patients push for answers & action—bc this is our lives, not just our jobs. #PatientChat
Rachel Martens @RaeofSunshine79
@patientchat T4 I remember my first research conference where we broke off into groups. A researcher asked me a perfectly normal question and my brain panicked My 1st impulse was to want to blurt out “I don’t know, I’m just a mom!”😆 Pts deserve to see value in their insights #patientchat
Mary MACK @MaryOCMack
T4. Discomfort and truth to power can bring about change. That’s what patients at conferences has the chance to do. #patientchat
Becky Brandt RN @bbhomebody
Great point Candace!! With just a few taps on our screens the info is all over Social media! #patientchat
HealthSparq @HealthSparq
RT @lisadbudzinski: T3 Patients have a wealth of knowledge living with the condition 24/7. #livedexperience is such a valuable teaching too…
Enlightening Results @GraceCordovano
RT @nickdawson: @G17Esiason @CF_Foundation #PatientChat you’re pointing out a fundamentally abelest thing about most meetings - they happen…
David C. Norris, MD @davidcnorrismd
RT @michelerhee: @patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialo…
ISurvivor Lisa Deck @lbdeck
RT @RaeofSunshine79: @patientchat T4 I remember my first research conference where we broke off into groups. A researcher asked me a perfec…
Emily McIntosh @mcintose
@RaeofSunshine79 100%! My fear, as a researcher, is always the quality of the information. I want proper (scientific) information to get spread (not the telephone chain-purple-monkey-dishwasher). We have to get better at scientific literacy and to help improve KT without jargon. #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up... https://t.co/LxR68rpQTI #patientchat
Amanda @LAlupusLady
RT @KenRayTaylor: T4: It adds perspective and makes the event participation more rounded. Opinions from all sides matter. Patients have a p…
Patient Chat @patientchat
T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5RYdAaQd7
Sarah Bramblette @Born2lbFat
RT @teaminspire: @patientchat We helped get a cancer patient advocate on stage at a healthcare journalism conference apx 5 years ago, and t…
Lydia L. Seiders @lseiders3
RT @patientchat: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5…
Lydia L. Seiders @lseiders3
RT @patientchat: Topic 5 (T5:) coming up... https://t.co/LxR68rpQTI #patientchat
ISurvivor Lisa Deck @lbdeck
RT @RarePOV: This is KEY. To have representation of a diversity of voices, travel stipends arenecessary. Without them, only patients & care…
Lydia L. Seiders @lseiders3
RT @patientchat: Topic 4 (T4:) coming up... https://t.co/LxR68rpQTI #patientchat
Alan Brewington @abrewi3010
RT @bbhomebody: T3 Without Patients nobody has a job! The #patientperspective should guide many decisions for healthcare companies. We can…
HealthSparq @HealthSparq
@nickdawson @G17Esiason @CF_Foundation Totally agree - live stream & digital inclusion is critical at events and something that we need to keep pushing for even more. #patientchat
Stephanie Fischer @RarePOV
RT @michelerhee: @patientchat T4: Patients cut thru BS. When speakers are sticking to talking points or being polite, I’ve seen patient spe…
Lisa Davis Budzinski @lisadbudzinski
If I drop out of sight it’s due to a storm coming across #patientchat https://t.co/Pk2RcS5oF9
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RarePOV @michelerhee @lukebrosen 🙏🏻 if only! 😉 #PatientChat
DoubleTrojan @DoubleTrojan
@patientchat I can say that the @CF_Foundation has been vocal and steadfast about NOT including patients fully in their annual conference for #cysticfibrosis patients. It's so sadly #disciminatory and unacceptable in 2019. #patientchat #patientsincluded #NothingAboutUsWithoutUs
Michele Rhee @michelerhee
@RarePOV YES. It’s so important to recognize that diversity of perspectives is not just about industry or patient, advocacy representative or patient...but there are so many components impacting who can or can’t participate in meetings. #PatientChat
HealthSparq @HealthSparq
@G17Esiason @mcintose @GlobalGenes Yes! It needs to be a conversion with the digital audience, not just a show for them. #WTFix #PatientChat
HealthSparq @HealthSparq
RT @patientchat: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5…
Julia Maues @itsnot_pink
@GraceCordovano T4) #patientchat Very interesting question. Having patients in audience definitely keeps speakers on their toes about the fact that people’s lives are being impacted. For example, a speaker wouldn’t get away with the terrible phrase: “the patient failed the drug”
Marion Malcolm @MarionMalcolm2
RT @josefinebjork: Hi everyone, Josefine Björkqvist here from @aberdeenuni, Scotland. The focus of my research is patient involvement in th…
David C. Norris, MD @davidcnorrismd
@michelerhee @patientchat “scripted monologue by the wrong speaker” 🔥🔥🔥🔥 #patientchat
Kevin Freiert @K_SalemOaks
T5: Lobby for "bring a patient" pricing. (Add $50 and you can bring that friend) #patientchat #askpatients #PatExpSym
Rachel Martens @RaeofSunshine79
@patientchat T4 (cont’d) but seriously if I was wearing a hooded sweatshirt I would put the hood on and cinched it over my face. Confidence in your seat at “the table” is something I’d love to see in every patient #patientchat
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
RT @HealthSparq: @G17Esiason @mcintose @GlobalGenes Yes! It needs to be a conversion with the digital audience, not just a show for them. #…
Jamie Roger @JamieRoger8
@lisadbudzinski OH GOODNESS! Take cover while you can. #patientchat
Abby Hershberger @AbbyHershberger
@patientchat T2- n/a I am a patient and have never attended one 😀 #patientchat
Nick Dawson @nickdawson
@patientchat T4 #PatientChat so…controversial consideration: We’ve had phases of participation. First was “let us in!” Then “we’re all together”. Now is it time to ask what’s the intention? What do we want to get out of conferences and meetings together? Or should the whole notion evolve?
Enlightening Results @GraceCordovano
@coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. Reach out to conference organizers, ask if there is a scholarship or reduced fee. Some may create on the fly. Offer to be a SoMe ambassador or write a blog. Ask for sponsorship. #PatientChat
Emily McIntosh @mcintose
RT @patientchat: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5…
Josefine Björkqvist @josefinebjork
Having patients in the audience can bring important questions & perspectives that may otherwise be missed. To enable this it's important we all speak the same language and we work to remove barriers e.g. jargon and overly technical language from conferences #PatientChat
Carly Flumer @carlyflumer
@patientchat As another person mentioned, provide scholarships! Conferences can be pricey! #patientchat
Enlightening Results @GraceCordovano
RT @ZHeatherChamp: @patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat
Maggie Rogers @magthenomad
T4. We spit truth. Aren’t afraid to ask the tough questions. And add a human element to the work that people are doing who we are sitting amongst. #patientchat
Kevin Freiert @K_SalemOaks
T5: Have a killer question that we all ask at every conference we go to. Make it a thing. #patientchat #askpatients #PatExpSym @GlobalGenes https://t.co/RYSEb0RMM0
David C. Norris, MD @davidcnorrismd
RT @davidcnorrismd: @michelerhee @patientchat “scripted monologue by the wrong speaker” 🔥🔥🔥🔥 #patientchat
Alan Brewington @abrewi3010
A4 patients turn conferences from book reports to a human centered experience. #patientchat
HealthSparq @HealthSparq
T5. Those in conference organizing roles should always consider how to incorporate patient perspective early, incl. patients, caregivers, & advocates in the planning phase. Offer live stream, scholarships & stipends to ensure patients are represented. #WTFix #PatientChat
Emily McIntosh @mcintose
T5. Conferences are becoming #PatientAccredited, which is great, but we also need improved accessibility. Discounted rates as well as sessions aimed specifically for patients (no jargon) to promote knowledge translation will help with patient empowerment #patientchat
Patient Empowerment @power4patients
@ZHeatherChamp @patientchat It's 1 of those situations that when you say it out loud, as you just did, it's so painfully obvious & criminally insane that there's a need to have this discussion & TO THIS DAY there are still conferences & pharma meetings that don't meaningfully include patients #patientchat
HealthSparq @HealthSparq
RT @GraceCordovano: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. R…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A5: Not to beat a dead horse, but if there could be a way to really INCLUDE those of us - w/o $ to attend in person - would be a HUGE FIRST STEP. (IMO) #PatientChat
Abby Hershberger @AbbyHershberger
@patientchat T3: I think cost for one and I wish some could be online and maybe they are and I just don’t know. It’s also hard to travel long distances and sit for a long time with a chronic illness. So maybe having more in each state available? Sometimes we as patients... #patientchat
Kevin Freiert @K_SalemOaks
T5: Being a small company, budgets are tight. However, being able to join forces with other small shops would help us chip in. #patientchat #PatExpSym #askpatients
Lisa Davis Budzinski @lisadbudzinski
T4 Depends on if we can respond or not. Patients will be posting on social channels & sharing #patientchat
DoubleTrojan @DoubleTrojan
@patientchat T2: this is something #cysticfibrosis patients r looking 2 target because the @CF_Foundation has told patients that their annual conference is only for scientists & doctors. Non-patient attendees care too ! #patientchat #patientsincluded #NothingAboutUsWithoutUs
David C. Norris, MD @davidcnorrismd
RT @K_SalemOaks: T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value…
Lydia L. Seiders @lseiders3
@patientchat A:5 Keep having open & public conversations pertaining patient attendance & support at conferences. Be willing to respectfully call out those who refuse to provide/include it. #EndUsersMatter #WeGiveTheData #patientchat
Michele Rhee @michelerhee
@coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-of-charge patient registrations. Even a discounted rate can be too much for patients dealing with medical bills, etc. Free registration can make a huge difference. #PatientChat
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: @patientchat A5: Not to beat a dead horse, but if there could be a way to really INCLUDE those of us - w/o $ to attend i…
HealthSparq @HealthSparq
@K_SalemOaks @GlobalGenes What's the question?! #WTFix #PatientChat
Lydia L. Seiders @lseiders3
RT @carlyflumer: @patientchat As another person mentioned, provide scholarships! Conferences can be pricey! #patientchat
Becky Brandt RN @bbhomebody
T4 There's Nothing like a Patient who is tired of hurting! We get involved and get others involved. When enough is enough, we pull out out Superpowers and go ballistic 😀 #patientchat
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
Patients need to learn (AND BE ENCOURAGED) to leverage their conditions in ways that tip the balance of power in our favor - ex. Withholding the use our data (which we own), and push fundraising efforts towards organizations who are #patientincluded #PatientChat
HealthSparq @HealthSparq
RT @josefinebjork: Having patients in the audience can bring important questions & perspectives that may otherwise be missed. To enable thi…
Stephanie Fischer @RarePOV
T5 Patients, caregivers & other advocates can ask for access & livestreaming but for-profit conference organizers are more likely to listen to industry. Industry allies, PLEASE ask whether an event is #patientsincluded BEFORE committing to speak, sponsor or exhibit! #patientchat
Enlightening Results @GraceCordovano
RT @HealthSparq: T5. Those in conference organizing roles should always consider how to incorporate patient perspective early, incl. patien…
Lydia L. Seiders @lseiders3
@carlyflumer @patientchat 🙌 yes! #patientchat
Rachel Martens @RaeofSunshine79
@mcintose You are absolutely right and we are in need of new KT strategies. It’s an avenue I’m both fascinated by and would love to participate more in regards to more out of the box thinking. #patientchat
HealthSparq @HealthSparq
@josefinebjork Great consideration of additional barriers to attendance! #WTFix #patientchat
ISurvivor Lisa Deck @lbdeck
@patientchat T5: one way to do that is to always ask if a conference is #patientsincluded when you’re asked to participate in an event. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@davidcnorrismd @michelerhee @patientchat 👏👏👏 seen way too many of these✨ #patientchat
Lydia L. Seiders @lseiders3
RT @coffeemommy: Interesting question & great #patientchat topic. I think the first tip-off to whether or not my patient/advocate voice wil…
Becky Brandt RN @bbhomebody
RT @abrewi3010: A4 patients turn conferences from book reports to a human centered experience. #patientchat
Lydia L. Seiders @lseiders3
RT @G17Esiason: @HealthSparq @mcintose @GlobalGenes Especially when the folks live streaming have the ability to communicate with presenter…
Lydia L. Seiders @lseiders3
RT @RarePOV: T5 Patients, caregivers & other advocates can ask for access & livestreaming but for-profit conference organizers are more lik…
John Chamberlain @misterchambo
RT @GraceCordovano: Are you organizing a conference? Have you considered sponsoring patients to attend? We don't need more swag at confer…
Lydia L. Seiders @lseiders3
RT @abrewi3010: A4 health literacy will only improve if all partners are participating in the conversation. You can’t have a open and 2 way…
Stephanie Fischer @RarePOV
RT @HealthSparq: T5. Those in conference organizing roles should always consider how to incorporate patient perspective early, incl. patien…
Barby Ingle 📣 @BarbyIngle
T5. Where there is no/low PT attendance ask 4 it. For the #iPainSummit2019, we R specifically raising sponsor funds 2 cover patient scholarships for those who cant afford to attend. We are offering 100 full or partial scholarships apply today! https://t.co/sxETR2ejHa #patientchat
Lydia L. Seiders @lseiders3
RT @michelerhee: @coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-o…
Abby Hershberger @AbbyHershberger
@patientchat T3:... feel that doctors and others don’t take us seriously or really listen so I think that’s unfortunately another barrier. I think if conferences could work this out it would be better attended & people would gain a lot with patients attending & raising awareness #patientchat
Michele Rhee @michelerhee
@Purrfectly_Rare @patientchat Lol...yeah...and it ends up being an echo chamber of all the same, self-congratulatory “patient-centered” talking points. #PatientChat
DoubleTrojan @DoubleTrojan
THIS! Thank you @michelerhee . We in the #cysticfibrosis committee are so happy that speakers are appalled that the @CF_Foundation isn't including patients in their annual conference. #discriminatory #patientchat #patientsincluded #nothingaboutuswithoutus
David C. Norris, MD @davidcnorrismd
RT @lisadbudzinski: @davidcnorrismd @michelerhee @patientchat 👏👏👏 seen way too many of these✨ #patientchat
Kevin Freiert @K_SalemOaks
T5: Put out press releases for patients who are attending. Congratulations on the scholarship sponsored by … #patientchat #askpatients @Global Genes #PatExpSym
Stephanie Fischer @RarePOV
RT @G17Esiason: Patients need to learn (AND BE ENCOURAGED) to leverage their conditions in ways that tip the balance of power in our favor…
David C. Norris, MD @davidcnorrismd
RT @K_SalemOaks: T4: Accountability. Nothing better than when someone in the audience can call the speaker or panel on a misconception. #…
Amanda @LAlupusLady
A5 Every healthcare conference should strive to include members of the patient community. Patient attendance supports shifting the paradigm in healthcare community when conference organizers understand this, it gets better. Sponsor patient attendees and pay them/us. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A5, part 2: Not meaning to poke the bear/throw stones, but I heard there was a pt. conf for the Syndrome I have. Located across the US, obvi I couldn’t attend. Shouldn’t my voice still matter tho? #PatientChat #RareDisease #pten
Becky Brandt RN @bbhomebody
Right on Maggie! 👍#patientchat
Nick Dawson @nickdawson
@patientchat Candidly, im more excited to see patient created and led events in which industry peeps have to clamor to get in #PatientChat
Patient Empowerment @power4patients
RT @michelerhee: @coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-o…
Lydia L. Seiders @lseiders3
"We spit truth" 💪👊 Yes, yes we do. #patientchat #boom
Lydia L. Seiders @lseiders3
RT @nickdawson: @patientchat T4 #PatientChat so…controversial consideration: We’ve had phases of participation. First was “let us in!” Then…
Emily McIntosh @mcintose
@AbbyHershberger @patientchat Perhaps not just streamed online, but also have some kind of associated chat so that those who cannot attend can still have a means to ask questions and contribute? #patientchat
Lydia L. Seiders @lseiders3
RT @josefinebjork: Having patients in the audience can bring important questions & perspectives that may otherwise be missed. To enable thi…
Alan Brewington @abrewi3010
A5 ask conference leaders if they have patient scholarships or livestream options. If yes offer up your services as an advocate. Things like paywalls are obsolete, call things like paywalls out. #patientchat
Lydia L. Seiders @lseiders3
RT @JamieRoger8: @lisadbudzinski @SalemOaks hahaha, so true, but it's important in finding the balance that works for you TODAY... not yest…
Amanda @LAlupusLady
RT @BarbyIngle: T5. Where there is no/low PT attendance ask 4 it. For the #iPainSummit2019, we R specifically raising sponsor funds 2 cover…
Lydia L. Seiders @lseiders3
RT @bbhomebody: @Purrfectly_Rare Great point Marni! Patients educate many others around them! #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @GraceCordovano: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. R…
Lydia L. Seiders @lseiders3
RT @RareCandace: A4: Patients in the audience can provide instant feedback, and keep the conversation going long after the session has ende…
Lydia L. Seiders @lseiders3
RT @KenRayTaylor: T4: It adds perspective and makes the event participation more rounded. Opinions from all sides matter. Patients have a p…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. R…
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat T4 It makes the discussion more reality based & shows lived experience is expertise vitally important in medicine. Discussions excluding patients often discuss things not relating at all to my experience, like talk about patients “finding identity in their illness.” #PatientChat
Lydia L. Seiders @lseiders3
RT @abrewi3010: A4 patients turn conferences from book reports to a human centered experience. #patientchat
Lydia L. Seiders @lseiders3
RT @mcintose: T5. Conferences are becoming #PatientAccredited, which is great, but we also need improved accessibility. Discounted rates as…
Lydia L. Seiders @lseiders3
RT @HealthSparq: @nickdawson @G17Esiason @CF_Foundation Totally agree - live stream & digital inclusion is critical at events and something…
Abby Hershberger @AbbyHershberger
@patientchat T4: I think we as patients have a unique experience and outlook to offer. Things we like and things we don’t that doctors and others may not even be aware what they are doing can be hurtful or helpful. I think its important to include patients. #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T5: Have a killer question that we all ask at every conference we go to. Make it a thing. #patientchat #askpatients #Pat
Lydia L. Seiders @lseiders3
RT @carlyflumer: @K_SalemOaks @GlobalGenes @1111Lino Didn’t even think of this - great point! Reminds me of the recent argument about docto…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RarePOV Well said! #PatientChat
Lydia L. Seiders @lseiders3
RT @MaryOCMack: T4. Discomfort and truth to power can bring about change. That’s what patients at conferences has the chance to do. #patien
Lydia L. Seiders @lseiders3
RT @GraceCordovano: @carlyflumer @patientchat The authenticity & vulnerability as well as lived experiences & expertise fully enrich the di…
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: @patientchat A4: If it’s RE health, and we as patients have health issues/trials/conditions, wouldn’t it make sense for…
𝙂𝙐𝙉𝙉𝘼𝙍 𝙀𝙎𝙄𝘼𝙎𝙊𝙉 @G17Esiason
Patient inclusion explicitly communicates patient NEEDS rather than organizational guesses. A criticism of #PatientsIncluded is that patients will alter the voice and missions of medical conferences. If that’s the case, then it means the planners missed their mark #patientchat
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: @RarePOV Well said! #PatientChat
Lydia L. Seiders @lseiders3
RT @AbbyHershberger: @patientchat T4: I think we as patients have a unique experience and outlook to offer. Things we like and things we do…
Lydia L. Seiders @lseiders3
RT @GinaMcGalliard: @patientchat T4 It makes the discussion more reality based & shows lived experience is expertise vitally important in m…
Jamie Roger @JamieRoger8
@salemoaks strives to empower patients to find that voice through knowledge of the research and development process and what it means to be an active member in their treatment. #patientchat
Patient Empowerment @power4patients
RT @abrewi3010: A5 ask conference leaders if they have patient scholarships or livestream options. If yes offer up your services as an advo…
Lydia L. Seiders @lseiders3
RT @abrewi3010: A5 ask conference leaders if they have patient scholarships or livestream options. If yes offer up your services as an advo…
Lisa Davis Budzinski @lisadbudzinski
RT @HealthSparq: T5. Those in conference organizing roles should always consider how to incorporate patient perspective early, incl. patien…
Inspire @teaminspire
RT @magthenomad: T4. We spit truth. Aren’t afraid to ask the tough questions. And add a human element to the work that people are doing who…
Lydia L. Seiders @lseiders3
RT @mcintose: @AbbyHershberger @patientchat Perhaps not just streamed online, but also have some kind of associated chat so that those who…
Lydia L. Seiders @lseiders3
RT @nickdawson: @patientchat Candidly, im more excited to see patient created and led events in which industry peeps have to clamor to get…
DoubleTrojan @DoubleTrojan
@josefinebjork Please take note @CF_Foundation ! It's 2019 - it's time to include patients in your conference. We deserve to be a part of a conference that is about US! #patientchat #patientsincluded #NothingAboutUsWithoutUs
Michele Rhee @michelerhee
RT @RarePOV: T5 Patients, caregivers & other advocates can ask for access & livestreaming but for-profit conference organizers are more lik…
Lydia L. Seiders @lseiders3
RT @ZHeatherChamp: A5, part 2: Not meaning to poke the bear/throw stones, but I heard there was a pt. conf for the Syndrome I have. Located…
David C. Norris, MD @davidcnorrismd
@carlyflumer @K_SalemOaks