#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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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 [REDACTED USER] 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
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/…
@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 [REDACTED USER], 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 & [REDACTED USER] to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0
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 G @LAlupusLady
RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & [REDACTED USER] to dis…
Patient Chat @patientchat
You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #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
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Carly Flumer (she/her) @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 [REDACTED USER] Congrats! That's wonderful news! #PatientChat
@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 G @LAlupusLady
Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
@davidcnorrismd
Hello, #patientchat! David here, precision-medicine methodologist w/ special interest in early-phase cancer trial methodology & ethics.
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
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 Network @power4patients
RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & [REDACTED USER] to dis…
HealthSparq @HealthSparq
@LAlupusLady Hi Amanda! So great to see you! #patientchat #WTFix
Amanda G @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…
Enlightening Results 💡 @GraceCordovano
Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #patientchat
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 @InspireIsHealth
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and [REDACTED USER] here: https://…
HealthSparq @HealthSparq
@GraceCordovano @patientchat @lbdeck [REDACTED USER] 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
[REDACTED USER] @Cpnervecenter @bbhomebody Great to see you ladies! #PatientChat
Lydia L. Seiders @lseiders3
RT @patientchat: Joining along is Lisa @lbdeck and Emily [REDACTED USER], the winners of patient scholarships to attend The Patient Experience Sy…
HealthSparq @HealthSparq
[REDACTED USER] @patientchat @lbdeck [REDACTED USER] 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 @InspireIsHealth
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 Network @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…
Amanda G @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
HealthSparq @HealthSparq
@teaminspire Hi John! #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov
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 Official @BarbyIngle
Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and [REDACTED USER], 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
ISurvivor Lisa Deck @lbdeck
RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and [REDACTED USER], 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
Enlightening Results 💡 @GraceCordovano
@BarbyIngle @patientchat @lbdeck @HealthSparq [REDACTED USER] 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
Enlightening Results 💡 @GraceCordovano
@josefinebjork [REDACTED USER] How wonderful that you could join us! Welcome! #PatientChat
Patient Empowerment Network @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…
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 & [REDACTED USER], attend! #WTFix #PatientChat
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…
Lydia L. Seiders @lseiders3
I'm Lydia. #MD State Ambassador (volunteer) for @RareAction with @RareDiseases; #advisor for [REDACTED USER] & @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!
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 (she/her) @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
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
Lydia L. Seiders @lseiders3
@teaminspire Hi John! #patientchat
Amanda G @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
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 [REDACTED USER] 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
[REDACTED USER] @patientchat @lbdeck [REDACTED USER] 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
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
[REDACTED USER] @patientchat @HealthSparq Hi Emily! #patientchat
HealthSparq @HealthSparq
@bbhomebody @Purrfectly_Rare Hi Becky!!! Thank you for joining, great to see you! #patientchat
Amanda G @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…
Patient Empowerment Network @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 Official @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
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
HealthSparq @HealthSparq
@Purrfectly_Rare Hi Marni! #patientchat
Lydia L. Seiders @lseiders3
@BarbyIngle @patientchat @lbdeck @HealthSparq [REDACTED USER] 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
ISurvivor Lisa Deck @lbdeck
That’s great news! #patientchat
Amanda G @LAlupusLady
A1 Things have changed @PCHAlliance strives to include patients in their #Connect2Health conference. #HealtheVoices is all about empowering patients. #PatientChat
@davidcnorrismd
@LAlupusLady @HIMSS That’s very interesting, Amanda. Would you elaborate? #patientchat
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…
Amanda G @LAlupusLady
RT @HealthSparq: #WTFix is all about finding stories that #healthcare needs to hear — and highlighting them for the world to see. To learn…
@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 (she/her) @carlyflumer
[REDACTED USER] @patientchat @ThyCaInc @HealthSparq I did not! I’ll definitely look into it! Thank you! #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/…
Inspire @InspireIsHealth
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 Network @power4patients
@GraceCordovano @ASCO @ASH_hematology True #patientchat
Enlightening Results 💡 @GraceCordovano
[REDACTED USER] [REDACTED USER] 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
Patient Empowerment Network @power4patients
@K_SalemOaks You definitely should #patientchat
@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 [REDACTED USER] 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 Systems 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 Systems Engineering @wareFLO
RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #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
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
@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…
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 @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 | host | producer @tommy_geraci_
RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat
HealthSparq @HealthSparq
@GraceCordovano @patientexpsym @lbdeck [REDACTED USER] #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 Network @power4patients
@michelerhee @patientchat TRUTH! #patientchat
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…
Amanda G @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
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
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…
Lydia L. Seiders @lseiders3
@bbhomebody @Cpnervecenter [REDACTED USER] 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
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 Network @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
@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 Network @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
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…
@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
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
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 @InspireIsHealth
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
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…
Lydia L. Seiders @lseiders3
RT @GraceCordovano: Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #p
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 G @LAlupusLady
A1 The most inclusive conference is https://t.co/VURfG0vZqc because [REDACTED USER] and @techguy recognize the value of #PatientsIncluded and I was the Opening Keynote speaker last year. #patientchat
@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
@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
Lydia L. Seiders @lseiders3
@LAlupusLady Hi Amanda! #patientchat
Barby Ingle Official @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
Lydia L. Seiders @lseiders3
RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and [REDACTED USER], 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…
Patient Empowerment Network @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
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 & [REDACTED USER], attend! #WTFix #Pa
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
Heather McCullen @H_SalemOaks
I’m always out getting lunch during #patientchat
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
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
[REDACTED USER] @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 @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…
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…
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…
Patient Empowerment Network @power4patients
@abrewi3010 Thanks! Will do :) #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up... https://t.co/LxR68rpQTI #patientchat #patientchat
@K_SalemOaks
[REDACTED USER] @HealthSparq @GraceCordovano @patientexpsym @lbdeck [REDACTED USER] They may be constrained by their internal compliance rules. The organizers need to find a way to make such sponsorship to a pool. #patientchat
Carly Flumer (she/her) @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
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 Network @power4patients
RT @GraceCordovano: @G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follo…
Patient Empowerment Network @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
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
[REDACTED USER] @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 @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…
Lydia L. Seiders @lseiders3
RT @power4patients: @abrewi3010 Thanks! Will do :) #patientchat
Lydia L. Seiders @lseiders3
RT @JamieRoger8: [REDACTED USER] @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: [REDACTED USER] @HealthSparq @GraceCordovano @patientexpsym @lbdeck [REDACTED USER] They may be constrained by their internal co…
Amanda G @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
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
Amanda G @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…
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…
Carly Flumer (she/her) @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 @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
[REDACTED USER] @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
Patient Empowerment Network @power4patients
RT @LAlupusLady: A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient commu…
@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
Enlightening Results 💡 @GraceCordovano
@HealthSparq [REDACTED USER] @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 Official @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…
HealthSparq @HealthSparq
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
@abrewi3010 Just #RTing away! 😁 #patientchat We ARE #StrongerTogether and #EvenLouder
ISurvivor Lisa Deck @lbdeck
RT @GraceCordovano: @HealthSparq [REDACTED USER] @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offeri…
Lydia L. Seiders @lseiders3
RT @wareFLO: @LAlupusLady I too love healthcare conferences! (such as #HITMC #HITMC19 ☺) Every other week, via shared #VirtualReality, we h…
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
[REDACTED USER] @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…
@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 G @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 [REDACTED USER] @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 @LAlupusLady: A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient commu…
@K_SalemOaks
@GlobalGenes BTW - I see what you did there with "buckets" #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
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
Barby Ingle Official @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
[REDACTED USER] @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
[REDACTED USER] @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
@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…
Lydia L. Seiders @lseiders3
RT @HealthSparq: [REDACTED USER] @G17Esiason @GlobalGenes YES! Livestream is so important for including patients and caregivers that can't otherw…
Amanda G @LAlupusLady
RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat
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
Inspire @InspireIsHealth
@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
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
@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
Heather 🇺🇸 @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
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
HealthSparq @HealthSparq
RT @michelerhee: @HealthSparq @patientchat I would like every speaker to require meeting organizers to ensure patient accommodations. If ev…
@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…
Heather 🇺🇸 @ZHeatherChamp
@patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat
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
Heather 🇺🇸 @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
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 (she/her) @carlyflumer
@josefinebjork Love this!! Yes!! Providing different perspectives on experiences had only enhances #healthcare, not diminishes it! #patientchat
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 Network @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…
ISurvivor Lisa Deck @lbdeck
@HealthSparq Thank you. Me too! #patientchat
@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
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 Network @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 & [REDACTED USER] to dis…
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 (she/her) @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 @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
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
Amanda G @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…
Patient Empowerment Network @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 G @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 @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 Network @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
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 G @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
Patient Empowerment Network @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 Official @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 Network @power4patients
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 @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 [REDACTED USER] 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…
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…
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
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 @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 @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 (she/her) @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 @power4patients: @michelerhee @patientchat TRUTH! #patientchat
Inspire @InspireIsHealth
@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
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
[REDACTED USER] @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 @abrewi3010: As @GraceCordovano said, less swag and more access! #PatientChat https://t.co/S3FKxnoECE
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…
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…
Heather 🇺🇸 @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
Jamie Roger @JamieRoger8
@lbdeck [REDACTED USER] @SalemOaks Hi lisa, how are you? #patientchat
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
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 @K_SalemOaks: T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value…
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…
@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 [REDACTED USER] @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 [REDACTED USER] 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…
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 [REDACTED USER] @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
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 G @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
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.
ISurvivor Lisa Deck @lbdeck
RT @JamieRoger8: @lbdeck [REDACTED USER] @SalemOaks Hi lisa, how are you? #patientchat
Amanda G @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
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
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
Enlightening Results 💡 @GraceCordovano
RT @nickdawson: @G17Esiason @CF_Foundation #PatientChat you’re pointing out a fundamentally abelest thing about most meetings - they happen…
Patient Chat @patientchat
Topic 5 (T5:) coming up... https://t.co/LxR68rpQTI #patientchat
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, MSHL @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
Lydia L. Seiders @lseiders3
RT @patientchat: Topic 4 (T4:) coming up... https://t.co/LxR68rpQTI #patientchat
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
Heather 🇺🇸 @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 [REDACTED USER] @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 Maués @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”
@davidcnorrismd
@michelerhee @patientchat “scripted monologue by the wrong speaker” 🔥🔥🔥🔥 #patientchat
@K_SalemOaks
T5: Lobby for "bring a patient" pricing. (Add $50 and you can bring that friend) #patientchat #askpatients #PatExpSym
Gunnar Esiason @G17Esiason
RT @HealthSparq: @G17Esiason [REDACTED USER] @GlobalGenes Yes! It needs to be a conversion with the digital audience, not just a show for them. #…
Jamie Roger @JamieRoger8
[REDACTED USER] 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?
Julia Maués @itsnot_pink
[REDACTED USER] @SABCSSanAntonio @ASCO Yes! And scholarships!
Enlightening Results 💡 @GraceCordovano
[REDACTED USER] @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
Carly Flumer (she/her) @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
@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
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
Patient Empowerment Network @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: [REDACTED USER] @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. R…
Heather 🇺🇸 @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
@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
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
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
[REDACTED USER] @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
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
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
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
Lydia L. Seiders @lseiders3
RT @G17Esiason: @HealthSparq [REDACTED USER] @GlobalGenes Especially when the folks live streaming have the ability to communicate with presenter…
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…
Barby Ingle Official @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: [REDACTED USER] @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
@K_SalemOaks
T5: Put out press releases for patients who are attending. Congratulations on the scholarship sponsored by … #patientchat #askpatients [REDACTED USER] Genes #PatExpSym
Amanda G @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
Heather 🇺🇸 @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
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 Network @power4patients
RT @michelerhee: [REDACTED USER] @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…
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: [REDACTED USER] @SalemOaks hahaha, so true, but it's important in finding the balance that works for you TODAY... not yest…
Amanda G @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 @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: [REDACTED USER] @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. R…
Lydia L. Seiders @lseiders3
RT @abrewi3010: A4 patients turn conferences from book reports to a human centered experience. #patientchat
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…
Heather 🇺🇸 @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
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 Network @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…
Inspire @InspireIsHealth
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 @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
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…
@davidcnorrismd
@carlyflumer @K_SalemOaks @GlobalGenes @1111Lino Agree, and not just misconceptions on matters of #fact, but also #ethics. A lot of what’s said about clinical trial ethics wouldn’t fly with patients in the audience. #patientchat
Marni Cartelli @Purrfectly_Rare
T5. #patientchat Conversations are a start but as #advocates we need 2 ask b4 accepting speaking engagements if pt scholarships are being given out. If they aren’t we need to come together & take a stand. show industry U don’t get 2 say #patientncluded if they aren’t
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T5: Put out press releases for patients who are attending. Congratulations on the scholarship sponsored by … #patientch
ISurvivor Lisa Deck @lbdeck
@RarePOV @michelerhee @lukebrosen What a fantastic #patientsincluded stance. I concur that it would be the norm if this movement gained momentum. #patientchat
Lydia L. Seiders @lseiders3
RT @DoubleTrojan: THIS! Thank you @michelerhee . We in the #cysticfibrosis committee are so happy that speakers are appalled that the @CF_F
Lydia L. Seiders @lseiders3
RT @michelerhee: @Purrfectly_Rare @patientchat Lol...yeah...and it ends up being an echo chamber of all the same, self-congratulatory “pati…
Lydia L. Seiders @lseiders3
RT @AbbyHershberger: @patientchat T3:... feel that doctors and others don’t take us seriously or really listen so I think that’s unfortunat…
Lydia L. Seiders @lseiders3
RT @BarbyIngle: T5. Where there is no/low PT attendance ask 4 it. For the #iPainSummit2019, we R specifically raising sponsor funds 2 cover…
Inspire @InspireIsHealth
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 @HealthSparq: @josefinebjork Great consideration of additional barriers to attendance! #WTFix #patientchat
Alan Brewington @abrewi3010
A5 #Medx started in 2012 which means there are hundreds of trained and experienced advocates out here. Ask them for help. We are happy to train/help newbies. #patientchat
Heather 🇺🇸 @ZHeatherChamp
[REDACTED USER] MAJOR KUDOS on the PHD! #PatientChat
Abby Hershberger @AbbyHershberger
@patientchat Spread the word more and make events closer to home maybe. Also I think sharing a schedule and a duration of the conferences like times. Maybe you already do and I am unaware. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat
Lydia L. Seiders @lseiders3
RT @DoubleTrojan: @patientchat T2: this is something #cysticfibrosis patients r looking 2 target because the @CF_Foundation has told patien…
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: T5: Being a small company, budgets are tight. However, being able to join forces with other small shops would help us chi…
Jamie Roger @JamieRoger8
RT @G17Esiason: Patient inclusion explicitly communicates patient NEEDS rather than organizational guesses. A criticism of #PatientsInclude
Lydia L. Seiders @lseiders3
RT @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…
HealthSparq @HealthSparq
[REDACTED USER] @AbbyHershberger @patientchat Yes! For #WTFix we live streamed with an in-stream chat and really leveraged Twitter, our digital host @WheezyNurse & our hashtag to bring the discussion into the room, ask digital audience questions & deliver digital-audience content. It can be done! #patientchat
Lydia L. Seiders @lseiders3
RT @power4patients: @ZHeatherChamp @patientchat It's 1 of those situations that when you say it out loud, as you just did, it's so painfull…
ISurvivor Lisa Deck @lbdeck
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ C…
Lydia L. Seiders @lseiders3
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…
Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO
Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose ([REDACTED USER]) and Lisa Deck (@lbdeck)! #WTFix #PatientChat https://t.co/SqWIxpvpMF
Michele Rhee @michelerhee
@patientchat T5: Whenever I am asked to speak at an event, I ask if they are #PatientsIncluded. If not, I educate & will not participate unless the organizer makes changes. If everyone did this, conferences would have to change. #PatientChat
ISurvivor Lisa Deck @lbdeck
@abrewi3010 Thank you for that offer! I’d love to take you up on it. #patientchat
Alan Brewington @abrewi3010
RT @nickdawson: @patientchat Candidly, im more excited to see patient created and led events in which industry peeps have to clamor to get…
@K_SalemOaks
Good point. However, take a look at what the planners are shooting at. Being on the "vendor" side, I know the organizers aim to please those who pay the bills. A breakthrough would be aiming to please the patients. #patientchat
Carly Flumer (she/her) @carlyflumer
@patientchat CT: Patients need to be accepted, empowered, and educated about conferences, especially ones where they feel they have a voice and can make an impact. #patientchat
Lydia L. Seiders @lseiders3
RT @Purrfectly_Rare: T5. #patientchat Conversations are a start but as #advocates we need 2 ask b4 accepting speaking engagements if pt sch…
ISurvivor Lisa Deck @lbdeck
RT @JamieRoger8: @salemoaks strives to empower patients to find that voice through knowledge of the research and development process and wh…
ISurvivor Lisa Deck @lbdeck
RT @wareFLO: Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose ([REDACTED USER]) and Lisa Deck (@lbdeck)! #WTFix #Pat
Jamie Roger @JamieRoger8
Woah WOah Woah... how is it already closing thoughts time? #patientchat
Inspire @InspireIsHealth
@patientchat T5 It takes time & persistence, but earlier involvement in helping share the planning of conferences can result in more & more impactful involvement by patients. Making friends with conference organizers (staff & committees) can make a difference. #patientchat
Alan Brewington @abrewi3010
A5 gone are the days of us vs them I think. There are enough success stories were patients were included to move towards a everyone benefits model. #patientchat
@K_SalemOaks
CT: There were a lot of good ideas today. How might we organize them into something that can gain real traction? #patientchat #PatExpSym https://t.co/2Czssud8Jv
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime
HealthSparq @HealthSparq
@RarePOV Yes! There are so many simple ways to include patients & expand conversations - Twitter & hashtags are hugely powerful! #WTFix #patientchat
ISurvivor Lisa Deck @lbdeck
RT @teaminspire: @patientchat T5 It takes time & persistence, but earlier involvement in helping share the planning of conferences can resu…
Alan Brewington @abrewi3010
@lbdeck Feel free to reach out to me whenever. I would be happy to talk with you. #medx #patientchat
Amanda G @LAlupusLady
CT I hope that healthcare community and conference organizers start to recognize that those conferences without patients will be less impactful and that "patients included" matters. Improve the quality of content by having the perspective of patients shared. #patientchat
Patient Chat @patientchat
Thanks so much to our guests @HealthSparq, @lbdeck, and [REDACTED USER] for sharing your insights on today’s #patientchat
Inspire @InspireIsHealth
@patientchat "shape" not "share" #autocorrectfail
Patient Empowerment Network @power4patients
RT @teaminspire: @patientchat T5 It takes time & persistence, but earlier involvement in helping share the planning of conferences can resu…
Nick Dawson @nickdawson
[REDACTED USER] @AbbyHershberger @patientchat I’ve some things in smaller settings that I’d describe as “more than chat” (but not transformational) where remote participants were able to contribute and interact in real time. That was cool! #PatientChat
ISurvivor Lisa Deck @lbdeck
Such a great subject and excellent engagement for the #patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
HealthSparq @HealthSparq
Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & [REDACTED USER] for helping facilitate such an amazing chat! So excited to see even more push for change in #healthcare events! #WTFix #PatientChat
ISurvivor Lisa Deck @lbdeck
RT @HealthSparq: Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & [REDACTED USER] for helping facil…
Patient Empowerment Network @power4patients
RT @michelerhee: @patientchat T5: Whenever I am asked to speak at an event, I ask if they are #PatientsIncluded. If not, I educate & will n…
Alan Brewington @abrewi3010
CT chronic communication benefits all when practiced under the mantra of everyone included #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, May 3rd https://t.co/6dR7ctK40Q Hope to see you there!
Patient Empowerment Network @power4patients
RT @LAlupusLady: CT I hope that healthcare community and conference organizers start to recognize that those conferences without patients w…
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients, care partners, and advocates with the hashtag #patientchat
Lydia L. Seiders @lseiders3
#Thread My closing thoughts #patientchat: Advocacy orgs: help train patients & caregivers to be educated and effective advocates. Conference folks: include your patient population in all aspects possible. Keep in mind: live streaming eliminates networking and collaborations.
Lydia L. Seiders @lseiders3
@RareAction unites and empowers through training, tools, and education to enable us to be effective advocates. We are nationwide and actively recruiting in all states. #patientchat
Lydia L. Seiders @lseiders3
Join our patient and caregiver planned #twitterchat on #RareSupport covering #mentalhealth and what's lacking from our perspective. We ARE #StrongerTogether and #EvenLouder #patientchat #letsdothis
DoubleTrojan @DoubleTrojan
[REDACTED USER] @patientchat YES YES YES! #chronicillness patients like those with #cysticfibrosis spend 99.9% of their lives caring for themselves and 0.1% of their lives in front of a doc. WE need the info to make decisions and care for ourselves as well #patientchat #patientsincluded @CF_Foundation
ISurvivor Lisa Deck @lbdeck
Such great ideas and brainstorming on #patientengagement in #health conferences. Thank you @patientchat and @HealthSparq for having [REDACTED USER] and I here for this #patientchat. #WTFix
Lydia L. Seiders @lseiders3
RT @teaminspire: @patientchat T5 It takes time & persistence, but earlier involvement in helping share the planning of conferences can resu…
Lydia L. Seiders @lseiders3
RT @michelerhee: @patientchat T5: Whenever I am asked to speak at an event, I ask if they are #PatientsIncluded. If not, I educate & will n…
Lydia L. Seiders @lseiders3
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients, care partners, and advocates w…
Lydia L. Seiders @lseiders3
RT @lbdeck: Such a great subject and excellent engagement for the #patientchat https://t.co/bIwPqzNdXj
ISurvivor Lisa Deck @lbdeck
RT @lseiders3: #Thread My closing thoughts #patientchat: Advocacy orgs: help train patients & caregivers to be educated and effective advo…
Lydia L. Seiders @lseiders3
RT @HealthSparq: Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & [REDACTED USER] for helping facil…
ISurvivor Lisa Deck @lbdeck
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients, care partners, and advocates w…
Lydia L. Seiders @lseiders3
RT @LAlupusLady: CT I hope that healthcare community and conference organizers start to recognize that those conferences without patients w…
Lydia L. Seiders @lseiders3
RT @patientchat: Thanks so much to our guests @HealthSparq, @lbdeck, and [REDACTED USER] for sharing your insights on today’s #patientchat
Lydia L. Seiders @lseiders3
RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Lydia L. Seiders @lseiders3
RT @G17Esiason: Patient inclusion explicitly communicates patient NEEDS rather than organizational guesses. A criticism of #PatientsInclude
Lydia L. Seiders @lseiders3
RT @abrewi3010: A5 gone are the days of us vs them I think. There are enough success stories were patients were included to move towards a…
Lydia L. Seiders @lseiders3
RT @carlyflumer: @patientchat CT: Patients need to be accepted, empowered, and educated about conferences, especially ones where they feel…
Lydia L. Seiders @lseiders3
RT @lbdeck: @abrewi3010 Thank you for that offer! I’d love to take you up on it. #patientchat
Lydia L. Seiders @lseiders3
RT @JamieRoger8: @salemoaks strives to empower patients to find that voice through knowledge of the research and development process and wh…
Lydia L. Seiders @lseiders3
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime
Lydia L. Seiders @lseiders3
RT @wareFLO: Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose ([REDACTED USER]) and Lisa Deck (@lbdeck)! #WTFix #Pat
Lydia L. Seiders @lseiders3
RT @MaryOCMack: T1: I’ve attended patient conferences that—truthfully—had the agenda of industry, but was veiled as a patient conference.…
@K_SalemOaks
#patientchat BTW we are sponsoring #PatSymExp Hope to see you there if you can come. #pinksocks Visit us! https://t.co/C2HnsUqf65
Lydia L. Seiders @lseiders3
RT @lbdeck: Such great ideas and brainstorming on #patientengagement in #health conferences. Thank you @patientchat and @HealthSparq for ha…
Lydia L. Seiders @lseiders3
RT @nickdawson: [REDACTED USER] @AbbyHershberger @patientchat I’ve some things in smaller settings that I’d describe as “more than chat” (but not…
Lydia L. Seiders @lseiders3
RT @abrewi3010: @lbdeck Feel free to reach out to me whenever. I would be happy to talk with you. #medx #patientchat
Lydia L. Seiders @lseiders3
RT @JamieRoger8: Woah WOah Woah... how is it already closing thoughts time? #patientchat
Lydia L. Seiders @lseiders3
RT @K_SalemOaks: Good point. However, take a look at what the planners are shooting at. Being on the "vendor" side, I know the organizers…
DoubleTrojan @DoubleTrojan
Coming to a @CF_Foundation conference near you . We will no longer stand for #cysticfibrosis patient exclusion and #Discrimination . #patientsincluded #patientchat #NothingAboutUsWithoutUs
Maggie Rogers @magthenomad
T1. More untraditional, but I attended a weeklong camp with sales leadership from @genentech. I was the YA cancer mascot. I was warmly welcomed and they listened to me speak about lateeffects of cancer drugs without defensiveness #patientchat (❤️@FirstDescents)
Marni Cartelli @Purrfectly_Rare
I’m stealing @RarePOV CT #PatientChat bc it hits the nail on the head and I’m hangry Happy Friday everyone & happy holiday(s) to everyone who celebrate this weekend and next week!
DoubleTrojan @DoubleTrojan
I couldn't agree with this more. #abelism is alive and well at the @CF_Foundation . But it will change. #NACFC #NothingAboutUsWithoutUs #patientsincluded #patientschat
Maggie Rogers @magthenomad
RT @michelerhee: @patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & repres…
@francis_fullam
Important point....we offered free attendance at the What Patients Say conference last fall to patient advocates and will continue to make special arrangements for patients at future Health Systems Management patient experience conferences @RushCaPS @RushUHealthSci
Marni Cartelli @Purrfectly_Rare
RT @BarbyIngle: T5. Where there is no/low PT attendance ask 4 it. For the #iPainSummit2019, we R specifically raising sponsor funds 2 cover…
@
@abrewi3010 Yes! Like #medx scholar participants me and Alan! Ask us anything. 😉 #PatientChat
@davidcnorrismd
CT: #patientchat Still catching up on a backlog of 10 minutes of tweets from this chat, but want to share I feel reinvigorated by the energy in the room around this issue!
@davidcnorrismd
RT @michelerhee: @patientchat T5: Whenever I am asked to speak at an event, I ask if they are #PatientsIncluded. If not, I educate & will n…
Maggie Rogers @magthenomad
👏🏻🙌🏻 #patientchat
Lydia L. Seiders @lseiders3
@RarePOV Reworded to: face to face networking and collaborations. Thank you for your perspective! #patientchat
DoubleTrojan @DoubleTrojan
@patientchat We in the #cysticfibrosis community r desperate 2 know what other resources we can leverage 2 change the paternalism about conference attendance with the @CF_Foundation . We r excluded & discriminated against. Would love 2 hear from others w\ tips. #patientchat #patientsincluded
Enlightening Results 💡 @GraceCordovano
RT @magthenomad: 👏🏻🙌🏻 #patientchat https://t.co/bREGZxBHSG
Lydia L. Seiders @lseiders3
Thanks for those who participated and provided much needed dialogue to the #patientchat! Apologies if I missed a #RT anywhere. I encourage those who haven't, to retweet so all thoughts given can be shared widely.
#patientchat content from Twitter.