#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
Profile | Tweet |
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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. |
