#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
 | ISurvivor Lisa Deck @lbdeck RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://t.co/v6zFYwokUh https://t.co/q4wi7o5DcA |
 | Lisa Davis Budzinski @lisadbudzinski RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://t.co/v6zFYwokUh https://t.co/q4wi7o5DcA |
 | HealthSparq @HealthSparq RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| 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/ others on the topic. #patientchat |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfizer I am committed to helping patients+ shape the future of medicine. #patientchat |
| Patient Chat @patientchat Excited to have guest @HealthSparq here, who is dedicated to empowering people to make smarter health care choices, co-hosting today’s #patientchat |
| Patient Chat @patientchat Joining along is Lisa @lbdeck and Emily @mcintose, the winners of patient scholarships to attend The Patient Experience Symposium #patientchat |
| HealthSparq @HealthSparq Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0 |
 | Emily McIntosh @mcintose Here we go! Join in the chat - and be sure to use the hashtag (#patientchat) so we can see your responses! |
| ISurvivor Lisa Deck @lbdeck Hi! I’m Lisa from Massachusetts. I’m a four time stroke survivor that was eventually diagnosed with #moyamoya disease. Two #brainsurgeries restored my blood flow. For two decades, I’ve advocated and spoke up for #stroke, #heartdisease and #raredisease |
| HealthSparq @HealthSparq @K_SalemOaks @SalemOaks @pfizer Hi Kevin! Glad you could join us! Will you be at @patientexpsym in a couple weeks?! #WTFix #patientchat |
 | Amanda G @LAlupusLady RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0 |
| Emily McIntosh @mcintose .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited to be going to the Patient Experience Symposium soon thanks to @HealthSparq #WTFix #patientchat |
| Patient Chat @patientchat You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @patientchat @lbdeck @mcintose Yay!! That’s very exciting!! 👏👏👏 #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
 | Alan Brewington @abrewi3010 Alan here from Boise Idaho. I’m a month out from neck surgery, has #rheumatoidartritis #chronicpain #PTSD and I’m ready for lunch! #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @lisadbudzinski: @patientchat @lbdeck @mcintose Yay!! That’s very exciting!! 👏👏👏 #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Carly Flumer (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 @mcintose Congrats! That's wonderful news! #PatientChat |
| Kevin Freiert @K_SalemOaks @patientchat @power4patients Hi Kara. #patientchat Thanks for hosting. |
| Amanda G @LAlupusLady Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat |
 | Global Genes @GlobalGenes RT @K_SalemOaks: @WestchesterBio #PatExpSym #patients2019 @GlobalGenes @wegohealth @CureFA_org @robertweker Come have a great chat with us today! #patientchat |
 | David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd Hello, #patientchat! David here, precision-medicine methodologist w/ special interest in early-phase cancer trial methodology & ethics. |
| Lisa Davis Budzinski @lisadbudzinski Hi everyone! Lisa here from Florida & @Cpnervecenter with my fantabulous colleague @bbhomebody ✨ #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| HealthSparq @HealthSparq RT @mcintose: .@patientchat: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited to be going to the Patient Experience Symposium soon thanks to @HealthSparq #WTFix #patientchat |
| Patient Chat @patientchat You can 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 & @mcintose to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0 |
| 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 needs and history #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: You can find out more about @HealthSparq here: You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat |
| Enlightening Results 💡 @GraceCordovano Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #patientchat |
 | Lydia L. Seiders @lseiders3 RT @lbdeck: Hi! I’m Lisa from Massachusetts. I’m a four time stroke survivor that was eventually diagnosed with #moyamoya disease. Two #brainsurgeries restored my blood flow. For two decades, I’ve advocated and spoke up for #stroke, #heartdisease and #raredisease |
| 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 interest to empowered patients |
 | Inspire @InspireIsHealth RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://t.co/v6zFYwokUh https://t.co/q4wi7o5DcA |
| HealthSparq @HealthSparq @GraceCordovano @patientchat @lbdeck @mcintose YAY! Hi Grace! Congrats on your award ❤️ #WTFix #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| 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: You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat |
| Enlightening Results 💡 @GraceCordovano @lisadbudzinski @Cpnervecenter @bbhomebody Great to see you ladies! #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @carlyflumer Hi fellow thyroid cancer survivor ✨ #PatientChat |
| Lydia L. Seiders @lseiders3 RT @patientchat: Joining along is Lisa @lbdeck and Emily @mcintose, the winners of patient scholarships to attend The Patient Experience Symposium #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-hosting today’s #patientchat |
| HealthSparq @HealthSparq @lisadbudzinski @patientchat @lbdeck @mcintose Hi Lisa!!! So glad you're here!!!! #WTFix #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Inspire @InspireIsHealth Hello to #patientchat, John Novack from Inspire checking in. |
| 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 #brainsurgeries restored my blood flow. For 2decades, I’ve advocated and spoke up for #stroke, #heartdisease & #raredisease @HealthSparq @patientchat |
| 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 #brainsurgeries restored my blood flow. For 2decades, I’ve advocated and spoke up for #stroke, #heartdisease & #raredisease @HealthSparq @patientchat |
| Amanda G @LAlupusLady RT @patientchat: Today's #patientchat topic is Patient Access: 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: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov |
| Patient Chat @patientchat RT @mcintose: .@patientchat: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited to be going to the Patient Experience Symposium soon thanks to @HealthSparq #WTFix #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Patient Access: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov |
| HealthSparq @HealthSparq @teaminspire Hi John! #patientchat |
| 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 #brainsurgeries restored my blood flow. For 2decades, I’ve advocated and spoke up for #stroke, #heartdisease & #raredisease @HealthSparq @patientchat |
 | Barby Ingle Official @BarbyIngle Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best selling author, cheerleader of hope, and dancer for life, coming to the chat from AZ today! |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @GraceCordovano @Cpnervecenter @bbhomebody You as well stranger! 😉 #PatientChat |
| ISurvivor Lisa Deck @lbdeck RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best selling author, cheerleader of hope, and dancer for life, coming to the chat from AZ today! |
| Enlightening Results 💡 @GraceCordovano @carlyflumer Hi Carly! That's wonderful! Best wishes to you #PatientChat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @HealthSparq @patientchat @lbdeck @mcintose Hi Anna!!! It’s still Anna right?! 😄 #patientchat |
| Enlightening Results 💡 @GraceCordovano @BarbyIngle @patientchat @lbdeck @HealthSparq @mcintose Hi Barby! Great to see you #PatientChat |
| Patient Chat @patientchat T1: As a patient, have you ever attended an industry conference to represent the patient voice? Did you feel welcome to attend? Was there support? #patientchat https://t.co/hbZ2hkow0Q |
| Alan Brewington @abrewi3010 @teaminspire Hi! #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @bbhomebody @Cpnervecenter Hey Pard!!! #patientchat |
| Enlightening Results 💡 @GraceCordovano @josefinebjork @aberdeenuni How wonderful that you could join us! Welcome! #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T1: 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 |
| Lisa Davis Budzinski @lisadbudzinski @teaminspire Hi John!! #PatientChat |
 | Marni Cartelli @Purrfectly_Rare #patientchat Hi Marni from NY I’m an advocate and pt with #CRPS. Happy to be here |
| Enlightening Results 💡 @GraceCordovano @michelerhee @patientchat So nice to see you Michele! Happy Friday! #PatientChat |
| Emily McIntosh @mcintose RT @patientchat: T1: 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 |
| HealthSparq @HealthSparq We’re excited to be a sponsor of the upcoming @patientexpsym to help two patients, @lbdeck & @mcintose, attend! #WTFix #PatientChat |
| HealthSparq @HealthSparq RT @patientchat: T1: 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 |
 | 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 I'm Lydia. #MD State Ambassador (volunteer) for @RareAction with @RareDiseases; #advisor for @RareDiseaseGh & @dazzle4rare But here today on my own to help #RT. #patientchat |
| Emily McIntosh @mcintose T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learned about the current and future healthcare trajectory in Ontario. I was fortunate that CTO covered registration and travel expenses. #patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat Hi, Michele from Boston. Diagnosed with thyroid cancer at 20 & a #RareDisease at 21. #PatientAdvocate professionally & personally. So excited for this topic! #PatientChat |
| 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: |
| 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 |
| Lisa Davis Budzinski @lisadbudzinski @RarePOV @lbdeck Hi Stephanie! ✨ #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 @mcintose Barby! So glad you could join us - so great to see you! #PatientChat #WTFix |
 | Salem Oaks @SalemOaks RT @K_SalemOaks: Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfizer I am committed to helping patients+ shape the future of medicine. #patientchat |
| Michele Rhee @michelerhee @patientchat T1: I’ve attended industry meetings as an industry representative...& then spoken from my patient perspective bc there weren’t patients (or enough patients) represented. #PatientChat |
| Lydia L. Seiders @lseiders3 @michelerhee @patientchat Hi Michele! #patientchat |
| HealthSparq @HealthSparq @lisadbudzinski @patientchat @lbdeck @mcintose It sure is!!! It's been too long! #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: T1: 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 |
| Lydia L. Seiders @lseiders3 RT @patientchat: Time to start our topics. Here comes T1: Time to start our topics. Here comes T1: #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @HealthSparq @patientchat @lbdeck @mcintose Wayyyyy too long! 😘 #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: .@patientchat: .@patientchat: I’m Emily – brain cancer survivor and patient advocate. I’m in the final stages of my PhD and am very excited to be going to the Patient Experience Symposium soon thanks to @HealthSparq #WTFix #patientchat |
| HealthSparq @HealthSparq RT @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 |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @abrewi3010: A1 My first conference as a patient advocate was #Medx. Patients were the real center of the conference, not just ceremonial center. #patientchat |
| Lydia L. Seiders @lseiders3 @mcintose @patientchat @HealthSparq Hi Emily! #patientchat |
| HealthSparq @HealthSparq @bbhomebody @Purrfectly_Rare Hi Becky!!! Thank you for joining, great to see you! #patientchat |
| 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: @patientchat T1: I have never attended a conference, but I would LOVE to! I have written stories about my patient journey that have been published, but would love to attend a @ThyCaInc conference! #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @lbdeck @RarePOV #patientchat https://t.co/tBnZpozkZc |
| 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 |
| HealthSparq @HealthSparq RT @mcintose: T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learned about the current and future healthcare trajectory in Ontario. I was fortunate that CTO covered registration and travel expenses. #patientchat |
| ISurvivor Lisa Deck @lbdeck A1: I’ve been a patient for 20 years and an active advocate but I haven’t had the chance to represent the #patientvoice at an industry conference yet. #patientchat |
| Patient Empowerment Network @power4patients RT @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 |
| HealthSparq @HealthSparq @Purrfectly_Rare Hi Marni! #patientchat |
| Lydia L. Seiders @lseiders3 @BarbyIngle @patientchat @lbdeck @HealthSparq @mcintose Hi @BarbyIngle! #patientchat |
| Enlightening Results 💡 @GraceCordovano T1) I have been invited to speak at industry events. Some are more welcoming than others. Most cover event registration. Some cover some travel & hotel expenses. There are so many factors to consider when attending. #PatientChat |
| Emily McIntosh @mcintose @carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some have patient scholarships! I'd encourage you to apply - I'm very lucky to have just received one of these from @HealthSparq. #patientchat |
| 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 |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @LAlupusLady @HIMSS That’s very interesting, Amanda. Would you elaborate? #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @HealthSparq @patientchat @lbdeck @mcintose Wayyyyy too long! 😘 #patientchat |
| Lydia L. Seiders @lseiders3 RT @LAlupusLady: A1. YES! As a patient leader/advocate, it is important for the community serving and designing the future health technology engage and meet patients to find out our needs. #patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat T1: @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 |
| 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: @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 |
| Lydia L. Seiders @lseiders3 RT @mcintose: @carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some have patient scholarships! I'd encourage you to apply - I'm very lucky to have just received one of these from @HealthSparq. #patientchat |
| 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 more about us, or to learn how to share your story, visit: https://t.co/zWURc7nYWP #PatientChat https://t.co/VYPzV9OW36 |
| Kevin Freiert @K_SalemOaks T1: I haven't. Always thought I was too pharma. But you know… I should. #patientchat #PatExpSym #WTFix #askpatients |
| ISurvivor Lisa Deck @lbdeck I’m excited to be one of those patients thanks to @HealthSparq #patientchat |
| Carly Flumer (she/her) @carlyflumer @mcintose @patientchat @ThyCaInc @HealthSparq I did not! I’ll definitely look into it! Thank you! #patientchat |
 | Alice Lee @alee7095 RT @BarbyIngle: T1: 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 |
| Lydia L. Seiders @lseiders3 RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq, @lbdeck and @mcintose here: https://t.co/v6zFYwokUh https://t.co/q4wi7o5DcA |
| Lydia L. Seiders @lseiders3 RT @patientchat: Here’s some handy articles on participating in tweet chats: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @mcintose: @carlyflumer @patientchat @ThyCaInc Hi Carly, did you know that there are opportunities for patients to attend them? Some have patient scholarships! I'd encourage you to apply - I'm very lucky to have just received one of these from @HealthSparq. #patientchat |
| 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/ others on the topic. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T1: 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 |
| Patient Empowerment Network @power4patients @GraceCordovano @ASCO @ASH_hematology True #patientchat |
 | Rachel Martens ♿️ (she/her) @RaeofSunshine79 RT @patientchat: Today's #patientchat topic is Patient Access: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov |
| Emily McIntosh @mcintose @LAlupusLady @HIMSS Hi Amanda. I'mso sorry that you've had that experience. I think and hope that things are beginning to change! Has this discouraged you or will you continue to attend conferences? #patientchat |
| Enlightening Results 💡 @GraceCordovano @mcintose @clinicaltrialON SO great to hear you had an awesome experience! #PatientChat |
| HealthSparq @HealthSparq @GraceCordovano So many factors! We still love this video you did for #WTFix last year, @GraceCordovano - sums it up perfectly: https://t.co/PjXjynF03q #patientchat |
| Patient Empowerment Network @power4patients @K_SalemOaks You definitely should #patientchat |
| Kevin Freiert @K_SalemOaks @michelerhee @patientchat Yes - I want to hear more. ??There weren't enough patients??? #patientchat |
| Lydia L. Seiders @lseiders3 RT @carlyflumer: My name is Carly and I’m a recent thyroid cancer survivor looking to start a career path in patient advocacy! #patientchat |
| Enlightening Results 💡 @GraceCordovano @HealthSparq @patientexpsym @lbdeck @mcintose This is so awesome! Thank you for doing that! Would love to hear if you have tips for other companies who may want to sponsor patients to attend events/conferences? #PatientChat |
| Lydia L. Seiders @lseiders3 @carlyflumer Hi Carly! #patientchat |
 | Chuck Webster MD, MS AI, MS 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 |
| Lydia L. Seiders @lseiders3 RT @mcintose: T1. I recently attended the @clinicaltrialON conference as a patient. I felt very welcome, made great connections, and learned about the current and future healthcare trajectory in Ontario. I was fortunate that CTO covered registration and travel expenses. #patientchat |
| 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 |
| Lydia L. Seiders @lseiders3 RT @mcintose: Here we go! Join in the chat - and be sure to use the hashtag (#patientchat) so we can see your responses! |
| ISurvivor Lisa Deck @lbdeck That’s a great collaboration for #PatientsIncluded |
| Lydia L. Seiders @lseiders3 RT @carlyflumer: @mcintose @patientchat @ThyCaInc @HealthSparq I did not! I’ll definitely look into it! Thank you! #patientchat |
| Alan Brewington @abrewi3010 A1 at the time I felt incredibly supported by #medx. They even had a quiet room for patients that needed a break. #patientchat |
| Michele Rhee @michelerhee @patientchat T1: A lot of folks go into industry bc they’re patients (like me), but the patient should be invited & represented individually. It’s unacceptable when the topic is patient-related, but there aren’t patients speaking. #PatientChat |
 | Ken Taylor, RPIC @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 |
| Enlightening Results 💡 @GraceCordovano RT @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 |
| Jamie Roger @JamieRoger8 @bbhomebody @SalemOaks Happy Friday Becky! I hope you had a great week! #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... https://t.co/LxR68rpQTI #patientchat |
| Kevin Freiert @K_SalemOaks RT @michelerhee: @patientchat T1: @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 |
 | 𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 😷🇨🇦❤️ 🥀 @NatriceR RT @patientchat: Today's #patientchat topic is Patient Access: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov |
| Marni Cartelli @Purrfectly_Rare T1. #patientchat I just attended what I would call my 1st true industry geared conference as a pt advocate & there is a def. difference I did feel welcome as attendee but didn’t feel included/represented in sessions. They talked about pt inclusion but it sounded like tag lines |
| Patient Chat @patientchat T2: As a non-patient conference attendee, do you consider the attendance of patients as you select conferences you’re attending? Does #PatientsIncluded, patient scholarships, etc. cross your mind? #patientchat https://t.co/g4n1OX4Gn8 |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat T1: @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 |
| Lydia L. Seiders @lseiders3 RT @Purrfectly_Rare: #patientchat Hi Marni from NY I’m an advocate and pt with #CRPS. Happy to be here |
 | 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 @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't have to be locked into a pre-set sponsorship if you want to do something different. @patientexpsym was so excited & open to ideas, so that definitely helped as well. #WTFix #PatientChat |
| Patient Empowerment Network @power4patients @michelerhee @patientchat TRUTH! #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @abrewi3010: A1 at the time I felt incredibly supported by #medx. They even had a quiet room for patients that needed a break. #patientchat |
| HealthSparq @HealthSparq RT @patientchat: T2: 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 |
| 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 |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| Lydia L. Seiders @lseiders3 RT @lbdeck: That’s a great collaboration for #PatientsIncluded |
| 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: @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 |
| Lydia L. Seiders @lseiders3 @bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky! #patientchat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: Kevin from CT here. Great topic today. I am a 21 y cancer thriver and run @SalemOaks. I spent 30 y working in R&D @Pfizer I am committed to helping patients+ shape the future of medicine. #patientchat |
| Emily McIntosh @mcintose RT @patientchat: T2: 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 |
| 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 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T1: I have when I’ve had the benefit of receiving funding as a family advisor. It’s a wonderful learning experience that I wish were more accessible. The landscape is changing a bit with getting new info out there but that demands making patient access a priority. #patientchat |
| Kevin Freiert @K_SalemOaks There sure is a big difference. For example @GlobalGenes the feel of family is amazing. At others, feels just a bit too businessy. #patientchat |
| Patient Empowerment Network @power4patients RT @lbdeck: A2: 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 |
 | Mary MACK @MaryOCMack T1: I’ve attended patient conferences that—truthfully—had the agenda of industry, but was veiled as a patient conference. #patientchat |
| ISurvivor Lisa Deck @lbdeck You do an amazing job of being both the professional and patient perspective. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: 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 @patientchat: T2: 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 |
| Kevin Freiert @K_SalemOaks T2: Absolutely! Given that @SalemOaks see ourselves as "on the patients' side," it is critical to have patients involved. Not just attending, but LEADING discussions. #patientchat @GlobalGenes #PatExpSym #askpatients @WestchesterBio #pinksocks #WTFix |
| Lydia L. Seiders @lseiders3 RT @patientchat: Topic 2 (T2:) coming up... https://t.co/LxR68rpQTI #patientchat |
| Emily McIntosh @mcintose @LAlupusLady Amazing! You sound like a very strong voice. Keep up the good fight! #patientchat |
| Patient Chat @patientchat RT @michelerhee: @RarePOV This made me so sad for multiple reasons. Part of the value of patient participation is...participation. The dialogue & perspective are necessary to ensure we all learn from each other. #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: 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 |
| 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 @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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: A2: 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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: You do an amazing job of being both the professional and patient perspective. #patientchat |
| Lydia L. Seiders @lseiders3 RT @lbdeck: That’s another amazing collaboration! #patientchat |
| 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: 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 |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: Grace, board-certified patient advocate & #PtExp enhancer. Joining from a train heading home from #HITMC in #Boston. #patientchat |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: T1) I have been invited to speak at industry events. Some are more welcoming than others. Most cover event registration. Some cover some travel & hotel expenses. There are so many factors to consider when attending. #PatientChat |
| 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 ceremonial center. #patientchat |
| Amanda G @LAlupusLady A1 The most inclusive conference is https://t.co/VURfG0vZqc because @Colin_Hung and @techguy recognize the value of #PatientsIncluded and I was the Opening Keynote speaker last year. #patientchat |
| Lydia L. Seiders @lseiders3 RT @josefinebjork: |
| Lisa Davis Budzinski @lisadbudzinski @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose I’ve tried asking many organizers & was told they could not use their sponsor money for patients (?) #patientchat |
| Amanda G @LAlupusLady RT @mcintose: @LAlupusLady Amazing! You sound like a very strong voice. Keep up the good fight! #patientchat |
| Kevin Freiert @K_SalemOaks T2: @SalemOaks strives successful enough to sponsor scholarships, travel, and participation for patients+. (Take a course and support the cause https://t.co/GAHYfd0UDh ) #patientchat #PatExpSym @GlobalGenes #askpatients @WestchesterBio @S4PM #WTFix |
| Jamie Roger @JamieRoger8 @G17Esiason @GlobalGenes The option to livestream events for people who are unable to attend definitely opens up the opportunity to expand the audience perspective and give more patients the ability to attend. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @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 |
| Lisa Davis Budzinski @lisadbudzinski RT @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 |
| 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 |
| Emily McIntosh @mcintose @G17Esiason @GlobalGenes I love this. Having a live-stream option or even posting video coverage after the fact is an excellent way of increasing accessibility and inclusion! #patientchat |
| Lydia L. Seiders @lseiders3 RT @BarbyIngle: Glad to be here for this #patientchat with @patientchat @lbdeck #WTFix @HealthSparq and @mcintose, I am @BarbyIngle best selling author, cheerleader of hope, and dancer for life, coming to the chat from AZ today! |
| 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 lunch! #patientchat |
| 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 |
| Gunnar Esiason @G17Esiason RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 @abrewi3010 Hi Alan! #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @JamieRoger8 @SalemOaks Hi Jamie!!! #patientchat |
| Lydia L. Seiders @lseiders3 RT @Purrfectly_Rare: T1. #patientchat I just attended what I would call my 1st true industry geared conference as a pt advocate & there is 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 |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: We’re excited to be a sponsor of the upcoming @patientexpsym to help two patients, @lbdeck & @mcintose, attend! #WTFix #PatientChat |
| Alan Brewington @abrewi3010 @power4patients Please feel free to reach out to me whenever you want, I would be happy to talk. I was on their epatient advisory board too. #medx #PatientChat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't have to be locked into a pre-set sponsorship if you want to do something different. @patientexpsym was so excited & open to ideas, so that definitely helped as well. #WTFix #PatientChat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @RarePOV Wow this is truly unfortunate! So sorry to hear that. #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose I’ve tried asking many organizers & was told they could not use their sponsor money for patients (?) #patientchat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: @GraceCordovano @patientexpsym @lbdeck @mcintose #1 tip: propose a new sponsorship option to the organizers! You don't have to be locked into a pre-set sponsorship if you want to do something different. @patientexpsym was so excited & open to ideas, so that definitely helped as well. #WTFix #PatientChat |
 | 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 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 RT @patientchat: T2: 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 @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 |
| Jamie Roger @JamieRoger8 @lisadbudzinski @SalemOaks Hello Lisa. Are you doing any better this week? #patientchat |
| Lydia L. Seiders @lseiders3 RT @josefinebjork: |
| Ken Taylor, RPIC @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 generally would not miss a session highlighting a patient speaker. #patientchat |
| Lydia L. Seiders @lseiders3 RT @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 |
| Lydia L. Seiders @lseiders3 RT @LAlupusLady: A1 The most inclusive conference is https://t.co/VURfG0vZqc because @Colin_Hung and @techguy recognize the value of #PatientsIncluded and I was the Opening Keynote speaker last year. #patientchat |
| HealthSparq @HealthSparq Exactly! #WTFix #PatientChat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: T2: 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 |
| 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 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 @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 |
| Patient Empowerment Network @power4patients @abrewi3010 Thanks! Will do :) #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/LxR68rpQTI #patientchat #patientchat |
| Kevin Freiert @K_SalemOaks @lisadbudzinski @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose They may be constrained by their internal compliance rules. The organizers need to find a way to make such sponsorship to a pool. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: T2: 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 |
| 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 |
| Lisa Davis Budzinski @lisadbudzinski @JamieRoger8 @SalemOaks Still on recovery mode. It’s hard to have #intractablepain, try to represent the #patientperspective and come home back into my #caregiver role for my hubby✨ How are you? How have you been? #PatientChat |
| Michele Rhee @michelerhee @patientchat T2: Absolutely! For all patient-related meetings, I tend to only go if I’m asked to speak (bc I travel a lot for work, so I try not to travel!), & I will only speak if they accommodate patients. #PatientsIncluded #PatientChat |
| Patient Empowerment Network @power4patients RT @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 |
| Patient Empowerment Network @power4patients RT @KenRayTaylor: T2: 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 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 @mcintose @G17Esiason @GlobalGenes YES! Livestream is so important for including patients and caregivers that can't otherwise travel or take that much time away. Livestream encourages even more participation & discussion! #WTFix #PatientChat |
| Lydia L. Seiders @lseiders3 RT @patientchat: Topic 3 (T3:) coming up... https://t.co/LxR68rpQTI #patientchat #patientchat |
| Emily McIntosh @mcintose @JamieRoger8 @G17Esiason @GlobalGenes Yes! Lives stream - or post slides/video coverage after the fact for those that have other commitments or possible medical appointments during the conference. #Patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat T2: @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 @patientchat: T3: 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 |
| Lydia L. Seiders @lseiders3 RT @power4patients: @abrewi3010 Thanks! Will do :) #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @JamieRoger8 @SalemOaks Still on recovery mode. It’s hard to have #intractablepain, try to represent the #patientperspective and come home back into my #caregiver role for my hubby✨ How are you? How have you been? #PatientChat |
| Lydia L. Seiders @lseiders3 RT @JamieRoger8: @lisadbudzinski @SalemOaks Hello Lisa. Are you doing any better this week? #patientchat |
| Michele Rhee @michelerhee @patientchat T2: I’m really thrilled to say that almost every single meeting has had accommodations in the form of patient scholarships, live streaming, disability access, etc., & the 1 meeting that didn’t is not implementing a plan! #PatientChat |
| ISurvivor Lisa Deck @lbdeck RT @JamieRoger8: Looking forward to #patientchat later today. Hope to see some familiar faces... @abrewi3010 @Chris_Anselmo @Purrfectly_Rare this is your reminder haha. |
| Lydia L. Seiders @lseiders3 RT @H_SalemOaks: I’m always out getting lunch during #patientchat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: @lisadbudzinski @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose They may be constrained by their internal compliance rules. The organizers need to find a way to make such sponsorship to a pool. #patientchat |
| 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 for people to watch after if they weren’t able to view the live-stream. #patientchat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: Exactly! #WTFix #PatientChat |
| Emily McIntosh @mcintose RT @patientchat: T3: 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 |
| Marni Cartelli @Purrfectly_Rare T.2 #patientchat Yes! As an #advocate I can’t fathom supporting conferences which don’t stand by #patientsincluded especially 4 profit ones. Pts need 2 B recognized as #stakeholders just as much as CEOs & respected as drivers of #innovation |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @K_SalemOaks @patientchat At some industry meetings, even when the topic is patient engagement, for example, only the industry side of that engagement might be represented as a speaker or audience member. #PatientChat |
| Heather McCullen @H_SalemOaks RT @K_SalemOaks: T2: 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 @K_SalemOaks: T2: 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 |
| Amanda G @LAlupusLady RT @KenRayTaylor: T2: 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 @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 |
| Lisa Davis Budzinski @lisadbudzinski @K_SalemOaks @HealthSparq @GraceCordovano @patientexpsym @lbdeck @mcintose Thank you for understanding what I was saying! I hear the compliance a lot when it’s only Drs, industry & business attending certain conferences ✨ #patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @lbdeck Thank you! I worry about that balance a lot. I constantly check in with myself & others to make sure that I’m representing my patient experience & my relevant patient communities, that I’m not jaded. #PatientChat |
| 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 |
| HealthSparq @HealthSparq @michelerhee @patientchat YES! That is so awesome @michelerhee - forces organizers to really think about what they're doing with their event! #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 RT @G17Esiason: Yes! I was a keynote at @GlobalGenes RARE Patient Advocacy Summit last fall and it was an AWESOME experience. Not only was I one of several patients in attendance, it was 100% live-streamed for folks who couldn’t attend - whether for health/financial reasons #patientchat |
| Lydia L. Seiders @lseiders3 RT @JamieRoger8: Yes, this is definitely a factor in deciding what conferences we attend. @SalemOaks exists to empower patients to use their voice. #patientchat |
| 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 speaking to #PtExp & aren't a patient. We are not all patients, #PatientChat |
| Jamie Roger @JamieRoger8 @lisadbudzinski @SalemOaks that's rough... it's all about balance. Use #selfcare as much as you need to and just let him know when you need to take a break from any extra responsibilities to give yourself a moment. I am doing really well, enjoying the warmer weather finally coming my way. #patientchat |
| Emily McIntosh @mcintose T3. Conferences are beneficial for KT and collaborations that help advance care. Without patient voices there's a missed opportunity for practical insight. Cross-functional teams are innovative because they combine diverse skill sets. Patients should be partners! #patientchat |
| 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 community representatives that shows up... #patientchat |
| Kevin Freiert @K_SalemOaks T3: When I stepped through the looking glass from Pfizer to the active-patient world, stunned by the discourse. But value comes by growing participation. More voices, more stories, more diversity, better solutions. #patientchat #PatExpSym #pinksocks @GlobalGenes @S4PM #WTFix https://t.co/1V68noSZbP |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have every intent of finding all accessible avenues I can My dad once asked me why people cant just rent a hall, buy some buckets of chicken. If only it were that easy. #patientchat |
| Enlightening Results 💡 @GraceCordovano @HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offering behind the scenes sessions. Made those attending virtually feel extra special, not just an online attendee #PatientChat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T2: 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 |
| 𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 😷🇨🇦❤️ 🥀 @NatriceR RT @RaeofSunshine79: @patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have every intent of finding all accessible avenues I can My dad once asked me why people cant just rent a hall, buy some buckets of chicken. If only it were that easy. #patientchat |
| HealthSparq @HealthSparq RT @patientchat: T3: 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 |
| 𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 😷🇨🇦❤️ 🥀 @NatriceR RT @patientchat: T2: 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 @abrewi3010 Just #RTing away! 😁 #patientchat We ARE #StrongerTogether and #EvenLouder |
| ISurvivor Lisa Deck @lbdeck RT @GraceCordovano: @HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offering behind the scenes sessions. Made those attending virtually feel extra special, not just an online attendee #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @RarePOV @bbhomebody Oh no! We are patients with a wealth of knowledge but we are genuine patients! #patientchat |
| Lydia L. Seiders @lseiders3 RT @wareFLO: @LAlupusLady I too love healthcare conferences! (such as #HITMC #HITMC19 ☺) Every other week, via shared #VirtualReality, we host #HealthSystemsChat in #SocialVR in conjunction w/a conference. Many patients & care givers attend & are well represented! 🏆 #patientchat https://t.co/X1Sw3IKCTW |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| 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: @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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: A1: 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 |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: Hi everyone! Lisa here from Florida & @Cpnervecenter with my fantabulous colleague @bbhomebody ✨ #patientchat |
| Lydia L. Seiders @lseiders3 @lisadbudzinski @Cpnervecenter @bbhomebody Hi Lisa! #patientchat |
| Lydia L. Seiders @lseiders3 RT @power4patients: A1: 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 |
| Kevin Freiert @K_SalemOaks Check out @GlobalGenes They may be able to help you find those avenues to reach your wonderful goal. #patientchat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: We’re @HealthSparq & through #WTFix are committed to ensuring patients are at the center of #healthcare conversations & work to highlight patient stories & efforts for change, no matter how small. #PatientChat |
| 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: 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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: @power4patients @abrewi3010 Ditto! So glad to hear positive feedback on #medx #patientchat |
| HealthSparq @HealthSparq @GraceCordovano @mcintose @G17Esiason @GlobalGenes Gotta keep thinking differently to drive change - one of the things we love most about #WTFix! #patientchat |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @G17Esiason @GlobalGenes Incredibly helpful to have live-streaming & live tweeting so people who can't attend may follow along. Personally can't stand when conferences post signs: no taking pictures. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @GraceCordovano @patientchat Dude. The phrase “We are all patients” makes me want to squish things with my bare hands. #PatientChat |
| Jamie Roger @JamieRoger8 RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @JamieRoger8 @SalemOaks Well, yay!!! Grasp all the warm weather you can scoop up 💕 #patientchat |
| Lydia L. Seiders @lseiders3 RT @LAlupusLady: A2 As a patient/caregiver/healthcare advocate I always consider the conference and how will they address the patient community representatives that shows up... #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp RT @patientchat: Today's #patientchat topic is Patient Access: Today's #patientchat topic is Patient Access: Let's Talk Healthcare Conferences https://t.co/uVR5roBtov |
| Lydia L. Seiders @lseiders3 RT @davidcnorrismd: Hello, #patientchat! David here, precision-medicine methodologist w/ special interest in early-phase cancer trial methodology & ethics. |
| Kevin Freiert @K_SalemOaks @GlobalGenes BTW - I see what you did there with "buckets" #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences either. This is an opportunity to inform and empower patients with new knowledge. We too become knowledge brokers #patientchat |
| Michele Rhee @michelerhee @HealthSparq @patientchat I would like every speaker to require meeting organizers to ensure patient accommodations. If every presenter did the same, organizers would ideally have to include patients in the planning & execution, alleviating so many of the problems we’ve all seen. #PatientChat |
| ISurvivor Lisa Deck @lbdeck A3: Patients are the most educated consumers and provide valuable insights to industry. #patientchat |
| 𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 😷🇨🇦❤️ 🥀 @NatriceR RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences either. This is an opportunity to inform and empower patients with new knowledge. We too become knowledge brokers #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T3: Patients are credible educators to their followings including their own dr.s The patients have many reasons to offer their gained knowledge from in-person events and reach people that would otherwise never get the info. #patientchat |
| Lydia L. Seiders @lseiders3 @davidcnorrismd Hi David! Glad you made it! #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @lseiders3 @Cpnervecenter @bbhomebody Hi Lydia!! ✨ #PatientChat |
| Barby Ingle 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: 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 @lisadbudzinski @Cpnervecenter @bbhomebody 💪 #patientchat |
| Gunnar Esiason @G17Esiason It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat |
| Jamie Roger @JamieRoger8 @lisadbudzinski @SalemOaks I am definitely trying! I can't wait until it's not rainy/ damp and I can work outside again, both in my garden, and as an office! #patientchat #outdoors #workfromhome |
 | International Pain Foundation® @iPainOfficial RT @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 |
| Kevin Freiert @K_SalemOaks T3: Conferences without patients, about patients? Yuck. Nothing about us without us! #patientchat #askpatients #PatExpSym #bridgingthechasm #WTFix https://t.co/1LKg9fpOUE |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @michelerhee @patientchat YES! That is so awesome @michelerhee - forces organizers to really think about what they're doing with their event! #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @K_SalemOaks @GlobalGenes Lol! You caught me. 😉 Thanks for the tip! #patientchat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @mcintose @G17Esiason @GlobalGenes YES! Livestream is so important for including patients and caregivers that can't otherwise travel or take that much time away. Livestream encourages even more participation & discussion! #WTFix #PatientChat |
| Amanda G @LAlupusLady RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat |
| Lydia L. Seiders @lseiders3 RT @RaeofSunshine79: @patientchat T2 On my bucket list is the creation of a local conference for families affected by #raredisease I have every intent of finding all accessible avenues I can My dad once asked me why people cant just rent a hall, buy some buckets of chicken. If only it were that easy. #patientchat |
| ISurvivor Lisa Deck @lbdeck Amazing idea. #PatientsIncluded |
| Lydia L. Seiders @lseiders3 RT @abrewi3010: A3 Everyone Included should be a normal standard, not a new radical idea. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @GraceCordovano @michelerhee @patientchat It is a great segway! 👏👏👏 #patientchat |
| Inspire @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 |
| ISurvivor Lisa Deck @lbdeck RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences either. This is an opportunity to inform and empower patients with new knowledge. We too become knowledge brokers #patientchat |
 | Laura @auract @patientchat I was at #wodc2019, my 1st pharma conf (I’m used to academic ones). The organizers were great and made it smooth for us @CreatineInfo to present. I got to ask lots of questions. I hope patient voices have more of a presence in panels with pharma leaders #patientchat |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @michelerhee @patientchat "We are all patients" causes instant 👇👇. It is a great statement as a segway to teachable moments #PatientChat https://t.co/kKz5izPslG |
| Kevin Freiert @K_SalemOaks T3: The more patients can attend, the more they understand and the more effective partners they can become. Industry needs to invest in the development of these partners. #patientchat #askpatients #PatExpSym #WTFix |
| 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 different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat |
| 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: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/IqBQ0maGJ7 |
| Emily McIntosh @mcintose Absolutely. Spreading (informed) knowledge through support groups and other connections helps patients to be empowered and to remain current with healthcare innovations #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @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 |
| HealthSparq @HealthSparq RT @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 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 especially 4 profit ones. Pts need 2 B recognized as #stakeholders just as much as CEOs & respected as drivers of #innovation |
| Lydia L. Seiders @lseiders3 RT @lbdeck: Amazing idea. #PatientsIncluded |
| 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: 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 |
| Patient Chat @patientchat T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql |
| Lydia L. Seiders @lseiders3 RT @RaeofSunshine79: @patientchat T3 Conferences are a dissemination strategy for new research. Not every clinician can make conferences either. This is an opportunity to inform and empower patients with new knowledge. We too become knowledge brokers #patientchat |
| Inspire @InspireIsHealth RT @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 |
| Heather 🇺🇸 @ZHeatherChamp @RarePOV REALLY?! #PatientChat |
| Alan Brewington @abrewi3010 As @GraceCordovano said, less swag and more access! #PatientChat |
| HealthSparq @HealthSparq T3. The conversations that can be had by including #patients are priceless. Plus, by including patients, it's recognizing that patients are at the center of everything in #healthcare...which is what we need to drive change for the better. #patientchat #WTFix |
| Lisa Davis Budzinski @lisadbudzinski @JamieRoger8 @SalemOaks Get those hands in the dirt and be ready-energized ✨ #patientchat |
| HealthSparq @HealthSparq RT @patientchat: T4: 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 |
| Lydia L. Seiders @lseiders3 RT @KenRayTaylor: T2: 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 |
| 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 different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat |
| ISurvivor Lisa Deck @lbdeck @HealthSparq Thank you. Me too! #patientchat |
| Kevin Freiert @K_SalemOaks T4: Accountability. Nothing better than when someone in the audience can call the speaker or panel on a misconception. #patientchat @GlobalGenes #PatSymExp #pinksocks @1111lino #WTFix |
| 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 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 |
| HealthSparq @HealthSparq RT @josefinebjork: |
| 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 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 |
| Patient Empowerment Network @power4patients RT @patientchat: T4: 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 of patients/caregivers, have been @healthevoices and WTFix, as @GraceCordovano mentioned. The challenge is that good livestreams add cost/complexity. #patientchat |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: Hi everyone! We’re thrilled to be here at #patientchat today w/ #patient scholarship recipients @lbdeck & @mcintose to discuss patient access at #healthcare events! #WTFix https://t.co/NjHIcPJlB0 |
| Patient Empowerment Network @power4patients RT @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 |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @RarePOV @bbhomebody Oh no! We are patients with a wealth of knowledge but we are genuine patients! #patientchat |
| 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 @auract: @patientchat I was at #wodc2019, my 1st pharma conf (I’m used to academic ones). The organizers were great and made it smooth for us @CreatineInfo to present. I got to ask lots of questions. I hope patient voices have more of a presence in panels with pharma leaders #patientchat |
| Lydia L. Seiders @lseiders3 RT @RaeofSunshine79: @RarePOV Wow this is truly unfortunate! So sorry to hear that. #patientchat |
| Patient Empowerment Network @power4patients RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 RT @patientchat: T4: 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: @patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat |
| Michele Rhee @michelerhee @patientchat T3: Without patients, the conference is a scripted monologue by the wrong speaker when this should be a dialogue/open discussion/forum for learning & dissemination of info & best practices. We need real life, & patients give us that. #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @JamieRoger8 @SalemOaks Balance sounds like a nice, soothing, serene kinda word but ..........😉 #patientchat |
 | Emily K. Drake @EK_Drake RT @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 @mcintose: @LAlupusLady @HIMSS Hi Amanda. I'mso sorry that you've had that experience. I think and hope that things are beginning to change! Has this discouraged you or will you continue to attend conferences? #patientchat |
| 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. #patientchat |
| 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 about empowering patients. #PatientChat |
| HealthSparq @HealthSparq RT @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 |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @power4patients @ASCO @ASH_hematology Agreed! Seeing more along the lines of advocacy. More work to do though #PatientChat |
| 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 different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat |
| 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 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 |
| Emily McIntosh @mcintose @davidcnorrismd Absolutely. Researchers face their fair share of criticism from Reviewer 2. Study designs should be able to be scrutinized by their target audiences to help improve feasibility, deliverability, and to ensure that the desires of the consumers (patients) are met! #patientchat |
| Lydia L. Seiders @lseiders3 RT @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 |
| 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 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 |
| 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 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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: I’m excited to be one of those patients thanks to @HealthSparq #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @RarePOV @michelerhee @lukebrosen Hear hear!!! 👏👏👏👏 #patientchat |
| Enlightening Results 💡 @GraceCordovano T4) Patients & carepartners often ask the most thought-provoking questions. Also great at cutting through blatant BS. We need that. Patients on stage is even more powerful. #PatientChat |
| Amanda G @LAlupusLady RT @KenRayTaylor: T3: 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 |
| ISurvivor Lisa Deck @lbdeck T4: Patients in the audience allow for medical professionals to have direct access to those they’re trying to help. #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @carlyflumer Hi fellow thyroid cancer survivor ✨ #PatientChat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @mcintose Absolutely! Was speaking with a researcher the other day about how interesting it would be to somehow keep track of how far new knowledge funnels through support networks. #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: Absolutely. Spreading (informed) knowledge through support groups and other connections helps patients to be empowered and to remain current with healthcare innovations #patientchat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: There sure is a big difference. For example @GlobalGenes the feel of family is amazing. At others, feels just a bit too businessy. #patientchat |
| Patient Empowerment Network @power4patients RT @michelerhee: @patientchat T3: @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 @HealthSparq: @Purrfectly_Rare Hi Marni! #patientchat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: T1: T1: I haven't. Always thought I was too pharma. But you know… I should. #patientchat #PatExpSym #WTFix #askpatients |
| 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 |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat T4: @patientchat T4: Through the sharing of stories, emotions, and experiences! Everyone thrives and takes away some sort of hope in their own way. #patientchat |
| Emily McIntosh @mcintose RT @patientchat: T4: T4: How does having patients in the audience change a health care event? #patientchat https://t.co/ssSrVF8mql |
| Lydia L. Seiders @lseiders3 RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat T3: @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 @GraceCordovano: @patientchat @lbdeck @mcintose Congrats! That's wonderful news! #PatientChat |
| Lydia L. Seiders @lseiders3 RT @ZHeatherChamp: A1: 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 |
| 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 that patients are at the center of everything in #healthcare...which is what we need to drive change for the better. #patientchat #WTFix |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: T3: 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 |
| Emily McIntosh @mcintose T4. Patients are the consumers of healthcare – so why wouldn’t you want feedback to offer better services? Lived experiences are valuable! Patients and caregivers are some of the most intrinsically motivated people I’ve come across #patientchat |
| Lisa Davis Budzinski @lisadbudzinski This👇! 👏👏👏 #patientchat 💕 |
| Lydia L. Seiders @lseiders3 RT @KenRayTaylor: T1: 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 |
| Enlightening Results 💡 @GraceCordovano @carlyflumer @patientchat The authenticity & vulnerability as well as lived experiences & expertise fully enrich the discussion & event. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @lbdeck: That’s great news! #patientchat |
| 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 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 RT @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 |
| Lydia L. Seiders @lseiders3 RT @carlyflumer: @patientchat T4: @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 @GraceCordovano: @michelerhee @patientchat So nice to see you Michele! Happy Friday! #PatientChat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: @michelerhee @patientchat Yes - I want to hear more. ??There weren't enough patients??? #patientchat |
| Marni Cartelli @Purrfectly_Rare T.3 #patientchat I feel like pts bring much 2 Conf & more importantly bring Conf message back 2 own communities More & more pts are influencing their care directly & no longer go w what 1st Dr says. I don’t understand Y Conf organizers & sponsors wouldn’t want more in attendance |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @RarePOV @michelerhee @lukebrosen Hear hear!!! 👏👏👏👏 #patientchat |
| Lydia L. Seiders @lseiders3 RT @LAlupusLady: A2 I am grateful that @powerofpain is including patients in all aspects of the #iPainSummit2019 I am on the planning and 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 @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 |
| Lydia L. Seiders @lseiders3 RT @lbdeck: A3: 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 |
| Heather McCullen @H_SalemOaks RT @K_SalemOaks: T3: 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 |
| 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 |
| Jamie Roger @JamieRoger8 @lisadbudzinski @SalemOaks hahaha, so true, but it's important in finding the balance that works for you TODAY... not yesterday or tomorrow, but what you need right now to heal. #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: @G17Esiason @GlobalGenes I love this. Having a live-stream option or even posting video coverage after the fact is an excellent way of increasing accessibility and inclusion! #patientchat |
| Lydia L. Seiders @lseiders3 RT @abrewi3010: As @GraceCordovano said, less swag and more access! #PatientChat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Interesting question & great #patientchat topic. I think the first tip-off to whether or not my patient/advocate voice will be welcomed is whether or not they have an advocate/patient rate for registration. @SABCSSanAntonio & @ASCO have been awesome. Both offer advocate rates. |
| Lydia L. Seiders @lseiders3 RT @power4patients: A3: 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 |
| Lydia L. Seiders @lseiders3 RT @BarbyIngle: T4: 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 @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 |
 | 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 diminishes it! #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @JamieRoger8 @SalemOaks Get those hands in the dirt and be ready-energized ✨ #patientchat |
| 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 @lisadbudzinski @SalemOaks Hi lisa, how are you? #patientchat |
| Patient Empowerment Network @power4patients RT @RarePOV: |
 | Abby Hershberger @AbbyHershberger @patientchat T1- No I have never attended one and I have never been invited to one that I can think of? #patientchat |
| Lydia L. Seiders @lseiders3 RT @lbdeck: @HealthSparq Thank you. Me too! #patientchat |
| HealthSparq @HealthSparq @GraceCordovano @carlyflumer @patientchat Yes! #patientchat |
 | DoubleTrojan @DoubleTrojan RT @G17Esiason: It’s essential for people w/ cystic fibrosis since we deal with chronic bacterial infection and can expose each other to different strains of bacteria @CF_Foundation’s NACFC does not go outside the box to get #patientsincluded through streaming... which is a shame #patientchat |
| Lydia L. Seiders @lseiders3 RT @lbdeck: T4: 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 @K_SalemOaks: T3: 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 |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @lbdeck And we are THRILLED to have you joining us in Boston & becoming part of #WTFix! #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: T4. Patients are the consumers of healthcare – so why wouldn’t you want feedback to offer better services? Lived experiences are valuable! Patients and caregivers are some of the most intrinsically motivated people I’ve come across #patientchat |
| 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 gives an important aspect of access, inclusion, transparency, & openness to conversations, criticism & working together to make change. #WTFix #PatientChat |
| Jamie Roger @JamieRoger8 RT @BarbyIngle: T4: 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 |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @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 |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @HealthSparq @mcintose @G17Esiason @GlobalGenes Loved the way #WTFix18 took live-stream to a whole new level, by offering behind the scenes sessions. Made those attending virtually feel extra special, not just an online attendee #PatientChat |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @HealthSparq @patientexpsym @lbdeck @mcintose This is so awesome! Thank you for doing that! Would love to hear if you have tips for other companies who may want to sponsor patients to attend events/conferences? #PatientChat |
| HealthSparq @HealthSparq RT @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 @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 |
| ISurvivor Lisa Deck @lbdeck RT @BarbyIngle: T1: 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 |
| Alan Brewington @abrewi3010 A4 health literacy will only improve if all partners are participating in the conversation. You can’t have a open and 2 way conversation without everyone included #patientchat |
| Gunnar Esiason @G17Esiason @HealthSparq @mcintose @GlobalGenes Especially when the folks live streaming have the ability to communicate with presenters and in-person attendees via conference apps or virtual meeting portals. #patientchat |
 | ALS Advocacy @alsadvocacy RT @RarePOV: |
| 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 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 |
| 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 |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| ISurvivor Lisa Deck @lbdeck RT @Purrfectly_Rare: T.3 #patientchat I feel like pts bring much 2 Conf & more importantly bring Conf message back 2 own communities More & 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 |
| Nick Dawson @nickdawson @G17Esiason @CF_Foundation #PatientChat you’re pointing out a fundamentally abelest thing about most meetings - they happen in person which isn’t doable for many. |
| HealthSparq @HealthSparq RT @RarePOV: |
| ISurvivor Lisa Deck @lbdeck RT @JamieRoger8: @lbdeck @lisadbudzinski @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 that patients are at the center of everything in #healthcare...which is what we need to drive change for the better. #patientchat #WTFix |
| Lydia L. Seiders @lseiders3 RT @lbdeck: T4: T4: Patients in the audience allow for medical professionals to have direct access to those they’re trying to help. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T3 Patients have a wealth of knowledge living with the condition 24/7. #livedexperience is such a valuable teaching tool for the #healthcare industry #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @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 |
| Ken Taylor, RPIC @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 |
| Michele Rhee @michelerhee @patientchat T4: Patients cut thru BS. When speakers are sticking to talking points or being polite, I’ve seen patient speakers & audience members say the thing or ask the ? that WE ALL were thinking. Patients push for answers & action—bc this is our lives, not just our jobs. #PatientChat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T4 I remember my first research conference where we broke off into groups. A researcher asked me a perfectly normal question and my brain panicked My 1st impulse was to want to blurt out “I don’t know, I’m just a mom!”😆 Pts deserve to see value in their insights #patientchat |
| Mary MACK @MaryOCMack T4. Discomfort and truth to power can bring about change. That’s what patients at conferences has the chance to do. #patientchat |
| HealthSparq @HealthSparq RT @lisadbudzinski: T3 Patients have a wealth of knowledge living with the condition 24/7. #livedexperience is such a valuable teaching tool for the #healthcare industry #patientchat |
| Enlightening Results 💡 @GraceCordovano RT @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 @RaeofSunshine79: @patientchat T4 I remember my first research conference where we broke off into groups. A researcher asked me a perfectly normal question and my brain panicked My 1st impulse was to want to blurt out “I don’t know, I’m just a mom!”😆 Pts deserve to see value in their insights #patientchat |
| Emily McIntosh @mcintose @RaeofSunshine79 100%! My fear, as a researcher, is always the quality of the information. I want proper (scientific) information to get spread (not the telephone chain-purple-monkey-dishwasher). We have to get better at scientific literacy and to help improve KT without jargon. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... https://t.co/LxR68rpQTI #patientchat |
| Amanda G @LAlupusLady RT @KenRayTaylor: T4: 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 |
| 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 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 @patientchat: T5: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5RYdAaQd7 |
| Lydia L. Seiders @lseiders3 RT @patientchat: Topic 5 (T5:) coming up... https://t.co/LxR68rpQTI #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @RarePOV: |
| 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 |
| Lisa Davis Budzinski @lisadbudzinski If I drop out of sight it’s due to a storm coming across #patientchat https://t.co/Pk2RcS5oF9 |
| 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 @mcintose @GlobalGenes Yes! It needs to be a conversion with the digital audience, not just a show for them. #WTFix #PatientChat |
| HealthSparq @HealthSparq RT @patientchat: T5: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5RYdAaQd7 |
 | 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” |
 | Marion Malcolm @MarionMalcolm2 RT @josefinebjork: |
| Kevin Freiert @K_SalemOaks T5: Lobby for "bring a patient" pricing. (Add $50 and you can bring that friend) #patientchat #askpatients #PatExpSym |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @michelerhee @patientchat “scripted monologue by the wrong speaker” 🔥🔥🔥🔥 #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T4 (cont’d) but seriously if I was wearing a hooded sweatshirt I would put the hood on and cinched it over my face. Confidence in your seat at “the table” is something I’d love to see in every patient #patientchat |
| Gunnar Esiason @G17Esiason RT @HealthSparq: @G17Esiason @mcintose @GlobalGenes Yes! It needs to be a conversion with the digital audience, not just a show for them. #WTFix #PatientChat |
| Jamie Roger @JamieRoger8 @lisadbudzinski OH GOODNESS! Take cover while you can. #patientchat |
| Abby Hershberger @AbbyHershberger @patientchat T2- n/a I am a patient and have never attended one 😀 #patientchat |
| Nick Dawson @nickdawson @patientchat T4 #PatientChat so…controversial consideration: We’ve had phases of participation. First was “let us in!” Then “we’re all together”. Now is it time to ask what’s the intention? What do we want to get out of conferences and meetings together? Or should the whole notion evolve? |
| Enlightening Results 💡 @GraceCordovano @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. Reach out to conference organizers, ask if there is a scholarship or reduced fee. Some may create on the fly. Offer to be a SoMe ambassador or write a blog. Ask for sponsorship. #PatientChat |
| Emily McIntosh @mcintose RT @patientchat: T5: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5RYdAaQd7 |
| Carly Flumer (she/her) @carlyflumer @patientchat As another person mentioned, provide scholarships! Conferences can be pricey! #patientchat |
| Enlightening Results 💡 @GraceCordovano RT @ZHeatherChamp: @patientchat A2: @patientchat A2: If it weren’t for patient scholarships I’d never be able to attend. Thankful for them! #PatientChat |
 | Maggie Rogers @magthenomad T4. We spit truth. Aren’t afraid to ask the tough questions. And add a human element to the work that people are doing who we are sitting amongst. #patientchat |
| Kevin Freiert @K_SalemOaks T5: Have a killer question that we all ask at every conference we go to. Make it a thing. #patientchat #askpatients #PatExpSym @GlobalGenes https://t.co/RYSEb0RMM0 |
| Alan Brewington @abrewi3010 A4 patients turn conferences from book reports to a human centered experience. #patientchat |
| HealthSparq @HealthSparq T5. Those in conference organizing roles should always consider how to incorporate patient perspective early, incl. patients, caregivers, & advocates in the planning phase. Offer live stream, scholarships & stipends to ensure patients are represented. #WTFix #PatientChat |
| Emily McIntosh @mcintose T5. Conferences are becoming #PatientAccredited, which is great, but we also need improved accessibility. Discounted rates as well as sessions aimed specifically for patients (no jargon) to promote knowledge translation will help with patient empowerment #patientchat |
| Patient Empowerment 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: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. Reach out to conference organizers, ask if there is a scholarship or reduced fee. Some may create on the fly. Offer to be a SoMe ambassador or write a blog. Ask for sponsorship. #PatientChat |
| 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 |
| Kevin Freiert @K_SalemOaks T5: Being a small company, budgets are tight. However, being able to join forces with other small shops would help us chip in. #patientchat #PatExpSym #askpatients |
| Lisa Davis Budzinski @lisadbudzinski T4 Depends on if we can respond or not. Patients will be posting on social channels & sharing #patientchat |
| Lydia L. Seiders @lseiders3 @patientchat A:5 Keep having open & public conversations pertaining patient attendance & support at conferences. Be willing to respectfully call out those who refuse to provide/include it. #EndUsersMatter #WeGiveTheData #patientchat |
| Michele Rhee @michelerhee @coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-of-charge patient registrations. Even a discounted rate can be too much for patients dealing with medical bills, etc. Free registration can make a huge difference. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @ZHeatherChamp: @patientchat A5: @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 |
| 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 |
| HealthSparq @HealthSparq RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 @carlyflumer @patientchat 🙌 yes! #patientchat |
| Enlightening Results 💡 @GraceCordovano RT @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 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @mcintose You are absolutely right and we are in need of new KT strategies. It’s an avenue I’m both fascinated by and would love to participate more in regards to more out of the box thinking. #patientchat |
| HealthSparq @HealthSparq @josefinebjork Great consideration of additional barriers to attendance! #WTFix #patientchat |
| ISurvivor Lisa Deck @lbdeck @patientchat T5: one way to do that is to always ask if a conference is #patientsincluded when you’re asked to participate in an event. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @davidcnorrismd @michelerhee @patientchat 👏👏👏 seen way too many of these✨ #patientchat |
| Lydia L. Seiders @lseiders3 RT @coffeemommy: Interesting question & great #patientchat topic. I think the first tip-off to whether or not my patient/advocate voice will be welcomed is whether or not they have an advocate/patient rate for registration. @SABCSSanAntonio & @ASCO have been awesome. Both offer advocate rates. |
| Lydia L. Seiders @lseiders3 RT @G17Esiason: @HealthSparq @mcintose @GlobalGenes Especially when the folks live streaming have the ability to communicate with presenters and in-person attendees via conference apps or virtual meeting portals. #patientchat |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| 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 conversation without everyone included #patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-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 |
| 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 |
| 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 |
| Kevin Freiert @K_SalemOaks T5: Put out press releases for patients who are attending. Congratulations on the scholarship sponsored by … #patientchat #askpatients @Global Genes #PatExpSym |
| 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: @coffeemommy @SABCSSanAntonio @ASCO That’s wonderful! It would be fantastic if they could offer a limited number of free-of-charge patient registrations. Even a discounted rate can be too much for patients dealing with medical bills, etc. Free registration can make a huge difference. #PatientChat |
| Lydia L. Seiders @lseiders3 "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 “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? |
| Emily McIntosh @mcintose @AbbyHershberger @patientchat Perhaps not just streamed online, but also have some kind of associated chat so that those who cannot attend can still have a means to ask questions and contribute? #patientchat |
| Lydia L. Seiders @lseiders3 RT @josefinebjork: |
| Alan Brewington @abrewi3010 A5 ask conference leaders if they have patient scholarships or livestream options. If yes offer up your services as an advocate. Things like paywalls are obsolete, call things like paywalls out. #patientchat |
| Lydia L. Seiders @lseiders3 RT @JamieRoger8: @lisadbudzinski @SalemOaks hahaha, so true, but it's important in finding the balance that works for you TODAY... not yesterday or tomorrow, but what you need right now to heal. #patientchat |
| 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 patient scholarships for those who cant afford to attend. We are offering 100 full or partial scholarships apply today! https://t.co/sxETR2ejHa #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @GraceCordovano: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. Reach out to conference organizers, ask if there is a scholarship or reduced fee. Some may create on the fly. Offer to be a SoMe ambassador or write a blog. Ask for sponsorship. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @KenRayTaylor: T4: 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 |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @coffeemommy @SABCSSanAntonio @ASCO Many conferences do not have a scholarship or reduced registration for advocates. Reach out to conference organizers, ask if there is a scholarship or reduced fee. Some may create on the fly. Offer to be a SoMe ambassador or write a blog. Ask for sponsorship. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @abrewi3010: A4 patients turn conferences from book reports to a human centered experience. #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: T5. Conferences are becoming #PatientAccredited, which is great, but we also need improved accessibility. Discounted rates as well as sessions aimed specifically for patients (no jargon) to promote knowledge translation will help with patient empowerment #patientchat |
| Lydia L. Seiders @lseiders3 RT @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 |
| 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: 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 |
| 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 doctors and “Dr. Google.” #patientchat |
| 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. #patientchat |
| Lydia L. Seiders @lseiders3 RT @GraceCordovano: @carlyflumer @patientchat The authenticity & vulnerability as well as lived experiences & expertise fully enrich the discussion & event. #PatientChat |
| Lydia L. Seiders @lseiders3 RT @ZHeatherChamp: @patientchat A4: @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 |
| Gunnar Esiason @G17Esiason Patient inclusion explicitly communicates patient NEEDS rather than organizational guesses. A criticism of #PatientsIncluded is that patients will alter the voice and missions of medical conferences. If that’s the case, then it means the planners missed their mark #patientchat |
| Lydia L. Seiders @lseiders3 RT @ZHeatherChamp: @RarePOV Well said! #PatientChat |
| Lydia L. Seiders @lseiders3 RT @AbbyHershberger: @patientchat T4: @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 |
| 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 advocate. Things like paywalls are obsolete, call things like paywalls out. #patientchat |
| 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 advocate. Things like paywalls are obsolete, call things like paywalls out. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @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 |
| 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 we are sitting amongst. #patientchat |
| Lydia L. Seiders @lseiders3 RT @mcintose: @AbbyHershberger @patientchat Perhaps not just streamed online, but also have some kind of associated chat so that those who cannot attend can still have a means to ask questions and contribute? #patientchat |
| 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 in #PatientChat |
| Michele Rhee @michelerhee RT @RarePOV: |
| David C. Norris, MD moved to Mastodon 🦣 @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 |
| Lydia L. Seiders @lseiders3 RT @ZHeatherChamp: A5, part 2: 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 |
| Lydia L. Seiders @lseiders3 RT @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 |
| 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: T5: Put out press releases for patients who are attending. Congratulations on the scholarship sponsored by … #patientchat #askpatients @Global Genes #PatExpSym |
| 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 @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 |
| 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 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 |
| 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 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 @lbdeck: @patientchat T5: @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 |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: How can we, was a community, push for more patient attendance and support at conferences? #patientchat https://t.co/T5RYdAaQd7 |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @josefinebjork Great consideration of additional barriers to attendance! #WTFix #patientchat |
| Lydia L. Seiders @lseiders3 RT @RaeofSunshine79: @mcintose You are absolutely right and we are in need of new KT strategies. It’s an avenue I’m both fascinated by and would love to participate more in regards to more out of the box thinking. #patientchat |
| 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 |
| Lydia L. Seiders @lseiders3 RT @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 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T5 Recently had an election and my fellow medical families were expressing their worries over safety of current health policy Been trying to teach families who is doing what, who to ask questions of, who to write and how to participate as not just users but advocates #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @mcintose 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 @lisadbudzinski: T4 Depends on if we can respond or not. Patients will be posting on social channels & sharing #patientchat |
| Lydia L. Seiders @lseiders3 RT @K_SalemOaks: T5: 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 |
| Jamie Roger @JamieRoger8 RT @G17Esiason: Patient inclusion explicitly communicates patient NEEDS rather than organizational guesses. A criticism of #PatientsIncluded is that patients will alter the voice and missions of medical conferences. If that’s the case, then it means the planners missed their mark #patientchat |
| Lydia L. Seiders @lseiders3 RT @AbbyHershberger: @patientchat T3: @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 |
| HealthSparq @HealthSparq @mcintose @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 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 |
| Lisa Davis Budzinski @lisadbudzinski RT @K_SalemOaks: T5: 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 |
| Lydia L. Seiders @lseiders3 RT @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 |
| 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/ CT: #patientchat |
| 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 we are sitting amongst. #patientchat |
| Lydia L. Seiders @lseiders3 RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose (@mcintose) 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 |
| HealthSparq @HealthSparq RT @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 @RarePOV: |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: T3 Patients have a wealth of knowledge living with the condition 24/7. #livedexperience is such a valuable teaching tool for the #healthcare industry #patientchat |
| Kevin Freiert @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 |
| 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 in #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 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 |
| ISurvivor Lisa Deck @lbdeck RT @RarePOV: |
| HealthSparq @HealthSparq RT @wareFLO: Congrats! Good news re Patient Experience Symposium in Boston: Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose (@mcintose) and Lisa Deck (@lbdeck)! #WTFix #PatientChat https://t.co/SqWIxpvpMF |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T5 (cont’d) Active participation creates opportunity to improve health systems but also see conferences for excellent knowledge building and networking opportunities. With confidence patients can connect with conference creators regarding accessibility benefiting all #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @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 |
| Lydia L. Seiders @lseiders3 This. |
| ISurvivor Lisa Deck @lbdeck RT @wareFLO: Congrats! Good news re Patient Experience Symposium in Boston: Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose (@mcintose) and Lisa Deck (@lbdeck)! #WTFix #PatientChat https://t.co/SqWIxpvpMF |
| Lisa Davis Budzinski @lisadbudzinski @G17Esiason Love the “organizational guesses”! #patientchat |
| Jamie Roger @JamieRoger8 Woah WOah Woah... how is it already closing thoughts time? #patientchat |
| Lisa Davis Budzinski @lisadbudzinski This! 👇 👏👏👏✨💕✨ #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 |
| HealthSparq @HealthSparq RT @RarePOV: |
| Kevin Freiert @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 result in more & more impactful involvement by patients. Making friends with conference organizers (staff & committees) can make a difference. #patientchat |
| 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 @mcintose for sharing your insights on today’s #patientchat |
| Patient Empowerment Network @power4patients RT @RarePOV: |
| Patient Empowerment Network @power4patients 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 everyone benefits model. #patientchat |
| Patient Empowerment Network @power4patients RT @teaminspire: @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 |
| Nick Dawson @nickdawson @mcintose @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 |
| Abby Hershberger @AbbyHershberger RT @mcintose: @AbbyHershberger @patientchat Perhaps not just streamed online, but also have some kind of associated chat so that those who cannot attend can still have a means to ask questions and contribute? #patientchat |
| Patient Empowerment Network @power4patients RT @RaeofSunshine79: @patientchat T5 (cont’d) Active participation creates opportunity to improve health systems but also see conferences for excellent knowledge building and networking opportunities. With confidence patients can connect with conference creators regarding accessibility benefiting all #patientchat |
| ISurvivor Lisa Deck @lbdeck Such a great subject and excellent engagement for the #patientchat |
| HealthSparq @HealthSparq Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & @mcintose for helping facilitate such an amazing chat! So excited to see even more push for change in #healthcare events! #WTFix #PatientChat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat CT: @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 |
| ISurvivor Lisa Deck @lbdeck RT @HealthSparq: Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & @mcintose for helping facilitate such an amazing chat! So excited to see even more push for change in #healthcare events! #WTFix #PatientChat |
| Patient Empowerment Network @power4patients RT @michelerhee: @patientchat T5: @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 |
| Alan Brewington @abrewi3010 CT chronic communication benefits all when practiced under the mantra of everyone included #patientchat |
| Emily McIntosh @mcintose RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #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 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 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 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 |
| 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 |
 | Barbara Alexander @BInTheCenter RT @LAlupusLady: Amanda from LA, living and thriving with lupus, fibromyalgia and chronic pain. I love healthcare conferences. #patientchat |
| ISurvivor Lisa Deck @lbdeck Such great ideas and brainstorming on #patientengagement in #health conferences. Thank you @patientchat and @HealthSparq for having @mcintose 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 result in more & more impactful involvement by patients. Making friends with conference organizers (staff & committees) can make a difference. #patientchat |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @RarePOV Yes! There are so many simple ways to include patients & expand conversations - Twitter & hashtags are hugely powerful! #WTFix #patientchat |
| Lydia L. Seiders @lseiders3 RT @michelerhee: @patientchat T5: @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 |
| Lydia L. Seiders @lseiders3 RT @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 RT @lisadbudzinski: This! 👇 👏👏👏✨💕✨ #PatientChat |
| Lydia L. Seiders @lseiders3 RT @lbdeck: Such a great subject and excellent engagement for the #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @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 RT @HealthSparq: Wow, such an amazing conversation! Thank you all for joining today & to @patientchat @lbdeck & @mcintose 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 @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 RT @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 |
| Lydia L. Seiders @lseiders3 RT @patientchat: Thanks so much to our guests @HealthSparq, @lbdeck, and @mcintose 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 #PatientsIncluded is that patients will alter the voice and missions of medical conferences. If that’s the case, then it means the planners missed their mark #patientchat |
| Lydia L. Seiders @lseiders3 RT @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 |
| Lydia L. Seiders @lseiders3 RT @carlyflumer: @patientchat CT: @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 @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 |
| 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 @patientchat: The next Empowered #patientchat will be Friday, May 3rd https://t.co/6dR7ctK40Q Hope to see you there! |
| Lydia L. Seiders @lseiders3 RT @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 |
| 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 @RaeofSunshine79: @patientchat T5 (cont’d) Active participation creates opportunity to improve health systems but also see conferences for excellent knowledge building and networking opportunities. With confidence patients can connect with conference creators regarding accessibility benefiting all #patientchat |
| Lydia L. Seiders @lseiders3 RT @wareFLO: Congrats! Good news re Patient Experience Symposium in Boston: Congrats! Good news re Patient Experience Symposium in Boston: Emily McIntose (@mcintose) and Lisa Deck (@lbdeck)! #WTFix #PatientChat https://t.co/SqWIxpvpMF |
| Lydia L. Seiders @lseiders3 RT @MaryOCMack: T1: T1: I’ve attended patient conferences that—truthfully—had the agenda of industry, but was veiled as a patient conference. #patientchat |
| Lydia L. Seiders @lseiders3 RT @AbbyHershberger: I'll be at the Empowered #patientchat on Fri 4/19 1pm ET. Join me! https://t.co/Mbcd6ETjNs via @power4patients |
| Kevin Freiert @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 @josefinebjork: CT: |
| Lydia L. Seiders @lseiders3 RT @lbdeck: Such great ideas and brainstorming on #patientengagement in #health conferences. Thank you @patientchat and @HealthSparq for having @mcintose and I here for this #patientchat. #WTFix |
| Emily McIntosh @mcintose CT: From @jessehirsh we have to improve the signal to noise ratio of scientific information. Improving knowledge translation and scientific/medical literacy can inform and empower pts and help advance care. One means of doing this is involving more pts in conferences #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @K_SalemOaks Yes! Read my mind ✨ #patientchat |
| Lydia L. Seiders @lseiders3 RT @abrewi3010: CT chronic communication benefits all when practiced under the mantra of everyone included #patientchat |
| Lydia L. Seiders @lseiders3 RT @nickdawson: @mcintose @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 |
| 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 @K_SalemOaks: CT: 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 |
| Lydia L. Seiders @lseiders3 RT @josefinebjork: |
| Lydia L. Seiders @lseiders3 RT @JamieRoger8: Woah WOah Woah... how is it already closing thoughts time? #patientchat |
| Lydia L. Seiders @lseiders3 RT @lisadbudzinski: @G17Esiason Love the “organizational guesses”! #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 aim to please those who pay the bills. A breakthrough would be aiming to please the patients. #patientchat |
| ISurvivor Lisa Deck @lbdeck RT @RarePOV: |
| Lydia L. Seiders @lseiders3 RT @HealthSparq: @mcintose @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 |
| DoubleTrojan @DoubleTrojan Coming to a @CF_Foundation conference near you . We will no longer stand for #cysticfibrosis patient exclusion and #Discrimination . #patientsincluded #patientchat #NothingAboutUsWithoutUs |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: The next Empowered #patientchat will be Friday, May 3rd https://t.co/6dR7ctK40Q Hope to see you there! |
| 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) |
| Lisa Davis Budzinski @lisadbudzinski RT @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 |
| 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: @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 |
 | francis_fullam@rush.edu @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 |
| Emily McIntosh @mcintose @patientchat @HealthSparq @lbdeck Thank you so much for involving me! It was great to read so many different opinions. I'm looking forward to more discussion at the @patientexpsym #patientchat |
| 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 patient scholarships for those who cant afford to attend. We are offering 100 full or partial scholarships apply today! https://t.co/sxETR2ejHa #patientchat |
 | GinaMcGalliard 🧜🏻♀️🌹🌕 @GinaMcGalliard @abrewi3010 Yes! Like #medx scholar participants me and Alan! Ask us anything. 😉 #PatientChat |
 | Ken Jaques (Jakes) 🇨🇦 💜 🦁🦉 @kenjaques RT @lisadbudzinski: This! 👇 👏👏👏✨💕✨ #PatientChat |
| David C. Norris, MD moved to Mastodon 🦣 @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! |
| Maggie Rogers @magthenomad RT @RarePOV: |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @michelerhee: @patientchat T5: @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 |
| Maggie Rogers @magthenomad 👏🏻🙌🏻 #patientchat |
| Ken Jaques (Jakes) 🇨🇦 💜 🦁🦉 @kenjaques RT @patientchat: The next Empowered #patientchat will be Friday, May 3rd https://t.co/6dR7ctK40Q Hope to see you there! |
| Lisa Davis Budzinski @lisadbudzinski RT @RarePOV: |
 | Jesse Hirsh @jessehirsh RT @mcintose: CT: CT: From @jessehirsh we have to improve the signal to noise ratio of scientific information. Improving knowledge translation and scientific/medical literacy can inform and empower pts and help advance care. One means of doing this is involving more pts in conferences #patientchat |
| Lydia L. Seiders @lseiders3 RT @RarePOV: |
| 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 |
| 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. |
 | Khrystal K. Davis, JD @KhrystalKDavis I don’t believe Industry stakeholders would want this constraint imposed by a conference organizer. |
#patientchat content from Twitter.