#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
– ().
See #patientchat Influencers/Analytics.
Profile | Tweet |
---|---|
![]() | Patient Chat @patientchat Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to empowered patients |
![]() | Patient Chat @patientchat The Empowered #patientchat is a project of @power4patients and @intakeme |
![]() | Christina Lizaso @btrfly12 RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp… |
![]() | Patient Chat @patientchat ICYMI: Read about @power4patients new role hosting Empowered #patientchat https://t.co/J2OUBUasbn |
![]() | Patient Empowerment Network @power4patients Hi, it's Andrea tweeting for PEN today. Looking forward to today's discussion! #patientchat |
![]() | Christina Lizaso @btrfly12 RT @patientchat: ICYMI: Read about @power4patients new role hosting Empowered #patientchat https://t.co/J2OUBUasbn |
![]() | Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
![]() | Patient Chat @patientchat Guest @HealthSparq is committed to helping people make smarter health care choices #patientchat |
![]() | Patient Chat @patientchat With their #WTFix conference on Jun 14 @HealthSparq is bringing everyone together to change health care for the better #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings. Mighty Casey here, #precisionmedicine activist/advocate. Will be pressing hard on #ses tribe(s) access 2 healthcare. #patientchat |
![]() | HealthSparq @HealthSparq Hello everyone! Thanks to @power4patients & @intakeme for having us on today's tweet chat. Look fwd to a great chat! #patientchat |
![]() | Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
![]() | Melissa VanHouten @melissarvh #Gastroparesis patient & advocate. #patientchat |
![]() | Patient Chat @patientchat We extend a special thank you to @darlakbrown and @btrfly12 for building and bringing the #patientchat community to where it is today |
@burtrosen Hi! burt from @HealthSparq here from #ATX and really excited for today's #patientchat | |
![]() | HealthSparq @HealthSparq @MightyCasey Hi Casey! Glad to have you today! #patientchat |
![]() | Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
![]() | Christina Lizaso @btrfly12 RT @patientchat: With their #WTFix conference on Jun 14 @HealthSparq is bringing everyone together to change health care for the better #pa… |
![]() | Patient Chat @patientchat Today's chat is solely informational & not a substitute for speaking w/ a doctor who's familiar w/your medical needs & history. #patientchat |
![]() | Christina Lizaso @btrfly12 Hi #patientchat - I'm passionate about community engagement and health. Previvor, mom, #gyncsm, #NSGCgenepool, @smart_patients cmty member |
![]() | CP Nerve Center @Cpnervecenter #patientchat Hi Everyone. I'm Becky from Central Pain Nerve Center |
![]() | Patient Empowerment Network @power4patients @patientchat We are thrilled to work with this amazing community to move #patientchat forward into the future! |
![]() | Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/iUIZmqVYfv #patientchat |
@burtrosen we are so excited about this! and its free for everyone, in person or online! URL is https://t.co/g2Om2rsMXX #patientchat #WTFix https://t.co/Vm5dsX3v3Z | |
![]() | Melissa VanHouten @melissarvh RT @patientchat: We extend a special thank you to @darlakbrown and @btrfly12 for building and bringing the #patientchat community to where… |
![]() | Alan Brewington @abrewi3010 Alan here. Just a #inflammatoryarthritis #chronicpain & #Mentalhealth Pt who uses #photography as a distraction. #patientchat https://t.co/Ev54dIYTJf |
![]() | Christina Lizaso @btrfly12 RT @burtrosen: we are so excited about this! and its free for everyone, in person or online! URL is https://t.co/g2Om2rsMXX… |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba Hello. I'm Shereese here in Maryland. #patientchat https://t.co/oDCYh07GYi |
@burtrosen @btrfly12 @smart_patients Moms, the true heroes of #healthcare! #patientchat | |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @HealthSparq We'll see if you come to reassess that statement ... =) #patientchat |
![]() | RichVsMultMyeloma @richvsmm Hai! Rich from https://t.co/w4yPagLnMR. Four-year and counting MM victim and NSFW blogger, thanks for ze invite. #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @richvsmm HAAAAAIIIIII!! #patientchat |
![]() | Patient Chat @patientchat Today's #patientchat topic is Finding Your Tribe https://t.co/BNQNXfkoKr |
![]() | Christina Lizaso @btrfly12 RT @patientchat: Today's #patientchat topic is Finding Your Tribe https://t.co/BNQNXfkoKr |
![]() | Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Finding Your Tribe https://t.co/BNQNXfkoKr |
![]() | Alert1 Medical Alert @Alert1MedAlert Hello #patientchat, Alert1 here. We provide medical alerts and peace of mind to seniors and caregivers. |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 Good afternoon all, Liz Kelly, both healthcare provider/nurse & patient, concerned for provider & patient roles, can they mix? #patientchat |
![]() | Patient Chat @patientchat I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful #patientchat |
![]() | RichVsMultMyeloma @richvsmm @MightyCasey Long time no Tweet! =) #patientchat |
![]() | HealthSparq @HealthSparq @Elizabe85727641 Hi Liz, always great to see you! #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba RT @patientchat: I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful… |
![]() | HealthSparq @HealthSparq @ShereesePubHlth Hi Shereese! So glad you could join us for this one - should be a great chat! #patientchat |
![]() | #GenCSM @GenC_SM RT @patientchat: Today's #patientchat topic is Finding Your Tribe https://t.co/BNQNXfkoKr |
![]() | Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert @HealthSparq Thank you! We're looking forward to this morning's chat! #patientchat |
![]() | Patient Chat @patientchat T1: How do you define a “tribe”? #patientchat |
@ .@patientchat I'm Kim and am on @patientslikeme Team of Advisors and @wegohealth patient leader. Also a participant in #WTFix #patientchat | |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @HealthSparq #ses = SOCIO-ECONOMIC STATUS. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @patientchat: T1: How do you define a “tribe”? #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 @ShereesePubHlth Greetings!😀 |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T1: How do you define a “tribe”? #patientchat |
![]() | HealthSparq @HealthSparq @MightyCasey So important! Thank you! #patientchat |
![]() | HealthSparq @HealthSparq RT @patientchat: T1: How do you define a “tribe”? #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: Tribe = community of common interest. Could arise anywhere, in any vertical or setting. #patientchat |
![]() | Alan Brewington @abrewi3010 T1 People that want a higher QOL and knowledge base than yesterday. Also want to smile bigger today than yesterday #patientchat |
@burtrosen @fireflyrn84 @patientchat @patientslikeme @wegohealth Excited to have you as part of #WTFix too! | |
![]() | HealthSparq @HealthSparq [REDACTED USER] Hi Annette! Excited to have you at #WTFix next week! #patientchat |
![]() | Amy Byer Shainman @BRCAresponder Hi #patientchat @BRCAresponder advocate for those with #BRCA and other #hereditarycancer syndromes |
@burtrosen T1: a group with shared goals, objectives and idea of how to get there #patientchat | |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba T1 A HC tribes a team of people who are passionate about HC issues & engaging to find solutions thru creativity & curiosity #patientchat |
![]() | HealthSparq @HealthSparq @fireflyrn84 @patientchat @patientslikeme @wegohealth So excited to get your #WhatTheHealthCare blog posted! Should be up later today!!! #patientchat #WTFix |
![]() | Patient Empowerment Network @power4patients A1: Tribe = community that comes together due to a shared interest or to achieve a common goal #patientchat |
@burtrosen @annmarie_otr @btrfly12 @smart_patients @_kos3 as soon as i typed that i realized i missed Dads. Yup, dads too! but since i'm a dad i can't go overboard giving us credit! #patientchat | |
![]() | Christina Lizaso @btrfly12 T1: hmmm Group space where members can be themselves. People feel safe to share dissent b/c have respect, common higher goals. #patientchat |
![]() | Melissa VanHouten @melissarvh T1 Group of people with common interests who share experiences and possibly goals and who endeavor to support each other. #patientchat |
![]() | Alan Brewington @abrewi3010 T1 ideally tribes care more about an individual vs traditional silos or social norms. #patientchat |
![]() | RichVsMultMyeloma @richvsmm T1 - A group of folks with an overwhelming commonality (i.e., cancer) linking us together. #patientchat |
![]() | HealthSparq @HealthSparq RT @ShereesePubHlth: T1 A HC tribes a team of people who are passionate about HC issues & engaging to find solutions thru creativity & curi… |
@burtrosen @annmarie_otr @HealthSparq @btrfly12 @smart_patients @_kos3 i love your bio quote, it's amazing! #patientchat | |
![]() | Alert1 Medical Alert @Alert1MedAlert T1: 'Tribe'= clan, community, family. A sense of togetherness and belonging. #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat T1 Your team. Personal, medical, psychological, family, friends & professional." It takes a Village " |
![]() | HealthSparq @HealthSparq T1. A tribe is a group of people that trust, respect & lean on one another, while sharing common goals, passions & dedication. #patientchat |
@ T1: My tribe has people with chronic illnesses or similar illnesses. We can be open and honest, no 'sunshine/roses required' #patientchat | |
![]() | Christina Lizaso @btrfly12 RT @fireflyrn84: T1: My tribe has people with chronic illnesses or similar illnesses. We can be open and honest, no 'sunshine/roses require… |
![]() | Alan Brewington @abrewi3010 RT @fireflyrn84: T1: My tribe has people with chronic illnesses or similar illnesses. We can be open and honest, no 'sunshine/roses require… |
![]() | Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T1 Tribe=group>follow rules routinely, self-identify by group rules, exclude others if not follow rules, are #1 not person #patientchat |
![]() | HealthSparq @HealthSparq @fireflyrn84 Yes! Honesty & understanding are so important in a good tribe! #patientchat |
![]() | Patient Chat @patientchat T2: How do you use your tribe to improve your health or the health of those you love? #patientchat |
![]() | Christina Lizaso @btrfly12 RT @patientchat: T2: How do you use your tribe to improve your health or the health of those you love? #patientchat |
![]() | HealthSparq @HealthSparq @BRCAresponder Hi Amy! Thanks for joining, great to have you today! #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba RT @patientchat: T2: How do you use your tribe to improve your health or the health of those you love? #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T2: How do you use your tribe to improve your health or the health of those you love? #patientchat |
![]() | HealthSparq @HealthSparq @MightyCasey Yes! So glad you registered for #WTFix! Really excited to have you participate! #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert Beautiful visualization! #patientchat https://t.co/ZAhU3npGcW |
![]() | Amy Byer Shainman @BRCAresponder #patientchat T 1 Tribe >>> I define as not necessarily shared interests. More>>shared life #Philosophy & similar quality of character. |
![]() | HealthSparq @HealthSparq [REDACTED USER] Beautifully put, Annette! ❤️ #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba T2 I use my tribe to promote the idea that w/o the patient voice in delivery, innovation, and regulation, there is no way! #patientchat |
![]() | Vera Rulon FAHIMA @vrulon #patientchat Hello everyone. Just joining now. I just started Tir Health LLC working on #healthylongevity #patientengagement #healthinfo |
![]() | Patient Empowerment Network @power4patients A2: It takes a village to raise a child and a tribe to navigate #cancer #patientchat |
![]() | RichVsMultMyeloma @richvsmm T2 - In my specific tribe (cancer), by sharing my experiences and taking on a proactive supportive role. #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T2 Tribe helpful for support if person =#1 not tribe's think, can also be source of information #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert T2: Tribes support the health of members with open communication channels and emotional support. #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: I use my tribe to build #healthliteracy, to help navigate an un-navigable system (US healthcare) + to spark #citizenscience #patientchat |
![]() | HealthSparq @HealthSparq RT @patientchat: T2: How do you use your tribe to improve your health or the health of those you love? #patientchat |
@burtrosen T2: no one knows all the answers, but together everyone knows most! #badenglish #thoughtthatcounts #LymeDisease #lyme #patientchat | |
![]() | Christina Lizaso @btrfly12 T2: We all seek connection. I use my tribes to help ppl - including myself - not feel alone and to find resources. #patientchat |
![]() | Lindsay Yale @lbuchele T2: My tribe is my fellow parents (ok, really, it's moms). We use each other constantly to gut-check and provide moral support! #patientchat |
![]() | Alan Brewington @abrewi3010 T2 the biggest thing with #patientchat & #hcsm with @danamlewis is fighting loneliness. I've been struggling with that lately. |
![]() | Vera Rulon FAHIMA @vrulon @power4patients I like that analogy #patientchat |
![]() | Christina Lizaso @btrfly12 T2: There's so much knowledge in our stories. I hope the stories and experiences of healthcare tribes can drive things forward. #patientchat |
![]() | Alan Brewington @abrewi3010 RT @btrfly12: T2: We all seek connection. I use my tribes to help ppl - including myself - not feel alone and to find resources. #patientc… |
![]() | Amy Byer Shainman @BRCAresponder RT @btrfly12: T2: There's so much knowledge in our stories. I hope the stories and experiences of healthcare tribes can drive things forwar… |
![]() | Christina Lizaso @btrfly12 RT @MightyCasey: A2: I use my tribe to build #healthliteracy, to help navigate an un-navigable system (US healthcare) + to spark #citizensc… |
![]() | CP Nerve Center @Cpnervecenter #patientchat T2 Research, educate, advocate. Everyone needs help at some point. Assess the situation & make a plan for yourself or others |
![]() | HealthSparq @HealthSparq T2. A tribe is a source of info, can listen w/o judgement, & shares new ideas/exp. that can help you or loved ones. #patientchat |
![]() | Melissa VanHouten @melissarvh A2 Many in group help by sharing experiences re treatments/issues. Improves general knowledge. Offers emotional support as well #patientchat |
![]() | Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
![]() | Alan Brewington @abrewi3010 T2 if a fellow patient feels alone or forgotten about they won't participate. They could be the key to better everything #patientchat |
![]() | Patient Empowerment Network @power4patients T2: A tribe can lift you up during the most difficult moments. A tribe says: "You've got this and we've got you!" #patientchat |
![]() | Patient Chat @patientchat T3: What health communities or tribes do you currently participate in? #patientchat |
![]() | Christina Lizaso @btrfly12 RT @HealthSparq: T2. A tribe is a source of info, can listen w/o judgement, & shares new ideas/exp. that can help you or loved ones. #patie… |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T3: What health communities or tribes do you currently participate in? #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert Great way to phrase it! #patientchat https://t.co/WuPcRqmbHT |
@ T2: compares notes on what has worked for them in the past, especially with side effects from meds. Also emotionally up/down #patientchat | |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba RT @patientchat: T3: What health communities or tribes do you currently participate in? #patientchat |
![]() | Vera Rulon FAHIMA @vrulon RT @power4patients: T2: A tribe can lift you up during the most difficult moments. A tribe says: "You've got this and we've got you!" #pati… |
![]() | HealthSparq @HealthSparq @abrewi3010 Yes! A potential source of understanding, inclusion & hope ❤️ #patientchat #pinksocks #WTFix |
![]() | Alan Brewington @abrewi3010 T2 for the record, males like myself want to be included. We feel lonely and alone in this too! #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat T3 Online & Social media tribes, friends, family, physicians, blogging. |
![]() | Christina Lizaso @btrfly12 T3: I love #patientchat #hcldr and the cancer chats on Twitter. Also love @smrt_patients I am stuck w/ a FB group for CHEK2 mutation- sigh. |
![]() | Christina Lizaso @btrfly12 T3: Healthcare communities come in all shapes and sizes - including anonymous. IRL good too. Find or create one for you :) #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T3 #Listening to friends with health issues, identifying #resources & information that support both patient & family. #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba T3 #BCSM #Healthxph #hcsm #hitsm #patientchat #homehealthchat #Gyncsm #saludtues |
![]() | Melissa VanHouten @melissarvh T3 #Gastroparesis community, #Advocacy groups, patient care & patient rights groups #patientchat |
![]() | Patient Empowerment Network @power4patients A3: We're big fans of @treatdiaries and, of course, we think this chat is an awesome tribe #patientchat |
![]() | Melissa VanHouten @melissarvh RT @btrfly12: T3: Healthcare communities come in all shapes and sizes - including anonymous. IRL good too. Find or create one for you :) #p… |
![]() | Amy Byer Shainman @BRCAresponder T3 #cancer #genetics #hereditarycancer #BRCA #HBOC #resources #support #womenshealth #menshealth #GenCSM #health #community #patientchat https://t.co/um6DMNDoM7 |
![]() | Christina Lizaso @btrfly12 T3: My twitter list of patient community platforms: https://t.co/qtoOweYH2O Any I'm missing? #patientchat |
![]() | Patient Empowerment Network @power4patients RT @btrfly12: T3: Healthcare communities come in all shapes and sizes - including anonymous. IRL good too. Find or create one for you :) #p… |
@ T3: @patientslikeme has been a HUGE source for helping me find multiple tribes as well as form offshoots.#patientchat | |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: #precisionmedicine #ctsm #curechat #rightcare #s4pm are my core tribes. Others as relevant at the time. #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert T3: We're glad to be part of the community here at #patientchat! |
@burtrosen RT @btrfly12: T3: Healthcare communities come in all shapes and sizes - including anonymous. IRL good too. Find or create one for you :) #p… | |
![]() | Patient Empowerment Network @power4patients RT @btrfly12: T3: My twitter list of patient community platforms: https://t.co/qtoOweYH2O Any I'm missing? #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat A3 Twitter chats like this have been an AMAZING RESOURCE and are IMMEDIATELY REWARDING. |
![]() | Christina Lizaso @btrfly12 RT @ShereesePubHlth: T3 #BCSM #Healthxph #hcsm #hitsm #patientchat #homehealthchat #Gyncsm #saludtues |
![]() | Alan Brewington @abrewi3010 T3 Due to recent events #hcsm & #patientchat are the only tribes I feel comfortable in. |
![]() | HealthSparq @HealthSparq RT @Elizabe85727641: T3 #Listening to friends with health issues, identifying #resources & information that support both patient & family.… |
![]() | RichVsMultMyeloma @richvsmm T3 - Cancer, with a focus on #mmsm, pt-oriented stuff like this chat, and I'm active as an advocate for pot legalization. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @fireflyrn84: T3: @patientslikeme has been a HUGE source for helping me find multiple tribes as well as form offshoots.#patientchat |
![]() | Christina Lizaso @btrfly12 RT @MightyCasey: A3: #precisionmedicine #ctsm #curechat #rightcare #s4pm are my core tribes. Others as relevant at the time. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon #patientchat @S4PM |
@burtrosen T3: #HITsm #HITmc #HCLDR #patientchat #LymeDisease #HCSM #pinksocks | |
![]() | HealthSparq @HealthSparq T3. Wow, so many amazing communities out there! Awesome to see! #patientchat |
![]() | Patient Chat @patientchat Topic 4 (T4:) coming up… #patientchat |
![]() | Alan Brewington @abrewi3010 T3 to often only the same 6 people go to the cool kids party/conference & forget about helping their fellow patients #patientchat |
![]() | Vera Rulon FAHIMA @vrulon [REDACTED USER] @GilmerHealthLaw @patientchat Interesting. The words we use can have impact both negative and positive. #patientchat |
![]() | Patient Chat @patientchat T4: How did your tribe help you trust them? What is needed to build trust in a tribe? #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T4: How did your tribe help you trust them? What is needed to build trust in a tribe? #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @S4PM Walking Gallery #patientchat |
![]() | Melissa VanHouten @melissarvh T4 By exercising kindness & empathy, welcoming me in convos & as a part of their lives, sharing stories, being authentic #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: First foray(s) into healthcare tribes = massive YMMV for me. Had to find like-minded, science-literate folks over time. #patientchat |
![]() | Ryan Everist @ryyyyyyan RT @burtrosen: we are so excited about this! and its free for everyone, in person or online! URL is https://t.co/g2Om2rsMXX… |
![]() | Christina Lizaso @btrfly12 Thanks @GilmerHealthLaw - always good to be reminded to mind our terms. #wordsmatter #patientchat |
![]() | Alan Brewington @abrewi3010 T4 despite the electronic nature of advocacy you still need a honest human connection to feel safe. #patientchat |
@burtrosen @abrewi3010 those people who miss the meaning of why we are here. Anyone who loses focus on people/patients shouldn't be in #healthcare #patientchat | |
@ T4: Similar experiences, common goals, a willing shoulder to lean on, and someone to be there day/night #patientchat | |
![]() | Christina Lizaso @btrfly12 RT @burtrosen: T3: #HITsm #HITmc #HCLDR #patientchat #LymeDisease #HCSM #pinksocks |
![]() | Patient Empowerment Network @power4patients A4: Trust is #1 important thing in any relationship, including a tribe or community, especially when it relates to your health. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon T4: LISTENING #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: Since then, now a tribal elder of sorts in #science literacy + #citizenscience tribe. Also, bullshit-calling mythbusters. #patientchat |
![]() | Alan Brewington @abrewi3010 RT @burtrosen: @abrewi3010 those people who miss the meaning of why we are here. Anyone who loses focus on people/patients shouldn… |
![]() | Alan Brewington @abrewi3010 @burtrosen I agree!!!!!!!! #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert T4: Mutual understanding and respect go a long way towards building trust. #patientchat |
![]() | Christina Lizaso @btrfly12 T4: TRANSPARENCY is huge for me. My red flags go up big time if sense it is lacking. Also, a special mindfulness re: newbies. #patientchat |
@burtrosen T3: i do lots of tweet chats but this is far and away the most real, human, emotional and inspiring. and im not blowing smoke #patientchat | |
![]() | Melissa VanHouten @melissarvh T4 Must be sense of inclusion, forgiveness, understanding, open-mindedness, & willingness to discuss all matters/perspectives. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @melissarvh: T4 Must be sense of inclusion, forgiveness, understanding, open-mindedness, & willingness to discuss all matters/perspectiv… |
![]() | Amy Byer Shainman @BRCAresponder T4 #authentic human interaction #reciprocity #patientchat https://t.co/8rhyAnrvN5 |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T4 Time & shared life experiences built trust between us>community feeling>flexibility to respond to person & their situation #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: My YMMV sitch was people in patient community trying to force me to mirror their own tx journey. THAT'S #fail. I moved on. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @GilmerHealthLaw @btrfly12 Agreed. What word should be used? #patientchat |
@burtrosen @GilmerHealthLaw @btrfly12 don't give up on those who are. they will make the real change. respect and empathy are rare, but will make a difference #patientchat | |
![]() | Melissa VanHouten @melissarvh RT @Elizabe85727641: T4 Time & shared life experiences built trust between us>community feeling>flexibility to respond to person & their si… |
![]() | HealthSparq @HealthSparq RT @melissarvh: T4 Must be sense of inclusion, forgiveness, understanding, open-mindedness, & willingness to discuss all matters/perspectiv… |
![]() | Kandi Yarberry Mealy @KandiYarberry RT @Elizabe85727641: T4 Time & shared life experiences built trust between us>community feeling>flexibility to respond to person & their si… |
![]() | CP Nerve Center @Cpnervecenter #patientchat A4 Good tribal relations take Time, Patience, Effort, Consistency & Trust. We ALL have something to offer. |
![]() | Patient Chat @patientchat Topic 5 (T5:) coming up... #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @btrfly12 interesting that healthcare system has so little transparency in many respects #patientchat |
![]() | RichVsMultMyeloma @richvsmm T4 - In an online community like cancer pts, there's no ulterior motive to cause mistrust. It's just folks reaching out (1/2) #patientchat |
@ T4: everyone is equal; nobody is better than the others. That is a MUST #patientchat | |
![]() | Patient Chat @patientchat T5: Are there certain situations where you tend to trust your community more than your doctor? #patientchat |
![]() | RichVsMultMyeloma @richvsmm T4 - (2/2) and others responding in a supportive manner. #patientchat |
![]() | Alan Brewington @abrewi3010 .Forgiveness is forgotten about online to often bc it doesn't generate 'likes' like hatred does. #patientchat https://t.co/r0RCZuPPLS |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: As recovering #journo, I'm "trust but verify" on ALL OF THE THINGS. Clinicians wind up calling me super patient 'cause 1/2 #patientchat |
![]() | HealthSparq @HealthSparq @fireflyrn84 Well said! Equality is key to building trust. #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: 2/2 I wind up bringing them info/studies/articles they hadn't seen relevant to my care. #s4pm 4 life =) #patientchat |
![]() | Patient Empowerment Network @power4patients RT @MightyCasey: T5: As recovering #journo, I'm "trust but verify" on ALL OF THE THINGS. Clinicians wind up calling me super patient 'cause… |
@ @btrfly12 .@btrfly12 tribes must be accepting of newbies...no 'eating our young' allowed #patientchat | |
![]() | Alan Brewington @abrewi3010 T5 I'm a moron when it comes to hard science but I understand the patient experience #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T5: Are there certain situations where you tend to trust your community more than your doctor? #patientchat |
![]() | Melissa VanHouten @melissarvh T5 Many. Find support groups have more (& often better) info & truly care about my well-being. Generally take their ideas 2 doc #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @patientchat This where TRANSPARENCY plays a role #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T5 All information has some relevancy, each also capable of making errors. Need to evaluate both information & its source. #patientchat |
![]() | Patient Empowerment Network @power4patients RT @Elizabe85727641: T5 All information has some relevancy, each also capable of making errors. Need to evaluate both information & its sou… |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5a: IMO, it's incumbent on #epatients who are resources for others to be 110% accountable for our recommendations/info. #patientchat |
![]() | Melissa VanHouten @melissarvh @abrewi3010 Unfortunately true sometimes, Mr. Brewington. I wish it were not so. #patientchat |
@burtrosen T5: my doctor is great but can't possibly know everything, my tribe (community) helps me question and learn new ways to help #patientchat | |
![]() | Christina Lizaso @btrfly12 T5: I trust my community to help me figure out the things I need to ask about that my doctor likely won't bring up. #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat A5 Unlike my doctor, my community knows exactly what CENTRAL PAIN SYNDROME feels like and what treatments REALLY work. |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey "trust but verify" EXACTLY =) #patientchat https://t.co/zMCQTNVzaV |
@ T5: with finding the sweet spot for my #IVIG, my tribe has more experience than them because the doc hasn't had the treatment #patientchat | |
![]() | Christina Lizaso @btrfly12 T5: I do my own research but cmty can help you see where your own care is maybe not following guidelines and you should ask why #patientchat |
![]() | Alan Brewington @abrewi3010 @melissarvh So do I! It's Alan by the way, Mr is my dad :) #patientchat |
![]() | Melissa VanHouten @melissarvh RT @btrfly12: T5: I do my own research but cmty can help you see where your own care is maybe not following guidelines and you should ask w… |
![]() | Patient Chat @patientchat Topic 6 (T6:) coming up… #patientchat |
@ T5: real life experiences vs textbook information. Until you've been there and done that, it doesn't matter how much you know #patientchat | |
![]() | Patient Empowerment Network @power4patients A5: To my tribe I am a real person with a family, interests & a LIFE but I'm not always treated that way in my Dr's office #patientchat |
![]() | Christina Lizaso @btrfly12 T5: Because of what is to be gained by cmty vs. doc, having science-based folks in your cmty so helpful. Always verify beyond #patientchat |
![]() | Mark Milligan @MarkMilliganDPT RT @burtrosen: T5: my doctor is great but can't possibly know everything, my tribe (community) helps me question and learn new ways to help… |
![]() | Patient Chat @patientchat T6: What are some tips and resources to help patients who don't have a community build one or find one? #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T6: What are some tips and resources to help patients who don't have a community build one or find one? #patientchat |
![]() | Melissa VanHouten @melissarvh T6 Do online search & consider Facebook or other online support groups. Test many out until you find good fit. Observe 4 a bit. #patientchat |
![]() | Own Your Health @OwnYourHealthWA RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp… |
![]() | HealthSparq @HealthSparq RT @patientchat: T6: What are some tips and resources to help patients who don't have a community build one or find one? #patientchat |
![]() | Amy Byer Shainman @BRCAresponder T 5 #Feedback #BRCA #hereditarycancer community> always seems to be more in tune w/aftermath of prophylactic surgeries. #GenCSM #patientchat https://t.co/8O4NgHa5xI |
![]() | Christina Lizaso @btrfly12 RT @patientchat: T6: What are some tips and resources to help patients who don't have a community build one or find one? #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A6: if on #some @healthhashtags. Locally/nationally, look for patient support communities related to condition(s). #patientchat |
![]() | Patient Empowerment Network @power4patients RT @melissarvh: T6 Do online search & consider Facebook or other online support groups. Test many out until you find good fit. Observe 4 a… |
@ T6: the most simple of tribes is your friends/family, then extend it from there. You need someone to trust and vent to #patientchat | |
![]() | Patient Empowerment Network @power4patients RT @MightyCasey: A6: if on #some @healthhashtags. Locally/nationally, look for patient support communities related to condition(s). #patien… |
![]() | Patient Empowerment Network @power4patients RT @fireflyrn84: T6: the most simple of tribes is your friends/family, then extend it from there. You need someone to trust and vent to #pa… |
![]() | HealthSparq @HealthSparq T6. Twitter has been an amazing resource, but visiting each group (lurking) to see which one feels right is key. #patientchat |
![]() | Melissa VanHouten @melissarvh T6 Check for groups or meetings with nonprofits or medical associations in your area of interest. Build what you cannot find. #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert T6: Online searches and social media are great places to start when looking for a community. #patientchat |
![]() | Patient Chat @patientchat RT @HealthSparq: T6. Twitter has been an amazing resource, but visiting each group (lurking) to see which one feels right is key. #patientc… |
![]() | Vera Rulon FAHIMA @vrulon @melissarvh It amazing how many people you can find online who share experiences #patientchat |
![]() | HealthSparq @HealthSparq T6. Remember you don't always have to participate, you can investigate & check things out before jumping in on conversations! #patientchat |
@burtrosen T6: try hashtags on twitter, everythings been discussed at some point. then see who's used it, reach out to them and youre off! #patientchat | |
![]() | Christina Lizaso @btrfly12 T6: #FF this list of healthcare communicators and community builders https://t.co/tFk4ubZB6b :) #patientchat |
![]() | Melissa VanHouten @melissarvh RT @vrulon: @melissarvh It amazing how many people you can find online who share experiences #patientchat |
![]() | Melissa VanHouten @melissarvh RT @burtrosen: T6: try hashtags on twitter, everythings been discussed at some point. then see who's used it, reach out to them and youre o… |
![]() | Amy Byer Shainman @BRCAresponder T6 If on twitter...search hashtag of your issue/scope out reliable resources & handles >>>@theNCI @CDC_Cancer @DrKhouryCDC #patientchat https://t.co/JO73nhlXzr |
![]() | Christina Lizaso @btrfly12 T6: Seek out what is already out there. Check @symplur for healthcare chat communities. Try more than one. #patientchat |
![]() | Alan Brewington @abrewi3010 T5 look to build friendships, not advocacy associates. Trust is important. Be a patient, not a social media darling #patientchat |
![]() | Christina Lizaso @btrfly12 [REDACTED USER] agreed! #patientchat |
![]() | HealthSparq @HealthSparq T6. Its also surprising how welcoming & caring people are. Reach out to them over social media for advice, help. #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T6 First, trust oneself, what know/experience, seek information from a variety of sources-Ex: women & not having heart disease #patientchat |
![]() | Christina Lizaso @btrfly12 T6: If building, work together w/ other advocates and groups. Include healthcare professionals too when you can. #patientchat |
![]() | Patient Empowerment Network @power4patients .@HealthSparq We absolutely agree! #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba RT @btrfly12: T6: If building, work together w/ other advocates and groups. Include healthcare professionals too when you can. #patientchat |
![]() | Patient Chat @patientchat RT @HealthSparq: T6. Remember you don't always have to participate, you can investigate & check things out before jumping in on conversatio… |
![]() | Vera Rulon FAHIMA @vrulon twitter is great as a start but difficult to have in depth dialogue #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat A6 Use several different search engines to find all kinds of specific health topic communities then JUMP IN with both feet! |
![]() | Patient Chat @patientchat RT @btrfly12: T6: If building, work together w/ other advocates and groups. Include healthcare professionals too when you can. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @btrfly12 almost like creating your own "board of advisors" #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba @btrfly12 @symplur And great support groups that have on-line components, i.e @MyHealthTeams or facebook HC groups #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 |
![]() | Amy Byer Shainman @BRCAresponder RT @btrfly12: T6: Seek out what is already out there. Check @symplur for healthcare chat communities. Try more than one. #patientchat |
![]() | Alan Brewington @abrewi3010 T6 pick your battles wisely. I'm horrible at this & that turned me into a giant ahole to multiple community leaders. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @patientchat #patientchat trust and transparency - build friendships - seek your community via friends, family, online |
@ T6: med offices have a huge arsenal of resources for getting patients off to a start. Simple searches online will help too #patientchat | |
![]() | Patient Chat @patientchat Glad you could make it! #patientchat https://t.co/P6x93ZQyJn |
![]() | Christina Lizaso @btrfly12 @fireflyrn84 do they? I find them lacking in pointing people to patient communities.... #patientchat |
![]() | HealthSparq @HealthSparq CT: Reminded of how amazing & powerful all of you here in #patientchat are! Thank you for so many great thoughts & inspiration! |
![]() | Amy Byer Shainman @BRCAresponder CT: #patientchat Reminded that good people and support is within reach. https://t.co/gWzXtcb4Gk |
![]() | Alan Brewington @abrewi3010 CT Huge thank you to @darlakbrown & @danamlewis for creating communities around the idea of "how might we...?" #hcsm #patientchat |
![]() | Vera Rulon FAHIMA @vrulon [REDACTED USER] Yes! Twitter is a great start to finding your community #patientchat |
![]() | Patient Chat @patientchat RT @HealthSparq: CT: Reminded of how amazing & powerful all of you here in #patientchat are! Thank you for so many great thoughts & inspira… |
![]() | RichVsMultMyeloma @richvsmm T6 - Google searches and hashtag hunts. The tribes are out there, you just have to go find them. #patientchat |
![]() | Patient Empowerment Network @power4patients CT: Ask for help. No one can or should face cancer alone. Lean on your tribe, they will support you. #patientchat |
![]() | Christina Lizaso @btrfly12 In fact, love to see someone take up project of a patient community crowd-built master list... :) #patientchat |
![]() | HealthSparq @HealthSparq [REDACTED USER] Hi Stacey! Thanks for joining! #patientchat |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 CT Importance of words used, can be a barrier to what people think, their response. Welcome other understandings & use. #patientchat |
![]() | Christina Lizaso @btrfly12 CT: Brava Kara and @power4patients :) Thanks for all you do to support patient communities and patient empowerment. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @power4patients: CT: Ask for help. No one can or should face cancer alone. Lean on your tribe, they will support you. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @abrewi3010: CT Huge thank you to @darlakbrown & @danamlewis for creating communities around the idea of "how might we...?" #hcsm #patie… |
![]() | Christina Lizaso @btrfly12 RT @BRCAresponder: CT: #patientchat Reminded that good people and support is within reach. https://t.co/gWzXtcb4Gk |
![]() | Alan Brewington @abrewi3010 CT never compromise your patient story, no matter who or what is putting pressure on you. To many "advocates" want conformity #patientchat |
![]() | Melissa VanHouten @melissarvh CT Do not be too proud or afraid to seek help & advice. It is there if you look hard enough & long enough. #patientchat |
@burtrosen CT: again, one of the most inspiring, real and human chats out here. I am so glad to be able to participate with amazing peeps! #patientchat | |
![]() | Patient Empowerment Network @power4patients @btrfly12 Right back at ya! #patientchat |
![]() | CP Nerve Center @Cpnervecenter #patientchat CT Thanks everyone for sharing simple ways to connect, learn from & engage with one another. GREAT CHAT! |
![]() | Christina Lizaso @btrfly12 CT: Thank you @HealthSparq for working to bring together all those who care about making an impact in healthcare! #patientchat |
![]() | Melissa VanHouten @melissarvh Thank you so much for allowing me to join in another fabulous chat! #patientchat |
![]() | Christina Lizaso @btrfly12 RT @abrewi3010: CT never compromise your patient story, no matter who or what is putting pressure on you. To many "advocates" want conformi… |
![]() | Amy Byer Shainman @BRCAresponder CT: #patientchat Thank you for the great #Tweetchat |
@ CT: ultimately we are all human and have similar needs; we all can lean on each other. Empathy is a core value for everything #patientchat | |
![]() | Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime |
![]() | Patient Chat @patientchat Thanks so much @HealthSparq for sharing your insights and working towards driving smarter health care #patientchat |
![]() | Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. #patientchat |
![]() | Christina Lizaso @btrfly12 RT @fireflyrn84: CT: ultimately we are all human and have similar needs; we all can lean on each other. Empathy is a core value for everyth… |
![]() | Patient Chat @patientchat Don't forget to register for the free, online or in-person #WTFix conference Jun 14 https://t.co/7u1vOChq8l #patientchat |
@burtrosen @btrfly12 @HealthSparq thanks for working with us to make it happen! you are amazing building the community that you have. thanks to you! #patientchat | |
![]() | KNB Communications @KNBComm Great point! Also try looking at @HealthUnion communities - fantastic. #patientchat https://t.co/NYNtH274ie |
![]() | HealthSparq @HealthSparq @patientchat Thank you for having us & for continuing this amazing chat! #patientchat |
![]() | Patient Chat @patientchat Empowered #patientchat schedule note: The remaining summer chats will be once/month on first Fridays at 1pmET. |
![]() | Melissa VanHouten @melissarvh RT @patientchat: Don't forget to register for the free, online or in-person #WTFix conference Jun 14 https://t.co/7u1vOChq8l #patientchat |
![]() | Melissa VanHouten @melissarvh RT @patientchat: Empowered #patientchat schedule note: The remaining summer chats will be once/month on first Fridays at 1pmET. |
![]() | Vera Rulon FAHIMA @vrulon @patientchat Thank you! Very good chat. I'll be back!!! #patientchat |
![]() | Christina Lizaso @btrfly12 You can catch more @HealthSparq next week on #WegoHealthChat and then their #WTFix Conference. Come along :) #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: All involved in healthcare tribes owe each other accountability, kindness, and full transparency. #s4pm #citizenscience #patientchat |
![]() | Christina Lizaso @btrfly12 RT @MightyCasey: CT: All involved in healthcare tribes owe each other accountability, kindness, and full transparency. #s4pm #citizenscienc… |
![]() | Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
![]() | Christina Lizaso @btrfly12 RT @patientchat: Don't forget to register for the free, online or in-person #WTFix conference Jun 14 https://t.co/7u1vOChq8l #patientchat |
![]() | Patient Empowerment Network @power4patients Thanks everyone for a great chat! Looking forward to the next one, until then pls let us know how we can help you #BeEmpowered #patientchat |
![]() | Alert1 Medical Alert @Alert1MedAlert CT: It's great to have this community here on Twitter. #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
![]() | Christina Lizaso @btrfly12 RT @melissarvh: CT Do not be too proud or afraid to seek help & advice. It is there if you look hard enough & long enough. #patientchat |
![]() | HealthSparq @HealthSparq So lucky to have #patientchat host us this morning for a fantastic chat! Thank you @patientchat @power4patients for all you do! https://t.co/q1fNEn25OT |
![]() | RichVsMultMyeloma @richvsmm Thanks for hosting and for the invite. Feels good to be on the grassroots side of this stuff ... one might say "tribal!" =) #patientchat |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba Have a great weekend everyone #patientchat https://t.co/wcFnHOFfck |
![]() | Patient Chat @patientchat You can read about @power4patients new role hosting Empowered #patientchat here: https://t.co/J2OUBUasbn |
![]() | Nonye Tochi Aghanya Msc. RN. FNP-C @nonyet777 #patientchat Best communication tools for developing effective clinician-patient relationship https://t.co/9FKiOjzsO6 |
![]() | Christina Lizaso @btrfly12 If you ask... a hard thing for pts to know what to ask sometimes - before they get to their cmty #patientchat https://t.co/DoFVl6pcM2 |
![]() | Patient Empowerment Network @power4patients Thanks so much, we're honored! @HealthSparq @patientchat #patientchat |
![]() | Nonye Tochi Aghanya Msc. RN. FNP-C @nonyet777 #patientchat Sorry I got in late! Got the chat timing wrong from Alexandria:-). A clinician who has also been a patient...bit.ly/2rLA3R |
@ @btrfly12 Totally agree, it's intimidating at first, but after multiple chronic illnesses and being your own advocate, it gets easier #patientchat | |
![]() | Nonye Tochi Aghanya Msc. RN. FNP-C @nonyet777 #patientchat As a clinician, wrote a Great book on developing effective clinician-pattient relationship https://t.co/qvm4MiLQ6x |
![]() | Christina Lizaso @btrfly12 @nonyet777 glad you are here. Next chat will be on July 7th 10am PST | 1pm EST #patientchat |
![]() | Nonye Tochi Aghanya Msc. RN. FNP-C @nonyet777 RT @power4patients: Thanks everyone for a great chat! Looking forward to the next one, until then pls let us know how we can help you #BeEm… |
![]() | Nonye Tochi Aghanya Msc. RN. FNP-C @nonyet777 RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
@ @btrfly12 Would be willing to take on that challenge with a team! #patientchat | |
@ @btrfly12 Hmm, what about another shot at it? It would be a huge resource to have, even be able to break it down by disease #patientchat |
