#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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 @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 Casey Quinlan @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 @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 @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 @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…
HealthSparq @HealthSparq
RT @burtrosen: we are so excited about this! and its free for everyone, in person or online! URL is https://t.co/g2Om2rsMXX…
ShereeseM, MS/MBA @ShereesePubHlth
Hello. I'm Shereese here in Maryland. #patientchat https://t.co/oDCYh07GYi
burtrosen @burtrosen
@btrfly12 @smart_patients Moms, the true heroes of #healthcare! #patientchat
Mighty Casey Quinlan @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 Casey Quinlan @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
Lindsay Yale @lbuchele
Yes! So many incredible people whose stories can really change the way we problem-solve in health care. https://t.co/xvUJPLBAfL
Patient Empowerment @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
AnnMarie Murphy, OTD, OTR/L @annmarie_otr
Hey all! Ann here from NJ #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
ShereeseM, MS/MBA @ShereesePubHlth
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
Kimberly Amelia @fireflyrn84
.@patientchat I'm Kim and am on @patientslikeme Team of Advisors and @wegohealth patient leader. Also a participant in #WTFix #patientchat
Mighty Casey Quinlan @MightyCasey
@HealthSparq #ses = SOCIO-ECONOMIC STATUS. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T1: How do you define a “tribe”? #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: How do you define a “tribe”? #patientchat
Annette McKinnon @anetto
Hi, Annette here in Toronto. Patient and gadfly. #Patientsincluded #patientvoice #patientchat
HealthSparq @HealthSparq
@MightyCasey So important! Thank you! #patientchat
HealthSparq @HealthSparq
RT @patientchat: T1: How do you define a “tribe”? #patientchat
Mighty Casey Quinlan @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
HealthSparq @HealthSparq
@anetto Hi Annette! Excited to have you at #WTFix next week! #patientchat
AnnMarie Murphy, OTD, OTR/L @annmarie_otr
@HealthSparq @burtrosen @btrfly12 @smart_patients @_kos3 Yes. Especially because his children are now all in their 20s haha mom and dad always there for support when needed! #patientchat
Amy Byer Shainman @BRCAresponder
Hi #patientchat @BRCAresponder advocate for those with #BRCA and other #hereditarycancer syndromes
burtrosen @burtrosen
T1: a group with shared goals, objectives and idea of how to get there #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
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 @power4patients
A1: Tribe = community that comes together due to a shared interest or to achieve a common goal #patientchat
burtrosen @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
AnnMarie Murphy, OTD, OTR/L @annmarie_otr
@burtrosen @btrfly12 @smart_patients @_kos3 Haha spoken like a true dad! #patientchat
Annette McKinnon @anetto
T1 My tribe has interests that are similar or tangential to mine. Plus they want to change things in healthcare #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 @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
Christina Lizaso @btrfly12
RT @melissarvh: T1 Group of people with common interests who share experiences and possibly goals and who endeavor to support each other. #…
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
Kimberly Amelia @fireflyrn84
T1: My tribe has people with chronic illnesses or similar illnesses. We can be open and honest, no 'sunshine/roses required' #patientchat
Patient Chat @patientchat
RT @HealthSparq: T1. A tribe is a group of people that trust, respect & lean on one another, while sharing common goals, passions & dedicat…
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…
Annette McKinnon @anetto
T1 My definition of tribe shifts depending on who I am with. #arthritis tribe, #patientvoice tribe #patientsinresearch tribe #patientchat
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
Alan Brewington @abrewi3010
RT @HealthSparq: T1. A tribe is a group of people that trust, respect & lean on one another, while sharing common goals, passions & dedicat…
Christina Lizaso @btrfly12
RT @HealthSparq: T1. A tribe is a group of people that trust, respect & lean on one another, while sharing common goals, passions & dedicat…
Annette McKinnon @anetto
T1 Cancer can be quite similar to chronic illness. #patientchat
AnnMarie Murphy, OTD, OTR/L @annmarie_otr
@burtrosen @HealthSparq @btrfly12 @smart_patients @_kos3 Thanks! I had to write a teaching philosophy in one of my courses - wrote it as something I plan to tell my future students #patientchat
Annette McKinnon @anetto
T1 My tribe has a big tent, there's room for lots of people #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
Nigel H @Crohnoid
T1 Hi from the UK. My tribe, in this context, is anyone suffering from #IBD or #BAM or who wants to get the best as a patient #patientchat
AnnMarie Murphy, OTD, OTR/L @annmarie_otr
@burtrosen @HealthSparq @btrfly12 @smart_patients @_kos3 Everyone should aim for their fullest potential. If you don't raise your own bar how can you know what that is! #patientchat
HealthSparq @HealthSparq
@BRCAresponder Hi Amy! Thanks for joining, great to have you today! #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T2: How do you use your tribe to improve your health or the health of those you love? #patientchat
Patient Empowerment @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
@anetto Beautifully put, Annette! ❤️ #patientchat
Christina Lizaso @btrfly12
RT @BRCAresponder: #patientchat T 1 Tribe >>> I define as not necessarily shared interests. More>>shared life #Philosophy & similar qual…
ShereeseM, MS/MBA @ShereesePubHlth
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 @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 Casey Quinlan @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 @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
Nigel H @Crohnoid
T2 The sharing of information, could be new research or new resources. But also the sharing one's feelings and getting support #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
HealthSparq @HealthSparq
RT @MightyCasey: A2: I use my tribe to build #healthliteracy, to help navigate an un-navigable system (US healthcare) + to spark #citizensc
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…
Annette McKinnon @anetto
T2 One tribe is @patientadvisors- community of practice for patients. Great to share tips and advice for change in CDN health #patientchat
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
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T2 One tribe is @patientadvisors- community of practice for patients. Great to share tips and advice for change in CDN health #…
Christina Lizaso @btrfly12
RT @Crohnoid: T2 The sharing of information, could be new research or new resources. But also the sharing one's feelings and getting suppor…
Nigel H @Crohnoid
T2 It's also a reassurance thing when you can empathise with other patients as you have a common experience #patientchat
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 @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 @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
HealthSparq @HealthSparq
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
Kimberly Amelia @fireflyrn84
T2: compares notes on what has worked for them in the past, especially with side effects from meds. Also emotionally up/down #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
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
Nigel H @Crohnoid
T2 Certainly the sharing of the experience of new procedures that we undergo as we travel through our patient "career" #patientchat
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
Erin Gilmer @GilmerHealthLaw
@patientchat Going to leave this here for #patientchat https://t.co/BGoF3D1Vqa
ShereeseM, MS/MBA @ShereesePubHlth
T3 #BCSM #Healthxph #hcsm #hitsm #patientchat #homehealthchat #Gyncsm #saludtues
Annette McKinnon @anetto
T3 #WMTY17 #hcsm #hcldr #rheum #womeninscience #ONhealth @pacerinnovates @sjogrensca @capa_arthritis #APAB and an old Yahoo grp #patientchat
Melissa VanHouten @melissarvh
T3 #Gastroparesis community, #Advocacy groups, patient care & patient rights groups #patientchat
Patient Empowerment @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 @power4patients
RT @btrfly12: T3: Healthcare communities come in all shapes and sizes - including anonymous. IRL good too. Find or create one for you :) #p
Kimberly Amelia @fireflyrn84
T3: @patientslikeme has been a HUGE source for helping me find multiple tribes as well as form offshoots.#patientchat
Mighty Casey Quinlan @MightyCasey
A3: #precisionmedicine #ctsm #curechat #rightcare #s4pm are my core tribes. Others as relevant at the time. #patientchat
Christina Lizaso @btrfly12
RT @power4patients: A3: We're big fans of @treatdiaries and, of course, we think this chat is an awesome tribe #patientchat
Alert1 Medical Alert @alert1medalert
T3: We're glad to be part of the community here at #patientchat!
burtrosen @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 @power4patients
RT @btrfly12: T3: My twitter list of patient community platforms: https://t.co/qtoOweYH2O Any I'm missing? #patientchat
DNAvid @davidweisss
RT @BRCAresponder: T3 #cancer #genetics #hereditarycancer #BRCA #HBOC #resources #support #womenshealth #menshealth #GenCSM #health
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
HealthSparq @HealthSparq
RT @patientchat: T3: What health communities or tribes do you currently participate in? #patientchat
Christina Lizaso @btrfly12
RT @MightyCasey: A3: #precisionmedicine #ctsm #curechat #rightcare #s4pm are my core tribes. Others as relevant at the time. #patientchat
Annette McKinnon @anetto
@GilmerHealthLaw @patientchat In fact tribe is not the first word I would choose to describe communities of interests #patientchat
Vera Rulon FAHIMA @vrulon
#patientchat @S4PM
burtrosen @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
@anetto @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
Richard Harris @doobarz
@patientchat T1 Tribe is those with similar conditions/ treatment plans i.e. IBD or Ostomy for me #patientchat
Patient Empowerment @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
Richard Harris @doobarz
T2 learn from there experiences and share my own, ask questions, find and give support - online and IRL #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 Casey Quinlan @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 @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
Fred Watters @freddwatters
RT @GilmerHealthLaw: @patientchat Going to leave this here for #patientchat https://t.co/BGoF3D1Vqa
Kimberly Amelia @fireflyrn84
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 @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 Casey Quinlan @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…
Nigel H @Crohnoid
T4 By being open and honest and not judging. No topic is off bounds and there is no abuse. Twitter much better than FB for this #patientchat
Alan Brewington @abrewi3010
@burtrosen I agree!!!!!!!! #patientchat
Richard Harris @doobarz
T3 Several FB groups inc @GetYourBellyOut @ToiletMeAndIBD and @CrohnsColitisUK and @iasupport forum #patientchat
Alert1 Medical Alert @alert1medalert
T4: Mutual understanding and respect go a long way towards building trust. #patientchat
Erin Gilmer @GilmerHealthLaw
@btrfly12 I think we all have good hearts but I see this word more and more and I'm not sure it's respectful 💜 #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 @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
Richard Harris @doobarz
T3 I also created @IBDHour #IBDHour as a monthly twitter based event #patientchat
PatientVoicesNetwork @PatientVoicesBC
Hey, @btrfly12! We're a community of #pts, families & caregivers working w/ #healthcare partners to improve #bchc https://t.co/O81dFWSkW8 https://t.co/6CAPMwxPHZ
Melissa VanHouten @melissarvh
T4 Must be sense of inclusion, forgiveness, understanding, open-mindedness, & willingness to discuss all matters/perspectives. #patientchat
Christina Lizaso @btrfly12
RT @doobarz: T3 I also created @IBDHour #IBDHour as a monthly twitter based event #patientchat
Christina Lizaso @btrfly12
RT @melissarvh: T4 Must be sense of inclusion, forgiveness, understanding, open-mindedness, & willingness to discuss all matters/perspectiv…
Richard Harris @doobarz
T3 Also attend @CrohnsColitisBS events in real life #patientchat
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
Erin Gilmer @GilmerHealthLaw
@btrfly12 Also impt I think given that sometimes our chats aren't as diverse as they could be.Need to consult the community most affected #patientchat
Mighty Casey Quinlan @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 @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…
Annette McKinnon @anetto
RT @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…
Kandi Yarberry @kandiyarberry
RT @Elizabe85727641: T4 Time & shared life experiences built trust between us>community feeling>flexibility to respond to person & their si…
Patient Empowerment @power4patients
RT @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 smok…
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
Erin Gilmer @GilmerHealthLaw
@vrulon @btrfly12 I like community as the term 💜 #patientchat
Annette McKinnon @anetto
@vrulon @GilmerHealthLaw @btrfly12 community #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
Kimberly Amelia @fireflyrn84
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
Nigel H @Crohnoid
T4 Also needs all to respect that each of us may have different views and experiences but all are valid #patientchat
Christina Lizaso @btrfly12
RT @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
Christina Lizaso @btrfly12
RT @Cpnervecenter: #patientchat A4 Good tribal relations take Time, Patience, Effort, Consistency & Trust. We ALL have something to offer.
Christina Lizaso @btrfly12
RT @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…
Alan Brewington @abrewi3010
.Forgiveness is forgotten about online to often bc it doesn't generate 'likes' like hatred does. #patientchat https://t.co/r0RCZuPPLS
HealthSparq @HealthSparq
RT @patientchat: T5: Are there certain situations where you tend to trust your community more than your doctor? #patientchat
Mighty Casey Quinlan @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
Annette McKinnon @anetto
T4 My community does not sell my information to anyone. #patientchat
HealthSparq @HealthSparq
@fireflyrn84 Well said! Equality is key to building trust. #patientchat
Mighty Casey Quinlan @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 @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…
Kimberly Amelia @fireflyrn84
@btrfly12 .@btrfly12 tribes must be accepting of newbies...no 'eating our young' allowed #patientchat
Nigel H @Crohnoid
T5 Not so much not trusting but doctors don't always know the finer detail of living with a particular condition. Tribe useful #patientchat
Alan Brewington @abrewi3010
T5 I'm a moron when it comes to hard science but I understand the patient experience #patientchat
Patient Empowerment @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
Annette McKinnon @anetto
T5 My friends have a huge fund of practical experience. Especially in uncommon disease Drs can have very little hands on info #patientchat
Christina Lizaso @btrfly12
RT @anetto: T5 My friends have a huge fund of practical experience. Especially in uncommon disease Drs can have very little hands on info #…
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 @power4patients
RT @Elizabe85727641: T5 All information has some relevancy, each also capable of making errors. Need to evaluate both information & its sou…
Mighty Casey Quinlan @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 @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 Casey Quinlan @MightyCasey
"trust but verify" EXACTLY =) #patientchat https://t.co/zMCQTNVzaV
Kimberly Amelia @fireflyrn84
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
Nigel H @Crohnoid
T5 Because the tribe is national/international there may be knowledge of new tests that haven't filtered down to own doctor #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
Christina Lizaso @btrfly12
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…
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
Kimberly Amelia @fireflyrn84
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 @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 @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 Casey Quinlan @MightyCasey
A6: if on #some @healthhashtags. Locally/nationally, look for patient support communities related to condition(s). #patientchat
Christina Lizaso @btrfly12
RT @melissarvh: T6 Do online search & consider Facebook or other online support groups. Test many out until you find good fit. Observe 4 a…
Nigel H @Crohnoid
T6 I prefer Twitter as main communicator. Search for # relating to your condition and then watch for a few days then join in #patientchat
Annette McKinnon @anetto
T6 If you can't find a tweet chat you enjoy, start a new one, register it @symplur, and build a new community #patientchat
Patient Empowerment @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…
Kimberly Amelia @fireflyrn84
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 @power4patients
RT @MightyCasey: A6: if on #some @healthhashtags. Locally/nationally, look for patient support communities related to condition(s). #patien
Patient Empowerment @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
Patient Empowerment @power4patients
RT @melissarvh: T6 Check for groups or meetings with nonprofits or medical associations in your area of interest. Build what you cannot fin…
Vera Rulon FAHIMA @vrulon
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. Remember you don't always have to participate, you can investigate & check things out before jumping in on conversations! #patientchat
burtrosen @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
Annette McKinnon @anetto
T6 It's like politics. (but the good part of politics) You start locally and expand to international as your interests broaden #patientchat
Nigel H @Crohnoid
T6 I prefer Twitter as participants seem to be more thoughtful (maybe have to think to get to 140 chars). FB full of rants #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
@Crohnoid 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 @power4patients
.@HealthSparq We absolutely agree! #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
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!
Nigel H @Crohnoid
T6 ...and if you do post something you regret or get your facts wrong then say sorry. #patientchat
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
ShereeseM, MS/MBA @ShereesePubHlth
@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
Christina Lizaso @btrfly12
RT @Crohnoid: T6 ...and if you do post something you regret or get your facts wrong then say sorry. #patientchat
Nigel H @Crohnoid
@vrulon You can always ask someone if they mind you DMing them for a more in depth chat #patientchat
Patient Empowerment @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Christina Lizaso @btrfly12
RT @Cpnervecenter: #patientchat A6 Use several different search engines to find all kinds of specific health topic communities then JUMP IN…
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
Stacey Tinianov @coffeemommy
Looks like I stumbled into Twitter just in time for the last 10 minutes of #patientchat - please excuse my extra tweets!
Kimberly Amelia @fireflyrn84
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
@Crohnoid 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 @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
@coffeemommy 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
Stacey Tinianov @coffeemommy
Pretty much every side effect convo! MT @patientchat: T5: Certain situations where you trust your community more than your doc? #patientchat
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 @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 @power4patients
@btrfly12 Right back at ya! #patientchat
Patient Empowerment @power4patients
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
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
Kimberly Amelia @fireflyrn84
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 Empowerment @power4patients
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime
Stacey Tinianov @coffeemommy
CT: Whether virtual or F2F (or both), many ways to communicate w/ & learn from others in a similar boat. Seek out community! #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…
Nigel H @Crohnoid
CT If someone in your tribe helps you then thank them, publicly (if appropriate), Good feedback oils the wheels.... #patientchat
Christina Lizaso @btrfly12
RT @coffeemommy: CT: Whether virtual or F2F (or both), many ways to communicate w/ & learn from others in a similar boat. Seek out communit…
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 @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 Casey Quinlan @MightyCasey
CT: All involved in healthcare tribes owe each other accountability, kindness, and full transparency. #s4pm #citizenscience #patientchat
Nigel H @Crohnoid
CT Goodnight from UK. Off to ponder what happens next after yesterday's General Election! #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
burtrosen @burtrosen
and if anyone has any questions feel free to reach out to me or @HealthSparq https://t.co/wb4ys5F07U
HealthSparq @HealthSparq
RT @btrfly12: You can catch more @HealthSparq next week on #WegoHealthChat and then their #WTFix Conference. Come along :) #patientchat
Nigel H @Crohnoid
RT @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
Christina Lizaso @btrfly12
RT @Crohnoid: CT If someone in your tribe helps you then thank them, publicly (if appropriate), Good feedback oils the wheels.... #patientc
Patient Empowerment @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 @power4patients
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
burtrosen @burtrosen
RT @btrfly12: You can catch more @HealthSparq next week on #WegoHealthChat and then their #WTFix Conference. Come along :) #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
ShereeseM, MS/MBA @ShereesePubHlth
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 aghanya @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 @power4patients
Thanks so much, we're honored! @HealthSparq @patientchat #patientchat
nonye aghanya @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
Kimberly Amelia @fireflyrn84
@btrfly12 Totally agree, it's intimidating at first, but after multiple chronic illnesses and being your own advocate, it gets easier #patientchat
nonye aghanya @nonyet777
#patientchat As a clinician, wrote a Great book on developing effective clinician-pattient relationship https://t.co/qvm4MiLQ6x
Darla Brown @darlakbrown
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
Christina Lizaso @btrfly12
@nonyet777 glad you are here. Next chat will be on July 7th 10am PST | 1pm EST #patientchat
nonye aghanya @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 aghanya @nonyet777
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Kimberly Amelia @fireflyrn84
@btrfly12 Would be willing to take on that challenge with a team! #patientchat
Kimberly Amelia @fireflyrn84
@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
#patientchat content from Twitter.