#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners and advocates come to learn from each other and discuss topics of interest to empowered patients
Inspire @teaminspire
RT @patientchat: Welcome to #patientchat - where patients, care partners and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Melissa VanHouten @melissarvh
#Gastroparesis patient & advocate. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients tweeting from Austin, TX for today’s #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Welcome to #patientchat - where patients, care partners and advocates come to learn from each other and discuss topics of…
AutonomicRN© @AutonomicRN
Hey all, Kim from Wisconsin. #raredisease and patient journey advocate. RN turned full time patient. Blogger... #patientchat
AutonomicRN© @AutonomicRN
@melissarvh Hi Melissa! #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Inspire @teaminspire
Hello to #patientchat. John Novack here from healthcare social network Inspire.
AutonomicRN© @AutonomicRN
@teaminspire Hey John! #patientchat
Jamie Roger @JamieRoger8
Jamie, joining from a train on my way to Phil. for Rare Patient Advocacy Symposium, representing @SalemOaks looking forward to a great dialogue today #patientchat
Jeremy Murphy @jeremypmurphy
Hi #patientchat, I'm Jeremy, an asthmatic health/running coach in Lincoln, Nebraska. Happy to join. https://t.co/ZnOuILfn1Q
Jamie Holloway, PhD @jamienholloway
Hi I'm Jamie, breast cancer scientist, patient, and advocate. Love this topic but will have to sign out early for mom duties! #patientchat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Melissa VanHouten @melissarvh
@AutonomicRN Hello, Ms. Kim! #patientchat
Quin Turner @QuinlanTurner
@patientchat Afternoon, all. Quin from Boston here. Crohn's patient of 25 years. Looking forward to today's topic! #patientchat
Kevin Freiert @K_SalemOaks
Joining from Amtrak Acela on the way to Philly Looking forward to a f=good chat today. #patientchat https://t.co/ZaT5kA9FrB
Kevin J. Fowler @gratefull080504
@gratefull080504 checking in from Chicago President The Voice of the Patient #patientchat https://t.co/NRiOiPMGdQ
AutonomicRN© @AutonomicRN
@gratefull080504 Hi Kevin, haven't seen you for a while! #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. I'm Shereese, HCstrategist, contributing writer for @HCA_News, speaker on all things #HHealthIT, and dedicated advocate. Happy Friday #patientchat https://t.co/4g49a8h559
Jamie Holloway, PhD @jamienholloway
Starting now: #patientchat discussing the power of online patient communities! #bcsm #lcsm #mmsm #ayacsm #amsm #btsm #hcsm https://t.co/h70pC64Ktb
AutonomicRN© @AutonomicRN
@ShereesePubHlth @HCA_News Hey hey! #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Including The Power of Online Patient Communities https://t.co/BDMRaoH5zt #patientchat https://t.co/HoyRbnhMBq
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. I'm Shereese, HCstrategist, contributing writer for @HCA_News, speaker on all things #HealthIT , and dedicated advocate. Happy Friday #patientchat https://t.co/8d09W8tFVn
Beth Morton @beth_morton
Hello! I'm Beth, tweeting from Vermont. A chronic #migraine patient and advocate. #patientchat
Inspire @teaminspire
RT @patientchat: Today's #patientchat topic is Including The Power of Online Patient Communities https://t.co/BDMRaoH5zt #patientchat https…
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Jamie Roger @JamieRoger8
@ShereesePubHlth @HCA_News good to see you here, missed you on tuesday for #HTReads, i was just too tired this week for the normal Tuesday night lineup #patientchat
Patient Chat @patientchat
This chat was inspired by our new Empowered Patient Chat Facebook Group https://t.co/mXC40NIAo9 #patientchat
Becky Brandt RN @bbhomebody
Hi Im Becky RN, #intractablepain patient and advocate, Cofounder of @Cpnervecenter with my dynamo partner @lisadbudzinski #patientchat https://t.co/hlgeJAMOlm
Marie Ennis-O'Connor @JBBC
My favorite topic .. rushing to join #patientchat https://t.co/dZuPE1dVNj
AutonomicRN© @AutonomicRN
@bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky! #patientchat
Jamie Holloway, PhD @jamienholloway
@JBBC Hi Marie! #patientchat
AutonomicRN© @AutonomicRN
@beth_morton Hi Beth! #patientchat
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Jamie Roger @JamieRoger8
@beth_morton Good to see you here @beth_morton Hope this crazy weather hasn't been affecting your migraine's too much! #patientchat
Patient Empowerment @power4patients
So great to have so many familiar and new folks joining us today for this very special #patientchat
Alan Brewington @abrewi3010
Alan here. #patientchat
AutonomicRN© @AutonomicRN
@abrewi3010 Hi Alan! #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Amy Byer Shainman @BRCAresponder
RT @JBBC: My favorite topic .. rushing to join #patientchat https://t.co/dZuPE1dVNj
Becky Brandt RN @bbhomebody
@AutonomicRN Hey Kimmers🖑 #patientchat
Patient Chat @patientchat
T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Amy Byer Shainman @BRCAresponder
RT @patientchat: Today's #patientchat topic is Including The Power of Online Patient Communities https://t.co/BDMRaoH5zt #patientchat https…
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Heather McCullen @H_SalemOaks
Guess I do get to join for a bit. Flight delayed. #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 Hi Alan🖑 Long time no see. How u feeling? #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Patient Empowerment @power4patients
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Alan Brewington @abrewi3010
@AutonomicRN Hello 👋 #patientchat
Beth Morton @beth_morton
@JamieRoger8 Thanks! I'm hanging in. #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@abrewi3010 Hi Alan! It’s your buddy Gina! #patientchat
Melissa VanHouten @melissarvh
T1 Information, interaction, support, love, & encouragement. My favorite? My #Gastroparesis Support Group, of course: https://t.co/jtwetUFjCx #CureGP #PatientChat https://t.co/GCnIQ26Wea
Marie Ennis-O'Connor @JBBC
@jamienholloway hey there :-) #patientchat https://t.co/BmLB2ulH4d
Amy Byer Shainman @BRCAresponder
#patientchat Hi @BRCAresponder saying hello! Education-Advocacy-Support for #BRCA and other #hereditarycancer syndromes https://t.co/xrGT8ygUIx
Geeky Fox @TechKitsune
A1: A good online community is consisted of people lifting each other up, recommemding help, creating an inclusive environment, one that can teach and facilitate new ideas. #patientchat
Inspire @teaminspire
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Marie Ennis-O'Connor @JBBC
@patientchat T1 One that is inclusive of all voices #patientchat
Amy Byer Shainman @BRCAresponder
@JBBC Marie! #patientchat Hi there!
AutonomicRN© @AutonomicRN
T1: A supportive environment, safety, privacy within the group, and common goals. Favorites...too many @patientslikeme @DysSupport @wegohealth #patientchat
Alan Brewington @abrewi3010
@bbhomebody I start the radio frequency ablation for my cervical spine on Monday. How are you? #patientchat
Jamie Roger @JamieRoger8
Open dialogue, a willingness of all members to get involved, an opportunity to express yourself freely but without harm to others, support from your online peers #patientchat https://t.co/fegJLijXj8
Patient Chat @patientchat
RT @TechKitsune: A1: A good online community is consisted of people lifting each other up, recommemding help, creating an inclusive environ…
Amy Byer Shainman @BRCAresponder
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the nxt hr. You can engage w/ others…
Alan Brewington @abrewi3010
@GinaMcGalliard Hi buddy! #patientchat
Dolores Richards @joyfulkira
Hi to #patientchat Dolores Richards, RN here from @Skyddacare & #CMSANJ interested in "The Power of Online Communities" especially interested in the trends in the aging populations #seniors #empowered
ShereeseM, MS/MBA @ShereesePubHlth
A1 A good online community has committed organizers, a scope, a set time, an open source library, and an outreach component #patientchat https://t.co/m0oun3xbWZ
Beth Morton @beth_morton
T1: I find communities w/basic etiquette & those moderated by people with some level of knowledge of the topic (i.e., condition) tend to stay more constructive, positive, supportive. #patientchat
Tami Dew Rich @bostonheartmom
Hi all 👋🏻 Tami sliding in late #patientchat
Jamie Roger @JamieRoger8
@beth_morton well, sometimes that's all you can/ need to do to keep pushing. Glad you were able to join though #patientchat
Quin Turner @QuinlanTurner
@patientchat T1: Should be supportive and have a positive goal. That doesn't mean ppl can't disagree and debate their stance on issues but ultimately the focus should be on improvement in some capacity whether in the form of empathy, support or change. All voices should be heard! #patientchat
AutonomicRN© @AutonomicRN
@bostonheartmom Never too late! #patientchat
Becky Brandt RN @bbhomebody
T1 We all deserve kindness, support, friendship, medical knowledge, and a shoulder to cry on when we hit the wall! I've created some wonderful friends/health partners in Social Media. #patientchat https://t.co/dmjJeu0t2e
Marie Ennis-O'Connor @JBBC
She said it! #patientchat https://t.co/QcAAKAy9yS
Jamie Roger @JamieRoger8
RT @TechKitsune: A1: A good online community is consisted of people lifting each other up, recommemding help, creating an inclusive environ…
AutonomicRN© @AutonomicRN
Perfect! #patientchat https://t.co/OjcnHI6BF1
Alan Brewington @abrewi3010
A1 a place where I can be vulnerable and open without fear of hurting myself. #patientchat
Patient Empowerment @power4patients
@TechKitsune 100% agree! #patientchat
swaggsheila @swaggsheila1
Hi I’m Sheila. 8 year MBC patient and 25 year Air Force veteran. This is my first time here. #patientchat
Kevin J. Fowler @gratefull080504
T1: In a former life I redesigned a online program into a CRM program for transplant recipients: It informed, empowered, and ultimately provided hope for transplant recipients #patientchat https://t.co/POlMyl7fLq
Your GPS Doc, LLC @yourgpsdoc
Joining a little late from MD. Nicole Rochester, physician, recent patient, former caregiver, and CEO of Your GPS Doc, LLC, a company that helps patients and caregivers navigate the healthcare system. Happy to be here on this rainy Friday. #patientchat
AutonomicRN© @AutonomicRN
@yourgpsdoc Long time no see! #patientchat
Jamie Holloway, PhD @jamienholloway
@swaggsheila1 Hi Sheila, welcome! #patientchat
Heather McCullen @H_SalemOaks
A1: It’s important for an online community to be knowledgeable and open minded. But a lesser appreciated quality is that it should be comfortable going off topic a bit. Your illness connects you, but it’s not what will create relationships and a strong community #patientchat
Your GPS Doc, LLC @yourgpsdoc
A1: Good in-line communities consist of diverse individuals with common goals who share freely and reserve judgment. #patientchat https://t.co/UT6I8j9CE7
Jamie Roger @JamieRoger8
agreed, the willingness to listen to others is crucial, online or face-to-face #patientchat https://t.co/p5rZB236Tv
Amy Byer Shainman @BRCAresponder
The #BRCA #hereditarycancer community has a great online presence. Passion, talent, empathy, knowledge. Great private FB support groups too! @LguzzardiM @karenBRCAMTL @NickiDurlester @MyGeneCounsel @BraveBosom @pinkandbluedoc @GenC_SM #patientchat
Amy Byer Shainman @BRCAresponder
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/L0i8d6oeqT #patientchat
Heather McCullen @H_SalemOaks
RT @abrewi3010: A1 a place where I can be vulnerable and open without fear of hurting myself. #patientchat
Dee Sparacio @womenofteal
Sorry to be joining in late. Dee #OVCA research advocate, blogger , author, co-founder @gyncsm with @btrfly12 #patientchat
Alan Brewington @abrewi3010
A1 #medx #hcsm #patientchat are by far the best communities. My story is what is important, my diagnosis is only apart of my story.
Patient Empowerment @power4patients
@JamieRoger8 Nailed it. #patientchat
Marie Ennis-O'Connor @JBBC
@H_SalemOaks love this! We are SO much more than our illness #patientchat
Jamie Roger @JamieRoger8
RT @H_SalemOaks: A1: It’s important for an online community to be knowledgeable and open minded. But a lesser appreciated quality is that i…
Georgia @_GeorgiaHurst
RT @BRCAresponder: The #BRCA #hereditarycancer community has a great online presence. Passion, talent, empathy, knowledge. Great private FB…
Becky Brandt RN @bbhomebody
@abrewi3010 Oh I sure hope it helps you! I had a major drug interaction that knocked me out of commission last week. So glad to be thru that! Still searching for the magic bullet 😀 #patientchat
Your GPS Doc, LLC @yourgpsdoc
@AutonomicRN I’ve missed you guys! ❤️ Have been dealing with horrific pain from cervical stenosis but happy to be on the mend. #patientchat
Patient Chat @patientchat
T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ
Dee Sparacio @womenofteal
One of my favorites - #bcsm . Everyone is welcoming, knowledgeable and supportive. #patientchat
Alan Brewington @abrewi3010
RT @bbhomebody: T1 We all deserve kindness, support, friendship, medical knowledge, and a shoulder to cry on when we hit the wall! I've cre…
AutonomicRN© @AutonomicRN
@yourgpsdoc Glad to hear you're feeling better! #patientchat
Patient Chat @patientchat
RT @H_SalemOaks: A1: It’s important for an online community to be knowledgeable and open minded. But a lesser appreciated quality is that i…
Patient Empowerment @power4patients
RT @patientchat: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ
UNE Health IT @UNE_HealthIT
#patientchat Hey all! Susan here - - Hanging out with you before our graduates start piling in!
Dee Sparacio @womenofteal
#patientchat
Becky Brandt RN @bbhomebody
I LOVE THIS ANSWER! 👇👇👇 #patientchat https://t.co/qRSC2BlZme
Dee Sparacio @womenofteal
T1 also like #hcldr. #patientchat
Melissa VanHouten @melissarvh
T2 Same as 1st answer, really. Groups have provided me info re disease, treatments, symptom control, providers, etc. & have kept me going w/their encouragement & support during my darkest times. I love them. #Gastroparesis #CureGP #PatientChat https://t.co/DMeglGcV2B
Jamie Holloway, PhD @jamienholloway
T1: I'm obviously a huge fan of #bcsm: my "home patient community." I love the multistakeholder interactions-- oncologists, researchers, patients, advocates. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@AutonomicRN Thanks so much! #patientchat
Georgia @_GeorgiaHurst
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Patient Empowerment @power4patients
RT @melissarvh: T2 Same as 1st answer, really. Groups have provided me info re disease, treatments, symptom control, providers, etc. & have…
Tom Varghese Jr. MD @TomVargheseJr
RT @JBBC: She said it! #patientchat https://t.co/QcAAKAy9yS
Kevin J. Fowler @gratefull080504
#patientchat T1: Provide credible patient education information that can trusted and acted upon by patients + caregivers
Amy Byer Shainman @BRCAresponder
RT @patientchat: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ
Dee Sparacio @womenofteal
RT @JamieRoger8: agreed, the willingness to listen to others is crucial, online or face-to-face #patientchat https://t.co/p5rZB236Tv
Alan Brewington @abrewi3010
@bbhomebody I was in the ER for this last #patientchat. Glad you are up and talking again! A magic bullet sounds amazing.
Patient Chat @patientchat
@swaggsheila1 Hi, don't forget to use #patientchat in all your tweets so everyone can see your responses!
Marie Ennis-O'Connor @JBBC
@patientchat A2 Helped me feel less isolated and alone - there's always someone who really gets what you are going through even when friends and family don't #patientchat
AutonomicRN© @AutonomicRN
T2: Online communities have build numerous support systems for me. They have allowed me to just be me. I don't have to say everything is ok. When I don't feel good, I can say it and everyone understands! #patientchat
Georgia @_GeorgiaHurst
RT @patientchat: Today's #patientchat topic is Including The Power of Online Patient Communities https://t.co/BDMRaoH5zt #patientchat https…
Beth Morton @beth_morton
@H_SalemOaks So true! It's nice to find common ground over our illnesses, but often we need off-topic distractions from the daily grind. Online communities can be a great resource. #patientchat
Patient Empowerment @power4patients
RT @JBBC: @patientchat A2 Helped me feel less isolated and alone - there's always someone who really gets what you are going through even w…
Kevin Freiert @K_SalemOaks
@jamienholloway I like that ... "my home community" It's an interesting idea to have one (or two) we are committed to and others we drop by. Next order thinking - bespoke liaisons. #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat T2 Yes! I was once put on a medication that was very effective for my symptoms but came with a nasty side effect. A patient forum discussion suggested that it was the high sodium content in the med, and after lowering my dietary intake I could eliminate side effect. #patientchat
Jeremy Murphy @jeremypmurphy
@patientchat A2: Yes, the #asthma and #allergy communities have helped me a great deal in learning best practices, what to avoid, and how to become and stay #healthy. Staying active helps me a lot (beware of pollen/mold/allergens). #patientchat
Your GPS Doc, LLC @yourgpsdoc
A2: Not only have online communities helped me better understand my patients and clients but they have been a source of support and information during my own recent bout with pain. #patientchat https://t.co/Lcd89jgYRu
Amy Byer Shainman @BRCAresponder
A2 The support is everything. I don't feel so alone; there are so many people with similar issues. #surgicalmenopause is not easy. #patientchat https://t.co/pNIpzZq1zC
Amy Byer Shainman @BRCAresponder
RT @patientchat: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ
Inspire @teaminspire
RT @GinaMcGalliard: @patientchat T2 Yes! I was once put on a medication that was very effective for my symptoms but came with a nasty side…
UNE Health IT @UNE_HealthIT
#patientchat T2: Online Community as a patient can be helpful yet overwhelming.
Geeky Fox @TechKitsune
A2: They have helped me mentally. Some of the best friends I have made come from online communities. They were there when I needed them, they didn't care what I looked like or what kind of person I was. Kindness goes a long way. #patientchat
Alan Brewington @abrewi3010
A2 I’m continually improving as a communicator & storyteller. I will be forever grateful for these improved skills. #patientchat
Beth Morton @beth_morton
T2: Yes! When my #migraine became chronic daily, I had so many questions about treatment. My docs tended to be very narrow in scope, but I could find online communities for almost any topic. The right one meant a goldmine of support. #patientchat
Quin Turner @QuinlanTurner
@patientchat T2: Absolutely. Sickness can feel very solitary but finding pplstruggling with similar problems is very validating. OCs create a safe space to discuss the things that others may not understand. Seeing what some people have accomplished is also extremely inspirational #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T2 Online communities have informed and delighted me. The sharing has contributed to my research and design productivities, I'm inspired by the stories, and optimistic about shared decision making when the patient POV is included #patientchat https://t.co/wysIBdyFLw
Jeremy Murphy @jeremypmurphy
@patientchat T1: It should be a safe place where people can learn how to improve their #health in this context. We all can teach each other something based on our experience if we are willing to share and listen to others who can help us. #patientchat
abridged @abridgedtheblog
Jumping in a bit late to this week’s #patientchat - looking forward to the discussion on the value of patient communities #chronicillness #chronicpain #eptatient #health #healthcare
Patient Chat @patientchat
RT @QuinlanTurner: @patientchat T2: Absolutely. Sickness can feel very solitary but finding pplstruggling with similar problems is very val…
Alan Brewington @abrewi3010
RT @GinaMcGalliard: @patientchat T2 Yes! I was once put on a medication that was very effective for my symptoms but came with a nasty side…
Becky Brandt RN @bbhomebody
T2 Some days we hit rock bottom. In those moments I'm reminded by my online communities to relax, sit still, take a pill or a bath & stop feeling guilty for what I'm not accomplishing. Some days making coffee, drinking it & turning on the TV are good enough. #patientchat https://t.co/OIwSV2RTvF
Dee Sparacio @womenofteal
T2 what I look for : providing accurate information, being welcoming of all points of view, being open for good discussions , being there when you have a question or need support #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/L0i8d6oeqT #patientchat
Patient Empowerment @power4patients
@JBBC @patientchat So true. As a caregiver I got so much support from other caregivers and found it was often easier to talk with them than friends & fam because they truly understood #patientchat
Patient Empowerment @power4patients
RT @GinaMcGalliard: @patientchat T2 Yes! I was once put on a medication that was very effective for my symptoms but came with a nasty side…
Patient Empowerment @power4patients
RT @TechKitsune: A2: They have helped me mentally. Some of the best friends I have made come from online communities. They were there when…
Patient Empowerment @power4patients
RT @QuinlanTurner: @patientchat T2: Absolutely. Sickness can feel very solitary but finding pplstruggling with similar problems is very val…
Patient Chat @patientchat
T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq
Jamie Roger @JamieRoger8
agreed, KINDNESS is everything in a good support community. Kindness allows us to still have real conversations with differing opinions without hurting each other. #patientchat https://t.co/5KBhDCAFJk
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: @JBBC @patientchat So true. As a caregiver I got so much support from other caregivers and found it was often easier to…
Elin Silveous @ElinSilveous
RT @patientchat: You're invited! Join the "The Power of Online Patient Communities" #patientchat Fri 5/18 1pmET https://t.co/zQZAaZVdwI htt…
Alan Brewington @abrewi3010
It’s just a bad day, not a bad life. @justagoodlife. #patientchat https://t.co/roLbeHQU88
Patient Empowerment @power4patients
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Elin Silveous @ElinSilveous
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Dee Sparacio @womenofteal
RT @power4patients: @JBBC @patientchat So true. As a caregiver I got so much support from other caregivers and found it was often easier to…
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Becky Brandt RN @bbhomebody
@ShereesePubHlth I'm inspired by you all the time @ShereesePubHlth #patientchat
Kevin J. Fowler @gratefull080504
#patientchat I apologize for being on such a short time but I have to run
AutonomicRN© @AutonomicRN
T3: Sometimes learning to deal with everyone's personalities can be a struggle initially. Generally we find out who we want to be close with. They become our rocks. #patientchat
Tami Dew Rich @bostonheartmom
A1 To me, a solid healthcare online Comm’ty always welcomes & includes Patient/Family voices; honors us for our #PtX wisdom; where our contributions are valued like #patientchat Also ♥️#hcldr #WTFix #pinksocks @S4PM @Sch4Change Sometms @StanfordMedX @TheIHI tho <inclusive 2all https://t.co/13XWs9aPLu
UNE Health IT @UNE_HealthIT
#patientchat non-judgemental, informed (even somewhat) patients can help create beneficial Online Communities https://t.co/mP1XBvoM1B
Jamie Roger @JamieRoger8
RT @power4patients: @JBBC @patientchat So true. As a caregiver I got so much support from other caregivers and found it was often easier to…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Melissa VanHouten @melissarvh
T3 Members sometimes find it difficult 2 embrace/tolerate diverse opinions/experiences. Tend 2 think their way is only way. Allow discussion but not conflict/argument. Sometimes competition of who is sickest. Don't play that game. Struggle is struggle & pain is pain. #PatientChat https://t.co/odQvT1xSzR
Kevin Freiert @K_SalemOaks
A3 It is difficult to get into a deep conversation in 140 characters (especially when comments fly in at about 200 per minute) #patientchat #slowdownandlisten @SalemOaks https://t.co/P35nzPUu76
Amy Byer Shainman @BRCAresponder
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Patient Empowerment @power4patients
@gratefull080504 Thanks for joining us! Have a great weekend #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat A2 Patient communities are maybe most helpful to patients who have been underserved/marginalized. For instance the standard treatment for CFS is forced exercise based on a belief that it’s a psychological illness, but many have been harmed by this. #patientchat
Dee Sparacio @womenofteal
Back to T1 - I always think Twitter communities but on Facebook I love BRCA Advanced 101 & 102 Journal Club and Beyond the Pink Moon and the communities @teaminspire and @smart_patients #patientchat
Your GPS Doc, LLC @yourgpsdoc
A3: One challenge is being vulnerable with “strangers” and being open to the possibility of creating new friendships. #patientchat https://t.co/cm6DO7hn8f
Jamie Roger @JamieRoger8
Not bringing what was taken away fromthe dialogue/ community into our real lives. We learn compassion, gain strength, and overcome challenges but some of those dont translate as easily into the day to day as it should. #patientchat https://t.co/pQg6eREv9C
Alan Brewington @abrewi3010
T3 as a male social pressure dictates that unless I’m a country singer talking about my #chronicpain isn’t manly. That’s hard to break thru. #patientchat
Kevin Freiert @K_SalemOaks
RT @yourgpsdoc: A3: One challenge is being vulnerable with “strangers” and being open to the possibility of creating new friendships. #pati
ShereeseM, MS/MBA @ShereesePubHlth
T3 Challenges tend to mirror those that have to do with work-life balance; time, divided priorities, ensuring mutual added value. #patientchat https://t.co/JMD9jW1WBB
Marie Ennis-O'Connor @JBBC
@patientchat A3 Challenges I have seen are competitiveness among members - my illness is worse than yours - and louder voices drowning out others #patientchat
Becky Brandt RN @bbhomebody
T3 I find some days harder than others to stay involved. I want to educate as well as learn, but my body often says NO. #patientchat https://t.co/N80EVrGI70
Your GPS Doc, LLC @yourgpsdoc
A3: Another challenge is that everyone has a unique experience and disease course. You may develop unreasonable expectations based on someone else’s miraculous cure. #patientchat https://t.co/cm6DO7hn8f
Jamie Roger @JamieRoger8
and willing ourselves to open up to new ideas because they were expressed out of genuine concern and understanding #patientchat https://t.co/71Kb7nXbix
UNE Health IT @UNE_HealthIT
Spot on! #patientchat https://t.co/x00GU6wSO0
Inspire @teaminspire
@patientchat T3 We see challenges of some new members feeling that they don’t know the right questions to ask, or the “right language” to use. Members who welcome so-called newbies are crucial to an online support group. #patientchat
Becky Brandt RN @bbhomebody
@K_SalemOaks @SalemOaks Thats for sure! Some statements require a full page of text! #patientchat
Marie Ennis-O'Connor @JBBC
Melissa said it better than I ;-) #patientchat https://t.co/K3diWN5sd7
Alan Brewington @abrewi3010
RT @bbhomebody: T3 I find some days harder than others to stay involved. I want to educate as well as learn, but my body often says NO. #pa
Kevin Freiert @K_SalemOaks
ALan - I thought you were a country singer. A new invention tweetsongs #patientchat I agree, men aren't supposed to reveal such things and it becomes a burden. https://t.co/2PU5mpsyDU
Quin Turner @QuinlanTurner
@patientchat T3: Personally, the hardest part is finding so many common points of frustration in healthcare where improvements would help so many ppl yet not knowing how to begin pushing for those changes. The convo is a great first step but need to begin taking action #patientchat
Geeky Fox @TechKitsune
A3: Text is often pulled out of context. It can be the best way for people to express their opinions and yet intuperated in the worst possible way. That can become a virus in online communities. It is important to ask for clarification on context. #patientchat
Melissa VanHouten @melissarvh
@JBBC You are kind, Ms. Marie - but I think you said it quite well! #PatientChat
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/L0i8d6oeqT #patientchat
Marie Ennis-O'Connor @JBBC
A3 Another challenge is when groups become too "cliquey" and not welcoming of newcomers or different voices #patientchat
Amy Byer Shainman @BRCAresponder
It's challenging steering others to have empathy and neutrality at the same time. One patient telling another patient what they "should" be doing is not helpful or supportive in patient communities. #patientchat https://t.co/z60wsmo4Rj
ShereeseM, MS/MBA @ShereesePubHlth
@bbhomebody Thanks. That just made my day. #patientchat https://t.co/uyuFUYKJRa
Amy Byer Shainman @BRCAresponder
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
Kevin Freiert @K_SalemOaks
A3 As big as the community is, it sometimes feels small. Lots of the same people in many conversations. #patientchat #hcldr #researchstories #LCSM
abridged @abridgedtheblog
T3: #patientchat — one challenge: to safeguard the balance between having a safe space for participants to share openly and honestly vs. preventing misinformation/inaccurate information from spreading. How to handle controversial topics and treatments https://t.co/8QOPocARIl
Dee Sparacio @womenofteal
T3 I wasn't going to start with this but it popped into my head first. I think the losses when a member dies is a real challenge. I may never have met them in person but it is still a loss. #patientchat https://t.co/wmKvu09H5B
AutonomicRN© @AutonomicRN
hopping off early to get ready for another chat! Happy Friday everyone! #patientchat
Heather McCullen @H_SalemOaks
I’ll have to catch up later on the plane now. Hope to meet some of you in Philly tomorrow. #patientchat @GlobalGenes
Jamie Holloway, PhD @jamienholloway
T3: sometimes hard to convey tone with limited characters #patientchat
Alan Brewington @abrewi3010
@K_SalemOaks Ha, I can’t sing “Happy Birthday” to save my life. #patientchat
Patient Chat @patientchat
T4: Are online communities the same as support groups? What can live support groups learn from online communities & vice versa? #patientchat https://t.co/ZgsU6rqoKm
Melissa VanHouten @melissarvh
RT @abridgedtheblog: T3: #patientchat — one challenge: to safeguard the balance between having a safe space for participants to share openl…
Alan Brewington @abrewi3010
RT @JBBC: A3 Another challenge is when groups become too "cliquey" and not welcoming of newcomers or different voices #patientchat
Patient Empowerment @power4patients
@teaminspire @patientchat Excellent point. It’s critically important to remember that new members are joining all the time and need to be welcomed as if they’ve always been there #patientchat
Patient Chat @patientchat
@AutonomicRN Thanks for joining #patientchat and enjoy our weekend!
Georgia @_GeorgiaHurst
@patientchat #Patientchat T2: Yes! Good online communities provide substantive content, keep you abreast to the latest info regarding your health concern, provide support, and boundless empathy.
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat A2 I also write/tweet about medical gender bias and there’s many women who correctly diagnosed themselves online. Not ideal, but when a doc is not on your side it can be your only bet. Patient communities also give assurance you’re not “crazy” for having symptoms #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @K_SalemOaks: A3 It is difficult to get into a deep conversation in 140 characters (especially when comments fly in at about 200 per min…
Amy Byer Shainman @BRCAresponder
RT @patientchat: T4: Are online communities the same as support groups? What can live support groups learn from online communities & vice v…
Kevin Freiert @K_SalemOaks
Wow! And some people say we can not build real relationships online. There really is a feeling of comraderie. I experienced the same when taking some online classes. #patientchat https://t.co/NBVW7NFJYK
Angela Hemans @AngelaHemans
RT @patientchat: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/Ci…
ShereeseM, MS/MBA @ShereesePubHlth
RT @K_SalemOaks: Wow! And some people say we can not build real relationships online. There really is a feeling of comraderie. I experie…
UNE Health IT @UNE_HealthIT
@K_SalemOaks #Patientchat Perhaps it is still worthwhile to be involved in those conversations despite the size - knowing there are many who do not post though scan for relevant info
Inspire @teaminspire
@GinaMcGalliard @patientchat A2 Agreed. Yesterday at the #WTFix conference, @mettedyhrberg alluded to this very point. #patientchat
Melissa VanHouten @melissarvh
T4 Many similarities. Cannot physically comfort or sit w/them & it pains me. We need that human touch & some do not have it. For some, online is ONLY source of support. We can supplement but not substitute. #Gastroparesis #CureGP #PatientChat https://t.co/Fj8nB6H8lW
ShereeseM, MS/MBA @ShereesePubHlth
RT @UNE_HealthIT: @K_SalemOaks #Patientchat Perhaps it is still worthwhile to be involved in those conversations despite the size - knowing…
Jamie Holloway, PhD @jamienholloway
@womenofteal Yes, it's hard to deal with the loss of a friend you've met in person. Yet it's such a real loss. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @abridgedtheblog: T3: #patientchat — one challenge: to safeguard the balance between having a safe space for participants to share openl…
Tami Dew Rich @bostonheartmom
@patientchat A2 Online comm’ties help me feel connected, less isolated. They make 🌎 smaller wh⬇️anxiety. Learned much abt innovations in care, being an ePt, better self-care, care planning, etc. Provides platform to offer/share my tips&learnings so I can contribute help others #patientchat
Patient Empowerment @power4patients
@H_SalemOaks @GlobalGenes Safe travels! #PatientChat
Patient Empowerment @power4patients
RT @patientchat: T4: Are online communities the same as support groups? What can live support groups learn from online communities & vice v…
Beth Morton @beth_morton
T3: Thinking of FB groups, it can be hard to ensure quality information is shared. It also feels like there is a predictable pattern in questioning/participation of new vs. veteran members. It'd be great to better capture information so doesn't need to be rehashed. #patientchat
Marie Ennis-O'Connor @JBBC
@patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Melissa VanHouten @melissarvh
RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Becky Brandt RN @bbhomebody
@ShereesePubHlth I'm so glad!!! Happiest of Friday's to you! #patientchat
Patient Empowerment @power4patients
RT @bostonheartmom: @patientchat A2 Online comm’ties help me feel connected, less isolated. They make 🌎 smaller wh⬇️anxiety. Learned much a…
Alan Brewington @abrewi3010
T4 as a #chronicpain pt it is easy for me to need to take from a community, whats hard is to balance that by giving to others in need. Support/community need a balance. #patientchat
Melissa VanHouten @melissarvh
RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Katie @katie5280
@patientchat T4: Yes! Sometimes even better since the members of an online community can be more diverse than a live support group. Live support groups can learn that everyone needs space to share their story and online groups can learn to be better with time management. #patientchat
Amy Byer Shainman @BRCAresponder
RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Geeky Fox @TechKitsune
A4: They can be, but support groups tend to be more life experience from like minded people. While communities can be a guessing game. Both have flaws but I feel communities can better learn empathy from support groups. #patientchat https://t.co/ZOnnklx4bs
Quin Turner @QuinlanTurner
@patientchat T4: They absolutely can be. Pts get to share very personal experiences that elsewhere may be humiliating but within the community there are always empathetic people ready to listen and support. It's the perfect forum to be vulnerable without consequence or judgement. #patientchat
abridged @abridgedtheblog
T4 #patientchat — not necessarily. Online communities can be support groups, especially for geographically isolated patients, but some have a greater strength in educating patients/sharing information and resources. https://t.co/R9Oye9MM1A
Patient Empowerment @power4patients
@beth_morton Agreed #patientchat
Patient Empowerment @power4patients
RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Jamie Holloway, PhD @jamienholloway
Online support is important for people who don't have a local patient community-- either because of rare disease, live in less populated area, work during "normal support group hours." #patientchat
Inspire @teaminspire
@womenofteal T3 The intensity and depth of connections in online support groups—particularly those for people affected by life-threatening diseases--isn’t widely appreciated but by the people in those groups. #patientchat
Patient Empowerment @power4patients
RT @katie5280: @patientchat T4: Yes! Sometimes even better since the members of an online community can be more diverse than a live support…
Patient Empowerment @power4patients
RT @QuinlanTurner: @patientchat T4: They absolutely can be. Pts get to share very personal experiences that elsewhere may be humiliating bu…
ShereeseM, MS/MBA @ShereesePubHlth
@bbhomebody And to you as well. #patientchat https://t.co/aANp4CppJ2
Georgia @_GeorgiaHurst
@patientchat #Patientchat T4: 1 of 2 It depends. It varies but most online communities tend to utilize various social media platforms in order to extend support. Private groups, which deal with more sensitive and difficult issues, can be found on Facebook.
ShereeseM, MS/MBA @ShereesePubHlth
RT @jamienholloway: Online support is important for people who don't have a local patient community-- either because of rare disease, live…
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/L0i8d6oeqT #patientchat
Your GPS Doc, LLC @yourgpsdoc
A4: Online communities are virtual support groups, IMO. Rule of engagement are similar, with the caveat that you have to be sure your words convey the proper tone online which can be a challenge. Some feel safer sharing online and it’s great for the homebound. #patientchat https://t.co/OF0DTqrrjh
Being Dense @BreastDense
Being Dense? NOT a woman's preferred choice Full notification of Breastdensity @ routine #Breastcancer screening = Women equipped to make INFORMED Decisions @ their own Breast Health. Delighted 2 attend #ICTD2018 @cancertrials_ie #patientchat https://t.co/SVYGv1ghS5
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat A3 I notice much competing over who’s sickest. And some are very unwelcoming to those who don’t fit a strict textbook definition of an illness. My illness is complex and I toggle between the narcolepsy & CFS world’s. So I’m never going to be popular w/those folks! #patientchat
Patient Chat @patientchat
T5: Do you use social media platforms differently when talking about your health? For example, Facebook vs. Twitter? #patientchat https://t.co/jzjmS3Da6U
Melissa VanHouten @melissarvh
Absolute truth! Online does not mean impersonal. Our connections are, indeed, deep. Some say they are closer to other group members than to own family. #PatientChat https://t.co/PYOVUCFNoP
Patient Empowerment @power4patients
@jamienholloway For caregivers who juggle many responsibilities it can also be difficult to find the time to join a support group so an online option is often more feasible #patientchat
Kevin Freiert @K_SalemOaks
@flicknightshade @patientchat @power4patients There are other advantages as well. Everyone gets to speak (or not) and you can usually go back to reflect on what others have said at a reasonable pace. #patientchat
Patient Empowerment @power4patients
RT @teaminspire: @womenofteal T3 The intensity and depth of connections in online support groups—particularly those for people affected by…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T4: Are online communities the same as support groups? What can live support groups learn from online communities & vice v…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T5: Do you use social media platforms differently when talking about your health? For example, Facebook vs. Twitter? #pati
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@yourgpsdoc It’s definitely great for people who are homebound, as well as those with rare diseases who may not readily meet people with their particular illness! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: Do you use social media platforms differently when talking about your health? For example, Facebook vs. Twitter? #pati
Your GPS Doc, LLC @yourgpsdoc
@GinaMcGalliard Absolutely! #patientchat
Jamie Roger @JamieRoger8
I use them differently in the sense that my discussions on twitter are more real and in the moment and branch out into different networks. I don't tend to have those discussions on Facebook and use it more to keep in touch with friends. #patientchat https://t.co/kfKUmFve3J
Georgia @_GeorgiaHurst
#Patientchat T4: #Tip Using #'s for keywords on Twitter is a great way to find people who need help.
Alan Brewington @abrewi3010
This is an issue in many communities. It’s not a competition, we all can work together for a higher quality of life. #patientchat https://t.co/sfWEe3xPWr
Patient Empowerment @power4patients
RT @GinaMcGalliard: @yourgpsdoc It’s definitely great for people who are homebound, as well as those with rare diseases who may not readily…
Dee Sparacio @womenofteal
T4 Yes and No. Yes the same support and caring and info shareing . No - Local support in-person groups have a local "flavor " and are usually only once or twice a month. A lot happens in between. #patientchat https://t.co/Aj4NXwtfcw
ShereeseM, MS/MBA @ShereesePubHlth
@patientchat Twitter is my preferred platform & IMHO its more secure for patients & physicians #patientchat
Jeremy Murphy @jeremypmurphy
@patientchat T5: I’m more open about my health (asthma/allergies) on Twitter. More guarded on Facebook, some things on FB for friends only. #patientchat
Beth Morton @beth_morton
@jamienholloway Agree! I live in a very rural area and appreciate my online communities. But I miss more formal support and in-personal contact. There's a lot to be said for that. It's certainly a trade. Pros to both. #patientchat
Becky Brandt RN @bbhomebody
T4 Patients are AMAZINGLY WELL EDUCATED. We don't always learn from the "group leader". We get massive info from patients, caregivers, support people, and medical professionals who join in. #patientchat https://t.co/Qcw8iJoIYY
Melissa VanHouten @melissarvh
T5 FB=more personal & interactive while Twitter tends 2 B more professional. Both work 4 advocacy but, again, FB interaction largely w/patients while Twitter=providers, researchers, nonprofits, etc. FB easier 2 organize & mobilize/share but not as far-reaching impact #PatientChat https://t.co/BWPSA0mc0V
Geeky Fox @TechKitsune
A5: I am now, I feel more annonymous on Twitter, let's me be more outgoing with responses. Facebook I feel as though I wouldn't want to worry family and friends unless it was dire. LinkedIn no one knows me with exception of a few opinions. #patientchat
Patient Empowerment @power4patients
RT @bbhomebody: T4 Patients are AMAZINGLY WELL EDUCATED. We don't always learn from the "group leader". We get massive info from patients,…
Manishree Bhattacharya @ManishreeBhatt1
@patientchat T 1 If you are talking about online patient community, wd say be there for each other - approachable,non-judgemental, & open-minded to hear and imbibe others' views. Bt one must not,without analysing & understanding, agree 2 every commonly upheld ideas on communites #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @melissarvh: T5 FB=more personal & interactive while Twitter tends 2 B more professional. Both work 4 advocacy but, again, FB interactio…
Becky Brandt RN @bbhomebody
@abrewi3010 You give more than you realize Alan! Thanks for being there/here! #patientchat
Beth Morton @beth_morton
A5: Slightly, yes. I use FB communities more to crowdsource the answer to a non-technical health question. I use Twitter the same way, but my reach isn’t as big (i.e., followers), so I tend to use it to search out more technical information about my health. #patientchat
Your GPS Doc, LLC @yourgpsdoc
A5: I was very hesitant to share details about my health challenges on Twitter (vs. private FB groups) but I think I’m getting over that. 😊 #patientchat https://t.co/a5XLXv8Tkh
Patient Empowerment @power4patients
RT @melissarvh: T5 FB=more personal & interactive while Twitter tends 2 B more professional. Both work 4 advocacy but, again, FB interactio…
Georgia @_GeorgiaHurst
@patientchat #PatientChat T5: Yes, it depends on the subject and the platform.
Amy Byer Shainman @BRCAresponder
#patientchat Thank you for chat. Have to head out.
Melissa VanHouten @melissarvh
T5 I would like to change that for the #Gastroparesis community - and I will eventually. Those involved w/ our care need to see our struggles & learn from our online FB groups. Both parties would benefit. #CureGP #PatientChat https://t.co/pHJaYAhzhv
Inspire @teaminspire
@melissarvh T3 It's not uncommon to see cancer group members writing that they lit candles, shed tears, and raised wine glasses in toasts to deceased members whom they never met, never talked to even on the phone, and sometimes didn't know the deceased members' real names. #patientchat
Patient Empowerment @power4patients
RT @beth_morton: A5: Slightly, yes. I use FB communities more to crowdsource the answer to a non-technical health question. I use Twitter t…
Katie @katie5280
@patientchat T3: I think can be overwhelming when one may post a question or a statement and gets numerous responses. I think administrators/moderators play an important part as they can help the poster find helpful feedback and guide general tone of the community. #patientchat
Patient Empowerment @power4patients
RT @yourgpsdoc: A5: I was very hesitant to share details about my health challenges on Twitter (vs. private FB groups) but I think I’m gett…
Alan Brewington @abrewi3010
@bbhomebody Thank you! So do you 🙏 #patientchat
Quin Turner @QuinlanTurner
@patientchat T5: I use FB for fam/friends-related things (pics from vacations, keeping up with everyone's lives et). Twitter has acted as more of a health platform. I've connected with some amazing ppl here because we share similar afflictions who otherwise I may never have met #patientchat
Patient Empowerment @power4patients
RT @teaminspire: @melissarvh T3 It's not uncommon to see cancer group members writing that they lit candles, shed tears, and raised wine gl…
Jamie Holloway, PhD @jamienholloway
Heading out, thanks for a great chat! #patientchat
Tami Dew Rich @bostonheartmom
@patientchat A3 Tone = 1 occasional challenge While I don’t expect comm’ties or chat hosts 2b #TonePolice @ times certain ppl especially nonPts may dominate in a way that’s less inclusive, esp to Pts/Fams. Even if we disagree, it’s never ok 2bully or aggressively push own agenda #patientchat
Patient Chat @patientchat
Topic 6 (T6:) coming up...https://t.co/L0i8d6oeqT #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@IAmGeorgiaHurst @patientchat Yes, very good point. Because Twitter is public, in the CFS world there’s been some nasty instances where folks from “skeptic” groups have butted into our threads to tell us our illnesses are all in our heads. Private groups sound like a good solution to the problem. #patientchat
Katie @katie5280
@teaminspire @patientchat Do your admins/moderators also do a weekly/monthly welcome to the newbies? This also goes a long way! #patientchat
Georgia @_GeorgiaHurst
RT @GinaMcGalliard: @IAmGeorgiaHurst @patientchat Yes, very good point. Because Twitter is public, in the CFS world there’s been some nasty…
Melissa VanHouten @melissarvh
@teaminspire We have a grief/memorial group where members leave condolences, and we light virtual candles on behalf of the deceased. We may be online-based, but we shed real tears. #PatientChat #Gastroparesis #CureGP
Your GPS Doc, LLC @yourgpsdoc
@ShereesePubHlth @patientchat Can you elaborate, Shereese? I know there was the recent FB data breach but is Twitter really safer/more private? #patientchat
Alan Brewington @abrewi3010
T5 I like the limitations of twitter. It’s forced me to produce better quality content I hope. This is then brought to other platforms I hope. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @bbhomebody: T4 Patients are AMAZINGLY WELL EDUCATED. We don't always learn from the "group leader". We get massive info from patients,…
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@teaminspire @patientchat @mettedyhrberg #WTFix sounds great! I’m not familiar with them but I signed up for their mailing list yesterday. #patientchat
Patient Chat @patientchat
T6: Research shows that most patients prefer Facebook to discuss their health. How can we share #patientchat resources and information with these folks? https://t.co/ylEZSbcIzb
Patient Empowerment @power4patients
RT @patientchat: T6: Research shows that most patients prefer Facebook to discuss their health. How can we share #patientchat resources and…
Melissa VanHouten @melissarvh
T6 Ask group admins. I'm always happy 2 share relevant content. Most in my FB groups don't cross over 2 Twitter. FB live chats are appreciated but if they feel you're simply advertising your org, content, or group & don't wish 2 truly help them, it will not fly. #PatientChat https://t.co/rqNVkTOFVY
Beth Morton @beth_morton
@K_SalemOaks @jamienholloway Today is a near perfect day in Vermont. If all summer could be like this (maybe a few degrees warmer), I'd be pretty happy. (I'd need my big hat and sunglasses to be #migraine proof, but I'd be happy.) #patientchat
Katie @katie5280
RT @patientchat: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h
Dee Sparacio @womenofteal
I am learning that keeping up with a chat while trying to eat lunch is a challenge. #patientchat
Katie @katie5280
What are some of your favorite online communities? #patientchat #patientleader #onlinesupport https://t.co/rOsYtsEdK4
Becky Brandt RN @bbhomebody
T5 It depends on what I'm trying to accomplish. When looking for answers, I direct questions/statements toward similar patients. #patientchat https://t.co/605pztrYSG
Kevin Freiert @K_SalemOaks
@patientchat Can you share the references for that research? I wonder if the discussions differ. FB for sharing status and twitter for problem-solving and growth as ePatients #patientchat
Jamie Roger @JamieRoger8
@womenofteal I'm learning that tweetchatting on a train is a fast way to get motion sick #patientchat
IFFGD @IFFGD
RT @melissarvh: T5 I would like to change that for the #Gastroparesis community - and I will eventually. Those involved w/ our care need to…
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@KeelaToo @patientchat Yes! I’ve seen many online instances where CFS patients were urged to do graded exercise therapy by their GP but decided against it once they sought input from the patient community. This may have saved them from huge setbacks or even permanent damsge. #patientchat
Melissa VanHouten @melissarvh
T6 Brutal honesty? Need interaction & personal relationships for the group 2 work. Constant posting of links & self-promotion is not well-received & you will not get the community you seek like this. Focus on them & how you can help them - not how they can help you. #PatientChat https://t.co/rqNVkTOFVY
Georgia @_GeorgiaHurst
@patientchat #PatientChat T6: Yes, because FB has "private groups" for the most part. Again, it varies. Who are you targeting? Men, women, both, minority populations, etc.? Approach must be tailored to your specific audience.
Manishree Bhattacharya @ManishreeBhatt1
@patientchat T5: I am more open on Twitter. Having said that, I wouldn't do it on most platforms as people associate illness or any health problem with weakness. But I can tell you any form of illness makes you stronger, resilient, and supportive towards others #patientchat
Your GPS Doc, LLC @yourgpsdoc
A6: Tricky because many prefer one platform over another. Perhaps establishing private FB groups that pair with the online Twitter communities? #patientchat https://t.co/LFZlPIZ6KF
Geeky Fox @TechKitsune
A6: Creating a group and inviting others to invite friends. Facebook can be a difficult beast to get to people. It tends to be less open than Twitter. And more people feel their private lives are on display. Create ads, invite friends. Etc. #patientchat
Becky Brandt RN @bbhomebody
T6 We can Join and use Facebook! Then find the patient groups we're attempting to educate. Or start our own. #patientchat https://t.co/xJ9oXYna5O
abridged @abridgedtheblog
T6 #patientchat — one way could be to set up calendar events on FB to remind folks of the twitter chats taking place, or to work with bloggers/networks that are present across a variety of platforms to help promote and remind folks of resources #WTFix #chronicblogs https://t.co/Xilj2aolTM
Becky Brandt RN @bbhomebody
@abrewi3010 I agree. Less reading works better for me. #patientchat
Patient Empowerment @power4patients
@womenofteal Yes! I usually power eat before #patientchat but didn’t have time today and now my desk is a mess 😜
Dee Sparacio @womenofteal
T5 I tend to check the Facebook groups less frequently and most are all patients/caregivers. On Twitter I interact with a wider range of people- docs, patients, organizations, researchers etc #patientchat
Becky Brandt RN @bbhomebody
@JamieRoger8 @womenofteal LOL. Sorry! That sucks! #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T6: Research shows that most patients prefer Facebook to discuss their health. How can we share #patientchat resources and…
Jamie Roger @JamieRoger8
RT @womenofteal: T5 I tend to check the Facebook groups less frequently and most are all patients/caregivers. On Twitter I interact with a…
Dee Sparacio @womenofteal
@JamieRoger8 Oh no. At least my table is not moving. LOL. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @abridgedtheblog: T6 #patientchat — one way could be to set up calendar events on FB to remind folks of the twitter chats taking place,…
Patient Empowerment @power4patients
RT @bbhomebody: T6 We can Join and use Facebook! Then find the patient groups we're attempting to educate. Or start our own. #patientchat
Jamie Roger @JamieRoger8
@womenofteal The things we do to participate in what we enjoy. #patientchat #thestruggleisreal
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
Katie @katie5280
@patientchat T1: Active participation by the admins/moderators are key. They need to be watching for spam posts and also ensuring the content is meaningful and helpful. The Facebook communities for @LivingBeyondBC and @ysc are excellent. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@yourgpsdoc @patientchat Look at the analytics & algorithms. FB can share your information in RT (and they do). Targeted ads in timelines are a good measure. Twitter tries to prevent that. #patientchat I could give you specific examples but not in 280.
Patient Empowerment @power4patients
@bbhomebody Stay tuned for our announcement at the end of #PatientChat 😀
Manishree Bhattacharya @ManishreeBhatt1
@patientchat T6: If you can compile #patientchat discussions into meaningful information snippets, infographics, or report, they can be shared on Facebook. Or you could share these with doctors and caregivers to pass them on. Would love to have access to these resources #patientchat
Georgia @_GeorgiaHurst
@womenofteal #PatientChat T5: Twitter seems to be a little more cerebral than FB and it's definitely easier to connect with medical professionals and find esteemed advocates.
Your GPS Doc, LLC @yourgpsdoc
@ShereesePubHlth @patientchat Thanks! I knew you could break it down for me succinctly. #patientchat
Tami Dew Rich @bostonheartmom
@patientchat A6 This surprises me IME @facebook has WAY more issues vs pluses for discussing subjects as personal as healthcr. FB is gr8 for private groups that are well managed w/good gatekpg (though 1 pvt hc Grp has ppl who’ve gone rogue; turnoff) I prefer Twitter hc community #patientchat
kathy kastner @KathyKastner
RT @JBBC: @patientchat A2 Helped me feel less isolated and alone - there's always someone who really gets what you are going through even w…
ShereeseM, MS/MBA @ShereesePubHlth
Duty calls guys. Great chat; great company. Have a great weekend #patientchat https://t.co/KhagjuHxwD
Jeremy Murphy @jeremypmurphy
@patientchat T6: Infographics, scientific studies, health tips can be easily shared. Maybe a newsletter with rotating topics. Case studies with patient names changed/redacted and with permission. #patientchat
kathy kastner @KathyKastner
RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #patientchat
Patient Chat @patientchat
@K_SalemOaks Here you are: https://t.co/tTZiGAyllf #patientchat
Quin Turner @QuinlanTurner
@patientchat CT: Never really looked at much in terms of communities on Facebook but given the info today definitely need to give it a shot. Thanks as always for organizing this #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@yourgpsdoc @patientchat If you go on FB right now, and type in something about your condition, targeted ads will come at you before you leave the sight, even after the scandal #patientchat
Your GPS Doc, LLC @yourgpsdoc
CT: Online communities are a great source of support and information for patients, care partners, and health care professionals. #patientchat
Patient Chat @patientchat
CT: We’re excited to launch the Empowered Patient Chat Facebook Group today! Please join us and let us know what you want to see there #patientchat https://t.co/mVqb17LnGD
kathy kastner @KathyKastner
RT @teaminspire: @womenofteal T3 The intensity and depth of connections in online support groups—particularly those for people affected by…
Jamie Roger @JamieRoger8
great discussion today everyone, glad to have participated... even if I am a bit motion sick now! Have a wonderful day/weekend. Hope to see some of you at the Rare Disease Patient Advocacy Symposium tomorrow in Philly! #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: CT: We’re excited to launch the Empowered Patient Chat Facebook Group today! Please join us and let us know what you want…
Patient Empowerment @power4patients
RT @yourgpsdoc: CT: Online communities are a great source of support and information for patients, care partners, and health care professio…
Patient Empowerment @power4patients
RT @patientchat: CT: We’re excited to launch the Empowered Patient Chat Facebook Group today! Please join us and let us know what you want…
Katie @katie5280
@patientchat T5: I do. I think it's important to have different content across your different social media accounts so that your followers don't get bombarded with the same information. I think it helps to attract new followers too! #patientchat
Alan Brewington @abrewi3010
Ct let’s measure success by WE instead of how many I’s a group has. Together we can raise everyone’s quality of life and probably cure many. #patientchat
Melissa VanHouten @melissarvh
CT #PatientChat Couldn't fit it all in! https://t.co/JtKy6sDNYP
Jeremy Murphy @jeremypmurphy
@patientchat Awesome! So happy you are doing this. Much needed. Thank you!🙏👍🙌🏼#patientchat
Becky Brandt RN @bbhomebody
CT I'm always amazed at the great info I come away with after a tweetchat like this. Even on my darkest days, I'm inspired by you all. THANK YOU! #patientchat https://t.co/izmYt0o15B
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime.
Alan Brewington @abrewi3010
RT @patientchat: CT: We’re excited to launch the Empowered Patient Chat Facebook Group today! Please join us and let us know what you want…
Jamie Roger @JamieRoger8
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime.
abridged @abridgedtheblog
CT #PatientChat - there is a great variety of online communities - serving different goals. I enjoy #patientchat bc it includes both pts and providers from many different fields and backgrounds; a group that recognizes the craziness of medical system and tries to find solutions https://t.co/XEfHd01SyB
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
Melissa VanHouten @melissarvh
Thanks so much to @patientchat for a most engaging chat! Looking forward to the next! #patientchat
Kevin Freiert @K_SalemOaks
@patientchat Hmm. That report was from November 11, 2016. Anything changed that would influence the current social media environment since then?? Maybe so. #patientchat
Jeremy Murphy @jeremypmurphy
@patientchat T5: I share more on my #health on Instagram than on FB too. Larger more engaged audience on IG for me. #patientchat
Patient Chat @patientchat
@bostonheartmom Closing Thoughts #patientchat
Patient Chat @patientchat
Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat
Becky Brandt RN @bbhomebody
@patientchat THAT'S GREAT NEWS! Thanks for all you do to help the patient community. #patientchat
Inspire @teaminspire
@katie5280 @patientchat T3 We have several ways we welcome new members. We have many patient advocacy organization partners for our groups so we do all we can to coordinate with them. My personal opinion is the message from a member of "welcome to the club no one wants to join" is powerful. #patientchat
Beth Morton @beth_morton
Hopping over there now.... thanks for the great chat #patientchat https://t.co/BCYFwuo2Be
Becky Brandt RN @bbhomebody
@abrewi3010 👏👏👏👏 YES! #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, June 1st https://t.co/OSvQHzPLXb Hope to see you there!
Tami Dew Rich @bostonheartmom
@patientchat Ha Sorry Thanks Saw it 1 second later! #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat
abridged @abridgedtheblog
RT @jeremypmurphy: @patientchat T6: Infographics, scientific studies, health tips can be easily shared. Maybe a newsletter with rotating to…
Melissa VanHouten @melissarvh
RT @patientchat: Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat
Georgia @_GeorgiaHurst
@patientchat #PatientChat: CT: Advocates and medical professionals need to keep online content fresh, informative, and helpful. Reach out to various doctors and advocates across fields, lots to learn, yet all interconnected. Thanks for the interesting chat! Have a stellar weekend!
Kevin Freiert @K_SalemOaks
#TTFN #patientchat
Patient Chat @patientchat
Schedule Note: For the summer, we will only have one #patientchat a month. Chats will be June 1, July 13 and August 10
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat CT: I’m reminded how hard it must have been to be a patient before the Internet allowed us to connect with each other and become empowered. I love connecting w/other patient/health bloggers, if any are reading please send links! Here’s mine: https://t.co/dVcuUjxFuT #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Katie @katie5280
@patientchat T6: It's important to use hashtags and tag organizations in your post so that those who use a search function can find the info you've posted easily. It's important to keep your post short and use pics & graphs. #patientchat
Becky Brandt RN @bbhomebody
YAY! Check out the new "Empowered Patient Chat Facebook Group". 🖒#patientchat https://t.co/Nmsr50MB4Y
Patient Empowerment @power4patients
More info about the #patientchat Facebook group https://t.co/uPXhsIIlVw Join us!
Patient Empowerment @power4patients
RT @abridgedtheblog: CT #PatientChat - there is a great variety of online communities - serving different goals. I enjoy #patientchat bc it…
Jeremy Murphy @jeremypmurphy
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Schedule Note: For the summer, we will only have one #patientchat a month. Chats will be June 1, July 13 and August 10
Jeremy Murphy @jeremypmurphy
RT @patientchat: The next Empowered #patientchat will be Friday, June 1st https://t.co/OSvQHzPLXb Hope to see you there!
Patient Empowerment @power4patients
RT @patientchat: Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat
Patient Empowerment @power4patients
RT @patientchat: The next Empowered #patientchat will be Friday, June 1st https://t.co/OSvQHzPLXb Hope to see you there!
Patient Empowerment @power4patients
RT @katie5280: @patientchat T6: It's important to use hashtags and tag organizations in your post so that those who use a search function c…
Becky Brandt RN @bbhomebody
@katie5280 @patientchat GREAT Reminder! A well placed hashtag can move mountains! #centralpain #intractablepain #patientperspective #SupportEachOther #patientchat
Patient Empowerment @power4patients
RT @bbhomebody: YAY! Check out the new "Empowered Patient Chat Facebook Group". 🖒#patientchat https://t.co/Nmsr50MB4Y
Becky Brandt RN @bbhomebody
@GinaMcGalliard Lol! Totally! Who doesn't love a pretty crown😀👑 #patientchat
Tami Dew Rich @bostonheartmom
@patientchat @power4patients Except for the part where I got myself so off track that I somehow lost T4 (!), this was great! Tx for your pre #patientchat namecheck, reminders : I appreciate being included with this terrific group of ppl Have a great - if chilly/rainy (in MA anyway) - weekend 💐 👋🏻 ⛅️
Becky Brandt RN @bbhomebody
@power4patients YIPPEE! #patientchat
Maya Northen Augelli @mayanorthen
Grrrr, I missed #PatientChat again. sigh. Next time!
Patient Empowerment @power4patients
@K_SalemOaks @patientchat We address this issue in one of our first posts to the group. Join and check it out (Kara’s video). #patientchat
#patientchat content from Twitter.