#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners and advocates come to learn from each other and discuss topics of interest to empowered patients |
 | Inspire @InspireIsHealth RT @patientchat: Welcome to #patientchat - where patients, care partners and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | 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 interest to empowered patients |
 | 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 @InspireIsHealth 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 |
| Melissa VanHouten @melissarvh @AutonomicRN Hello, Ms. Kim! #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 |
 | 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 Principal The Voice of the Patient @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 |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 @InspireIsHealth RT @patientchat: Today's #patientchat topic is Including The Power of Online Patient Communities https://t.co/BDMRaoH5zt #patientchat https://t.co/HoyRbnhMBq |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
 | 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 Network @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 |
| 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://t.co/HoyRbnhMBq |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T1: 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 |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T1: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h |
| Patient Empowerment Network @power4patients RT @patientchat: T1: 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 |
| 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 @InspireIsHealth RT @patientchat: T1: 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 |
| 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 |
| Alan Brewington @abrewi3010 @bbhomebody I start the radio frequency ablation for my cervical spine on Monday. How are you? #patientchat |
| Patient Chat @patientchat RT @TechKitsune: A1: 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 |
| 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 on the topic. |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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, MBA @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 |
| AutonomicRN© @AutonomicRN @bostonheartmom Never too late! #patientchat |
| Marie Ennis-O'Connor @JBBC She said it! #patientchat https://t.co/QcAAKAy9yS |
| Jamie Roger @JamieRoger8 RT @TechKitsune: A1: 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 |
| 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 Network @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 Principal The Voice of the Patient @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: 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 |
| 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. |
 | Dee Sparacio @womenofteal Sorry to be joining in late. Dee #OVCA research advocate, blogger , author, co-founder @gyncsm with @btrfly12 #patientchat |
| Patient Empowerment Network @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: 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 |
 | Georgia @_GeorgiaHurst RT @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 |
| 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 |
| AutonomicRN© @AutonomicRN @yourgpsdoc Glad to hear you're feeling better! #patientchat |
| Patient Chat @patientchat RT @H_SalemOaks: A1: 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 |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ |
| Dee Sparacio @womenofteal #patientchat |
| 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: T1: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/l49LcZKw0h |
| Patient Empowerment Network @power4patients RT @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 |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat T1: Provide credible patient education information that can trusted and acted upon by patients + caregivers |
 | Tom Varghese Jr. MD, MS, MBA, FACS, MAMSE 🇺🇸 @TomVargheseJr RT @JBBC: She said it! #patientchat https://t.co/QcAAKAy9yS |
| Amy Byer Shainman @BRCAresponder RT @patientchat: T2: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T2: 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://t.co/HoyRbnhMBq |
| 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 Network @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 when friends and family don't #patientchat |
| 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 |
| 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: T2: Have online communities helped you in your own healthcare? How so? #patientchat https://t.co/SvfJLI53dZ |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| 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 Network @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 Network @power4patients RT @TechKitsune: A2: 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 |
| 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 talk with them than friends & fam because they truly understood #patientchat |
 | 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 https://t.co/0p0cSUN9LF |
| Alan Brewington @abrewi3010 It’s just a bad day, not a bad life. @justagoodlife. #patientchat https://t.co/roLbeHQU88 |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| 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 talk with them than friends & fam because they truly understood #patientchat |
| Elin Silveous @ElinSilveous RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| Kevin J. Fowler Principal The Voice of the Patient @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, MBA @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 |
| 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 talk with them than friends & fam because they truly understood #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| 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: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| Patient Empowerment Network @power4patients @gratefull080504 Thanks for joining us! Have a great weekend #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: A3: One challenge is being vulnerable with “strangers” and being open to the possibility of creating new friendships. #patientchat https://t.co/cm6DO7hn8f |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| 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 |
| Inspire @InspireIsHealth @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 |
| Marie Ennis-O'Connor @JBBC Melissa said it better than I ;-) #patientchat https://t.co/K3diWN5sd7 |
| 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 |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @bbhomebody Thanks. That just made my day. #patientchat https://t.co/uyuFUYKJRa |
| Amy Byer Shainman @BRCAresponder RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| 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: 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 |
| 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 Network @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. |
| 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 minute) #patientchat #slowdownandlisten @SalemOaks https://t.co/P35nzPUu76 |
| Amy Byer Shainman @BRCAresponder RT @patientchat: T4: 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 |
| 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 is on Threads, LinkedIn, TikTok @AngelaHemans RT @patientchat: T3: T3: What are the challenges of being a part of an online community? How can we overcome them? #patientchat https://t.co/CiI1fxgNyq |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @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 |
| Inspire @InspireIsHealth @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 |
| 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: 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 |
| Tami Dew Rich, MBA @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 Network @power4patients @H_SalemOaks @GlobalGenes Safe travels! #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: 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 |
| 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 |
| Patient Empowerment Network @power4patients RT @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 |
| 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 |
 | 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 |
| Melissa VanHouten @melissarvh RT @JBBC: @patientchat T4 online support is open 24/7 and there's a global aspect to it - biggest difference #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 |
| 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 Network @power4patients @beth_morton Agreed #patientchat |
| Patient Empowerment Network @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 @InspireIsHealth @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 Network @power4patients RT @katie5280: @patientchat T4: @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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. |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @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 |
| 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 |
| 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 Network @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 Network @power4patients RT @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 |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T4: 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 |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T5: T5: Do you use social media platforms differently when talking about your health? For example, Facebook vs. Twitter? #patientchat https://t.co/jzjmS3Da6U |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: Do you use social media platforms differently when talking about your health? For example, Facebook vs. Twitter? #patientchat https://t.co/jzjmS3Da6U |
| 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 |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 |
| 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 |
 | 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @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 |
| 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 Network @power4patients RT @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 |
| 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 @InspireIsHealth @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 Network @power4patients RT @beth_morton: A5: 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 |
| 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 Network @power4patients RT @yourgpsdoc: A5: 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 |
| Alan Brewington @abrewi3010 @bbhomebody Thank you! So do you 🙏 #patientchat |
| Patient Empowerment Network @power4patients RT @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 |
| Jamie Holloway, PhD @jamienholloway Heading out, thanks for a great chat! #patientchat |
| Tami Dew Rich, MBA @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 |
| Katie @katie5280 @teaminspire @patientchat Do your admins/moderators also do a weekly/monthly welcome to the newbies? This also goes a long way! #patientchat |
| 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 |
| 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 Network @power4patients RT @patientchat: T6: 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 |
| 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: 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 |
| 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 see our struggles & learn from our online FB groups. Both parties would benefit. #CureGP #PatientChat https://t.co/pHJaYAhzhv |
| 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 |
| 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 |
| Patient Empowerment Network @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 |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T6: 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 |
| 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 wider range of people- docs, patients, organizations, researchers etc #patientchat |
| 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, 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 |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 Network @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, MBA @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 when friends and family don't #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 life-threatening diseases--isn’t widely appreciated but by the people in those groups. #patientchat |
| 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: 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 |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: CT: CT: Online communities are a great source of support and information for patients, care partners, and health care professionals. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: CT: 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 |
| 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 |
| 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: 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 |
| 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 |
| Inspire @InspireIsHealth @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 |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, June 1st https://t.co/OSvQHzPLXb Hope to see you there! |
| Tami Dew Rich, MBA @bostonheartmom @patientchat Ha Sorry Thanks Saw it 1 second later! #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: Read more about our new group here: Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat |
| abridged @abridgedtheblog RT @jeremypmurphy: @patientchat T6: @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 |
| Melissa VanHouten @melissarvh RT @patientchat: Read more about our new group here: 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 |
| 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 |
| Patient Empowerment Network @power4patients More info about the #patientchat Facebook group https://t.co/uPXhsIIlVw Join us! |
| Patient Empowerment Network @power4patients RT @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 |
| 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: 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 Network @power4patients RT @patientchat: Read more about our new group here: Read more about our new group here: https://t.co/9Vx2kHXVDb #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat will be Friday, June 1st https://t.co/OSvQHzPLXb Hope to see you there! |
| Patient Empowerment Network @power4patients RT @katie5280: @patientchat T6: @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 |
| Tami Dew Rich, MBA @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 💐 👋🏻 ⛅️ |
 | Maya Northen Augelli @mayanorthen Grrrr, I missed #PatientChat again. sigh. Next time! |
| Patient Empowerment Network @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.