#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. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Happy Friday #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat with @carlyflumer |
 | Alexa Jett 🦋 @ohhiialexa Hey, I’m Alexa! I’m a thyroid cancer survivor, blogger, and #AYACancer advocate. I’m at home with my two kitties, Sasha and Dewey. (They say hi!) So proud of my girl @carlyflumer for being a special guest in the chat today! #patientchat |
| Patient Chat @patientchat We’re excited to have guest @carlyflumer here, who is involved in healthcare research, communication, & cancer advocacy #patientchat |
 | Heather McCullen @H_SalemOaks Hi #Patientchat, Heather joining from outside of Ann Arbor. I'm part of @SalemOaks |
 | Christina Lizaso @btrfly12 Hi #patientchat :) My schedule doesn't really allow me to join along anymore but managed to get free today. Patient community is near and dear to me. |
| Patient Chat @patientchat You can find out more about Carly here: https://t.co/rMc4TRdepe #patientchat |
 | Carly Flumer (she/her) @carlyflumer Hello all! I’m excited to be guest-hosting today’s chat about the power of patient communities! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Diverse Health Hub @DHealthhub @patientchat Hi I’m Nykema from Diverse Health Hub — excited to see what today’s #patientchat has in store! |
 | Patient Empowerment Network @power4patients @btrfly12 Hi Christina. We're so happy to have you with us today! #patientchat |
 | Jeff Dubin @Power2Patient Hi #patientchat. Jeff from Power to the Patient blog @Pwr2Pt |
| Patient Empowerment Network @power4patients RT @carlyflumer: Hello all! I’m excited to be guest-hosting today’s chat about the power of patient communities! #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 |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer SO SO SOOO PROUD OF YOU!! #ThyCa4Lyfe #patientchat https://t.co/tw0ueIYnbt |
| Patient Empowerment Network @power4patients @DHealthhub @patientchat Hi Nykema, so happy you're here! #patientchat |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat @gratefull080504 : I have a consulting business primary in #rarediseases + #kidneydiseases I have experience building a CRM program for #transplant recipients + serving as an advisory to @ResponsumforCKD Living with a #kidneytransplant since August 2004 |
| Patient Empowerment Network @power4patients RT @patientchat: You can find out more about Carly here: You can find out more about Carly here: https://t.co/rMc4TRdepe #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! I’m here representing @teaminspire and @_OurOdyssey_ since we all enjoy wearing multiple hats. I hope everyone is staying safe. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/n5H4kjsFEP https://t.co/gEQJhJpBIt |
| Patient Empowerment Network @power4patients @Srotberg15 @teaminspire @_OurOdyssey_ Hey Seth, happy you're here with all your hats ;) #patientchat |
 | Alan Brewington @abrewi3010 Hi everyone! #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 |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. Hope everyone is staying safe. #patientchat #pinksocks https://t.co/GiCSme2715 |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 Hey Alan! We're glad you're here #patientchat |
| Patient Chat @patientchat T1: What are your tips for getting started to help patients who don’t have a community build one or find one? #patientchat https://t.co/y7d0jcIPYW |
| Christina Lizaso @btrfly12 More formally... I'm on the @power4patients digital advisory board and I'm often found at #gyncsm #nsgcgenepool #breakthroughcrew #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T1: T1: What are your tips for getting started to help patients who don’t have a community build one or find one? #patientchat https://t.co/y7d0jcIPYW |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What are your tips for getting started to help patients who don’t have a community build one or find one? #patientchat https://t.co/y7d0jcIPYW |
| Seth Rotberg @Srotberg15 @ohhiialexa @carlyflumer All is well in Boston and trying to do more journaling and reflecting during this time. #patientchat |
 | Amanda G @LAlupusLady RT @patientchat: T1: T1: What are your tips for getting started to help patients who don’t have a community build one or find one? #patientchat https://t.co/y7d0jcIPYW |
| Alan Brewington @abrewi3010 @power4patients Always happy to contribute to this important conversation #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Do a quick Google search using keywords such as “support group,” “patient community,” that are specific to your disease. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T1: Hashtags are your friend! Searching a diagnosis in hashtags is an easy way to connect with individuals/organizations. Which brings me to the next point, find your advocacy organization if you have one. @ThyCaInc is mine and they are amazing. #patientchat |
| Christina Lizaso @btrfly12 T1: Finding or building patient community... Too few doctors recommend connecting with other patients. Wish they did more of this. #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Go on Facebook to find support groups! There are tons of them, and I have found them to be very helpful as a #Thyca girl! #patientchat |
| Kevin Freiert @K_SalemOaks T1: Take the first step. Put something out there in SoMed and see who replies. #patientchat #mydisease #cureGPX4 Build those folks into a community. |
| Alan Brewington @abrewi3010 A1 start by being a friend. We all need more friendship in our lives #patientchat |
| Heather McCullen @H_SalemOaks T1: Try really, really hard to find one before you build one. Too many disease groups end up really fragmented instead of having one strong community. #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Find your community here on Twitter! There are a lot of Tweet chats like ours you can find by playing with different hashtags. #patientchat |
| Patient Empowerment Network @power4patients @patientchat Here are 12 Tips for Finding, Growing, and Nurturing Your Online Community from our Empowered! blog #patientchat https://t.co/JasqhGWXhi |
| Amanda G @LAlupusLady A1 Start from where you are. Share what you are doing, how you are feeling. Always be honest and authentic. On social media these tips from @jeffpulver “Listen. Share. Connect. Engage” #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @patientchat Well, if they're on Twitter, check out @healthhashtags to see if your health condition is part of an existing ontology. If not, you are empowered to create one! Also there are a variety of closed patient platforms that also may be useful. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat T1: In my consulting role with @ResponsumforCKD I recommended the #nephrologists + people living with #kidneydisease to serve as advisors It starts at the top with the right people |
| Christina Lizaso @btrfly12 T1: Finding or building patient community... There are a LOT of communities out there. And they meet various needs and not all may be the right "fit". Try things out. Be patient. Seek to connect and collaborate then build if needed. #patientchat |
| Patient Chat @patientchat @gds59 Happy Friday Gerri! Glad you could join us today #patientchat |
| Carly Flumer (she/her) @carlyflumer @gds59 Welcome to PEN!! #patientchat |
| Alan Brewington @abrewi3010 Invite them to talks like #patientchat. This is a great opportunity to meet new and intriguing patients. |
| Alexa Jett 🦋 @ohhiialexa Co-Signed!! #patientchat |
| Christina Lizaso @btrfly12 RT @coffeemommy: @patientchat Well, if they're on Twitter, check out @healthhashtags to see if your health condition is part of an existing ontology. If not, you are empowered to create one! Also there are a variety of closed patient platforms that also may be useful. #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey <runs in late> <acts like she's been here the whole time> HI EVER'BODY!! #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T1: Amongst many resources, social media can be quite helpful when looking for a community of patients. There are a plethora of advocacy groups who are active and always welcoming, even if it is virtually. #patientchat |
| Patient Chat @patientchat RT @btrfly12: T1: T1: Finding or building patient community... There are a LOT of communities out there. And they meet various needs and not all may be the right "fit". Try things out. Be patient. Seek to connect and collaborate then build if needed. #patientchat |
| Carly Flumer (she/her) @carlyflumer @H_SalemOaks Yes, I agree it’s hard to build on your own! There’s always someone out there who is facing a similar situation. #patientchat |
| Patient Empowerment Network @power4patients @gds59 Hey Gerri! Welcome, we're happy you're here and part of Team PEN! #patientchat |
| Patient Empowerment Network @power4patients RT @DHealthhub: @patientchat T1: @patientchat T1: Amongst many resources, social media can be quite helpful when looking for a community of patients. There are a plethora of advocacy groups who are active and always welcoming, even if it is virtually. #patientchat |
| Seth Rotberg @Srotberg15 RT @H_SalemOaks: T1: T1: Try really, really hard to find one before you build one. Too many disease groups end up really fragmented instead of having one strong community. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat T1: In #kidneydisease there is a huge need for #patientengagement because the system of care was not serving their best interests |
| Alexa Jett 🦋 @ohhiialexa @H_SalemOaks This is an excellent point and I’m glad you brought it up. #patientchat |
| Christina Lizaso @btrfly12 @coffeemommy @patientchat @healthhashtags If you are creating one, do reach out to others who have created - even in other disease areas. Most are very willing to share what they have learned and help avoid pitfalls. #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 100% YES! #patientchat |
| Carly Flumer (she/her) @carlyflumer @coffeemommy @patientchat @healthhashtags Yesss! I love @healthhashtags! I recommended this to the team @power4patients when I first met them :) #patientchat |
| Christina Lizaso @btrfly12 RT @LAlupusLady: A1 Start from where you are. Share what you are doing, how you are feeling. Always be honest and authentic. On social media these tips from @jeffpulver “Listen. Share. Connect. Engage” #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: T1: T1: Finding or building patient community... There are a LOT of communities out there. And they meet various needs and not all may be the right "fit". Try things out. Be patient. Seek to connect and collaborate then build if needed. #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: @patientchat Here are 12 Tips for Finding, Growing, and Nurturing Your Online Community from our Empowered! blog #patientchat https://t.co/JasqhGWXhi |
| Seth Rotberg @Srotberg15 RT @carlyflumer: T1: T1: Find your community here on Twitter! There are a lot of Tweet chats like ours you can find by playing with different hashtags. #patientchat |
| Patient Empowerment Network @power4patients RT @coffeemommy: @patientchat Well, if they're on Twitter, check out @healthhashtags to see if your health condition is part of an existing ontology. If not, you are empowered to create one! Also there are a variety of closed patient platforms that also may be useful. #patientchat |
| Amanda G @LAlupusLady RT @btrfly12: @coffeemommy @patientchat @healthhashtags If you are creating one, do reach out to others who have created - even in other disease areas. Most are very willing to share what they have learned and help avoid pitfalls. #patientchat |
| Christina Lizaso @btrfly12 RT @H_SalemOaks: T1: T1: Try really, really hard to find one before you build one. Too many disease groups end up really fragmented instead of having one strong community. #patientchat |
 | Marcela Musgrove @marcela @patientchat I think it usually depends on the condition. There are so many groups that can be explored so it's good to find out the relevant hashtags or specialized communities from someone who's been involved for a while. #patientchat |
| Kevin Freiert @K_SalemOaks T1: We have been talking to an amazing young father whose son was "the only one" and now is one of 10. They had a conference with 40+ scientists 2 weeks ago. Listen to his story @Raising_Rare #patientchat https://t.co/6Jbr1aHHJl |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: That's a hard one to answer, depends on the person/condition. There are definitely a LOT of groups on FB, but since I ditched that platform, using @healthhashtags via @symplur has been my #1 w/a bullet for folks seeking tribe. #patientchat |
| Seth Rotberg @Srotberg15 RT @LAlupusLady: A1 Start from where you are. Share what you are doing, how you are feeling. Always be honest and authentic. On social media these tips from @jeffpulver “Listen. Share. Connect. Engage” #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T1: T1: Hashtags are your friend! Searching a diagnosis in hashtags is an easy way to connect with individuals/organizations. Which brings me to the next point, find your advocacy organization if you have one. @ThyCaInc is mine and they are amazing. #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @MightyCasey Lookit you - running on the new knee already!😉 #patientchat |
| Alexa Jett 🦋 @ohhiialexa @gratefull080504 Thank you for your work in kidney disease. This is a group that is underserved and under-supported in my opinion. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @H_SalemOaks: T1: T1: Try really, really hard to find one before you build one. Too many disease groups end up really fragmented instead of having one strong community. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/n5H4kjsFEP https://t.co/gEQJhJpBIt |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: @coffeemommy @patientchat @healthhashtags If you are creating one, do reach out to others who have created - even in other disease areas. Most are very willing to share what they have learned and help avoid pitfalls. #patientchat |
| Heather McCullen @H_SalemOaks RT @K_SalemOaks: T1: T1: We have been talking to an amazing young father whose son was "the only one" and now is one of 10. They had a conference with 40+ scientists 2 weeks ago. Listen to his story @Raising_Rare #patientchat https://t.co/6Jbr1aHHJl |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @MightyCasey : Facebook can be quite scary with some of the uninformed + destructive #patientvoices Yikes #patientchat |
| Patient Chat @patientchat T2: What are the dos and don’ts of participating in a patient community? #patientchat https://t.co/DBUopqxJJC |
| Alan Brewington @abrewi3010 A1 offer to coproduce of codesign a project or paper. Quality work is a great way to meet others. #patientchat |
| Christina Lizaso @btrfly12 I have a lot of concerns about Facebook groups but do belong to one as it is the only place I've found for those with a CHEK2 mutation. Be cautious always with what you share online. I do realize what I share on Twitter can impact hiring decisions. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T2: The golden rule. Treat others how you want to be treated always works. Also understand that while you might have a similar diagnosis, your treatment plans could be vastly different. And that’s okay! Don’t debate it. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: Invite them to talks like #patientchat. This is a great opportunity to meet new and intriguing patients. |
| Kevin Freiert @K_SalemOaks Sym[lur actually has an add-on for healthcare hashtags #patientchat This link might work. https://t.co/N7wh4ImVvX |
| Christina Lizaso @btrfly12 RT @gratefull080504: #patientchat T1: #patientchat T1: In #kidneydisease there is a huge need for #patientengagement because the system of care was not serving their best interests |
| Carly Flumer (she/her) @carlyflumer T2: DO engage! Share your story! Be supportive of other patients! And most importantly, LEARN. :) #patientchat |
| Christina Lizaso @btrfly12 RT @K_SalemOaks: T1: T1: We have been talking to an amazing young father whose son was "the only one" and now is one of 10. They had a conference with 40+ scientists 2 weeks ago. Listen to his story @Raising_Rare #patientchat https://t.co/6Jbr1aHHJl |
| Amanda G @LAlupusLady A2 Be kind. Offer support, the patient community is filled with friends (who understand) that you haven’t met yet. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T2: Provide something of genuine value that will advance #patientcare + #patientengagement It is looking at the person as a whole + understanding how to serve the community #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @patientchat I find this question amusing since the "rules" should be analogous to participating in all communities. Be respectful. Be authentic. That said, some people struggle with this in real life communities... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @gratefull080504 Not just that - it's the endless surveillance econ horsesh*t on that privacy nightmare of a platform. My POV has not changed since I did this @hilarious_is 1+ yr ago. #patientchat https://t.co/6oAuQofhkX |
| Carly Flumer (she/her) @carlyflumer T2: DON’T put any information out there you’re not comfortable sharing publicly. #patientchat |
 | Annette McKinnon @anetto @patientchat I’ve met a lot of people through tweet chats like this one. In Canada I would suggest joining the Patient Advisors Network @PatientAdvisors. We have active conversations and opportunities on our private group site. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @symplur is a great resource! #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T2: T2: What are the dos and don’ts of participating in a patient community? #patientchat https://t.co/DBUopqxJJC |
| Alan Brewington @abrewi3010 A2 the best advice I got is to push my vulnerability envelope but don’t hurt myself. Vulnerability tends to produce great content but it can also be scary as hell. #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: T2: T2: The golden rule. Treat others how you want to be treated always works. Also understand that while you might have a similar diagnosis, your treatment plans could be vastly different. And that’s okay! Don’t debate it. #patientchat |
| Amanda G @LAlupusLady RT @carlyflumer: T2: T2: DO engage! Share your story! Be supportive of other patients! And most importantly, LEARN. :) #patientchat |
| Kevin Freiert @K_SalemOaks T2: DO Speak candidly about your experience. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @coffeemommy Well, I *can* pedal a bike again. Running might be overstating the possible, still #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @MightyCasey @hilarious_is Casey, I am laughing at your post in Chicago! #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @abrewi3010: A2 the best advice I got is to push my vulnerability envelope but don’t hurt myself. Vulnerability tends to produce great content but it can also be scary as hell. #patientchat |
| Carly Flumer (she/her) @carlyflumer DO ask questions! People are there to support one another. :) #patientchat |
| Kevin Freiert @K_SalemOaks T2: DO Ask questions you have. Build trust through creating opportunities for others to contribute. #patientchat #pinksocks |
| Seth Rotberg @Srotberg15 RT @carlyflumer: T2: T2: DO engage! Share your story! Be supportive of other patients! And most importantly, LEARN. :) #patientchat |
| Amanda G @LAlupusLady RT @carlyflumer: DO ask questions! People are there to support one another. :) #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa @symplur Best place on the interwebs for #epatient humans to find tribe. #patientchat |
| Alan Brewington @abrewi3010 RT @btrfly12: I have a lot of concerns about Facebook groups but do belong to one as it is the only place I've found for those with a CHEK2 mutation. Be cautious always with what you share online. I do realize what I share on Twitter can impact hiring decisions. #patientchat |
| Alan Brewington @abrewi3010 RT @ohhiialexa: T2: T2: The golden rule. Treat others how you want to be treated always works. Also understand that while you might have a similar diagnosis, your treatment plans could be vastly different. And that’s okay! Don’t debate it. #patientchat |
| Christina Lizaso @btrfly12 T2: Patient community do's and don'ts... Do know it is okay to step away from time to time. Your needs and ability to support others will vary. Nice if you give community heads-up so they don't worry when you need to step back. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: T2: T2: Patient community do's and don'ts... Do know it is okay to step away from time to time. Your needs and ability to support others will vary. Nice if you give community heads-up so they don't worry when you need to step back. #patientchat |
| Seth Rotberg @Srotberg15 Couldn’t agree more because once it’s out there, you cannot go back. #patientchat |
| Amanda G @LAlupusLady RT @btrfly12: T2: T2: Patient community do's and don'ts... Do know it is okay to step away from time to time. Your needs and ability to support others will vary. Nice if you give community heads-up so they don't worry when you need to step back. #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T2: When considering do’s and don’ts, a major thing that comes to mind is empathy. Empathy can go a long way in patient communities. On the other hand, a don’t can be staying away from all insensitive gestures. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @gratefull080504 @hilarious_is thank you!! THAT'S [PART OF] THE POINT 🤣 #patientchat |
| Diverse Health Hub @DHealthhub RT @btrfly12: T1: T1: Finding or building patient community... There are a LOT of communities out there. And they meet various needs and not all may be the right "fit". Try things out. Be patient. Seek to connect and collaborate then build if needed. #patientchat |
| Carly Flumer (she/her) @carlyflumer DO speak plainly and clearly, unless you know other patients will understand. #healthliteracy matters here, too! No confusing jargon necessary. :) #patientchat |
| Kevin Freiert @K_SalemOaks T2: DON'T Tear down someone else's ideas publicly. If you disagree, do so gently or find a way to discuss privately. i.e. get to know them better. #patientchat |
| Alan Brewington @abrewi3010 A2 don’t sell cures, don’t post pics without your shirt to your new community. These are snake oil trolls #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat T2: The community has to have a purpose + #valueproposition |
| Christina Lizaso @btrfly12 T2: Patient community do's and don'ts... Do investigate before joining how what is posted will be used. I like how @smart_patients works with healthcare to share info but in a de-identified way and also facilitates connection under defined, upfront circumstances. #patientchat |
 | My Breast Years Ahead 🎗🎀 ☀️ @MyBreastYrsAhd Hello Everyone #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
| Annette McKinnon @anetto @gratefull080504 @MightyCasey Agree @MightyCasey I have deleted my FB account. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: DO NOT shop the idea that your experience is *the* experience. IOW, don't tell new folx they must "do A" or "be X" - help them navigate *their* experience, don't make 'em mirror yours. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: T2: T2: Patient community do's and don'ts... Do investigate before joining how what is posted will be used. I like how @smart_patients works with healthcare to share info but in a de-identified way and also facilitates connection under defined, upfront circumstances. #patientchat |
| Patient Chat @patientchat T3: How do you know how much to share in a patient community? #patientchat https://t.co/zNrUmb0VJB |
| Christina Lizaso @btrfly12 T2: Patient community do's and don'ts... Don't underestimate the absolute power of interacting with others who "get it" and can share the day-to-day living with the diagnosis things you may not get anywhere else. :) #patientchat |
| Patient Empowerment Network @power4patients RT @DHealthhub: @patientchat T2: @patientchat T2: When considering do’s and don’ts, a major thing that comes to mind is empathy. Empathy can go a long way in patient communities. On the other hand, a don’t can be staying away from all insensitive gestures. #patientchat |
| Alan Brewington @abrewi3010 A2 community doesn’t have to mean the same diagnosis. Patients helping patients is a powerful tool and learning opportunity #patientchat |
| Kevin Freiert @K_SalemOaks RT @DHealthhub: @patientchat T2: @patientchat T2: When considering do’s and don’ts, a major thing that comes to mind is empathy. Empathy can go a long way in patient communities. On the other hand, a don’t can be staying away from all insensitive gestures. #patientchat |
| Alexa Jett 🦋 @ohhiialexa 👏🏻 👏🏻 👏🏻 #patientchat |
| Annette McKinnon @anetto T2 if you join a support community you need to be careful not to take up all the space. It’s really good for your own health to reach out and offer help and advice to other people. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @abrewi3010: A2 community doesn’t have to mean the same diagnosis. Patients helping patients is a powerful tool and learning opportunity #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @anetto @gratefull080504 You went one further than I did - I just stopped participating, leaving a big ol' CLOSED sign up as profile pic and banner. I still post to my brand pages, and manage pages for a client. But that's it. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Don’t share any info you’re not comfortable sharing with a friend. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What are the dos and don’ts of participating in a patient community? #patientchat https://t.co/DBUopqxJJC |
| Alexa Jett 🦋 @ohhiialexa T3: I think it depends on what your needs are. If you just need support/friends, share only what you feel like. That could vary day to day. Since I’m on the advocacy side, I know I have to share uncomfortable things. It’s hard, but worth it. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A2 the best advice I got is to push my vulnerability envelope but don’t hurt myself. Vulnerability tends to produce great content but it can also be scary as hell. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey THIS #patientchat |
| My Breast Years Ahead 🎗🎀 ☀️ @MyBreastYrsAhd @gratefull080504 This is true for most if not all disease states. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: How do you know how much to share in a patient community? #patientchat https://t.co/zNrUmb0VJB |
| Annette McKinnon @anetto T3 If you don’t want to see it on the front page of the newspaper then it’s a good idea not to share it. I’m in a group where I trust all of the members I talk to but there are many who never say anything. How can I trust them? #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T3: To me it is all about the sponsor's attentions. In my opinion I think people are sharing too much + that data is serving other agenda's. The communities can have value if they are thought through. Unfortunately, this is infrequent #patientchat |
| Christina Lizaso @btrfly12 RT @MightyCasey: A2: A2: DO NOT shop the idea that your experience is *the* experience. IOW, don't tell new folx they must "do A" or "be X" - help them navigate *their* experience, don't make 'em mirror yours. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T3: T3: How do you know how much to share in a patient community? #patientchat https://t.co/zNrUmb0VJB |
| Christina Lizaso @btrfly12 RT @abrewi3010: A2 community doesn’t have to mean the same diagnosis. Patients helping patients is a powerful tool and learning opportunity #patientchat |
| Christina Lizaso @btrfly12 RT @anetto: T2 if you join a support community you need to be careful not to take up all the space. It’s really good for your own health to reach out and offer help and advice to other people. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @MightyCasey @anetto @MightyCasey : It is always difficult for me to understand your position on a subject #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @carlyflumer Or, more often than not, a complete stranger... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey TOTAL SIDEBAR @drlfarrell has instituted a rule on #irishmed that I endorse Forget t-chat hashtag? SHOT OF TEQUILA FOR YOU. Hell, it's 5 o'clock somewhere 🤣 #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat Have to run to a meeting Take care. |
| Kevin Freiert @K_SalemOaks T3: This is tricky. Start slow and open up as you feel trust(ed). BUT never forget that people outside the community may be watching too. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @gratefull080504 @anetto #patientchat https://t.co/fmlpyWLP49 |
| Alan Brewington @abrewi3010 A3 sharing is a measure that changes as fast as our symptoms do. I use the now to determine how much to share, the now is when vulnerability plays a factor #patientchat |
| Patient Empowerment Network @power4patients @gratefull080504 Thanks for joining us, Kevin. Stay safe & well #patientchat |
| Carly Flumer (she/her) @carlyflumer @K_SalemOaks Yes, it’s good to get a feel for the community and how others are participating. #patientchat |
| Amanda G @LAlupusLady A3 The answers depends on how comfortable you are, the answer may change over time. Share what you feel saying on a megaphone. Stories matter. #PatientChat |
| Christina Lizaso @btrfly12 RT @K_SalemOaks: T3: T3: This is tricky. Start slow and open up as you feel trust(ed). BUT never forget that people outside the community may be watching too. #patientchat |
| My Breast Years Ahead 🎗🎀 ☀️ @MyBreastYrsAhd @patientchat great question. Often times patients feel "safe" in their online communities when that is not always the case. #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: A3 The answers depends on how comfortable you are, the answer may change over time. Share what you feel saying on a megaphone. Stories matter. #PatientChat |
| Amanda G @LAlupusLady RT @carlyflumer: T3: T3: Don’t share any info you’re not comfortable sharing with a friend. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T3: Remember, patient communities should be judgement free zones. Only share what you’re comfortable with, you shouldn’t feel pressured to over share or even under share. Your story is your story. #patientchat |
| Christina Lizaso @btrfly12 RT @DHealthhub: @patientchat T3: @patientchat T3: Remember, patient communities should be judgement free zones. Only share what you’re comfortable with, you shouldn’t feel pressured to over share or even under share. Your story is your story. #patientchat |
| Amanda G @LAlupusLady RT @K_SalemOaks: T3: T3: This is tricky. Start slow and open up as you feel trust(ed). BUT never forget that people outside the community may be watching too. #patientchat |
| Patient Chat @patientchat T4: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/JiBMOTIu9B |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: I'm pretty live-out-loud in general, have been for ... ever. But since web became a weapon of math destruction + engine of endless cybersurveillance in service of ad-tech, I advise against sharing much at all on un-encrypted platforms. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T4: T4: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/JiBMOTIu9B |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/JiBMOTIu9B |
| Carly Flumer (she/her) @carlyflumer @patientchat People who support you! People who listen and respect your opinions. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: A good community is formed with people you might consider friends or a second family, built on trust. #patientchat |
| Patient Chat @patientchat RT @carlyflumer: @patientchat People who support you! People who listen and respect your opinions. #patientchat |
| Christina Lizaso @btrfly12 T4: A good patient community is... welcoming first and foremost. Welcoming is intentional and time is put into gathering resources to share with those just joining to help them in participating and in learning about the diagnosis. #patientchat |
 | Alicia C. Staley @stales RT @MightyCasey: A3: A3: I'm pretty live-out-loud in general, have been for ... ever. But since web became a weapon of math destruction + engine of endless cybersurveillance in service of ad-tech, I advise against sharing much at all on un-encrypted platforms. #patientchat |
| Annette McKinnon @anetto @LAlupusLady It's also a good idea to read the privacy policy of the website. It's easy to skip the small print, and jump in but I saw a site where they basically could have put my data up on a billboard. #patientchat |
| Kevin Freiert @K_SalemOaks T4: Consistent presence. I like #patientchat because of the regular schedule with good topics. I like #pinksocks because, well, they are always there. I like #hcldr because of the topics and multiple viewpoints (but too late for me). |
| Carly Flumer (she/her) @carlyflumer T4: A good community is also a place where you can be yourself and not feel judged. Finding that you’re not alone is the best feeling! #patientchat |
| Patient Empowerment Network @power4patients @patientchat Read what our #patientchat host @carlyflumer has to say about the value of good online communities and some of her favs https://t.co/k1yctk76rL |
| Christina Lizaso @btrfly12 T4: A good patient community... Nurtures those that interact often. Figures out ways to reach out to those who interact less. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T4: T4: A good community is also a place where you can be yourself and not feel judged. Finding that you’re not alone is the best feeling! #patientchat |
| Patient Empowerment Network @power4patients RT @anetto: @LAlupusLady It's also a good idea to read the privacy policy of the website. It's easy to skip the small print, and jump in but I saw a site where they basically could have put my data up on a billboard. #patientchat |
| Amanda G @LAlupusLady A4 A good online patient community should provide resources, support, connection and empathy. Bonus points for a judgement free zone, we are all individuals with our own “stuff” #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: T4: T4: A good patient community is... welcoming first and foremost. Welcoming is intentional and time is put into gathering resources to share with those just joining to help them in participating and in learning about the diagnosis. #patientchat |
| Amanda G @LAlupusLady RT @anetto: @LAlupusLady It's also a good idea to read the privacy policy of the website. It's easy to skip the small print, and jump in but I saw a site where they basically could have put my data up on a billboard. #patientchat |
| Christina Lizaso @btrfly12 RT @anetto: @LAlupusLady It's also a good idea to read the privacy policy of the website. It's easy to skip the small print, and jump in but I saw a site where they basically could have put my data up on a billboard. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Across the board, for those in any patient/health community online, there has to be some kind of Hippocratic oath deal where + evidence-based only + cite SCIENTIFIC sources for dx/tx/rx advice + do not amplify bull$hit #patientchat |
| Amanda G @LAlupusLady RT @btrfly12: T4: T4: A good patient community... Nurtures those that interact often. Figures out ways to reach out to those who interact less. #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: @patientchat Read what our #patientchat host @carlyflumer has to say about the value of good online communities and some of her favs https://t.co/k1yctk76rL |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @LAlupusLady: A4 A good online patient community should provide resources, support, connection and empathy. Bonus points for a judgement free zone, we are all individuals with our own “stuff” #patientchat |
| Christina Lizaso @btrfly12 RT @LAlupusLady: A4 A good online patient community should provide resources, support, connection and empathy. Bonus points for a judgement free zone, we are all individuals with our own “stuff” #patientchat |
| Alan Brewington @abrewi3010 A4 the people make a great community. Great people make quality content but they also are great at elevating others. #patientchat |
| Amanda G @LAlupusLady RT @MightyCasey: Across the board, for those in any patient/health community online, there has to be some kind of Hippocratic oath deal where + evidence-based only + cite SCIENTIFIC sources for dx/tx/rx advice + do not amplify bull$hit #patientchat |
 | ourzonia productions @ourzoniaprod1 RT @carlyflumer: Hello all! I’m excited to be guest-hosting today’s chat about the power of patient communities! #patientchat |
| Patient Chat @patientchat RT @LAlupusLady: A4 A good online patient community should provide resources, support, connection and empathy. Bonus points for a judgement free zone, we are all individuals with our own “stuff” #patientchat |
| Marcela Musgrove @marcela @patientchat I haven't been as active in my patient communities lately but have been more into Broadway board that is more of a distraction and where I can learn more about an interest. I haven't really been involved enough to make connections where people know me though #patientchat |
| Christina Lizaso @btrfly12 T4: I put a high value on communities that are kind while at the same time push evidence-based information and call attention when things are not backed by science. #patientchat |
| Kevin Freiert @K_SalemOaks T4: And communities go beyond SoMed. I have had the pleasure of meeting many @CureFA_org and #Ataxia community members IRL. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T4: #AYACSM is a great mix of fun/ serious discussion. @EK_Drake is a fantastic bridge to make academia accessible by being genuine. @gyncsm is another favorite. @btrfly12 and @womenofteal are two great advocates with excellent topics. #patientchat |
| Kevin Freiert @K_SalemOaks #patientchat |
| Christina Lizaso @btrfly12 T4: A good patient community... listens to its participants and adapts and grows over time. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... #patientchat |
| Alan Brewington @abrewi3010 RT @MightyCasey: Across the board, for those in any patient/health community online, there has to be some kind of Hippocratic oath deal where + evidence-based only + cite SCIENTIFIC sources for dx/tx/rx advice + do not amplify bull$hit #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T4: T4: #AYACSM is a great mix of fun/ serious discussion. @EK_Drake is a fantastic bridge to make academia accessible by being genuine. @gyncsm is another favorite. @btrfly12 and @womenofteal are two great advocates with excellent topics. #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: T4: T4: What makes a good online community? Tell us about some of your favorites. #patientchat https://t.co/JiBMOTIu9B |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: BUT, and HOWEVER, I did write a freakin' book about my breast cancer dx/tx experience, so it's not like that horse isn't outta the barn and six states over. Book came out in '09, so ... 🤷🏼♀️🤷🏼♀️#patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A4 the people make a great community. Great people make quality content but they also are great at elevating others. #patientchat |
| Patient Chat @patientchat T5: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/Nqewkxg8t6 |
| Christina Lizaso @btrfly12 RT @patientchat: T5: T5: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/Nqewkxg8t6 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: T4: T4: I put a high value on communities that are kind while at the same time push evidence-based information and call attention when things are not backed by science. #patientchat |
| Alan Brewington @abrewi3010 A4 you know you have a great community when you attend your first conference and everyone feels like a long term friend already #medx #patientchat |
| Seth Rotberg @Srotberg15 RT @LAlupusLady: A4 A good online patient community should provide resources, support, connection and empathy. Bonus points for a judgement free zone, we are all individuals with our own “stuff” #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat T5: Use your community as an opportunity to learn and share evidence-based knowledge. #patientchat |
| Alexa Jett 🦋 @ohhiialexa And yes @btrfly12, I was already going to mention you before I knew you would be on #patientchat today!! |
| Kevin Freiert @K_SalemOaks @MightyCasey Interseting. Books may be different because they are not as easily retweeted, trolled, or open up your #digitome. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Describe what you’re going through as a patient or caregiver, mentally, physically, emotionally. Empathize with others! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T5: Awareness and making my voice heard. I believe things have to come out of the darkness to change. I hope so much by being honest someone else will feel they aren’t alone, because that’s what the health community does for me. #patientchat |
| Annette McKinnon @anetto T4 Though I haven’t been there lately I always appreciated Sjogrens World. If it was a great storehouse of knowledge. I’ve also been in some excellent yahoo groups in my life. It’s great to Learn from patient experts. #patientchat |
| Christina Lizaso @btrfly12 T5: I definitely tend to post when I'm going through rounds of scaniexty. Just touching base with those who have been there and can remind me ways to get to the other side. I also get feedback for myself and others on things I might be hearing in another venue. #patientchat |
| Alan Brewington @abrewi3010 A5 as a chronic patient, a great community can be like a nice blanket, sometimes you just need to wrap yourself in it. #patientchat |
 | Emily K. Drake @EK_Drake RT @ohhiialexa: T4: T4: #AYACSM is a great mix of fun/ serious discussion. @EK_Drake is a fantastic bridge to make academia accessible by being genuine. @gyncsm is another favorite. @btrfly12 and @womenofteal are two great advocates with excellent topics. #patientchat |
| Patient Empowerment Network @power4patients @patientchat Did you know #patientchat has a private FB group? We created it to keep the bi-weekly tweetchat discussions going between chats. It's grown into a strong community founded on the same core principles of #patientchat empathy, support & privacy https://t.co/tDl7Uk4Q49 |
| Christina Lizaso @btrfly12 @ohhiialexa aw thanks. Always great to tweet along with you. Thanks for all you do as an advocate for yourself and others! #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A5 as a chronic patient, a great community can be like a nice blanket, sometimes you just need to wrap yourself in it. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: HA. Since I've worked from home office since '00, the only human interaction I have most days is via the web/phone. So there's that. Finding my tribe online during cancer dx/tx was a literal lifeline. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: T5: T5: I definitely tend to post when I'm going through rounds of scaniexty. Just touching base with those who have been there and can remind me ways to get to the other side. I also get feedback for myself and others on things I might be hearing in another venue. #patientchat |
| Amanda G @LAlupusLady A5 Many patients might feel isolated and alone, they (I do...) gain a sense of collaboration and there is a team of people who “get you” #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/Nqewkxg8t6 |
| Amanda G @LAlupusLady RT @ohhiialexa: T5: T5: Awareness and making my voice heard. I believe things have to come out of the darkness to change. I hope so much by being honest someone else will feel they aren’t alone, because that’s what the health community does for me. #patientchat |
| Annette McKinnon @anetto RT @btrfly12: T4: T4: I put a high value on communities that are kind while at the same time push evidence-based information and call attention when things are not backed by science. #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T5: T5: Awareness and making my voice heard. I believe things have to come out of the darkness to change. I hope so much by being honest someone else will feel they aren’t alone, because that’s what the health community does for me. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/Nqewkxg8t6 |
| Christina Lizaso @btrfly12 RT @abrewi3010: A5 as a chronic patient, a great community can be like a nice blanket, sometimes you just need to wrap yourself in it. #patientchat |
| Kevin Freiert @K_SalemOaks If you don't know, now you know. (I didn't) #patientchat |
 | Our Odyssey @_OurOdyssey_ RT @LAlupusLady: A5 Many patients might feel isolated and alone, they (I do...) gain a sense of collaboration and there is a team of people who “get you” #PatientChat |
| Carly Flumer (she/her) @carlyflumer @btrfly12 #scanxiety HATER here! 🙋♀️ @livinginsteil has an awesome article about dealing with this! #thycachicks #patientchat |
| Christina Lizaso @btrfly12 RT @LAlupusLady: A5 Many patients might feel isolated and alone, they (I do...) gain a sense of collaboration and there is a team of people who “get you” #PatientChat |
| Our Odyssey @_OurOdyssey_ RT @carlyflumer: T4: T4: A good community is formed with people you might consider friends or a second family, built on trust. #patientchat |
| Patient Empowerment Network @power4patients @K_SalemOaks Now that you know, we hope you'll join us #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: A5 Many patients might feel isolated and alone, they (I do...) gain a sense of collaboration and there is a team of people who “get you” #PatientChat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer @btrfly12 @livinginsteil Sign me up for the scanxiety hate-a-thon with extra haterade, please. #patientchat |
| Patient Chat @patientchat Last topic (T6:) coming up... #patientchat |
| Alan Brewington @abrewi3010 A5 my community is a place I can share my entire story, not just the negative experiences. A community should be based on giving and receiving love as your story change. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @K_SalemOaks Maybe, but since book has its own site/Twitter/FB page ... 🤷🏼♀️#patientchat |
| Kevin Freiert @K_SalemOaks @power4patients Well, you know. I will try. #patientchat |
| Patient Chat @patientchat T6: What are the pros and cons of in-person vs. online patient communities? Do you have a preference? #patientchat https://t.co/ttXIyJUAm0 |
| Christina Lizaso @btrfly12 @abrewi3010 I like that in several ovarian cancer groups, there will be a thread going of just for fun stuff and sharing talents. We are people first. #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat I like in-person communities because of the face-to-face experience! It’s great to see the emotions expressed on people’s faces. #realtalk #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T6: T6: What are the pros and cons of in-person vs. online patient communities? Do you have a preference? #patientchat https://t.co/ttXIyJUAm0 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa @carlyflumer @btrfly12 @livinginsteil OH, YEAH. Funny story. Used to be a smoker (quit in '06) Breast cancer dx 12/2007 Scheduled lo-dose CT for lung cancer screening on ... wait for it ... 10TH ANNIVERSARY OF BREAST CANCER DX. *that* was fun AF when I realized I'd done that TO MYSELF 🤣 #patientchat |
| Annette McKinnon @anetto T6 it’s really hard to get together with people in person whether you’re urban or rural. With an online patient community there’s almost always somebody there that you can talk to. #patientchat |
| Amanda G @LAlupusLady A6 Both are helpful. It is powerful to get a hug from an online friend IRL, but as an immune compromised person, social media support is an asset. #PatientChat |
| Amanda G @LAlupusLady RT @anetto: T6 it’s really hard to get together with people in person whether you’re urban or rural. With an online patient community there’s almost always somebody there that you can talk to. #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat But! I also love online communities! Groups like @power4patients, @_OurOdyssey_ , @teaminspire, @StupidCancer, and many others all have wonderful platforms to meet and connect with others. #patientchat |
| Kevin Freiert @K_SalemOaks The main pro for in-person communities is the ability to get to know the people better beyond the main topic. Trust takes time, in-person helps. #patientchat |
| Christina Lizaso @btrfly12 T6: As a total introvert, I am online community all the way. 24/7 access. Think through my thoughts and comments. Meet people all over. Plus for rarer stuff like CHEK2, there would never be enough to meet regularly in person. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T6: Well, in-person typically has snacks! 😉 I love Twitter though. You can bring medical, academic, and patient communities together all around the world via tweet chats. I am certain that these provide viable change in our communities. #patientchat |
| Our Odyssey @_OurOdyssey_ RT @carlyflumer: @patientchat But! I also love online communities! Groups like @power4patients, @_OurOdyssey_ , @teaminspire, @StupidCancer, and many others all have wonderful platforms to meet and connect with others. #patientchat |
| Alan Brewington @abrewi3010 We are people first, should be the mantra for all community’s! #patientchat |
| Carly Flumer (she/her) @carlyflumer @btrfly12 Yes! The diversity online is amazing!! #patientchat |
| Kevin Freiert @K_SalemOaks But that's the main CON for in-person. Esp in COVID-world. It is difficult to carve out the time, and may even require travel. #patientchat more coming... |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey @carlyflumer @btrfly12 @livinginsteil Do you live life on challenge mode??? #patientchat |
| Amanda G @LAlupusLady Off Topic #PatientChat Today at 3PM Eastern @AngiePontani is offering a Go-Go Robics class on her Instagram. Dance with us... #QuarantineLife |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T6: I tend to avoid joining in F2F/IRL until I've gotten a sense of the tribal zeitgeist. I am NOT a girly-touchy-feely type ♀♀so that kind of vibe is a put-off for me. #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T6: T6: Well, in-person typically has snacks! 😉 I love Twitter though. You can bring medical, academic, and patient communities together all around the world via tweet chats. I am certain that these provide viable change in our communities. #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: @patientchat But! I also love online communities! Groups like @power4patients, @_OurOdyssey_ , @teaminspire, @StupidCancer, and many others all have wonderful platforms to meet and connect with others. #patientchat |
 | The Light Collective ☀️ @BeLikeLight RT @patientchat: T6: T6: What are the pros and cons of in-person vs. online patient communities? Do you have a preference? #patientchat https://t.co/ttXIyJUAm0 |
| Alan Brewington @abrewi3010 A6 maybe I’m old but nothing beats a face to face relationship. Even if it’s only once, there is a human centerness there. That said, online relationships are powerful and less resource intensive most of the tine. #patientchat |
| Patient Empowerment Network @power4patients @patientchat There's nothing like a global pandemic to help us truly see the value of online communities. Can you imagine #socialdistancing before the internet? For immunocomprised patients, on-line communities are a life line every single day #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: We are people first, should be the mantra for all community’s! #patientchat |
| Kevin Freiert @K_SalemOaks The PRO for online is that you can interact with so many more people. The CON is that the short bursts do not allow for deeper discussions. We need both. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa @carlyflumer @btrfly12 @livinginsteil Well, my next book's title is "Welcome to My Country, Heathen Slut" where the open/anchor story is when I talked my way out of police custody in Saudi, so ... DEFINITELY MAYBE. #patientchat |
| Carly Flumer (she/her) @carlyflumer @power4patients @patientchat Love this, Andrea!! #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat But! I also love online communities! Groups like @power4patients, @_OurOdyssey_ , @teaminspire, @StupidCancer, and many others all have wonderful platforms to meet and connect with others. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @K_SalemOaks: The PRO for online is that you can interact with so many more people. The CON is that the short bursts do not allow for deeper discussions. We need both. #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: A6 Both are helpful. It is powerful to get a hug from an online friend IRL, but as an immune compromised person, social media support is an asset. #PatientChat |
| The Light Collective ☀️ @BeLikeLight Wow FANTASTIC topic today via #PatientChat! 🌟 |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: What are the pros and cons of in-person vs. online patient communities? Do you have a preference? #patientchat https://t.co/ttXIyJUAm0 |
| The Light Collective ☀️ @BeLikeLight RT @btrfly12: T2: T2: Patient community do's and don'ts... Do know it is okay to step away from time to time. Your needs and ability to support others will vary. Nice if you give community heads-up so they don't worry when you need to step back. #patientchat |
 | ThyCa Inc. @ThyCaInc RT @ohhiialexa: T1: T1: Hashtags are your friend! Searching a diagnosis in hashtags is an easy way to connect with individuals/organizations. Which brings me to the next point, find your advocacy organization if you have one. @ThyCaInc is mine and they are amazing. #patientchat |
| Carly Flumer (she/her) @carlyflumer @K_SalemOaks As you said, in-person is usually time-restricted. Not enough of it to get in everything you want to say! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa @carlyflumer @btrfly12 @livinginsteil Totes true story. Has LOTS of Hunter Thompson references/tie-ins, that story. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Amanda G @LAlupusLady RT @BeLikeLight: Wow FANTASTIC topic today via #PatientChat! 🌟 |
| Diverse Health Hub @DHealthhub T6: In-person communities can have more benefits because in a sense the support is more “tangible,” but online communities are not to be underestimated. There’s no limit to the growth of an online community and some people are in rural areas where it is their only choice. |
| Amanda G @LAlupusLady CT please be safe, stay at home, physical distancing does not mean we have to lose our connection to our community. #patientchat https://t.co/BSTB9PUTaU |
| Carly Flumer (she/her) @carlyflumer @patientchat Once you find your community, you’ll know! Don’t be afraid to share what you’re going through, your opinions, and learn from others! #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: CT please be safe, stay at home, physical distancing does not mean we have to lose our connection to our community. #patientchat https://t.co/BSTB9PUTaU |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat Once you find your community, you’ll know! Don’t be afraid to share what you’re going through, your opinions, and learn from others! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey General note (and callback to #cyberhygiene chat 2 wks ago) - if you want resources for community development, check out the @BeLikeLight site. Start here: https://t.co/jGvpBekG1G #BeLikeLight #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Christina Lizaso @btrfly12 CT: Community doesn't just happen, it takes effort - effort that is totally worth it. Peer support should be recommended following any and all diagnoses. Love what I learn and gain from cross-disease communities. #patientchat |
| Patient Chat @patientchat RT @carlyflumer: @patientchat Once you find your community, you’ll know! Don’t be afraid to share what you’re going through, your opinions, and learn from others! #patientchat |
| Kevin Freiert @K_SalemOaks CT #patientchat I was glad to join today. Uplifting. As we deal with this crisis, communities like this are bound to grow and have the chance to exert influence. Thanks everyone. @SalemOaks #StayHomeStaySafe #StayHomeSaveLives |
| Alexa Jett 🦋 @ohhiialexa CT: While our preferences of in-person vs online, touchy feely vs facts, personal vs clinical may vary, we are ALL looking for community. And that is a wonderful thing, dear friends. Thank you for our community time today! #patientchat |
| Christina Lizaso @btrfly12 RT @LAlupusLady: CT please be safe, stay at home, physical distancing does not mean we have to lose our connection to our community. #patientchat https://t.co/BSTB9PUTaU |
| Christina Lizaso @btrfly12 RT @carlyflumer: @patientchat Once you find your community, you’ll know! Don’t be afraid to share what you’re going through, your opinions, and learn from others! #patientchat |
| Marcela Musgrove @marcela RT @LAlupusLady: CT please be safe, stay at home, physical distancing does not mean we have to lose our connection to our community. #patientchat https://t.co/BSTB9PUTaU |
| Christina Lizaso @btrfly12 RT @MightyCasey: General note (and callback to #cyberhygiene chat 2 wks ago) - if you want resources for community development, check out the @BeLikeLight site. Start here: https://t.co/jGvpBekG1G #BeLikeLight #patientchat |
| Amanda G @LAlupusLady Thank you @patientchat #PatientChat |
| Patient Chat @patientchat RT @ohhiialexa: CT: CT: While our preferences of in-person vs online, touchy feely vs facts, personal vs clinical may vary, we are ALL looking for community. And that is a wonderful thing, dear friends. Thank you for our community time today! #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: CT: CT: While our preferences of in-person vs online, touchy feely vs facts, personal vs clinical may vary, we are ALL looking for community. And that is a wonderful thing, dear friends. Thank you for our community time today! #patientchat |
| The Light Collective ☀️ @BeLikeLight RT @MightyCasey: General note (and callback to #cyberhygiene chat 2 wks ago) - if you want resources for community development, check out the @BeLikeLight site. Start here: https://t.co/jGvpBekG1G #BeLikeLight #patientchat |
| Alan Brewington @abrewi3010 CT A community should be a place where one can give and take support as needed, learn and discover, and practice ideation and design. Failure should be celebrated as a learning opportunity and stories should be about life. #patientchat |
| Christina Lizaso @btrfly12 We all seek connection. Thanks to all who joined in and listened along today. Sending love and light. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @carlyflumer: @patientchat Once you find your community, you’ll know! Don’t be afraid to share what you’re going through, your opinions, and learn from others! #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: CT A community should be a place where one can give and take support as needed, learn and discover, and practice ideation and design. Failure should be celebrated as a learning opportunity and stories should be about life. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Chat @patientchat Thanks so much @carlyflumer for sharing your insights and being our special guest for today’s #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Empowerment Network @power4patients CT #patientchat Stay safe & well, everyone! Remember, it's #physicaldistance we need now but please stay connected & engaged and if you're still not convinced that online communities are for you, check out this post by the fab @JBBC https://t.co/k1yctk76rL |
| Carly Flumer (she/her) @carlyflumer @patientchat Thanks for letting me guest host!! It was fun. :) For anyone insterested in my latest work, you can find a video I did for @teaminspire’s #keepusallsafe campaign on YouTube and connect with me through here! #patientchat |
| Patient Chat @patientchat We’ll be back in two weeks for another Empowered #patientchat on April 17th. Hope to see you there! https://t.co/Uynd4VWgQR |
| Christina Lizaso @btrfly12 #patientchat side note.... not preferred to use the term "tribe" which many people do use and I've previously used before digging a little deeper |
| Carly Flumer (she/her) @carlyflumer @patientchat I’m also @power4patients’s #thyroidcancer network manager! For any #thycawarriors, feel free to reach out at carly@powerfulpatients.org. ❤️ #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat |
| Patient Empowerment Network @power4patients If you're wondering how to stay connected and engaged during #COVID2019 (or anytime, really), we've update our PEN-Powered Activity Guide to give you some ideas! Please check it out and share it with anyone who needs it #patientchat https://t.co/773ARhbPXa |
 | Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Christina Lizaso @btrfly12 RT @power4patients: CT #patientchat Stay safe & well, everyone! Remember, it's #physicaldistance we need now but please stay connected & engaged and if you're still not convinced that online communities are for you, check out this post by the fab @JBBC https://t.co/k1yctk76rL |
| Christina Lizaso @btrfly12 RT @patientchat: We’ll be back in two weeks for another Empowered #patientchat on April 17th. Hope to see you there! https://t.co/Uynd4VWgQR |
 | Sommer Consulting @SommerConsults Are you following today's #patientchat? What do you think makes a good online community? |
| Patient Empowerment Network @power4patients @carlyflumer @JBBC Oops, my bad! I got excited and copied the wrong link #patientchat |
 | Barby Ingle Official @BarbyIngle RT @btrfly12: CT: CT: Community doesn't just happen, it takes effort - effort that is totally worth it. Peer support should be recommended following any and all diagnoses. Love what I learn and gain from cross-disease communities. #patientchat |
#patientchat content from Twitter.