#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 to all! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat! |
 | Vera Rulon FAHIMA @vrulon Hello #patientchat folks! After a long absence, I'm back (at least for a half hour). Today I am chatting with you from North Carolina. |
 | Marie Ennis-O'Connor @JBBC Looking forward to answering your questions #empowered #patientchat |
| Patient Chat @patientchat I am so happy to have Marie @JBBC joining as our guest today! Can’t wait to hear about what you all would like chat about today! #patientchat |
| Patient Chat @patientchat RT @JBBC: Looking forward to answering your questions #empowered #patientchat |
 | Lorrie @LorrieForseth @patientchat Good morning, I'm Lorrie a Patient advocate caregiver voice in the Epilepsy community. I'm from Vancouver Canada 👋 #patientchat |
 | Patient Empowerment Network @power4patients Hi #patientchat! Kara from PEN here and excited to hear your questions |
| Marie Ennis-O'Connor @JBBC @vrulon Hi Vera- great to have you joining #PatientChat |
| Patient Chat @patientchat @LorrieForseth Hi Lorrie, it’s always nice to have you join us! #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @patientchat Hi there Lorrie #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #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 |
 | Alan Brewington @abrewi3010 Alan here. I come from the #rheum #chronicpain #afib #Caregiver worlds. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Patient Chat @patientchat Today's #patientchat is an “Ask Me Anything” chat with Marie @JBBC. So yes, please ask anything! You can also see suggested topics here: https://t.co/HyKJh8c0Bq |
| Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat is an “Ask Me Anything” chat with Marie @JBBC. So yes, please ask anything! You can also see suggested topics here: https://t.co/HyKJh8c0Bq |
| Marie Ennis-O'Connor @JBBC #patientchat I also have my sleepy kitten with me https://t.co/CJnIaH7fYx |
| Patient Chat @patientchat @vrulon Happy to have you join us, Vera! #patientchat |
| Patient Chat @patientchat Today we will not have our regular labeled Topic Questions (T1, T2) we are open to hearing the topics and questions that you have. We have Maire @JBBC ready to hear your thoughts #patientchat |
| Patient Chat @patientchat @abrewi3010 Happy Friday, Alan! #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 Hi Alan great to connect with you again #patientchat |
| Patient Chat @patientchat Such a cutie 🤗🤗 #patientchat |
| Alan Brewington @abrewi3010 @patientchat Happy Friday to you too! #PatientChat |
| Marie Ennis-O'Connor @JBBC Maybe I can start off with a question @patientchat? #patientchat |
| Alan Brewington @abrewi3010 @JBBC Hi! Always enjoy talking/learning from you. #patientchat |
| Patient Chat @patientchat What would you like to ask Marie @JBBC? #patientchat Let's hear your questions! |
| Marie Ennis-O'Connor @JBBC @patientchat great - so my question to everyone is. What is your biggest challenge when it comes to using #socialmedia? #patientchat |
| Patient Chat @patientchat #patientchat ⬇️⬇️ |
| Patient Empowerment Network @power4patients RT @JBBC: @patientchat great - so my question to everyone is. What is your biggest challenge when it comes to using #socialmedia? #patientchat |
| Lorrie @LorrieForseth @patientchat @JBBC How can the Epilepsy community get more people ( including media ) talking about it? Unless there is a major event , it rarely is spoken about on the media level unlike other causes. #patientchat |
| Alan Brewington @abrewi3010 T1 making sure everyone an listen & understand my voice without the need for interpretation or assumptions. My voice makes for better storytelling but that’s sometimes hard to convey through electrons. #patientchat |
| Patient Chat @patientchat RT @LorrieForseth: @patientchat @JBBC How can the Epilepsy community get more people ( including media ) talking about it? Unless there is a major event , it rarely is spoken about on the media level unlike other causes. #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 Great question Alan and yes you are so right - that we cannot always convey what we need through electrons :-) #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 I think the answer has to be video where you can convey what you need to with passion -or if you arent' comfortable on video - and I'm not ;-) then audio is huge #patientchat |
| Vera Rulon FAHIMA @vrulon T1 - Social media can be difficult due to mis-information that is out there. I find myself researching link crazy to ensure that I am getting the information I am looking for and it is accurate. #patientchat |
| Lorrie @LorrieForseth @JBBC @patientchat Biggest challenge for those I see in social media #Epilepsy community is , there are so many people outside the community that does not even know it exists . If you sit back & watch , you notice a lot. There are many people who think they are fighting it alone. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @patientchat Hi Lorrie - this is a great question - have you researched which journalists - and there are many on Twitter - have tweeted about #epilepsy? #patientchat |
| Alan Brewington @abrewi3010 @JBBC That’s part of my problem, my self esteem says I’m not made for video or audio. It’s hard to overcome that vulnerability especially when dealing with a rheumatoid or chronic pain flare. #patientchat |
| Patient Chat @patientchat RT @vrulon: T1 - Social media can be difficult due to mis-information that is out there. I find myself researching link crazy to ensure that I am getting the information I am looking for and it is accurate. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @patientchat Lorrie how sad for people to feel they are alone with any disease or condition #patientchat |
| Marie Ennis-O'Connor @JBBC @vrulon Vera this is the #1 issue with social media - misinformation. I come up against this all the time. My solution is to find my trusted sources online and run things past them #patientchat |
| Lorrie @LorrieForseth @JBBC @patientchat I know for where I live here in British Columbia Canada, if there is not a major event , the media ( not the agencies) , rarely talk about #Epilepsy. Epilepsy Awareness month in Canada is March unlike the USA which is November, but we can advocate 365 days a year #patientchat |
| Patient Chat @patientchat @JBBC I think a lot of people sometimes don’t know where to start. They may be intimidated by other patient opinion leaders with larger followings but everyone no matter how big or small can make a difference especially in advocacy! #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 I get this Alan - but hey you're a Stanford MedX alumni! You can do this! #patientchat |
| Alan Brewington @abrewi3010 I know being vulnerable helps the quality of my content & storytelling. Emotional vulnerability is one thing, that self esteem based vulnerability is a bigger mountain to overcome. Anyone deal with this? #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 the question of vulnerability online is a very interesting one. Personally I find that people respond positively to vulnerability. Have you read Brene Brown on this? #patientchat |
| Lorrie @LorrieForseth @JBBC @patientchat Agreed . No one should ever feel alone .#patientchat |
| Alan Brewington @abrewi3010 @JBBC No I haven’t. I don’t think I’ve ever heard that name before. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @patientchat this is true of all diseases I think Lorrie. Yes some get more attention but it is usually only at specific times. With the media it is often about finding an angle that will get their interest #patientchat |
| Patient Chat @patientchat Are there any “unwritten rules” for patient advocates in the social media space? @JBBC #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 here you go Aland https://t.co/QZRJMyrbuq watch this and do let me know what you think #PatientChat |
| Vera Rulon FAHIMA @vrulon @JBBC Excellent advice! I have my go to advocates and often, if I don't feel the truth is evident have reached out to my doctor for clarification #patientchat |
| Lorrie @LorrieForseth @abrewi3010 I used to always be afraid when I started advocating for Epilepsy Awareness, who will even care ? Who will listen ? Will what I say even matter ? Then I decided after watching others , I can do it too ! I've made errors, but I might be the only voice they see .#patientchat |
| Marie Ennis-O'Connor @JBBC @patientchat Being Irish, I'm not a big fan of "rules" :-) but I do personally thing it's important to act professionally online - as patients we are so often dismissed as being "just a patient" but if we can show our expertise as patients we can start to shift this perception #PatientChat |
| Marie Ennis-O'Connor @JBBC Lorrie, I love this - thank you #PatientChat |
| Alan Brewington @abrewi3010 @JBBC Thanks! #patientchat |
| Lorrie @LorrieForseth @JBBC @patientchat I wish all diseases had the same amount of media time , not one more than another, equal , so everyone is heard , including #Epilepsy and #SUDEP. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @abrewi3010 you remind me Lorrie of the Margaret Mead quote “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” #PatientChat |
| Patient Chat @patientchat RT @JBBC: @patientchat Being Irish, I'm not a big fan of "rules" :-) but I do personally thing it's important to act professionally online - as patients we are so often dismissed as being "just a patient" but if we can show our expertise as patients we can start to shift this perception #PatientChat |
| Alan Brewington @abrewi3010 RT @JBBC: @LorrieForseth @abrewi3010 you remind me Lorrie of the Margaret Mead quote “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” #PatientChat |
| Lorrie @LorrieForseth @JBBC @abrewi3010 I've never seen that quote before , thanks for sharing it with me Marie #patientchat |
| Lorrie @LorrieForseth RT @JBBC: @LorrieForseth @abrewi3010 you remind me Lorrie of the Margaret Mead quote “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” #PatientChat |
 | EpMatch @epstrong RT @LorrieForseth: @JBBC @patientchat I wish all diseases had the same amount of media time , not one more than another, equal , so everyone is heard , including #Epilepsy and #SUDEP. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @abrewi3010 i love it Lorrie - i use it all the time - never underestimate the power of even on voice #patientchat |
| Patient Chat @patientchat Do you have any tips for finding or creating a community online? @JBBC #patientchat |
| Alan Brewington @abrewi3010 Unwritten Rule - High follower count does not mean success. Success is actively listening to others. Getting conferences to follow the #Medx model. Success is human centered. #patientchat |
| Marie Ennis-O'Connor @JBBC @patientchat the obvious tip here on Twitter is to search hashtags related to your interest #patientchat |
| Marie Ennis-O'Connor @JBBC @patientchat and the very best way to start connecting with people is through tweet chats like #patientchat |
| Marie Ennis-O'Connor @JBBC @patientchat of course Facebook is very popular for patient interest groups too #patientchat |
| Patient Chat @patientchat RT @abrewi3010: Unwritten Rule - High follower count does not mean success. Success is actively listening to others. Getting conferences to follow the #Medx model. Success is human centered. #patientchat |
| Alan Brewington @abrewi3010 A community doesn’t have a universal definition. In my case it doesn’t have to be all #chronicpain patients. It’s a group that’s asks, how might we? #patientchat |
| Alan Brewington @abrewi3010 RT @JBBC: @patientchat and the very best way to start connecting with people is through tweet chats like #patientchat |
| Marie Ennis-O'Connor @JBBC @abrewi3010 good point Alan - we should look outside our disease or condition and learn from the patient community as a whole #patientchat |
| Lorrie @LorrieForseth @JBBC @abrewi3010 There are lots of voices out there , with 65million plus people with #Epilepsy including their families, I'm sure someone in the media sees this everyday. #patientchat |
| Vera Rulon FAHIMA @vrulon @JBBC @abrewi3010 Couldn't agree more #patientchat Experiences across the spectrums can inform us. |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @abrewi3010 you need to keep up visibility Lorrie - sometimes the simple act of being visible and present can have a good effect #patientchat |
| Alan Brewington @abrewi3010 RT @JBBC: @abrewi3010 good point Alan - we should look outside our disease or condition and learn from the patient community as a whole #patientchat |
| Lorrie @LorrieForseth @abrewi3010 I don't even look at my follower count , grateful for everyone who is curious in what I talk about . I'm sure I annoy the heck out of some always talking about Epilepsy awareness but ,my Twitter my voice 🤷♀️. To me advocating is like planting a seed & hoping it grows #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @abrewi3010 that's a great analogy about planting the see Lorrie! #patientchat |
| Patient Chat @patientchat RT @LorrieForseth: @abrewi3010 I don't even look at my follower count , grateful for everyone who is curious in what I talk about . I'm sure I annoy the heck out of some always talking about Epilepsy awareness but ,my Twitter my voice 🤷♀️. To me advocating is like planting a seed & hoping it grows #patientchat |
| Lorrie @LorrieForseth @JBBC @abrewi3010 Thanks Marie , I'm trying , I just wonder sometimes if what I do really makes a difference. #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth @abrewi3010 you don't know who may be listening Lorrie - there are many people who are listening but perhaps you don't even know it #patientchat |
| Lorrie @LorrieForseth @JBBC @abrewi3010 The planting the seed quote I found and put it towards my own advocating for others including my own daughter with Epilepsy , I saw here ⬇️ https://t.co/RPLtmCFUwd #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Let us know your thoughts! Start your tweet w/ CT: #patientchat |
| Marie Ennis-O'Connor @JBBC @LorrieForseth thanks for sharing Lorrie #patientchat |
| Alan Brewington @abrewi3010 @JBBC @LorrieForseth Especially true for chats like this one. Chats can be intimidating if you’ve never participated in one or are new to the Twitter #patientchat |
| Lorrie @LorrieForseth @JBBC @abrewi3010 As long as the ones who are listening are getting proper info about Epilepsy awareness from someone who has been there fighting daily . Education & resources are important. There is no cure . #patientchat |
| Alan Brewington @abrewi3010 CT it’s just a bad day, which we have earned the right too, not a bad life. You never know who you can help raise their quality of life so they can have a good life. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Lorrie @LorrieForseth RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Let us know your thoughts! Start your tweet w/ CT: #patientchat |
| Patient Chat @patientchat Thank you Marie @JBBC for joining us today and thank you to everyone who joined in. #patientchat Happy Friday everyone! Wishing you all a wonderful weekend! |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Marie Ennis-O'Connor @JBBC @patientchat thanks everyone and keep up the great work! #patientchat |
| Lorrie @LorrieForseth @patientchat CT: I know I'm not perfect, I have a long way to go along with so many others who have a loved one with #Epilepsy or have it themselves, we just want our voices to be heard . Keep being that voice for those not ready to speak out yet . Support others , be seen #patientchat |
| EpMatch @epstrong RT @LorrieForseth: @patientchat CT: @patientchat CT: I know I'm not perfect, I have a long way to go along with so many others who have a loved one with #Epilepsy or have it themselves, we just want our voices to be heard . Keep being that voice for those not ready to speak out yet . Support others , be seen #patientchat |
| Patient Chat @patientchat Stay tuned for our next Empowered #patientchat on Friday, November 12th at 10 AM PT/ 1 PM ET! https://t.co/nGw582jsrf |
#patientchat content from Twitter.