#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
Profile | Tweet |
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![]() | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
![]() | Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
![]() | Amanda G @LAlupusLady I’m happy to share my Questions and Answers today. #PatientChat |
![]() | Patient Chat @patientchat @LAlupusLady Happy to have you here Amanda! #patientchat |
![]() | Patient Chat @patientchat I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat. Happy Friday to all! |
![]() | Amanda G @LAlupusLady RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
![]() | Alan Brewington @abrewi3010 Hello everyone. Recovering from a bad fall yesterday which has left me in pain. I shouldn’t be left alone. #patientchat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi everyone! I’m Adam, a DadVocate with a rare disease. Looking forward to the chat today. #PatientChat |
![]() | Patient Chat @patientchat I am honored to introduce our guest host Amanda (@Lalupuslady) today! Welcome, Amanda 😊 #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 |
![]() | Amanda G @LAlupusLady Hi. Amanda from Los Angeles. Living with lupus, sharing #LupusWithFlair all May. #PatientChat https://t.co/gE93mQub1H |
![]() | Amanda G @LAlupusLady RT @patientchat: I am honored to introduce our guest host Amanda (@Lalupuslady) today! Welcome, Amanda 😊 #patientchat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Oh, no, Alan. Hope you're ok & able to get on the mend soon. Glad you're here for #patientchat. You won't be alone virtually for the next hour. I also know many in the community, including me, are here for you whenever you need it outside of that as well. Reach out anytime. |
![]() | Amanda G @LAlupusLady RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical need… |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @LAlupusLady Hi Amanda! Looking forward to seeing your thoughts as well. Always insightful and helpful! #PatientChat |
![]() | Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
![]() | Amanda G @LAlupusLady Thanks Adam. #patientchat fun. |
![]() | Patient Empowerment Network @power4patients Hi everyone! Kara from PEN here and looking forward to hearing and learning from you all #patientchat |
![]() | Alan Brewington @abrewi3010 @LAlupusLady Hi! This will be a great conversation with you leading! #patientchat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: @LAlupusLady Hi! This will be a great conversation with you leading! #patientchat |
![]() | Amanda G @LAlupusLady RT @power4patients: Hi everyone! Kara from PEN here and looking forward to hearing and learning from you all #patientchat |
![]() | Patient Chat @patientchat Today's #patientchat is a “Collaboration: Connecting and Empowering Patient Communities” Empowered #patientchat https://t.co/TtJS8IXdU7 |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @patientchat Hi everyone! I’m Adam, a DadVocate with a rare disease. Looking forward to the chat today. #PatientChat |
![]() | Alan Brewington @abrewi3010 @RareDiseaseDad Thank you! #patientchat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: As part of #ArthritisAwarenessMonth I’m using part of my lunch to go on a 30 minute walk around my neighborhood. Today I fo… |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @abrewi3010 Oh, no, Alan. Hope you're ok & able to get on the mend soon. Glad you're here for #patientchat. You won't b… |
![]() | Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of your answer - hard to remember but helpful #patientchat |
![]() | Amanda G @LAlupusLady Gentle hugs. #PatientChat |
![]() | Amanda G @LAlupusLady RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of your answer - hard to remember but… |
![]() | Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat is a “Collaboration: Connecting and Empowering Patient Communities” Empowered #patientchat https://t.… |
![]() | Patient Chat @patientchat T1: How can collaboration help patient communities connect? #patientchat https://t.co/Z18OHJF9Uh |
![]() | Patient Chat @patientchat [REDACTED USER] Nice to have you joining us today! #patientchat |
![]() | Amanda G @LAlupusLady RT @patientchat: T1: How can collaboration help patient communities connect? #patientchat https://t.co/Z18OHJF9Uh |
![]() | Amanda G @LAlupusLady T1. Collaborating within and beyond your “health condition” can help individuals and organizations grow their community authentically. Working together on a project or campaign encourages support and awareness. #patientchat https://t.co/z2w3mSf5NU |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T1: How can collaboration help patient communities connect? #patientchat https://t.co/Z18OHJF9Uh |
![]() | Patient Empowerment Network @power4patients RT @LAlupusLady: T1. Collaborating within and beyond your “health condition” can help individuals and organizations grow their community au… |
![]() | Diverse Health Hub @DHealthhub RT @LAlupusLady: T1. Collaborating within and beyond your “health condition” can help individuals and organizations grow their community au… |
![]() | Patient Chat @patientchat RT @LAlupusLady: T1. Collaborating within and beyond your “health condition” can help individuals and organizations grow their community au… |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: We're all in this together. Collaboration is a cornerstone of most successful ventures, in my opinion. Through this path, we can make connections that can lead to partnerships, friendships, support avenues, furthering important causes, & making other connections. #PatientChat |
![]() | Patient Chat @patientchat RT @RareDiseaseDad: @patientchat T1: We're all in this together. Collaboration is a cornerstone of most successful ventures, in my opinion.… |
![]() | DenetraHampton @ProducerNurse A1: Collaboration/Communities have always been intertwined. The work simply has to be done. It works when people decide to make the changes. @patientchat #patientchat |
![]() | Amanda G @LAlupusLady RT @ProducerNurse: A1: Collaboration/Communities have always been intertwined. The work simply has to be done. It works when people decide… |
![]() | Patient Chat @patientchat T2: What does collaboration in patient-driven communities do? #patientchat https://t.co/7ffbI6Uf2p |
![]() | Alan Brewington @abrewi3010 A1 in the initial days of patient advocacy it was thought we had to stay in our own silo. Then we discovered how powerful the question “how might we” is. A collaboration of experts raises QOL, that’s what this should be about #patientchat |
![]() | Amanda G @LAlupusLady RT @patientchat: T2: What does collaboration in patient-driven communities do? #patientchat https://t.co/7ffbI6Uf2p |
![]() | Alan Brewington @abrewi3010 A2 makes us work smarter, not harder #patientchat |
![]() | Amanda G @LAlupusLady T2 When patient communities collaborate the unification of purpose and passion empowers both the individuals and organizations that work together. Changing the world with collaboration. #PatientChat https://t.co/n7D43UD5Se |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T2: What does collaboration in patient-driven communities do? #patientchat https://t.co/7ffbI6Uf2p |
@bvogel9 RT @patientchat: Join us for a "Collaboration: Connecting and Empowering Patient Communities" Empowered #patientchat on Friday, May 14th at… | |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: It allows us to benefit from the work we’ve been doing while also helping to support each other along the way. We can find similarities & differences, identify areas of success & shortcomings, & learn with & from each other. #PatientChat |
![]() | Amanda G @LAlupusLady Alan , those days were not that long ago. #PatientChat |
![]() | Alan Brewington @abrewi3010 A2 it helps us find and discover new ways to tell our stories. It also provides signal boosts for our patient stories #patientchat |
![]() | Alan Brewington @abrewi3010 RT @LAlupusLady: T2 When patient communities collaborate the unification of purpose and passion empowers both the individuals and organizat… |
![]() | Patient Chat @patientchat RT @abrewi3010: A2 it helps us find and discover new ways to tell our stories. It also provides signal boosts for our patient stories #pati… |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: I’m in the #MitochondrialDisease community. An important realization is that #Mitochondria are an integral part of living for all & are impacted by many diseases. How can we leverage that to work together, find commonalities, & move research/awareness forward? #PatientChat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: A2 it helps us find and discover new ways to tell our stories. It also provides signal boosts for our patient stories #pati… |
![]() | Patient Chat @patientchat Topic (T3) coming soon..... #patientchat |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @patientchat T2: It allows us to benefit from the work we’ve been doing while also helping to support each other along… |
![]() | Alan Brewington @abrewi3010 @LAlupusLady Very true! Let’s hope we continue to move into the collaborative world vs backtracking to the silo days. #patientchat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: @LAlupusLady Very true! Let’s hope we continue to move into the collaborative world vs backtracking to the silo days. #pati… |
![]() | Adam Johnson - DadVocate @RareDiseaseDad RT @LAlupusLady: T2 When patient communities collaborate the unification of purpose and passion empowers both the individuals and organizat… |
![]() | Patient Chat @patientchat T3: How do you find collaborations as an individual and as a patient community leader? #patientchat https://t.co/gkBLjXRdFe |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @LAlupusLady Yes! And yes, please! #PatientChat |
![]() | DenetraHampton @ProducerNurse A2: When communities are respected/understood the patient-driven networks are powerful when unique needs are met. #patientchat |
![]() | DenetraHampton @ProducerNurse A2: When communities are respected/understood the patient-driven networks are powerful; as unique needs are met. #patientchat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Absolutely. Great point. And sharing our patient stories is integral. Through that avenue, we are able to help & connect with others, known & unknown. #PatientChat |
![]() | Amanda G @LAlupusLady RT @patientchat: T3: How do you find collaborations as an individual and as a patient community leader? #patientchat https://t.co/gkBLjXRdFe |
![]() | Monique C Gore-Massy(she/her) @GoldenMoe @patientchat T:3 intentionally seeking engagement with diverse communities and disease areas outside of my “comfort zone”..with compassion #patientchat |
![]() | Alan Brewington @abrewi3010 A3 unfortunately I think there is an element of luck involved. The biggest thing is making sure I share quality content, not quantity content. The more honest and vulnerable I am, the more chances for collaborating will emerge #patientchat |
![]() | Amanda G @LAlupusLady T3 Finding people or organizations to connect and collaborate with is as simple as discovering a community you feel comfortable with and starting a conversation about how you can work on a project together. #PatientChat https://t.co/F4NPgFqBdz |
![]() | Amanda G @LAlupusLady RT @abrewi3010: A3 unfortunately I think there is an element of luck involved. The biggest thing is making sure I share quality content, no… |
![]() | Monique C Gore-Massy(she/her) @GoldenMoe RT @abrewi3010: A2 it helps us find and discover new ways to tell our stories. It also provides signal boosts for our patient stories #pati… |
![]() | Alan Brewington @abrewi3010 RT @RareDiseaseDad: @abrewi3010 Absolutely. Great point. And sharing our patient stories is integral. Through that avenue, we are able to h… |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3: All of my collaborations have been via social media, mostly because I came into the #RareDisease space during the pandemic. I look forward to in person events returning so I can find collaborations/connections that way. I’m a relationships type of guy! #PatientChat |
![]() | Patient Chat @patientchat Topic (T4) coming soon...... #patientchat |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @patientchat T3: All of my collaborations have been via social media, mostly because I came into the #RareDisease space… |
![]() | Patient Chat @patientchat T4: Who can you approach to work with your patient community? Who is your ideal collaboration with? #patientchat https://t.co/MZtnWQsm0g |
![]() | Amanda G @LAlupusLady RT @patientchat: T4: Who can you approach to work with your patient community? Who is your ideal collaboration with? #patientchat https://… |
![]() | Alan Brewington @abrewi3010 A3 take full advantage of conferences like @StanfordMedX #Medx. This means sharing your story in order to increase the knowledge base but it also means active listening. What can I learn from others. #patientchat |
![]() | Amanda G @LAlupusLady T4a I think @healthevoices is a great place for patient leaders to connect with others. As a patient, I work with organizations like @LADAOrg @LupusResearch and @LupusInitiative as well as supporting healthcare advocates and their awareness projects. #PatientChat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T4: Who can you approach to work with your patient community? Who is your ideal collaboration with? #patientchat https://… |
![]() | Amanda G @LAlupusLady T4b. This month, I am sharing #LupusWithFlair as a recipient of a @healthevoices Impact Fund grant- shining a spotlight on the Lupus community. My vision is now a reality. #PatientChat https://t.co/jYhlSg0Tk5 |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4: Depends on the collaboration need. I’ve come in contact with some who work to fund research, others support families & raise awareness, some connect patients & resources, others advocate & legislate. I’d narrow down potential partners based on the goals at hand. #PatientChat |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @patientchat T4: Depends on the collaboration need. I’ve come in contact with some who work to fund research, others su… |
![]() | Alan Brewington @abrewi3010 A4 my ideal collaboration is anything that improves my quality of life or the quality of life of my fellow patients. My #skiing and/or #photography is for likes/ego. This is change the world time. #patientchat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: A3 take full advantage of conferences like @StanfordMedX #Medx. This means sharing your story in order to increase the know… |
![]() | Patient Chat @patientchat T5: What do you bring to the collaboration? #patientchat https://t.co/PjMYV7mxNx |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @ProducerNurse Excellent points! Thank you for bringing this perspective. #PatientChat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: A4 my ideal collaboration is anything that improves my quality of life or the quality of life of my fellow patients. My #sk… |
![]() | Amanda G @LAlupusLady Thank you. #PatientChat https://t.co/7K6tcYdz2C |
![]() | Alan Brewington @abrewi3010 A5 a lifetime of experiences & expertise of living with #rheum #chronicpain #Mentalhealth a willingness & understanding that learning is a dynamic process & a decent active listening skill set. #patientchat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: Things I'd hope to/think I would bring: a cunning wit, a sharp eye, a listening ear, different perspective, multiple ideas. Things I'd need to bring: a large amount of chocolate to thank those putting up with my shenanigans during the collaboration process. #PatientChat |
![]() | Amanda G @LAlupusLady RT @abrewi3010: A5 a lifetime of experiences & expertise of living with #rheum #chronicpain #Mentalhealth a willingness & understanding tha… |
![]() | Amanda G @LAlupusLady RT @RareDiseaseDad: @patientchat T5: Things I'd hope to/think I would bring: a cunning wit, a sharp eye, a listening ear, different perspec… |
![]() | Amanda G @LAlupusLady RT @ProducerNurse: A2: When communities are respected/understood the patient-driven networks are powerful; as unique needs are met. #patie… |
![]() | Patient Chat @patientchat T5a: How can you help a collaborative partner? #patientchat https://t.co/SNNzbh9OgY |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 That sounds like an ideal ideal collaboration, Alan. I like it! #PatientChat |
![]() | Amanda G @LAlupusLady RT @patientchat: T5: What do you bring to the collaboration? #patientchat https://t.co/PjMYV7mxNx |
![]() | Amanda G @LAlupusLady T4b. My ideal collaboration would be to create a project with @LupusInitiative that is designed by patients to educate Rheumatologist and the @ACRheum community. #PatientChat |
![]() | Amanda G @LAlupusLady T5 I bring my passion, enthusiasm and experience to a collaboration. Whether I am approaching potential sponsors, creating content, or volunteering at a healthcare conference I realize that every individual contributes to the success of the team. #PatientChat https://t.co/nH8dGLE0P4 |
![]() | Amanda G @LAlupusLady T5a As patients we can help organizations in a variety of ways raising awareness and donations during fundraising events. Patients can also use their voice to share their experiences in advocacy, email, calls or a trip to Capitol Hill. Many opportunities exist. #PatientChat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5a: I'll help where I can, how I can. If I’m partnering with someone, I want to pull my weight & assist however it’s needed. A good first step for me is to make sure I'm not overextending myself, because when that happens, I'm no longer as much help to anyone. #PatientChat |
![]() | Alan Brewington @abrewi3010 A5a be a friend first. Sometimes through the excitement it’s easy to forget we are chronic patients who are in some form of pain. #patientchat |
![]() | Amanda G @LAlupusLady T5b. A partner can help me and my community by sponsoring an educational outreach program or donating resources to support a fundraiser. Collaborations are the keys to success. #PatientChat https://t.co/pdcXBxW7BV |
![]() | Patient Chat @patientchat T5b: How can a partner help you and your community? #patientchat https://t.co/S6TSaXGfBq |
![]() | Adam Johnson - DadVocate @RareDiseaseDad I agree. It does get difficult, because the awareness we are raising/funds we are donating or receiving seem to often (most?) times come from the same circles, which are other circles that are already within the areas of need we are trying to bring attention to. #PatientChat |
![]() | Alan Brewington @abrewi3010 T5 it’s important to be vulnerable in a collaboration. Vulnerablility leads to discovery. However we can be so vulnerable that we damage ourselves. We need partners that understand & practice this themselves #patientchat |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T5b: How can a partner help you and your community? #patientchat https://t.co/S6TSaXGfBq |
![]() | Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5b: I’d say this is another one that depends on the situation & need. That said, no one should try to go anything alone. And we can all help each other spread awareness of our individual causes in our communities. #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 |
![]() | Alan Brewington @abrewi3010 CT with many new advocates coming online daily it’s easy to get lost. This doesn’t mean you need to scream or change to get attention, just the opposite. It’s more important than ever you tell your story, in your voice, in a quality matter. Share it & they will come #patientchat |
![]() | Adam Johnson - DadVocate @RareDiseaseDad CT: Collaboration is essential. So many benefits for various patient communities. Coming together to support each other for the common good is necessary & helps move the needle much more effectively than trying to do it alone. Let's set egos aside & get to it! #PatientChat |
![]() | Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
![]() | Patient Chat @patientchat I want to give a huge thank you to Amanda (@LAlupusLady) for joining us today. Your GIFs made this #patientchat the best! |
![]() | Amanda G @LAlupusLady RT @patientchat: I want to give a huge thank you to Amanda (@LAlupusLady) for joining us today. Your GIFs made this #patientchat the best! |
![]() | Amanda G @LAlupusLady Thank you @patientchat for inviting me to share my passion for collaboration with the #PatientChat community. https://t.co/f6ek2Jh6cw |
![]() | Amanda G @LAlupusLady RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
![]() | Patient Chat @patientchat Join us for a "Being Intentional With Your Mental Health" Empowered #patientchat on Friday, May 28th at 10 AM PT/ 1 PM ET. https://t.co/jWHIDvFblf https://t.co/81GFEGXLB4 |
