#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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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
Amanda G @LAlupusLady
RT @patientchat: I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat. Happy Friday to all!
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 needs and history #patientchat
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 found this. #rheum #Chronicpain #MovementIsMedicine #Mentalhealth #PatientChat https://t.co/7p1GIe71SF
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 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.
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
IFTIKHAR MD ZIA @thisiszia
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #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 helpful #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: Today's #patientchat is a “Collaboration: Today's #patientchat is a “Collaboration: Connecting and Empowering Patient Communities” Empowered #patientchat https://t.co/TtJS8IXdU7
Patient Chat @patientchat
T1: How can collaboration help patient communities connect? #patientchat https://t.co/Z18OHJF9Uh
Patient Chat @patientchat
@thisiszia Nice to have you joining us today! #patientchat
Amanda G @LAlupusLady
RT @patientchat: T1: 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: 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 authentically. Working together on a project or campaign encourages support and awareness. #patientchat https://t.co/z2w3mSf5NU
Diverse Health Hub @DHealthhub
RT @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 Chat @patientchat
RT @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
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: @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
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 @RareDiseaseDad: @patientchat T1: @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
Amanda G @LAlupusLady
RT @ProducerNurse: A1: 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
IFTIKHAR MD ZIA @thisiszia
@patientchat #patientchat Keep missing these chats due to the time zone difference
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: 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: T2: What does collaboration in patient-driven communities do? #patientchat https://t.co/7ffbI6Uf2p
Brian Vogel @bvogel9
RT @patientchat: Join us for a "Collaboration: Join us for a "Collaboration: Connecting and Empowering Patient Communities" Empowered #patientchat on Friday, May 14th at @ 10 AM PT| 1 PM ET with Amanda, @LAlupusLady! https://t.co/TtJS8IXdU7 https://t.co/iKIh8q4oEe
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 organizations that work together. Changing the world with collaboration. #PatientChat https://t.co/n7D43UD5Se
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 #patientchat
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 #patientchat
Patient Chat @patientchat
Topic (T3) coming soon..... #patientchat
Amanda G @LAlupusLady
RT @RareDiseaseDad: @patientchat T2: @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 @RareDiseaseDad: @patientchat T2: @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
Alan Brewington @abrewi3010
@LAlupusLady Very true! Let’s hope we continue to move into the collaborative world vs backtracking to the silo days. #patientchat
Patient Chat @patientchat
RT @RareDiseaseDad: @patientchat T2: @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: @LAlupusLady Very true! Let’s hope we continue to move into the collaborative world vs backtracking to the silo days. #patientchat
Adam Johnson - DadVocate @RareDiseaseDad
RT @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 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
Amanda G @LAlupusLady
RT @RareDiseaseDad: @LAlupusLady Yes! And yes, please! #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
DenetraHampton @ProducerNurse
A2: When communities are respected/understood the patient-driven networks are powerful; as unique needs are met. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T3: T3: How do you find collaborations as an individual and as a patient community leader? #patientchat https://t.co/gkBLjXRdFe
Amanda G @LAlupusLady
RT @patientchat: T3: 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) #ACR22 @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, not quantity content. The more honest and vulnerable I am, the more chances for collaborating will emerge #patientchat
Monique C Gore-Massy (she) #ACR22 @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 #patientchat
Alan Brewington @abrewi3010
RT @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
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: @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
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: T4: Who can you approach to work with your patient community? Who is your ideal collaboration with? #patientchat https://t.co/MZtnWQsm0g
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: 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
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: @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
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 knowledge base but it also means active listening. What can I learn from others. #patientchat
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 #skiing and/or #photography is for likes/ego. This is change the world time. #patientchat
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 that learning is a dynamic process & a decent active listening skill set. #patientchat
Amanda G @LAlupusLady
RT @RareDiseaseDad: @patientchat T5: Things I'd hope to/think I would bring: @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 @ProducerNurse: A2: A2: When communities are respected/understood the patient-driven networks are powerful; as unique needs are met. #patientchat
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: 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
Patient Chat @patientchat
RT @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
RT @patientchat: T5a: T5a: How can you help a collaborative partner? #patientchat https://t.co/SNNzbh9OgY
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: 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
Alan Brewington @abrewi3010
RT @RareDiseaseDad: @patientchat T5b: @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
#patientchat content from Twitter.