#patientchat Transcript

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

ProfileTweet
Patient Chat @patientchat
[REDACTED USER] We will miss you. Thank you for sharing and encouraging others to join us! Hope you have a wonderful weekend ahead! #PatientChat
Marni Cartelli @Purrfectly_Rare
RT @patientchat: Happy New Year! Join us for our next Empowered #PatientChat, “Building Power Through Your Story” on Friday, 01/14 @ 10AM P…
Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empower patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Nykema from @power4patients and I’m looking forward to our first #PatientChat of 2022!
Marni Cartelli @Purrfectly_Rare
#PatientChat I'm Marni, a #RareDisease/#chronicillness patient from Long Island, NY. I've recently taken a step back from #advocacy to focus on my family & self but still love engaging in the community.
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
Patient Chat @patientchat
@Purrfectly_Rare Hi Marni, thank you for joining us today! Happy you can still find time to engage in the community #PatientChat
Patient Chat @patientchat
@LifeAccrdingLiz Always happy to have you joining us, Liz! #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 a “Building Power Through Your Story” https://t.co/1xT3xTwDQl
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
Patient Chat @patientchat
Topic 1 coming soon.... #PatientChat
Patient Chat @patientchat
[REDACTED USER] Happy New Year, Lorrie! Thanks for joining #PatientChat
Patient Chat @patientchat
T1: Why is it important for patients and/or care partners to share their stories with others? #patientchat https://t.co/qd4eqjdN0j
Patient Chat @patientchat
[REDACTED USER] So true, Lorrie. And not only is it beneficial for the patient and/or caregiver community to hear the stories of others but all who advocate including healthcare professionals. #PatientChat
Patient Empowerment Network @power4patients
RT @patientchat: T1: Why is it important for patients and/or care partners to share their stories with others? #patientchat https://t.co/q…
Patient Chat @patientchat
Topic 2 coming soon.... #PatientChat
Marni Cartelli @Purrfectly_Rare
A1. #patientchat I think it's important 4 many reasons 1) It let's others in community know they aren't alone 2) It can B emotionally cathartic to talk about ur experience & how you are feeling (if you are ready to) 3) Normalizes these experiences in society (we R less outliers)
Patient Empowerment Network @power4patients
RT @Purrfectly_Rare: A1. #patientchat I think it's important 4 many reasons 1) It let's others in community know they aren't alone 2) It c…
Alan Brewington @abrewi3010
A1 Patient stories make medical education come to life. Without our stories it’s just academic. #patientchat
Patient Chat @patientchat
T2: If you weren’t always comfortable, when and how did you become comfortable sharing your story? #patientchat https://t.co/6d9cDkf9KH
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
It's hard to treat without understanding. This branches out in *many ways*. From general awareness to friends and family, All the way up to, research hypotheses, and getting support from others in ways you never imagined. Especially, in the rare disease communities.
Patient Chat @patientchat
#PatientChat
Marni Cartelli @Purrfectly_Rare
T2 #patientchat I've always been comfortable sharing my story but lately I'm worried that sharing MY story is also sharing my family's story, & I'm more aware of how uncomfortable THEY R w certain aspects I want 2 share It's my biggest struggle right now, walking the line
Marni Cartelli @Purrfectly_Rare
@LifeAccrdingLiz I love this. Understanding... I think I'm going to adopt the motto "Raise understanding not just awareness" #patientchat
Patient Chat @patientchat
@Purrfectly_Rare Appreciate you sharing that point of view, Marni #PatientChat
Alan Brewington @abrewi3010
A2 I got tired of living in #ChronicPain so I decided it was time to ask for help. The more help I received the better my storytelling capabilities became. #patientchat
Patient Chat @patientchat
[REDACTED USER] Love that quote, Lorrie! #PatientChat
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
@Purrfectly_Rare Thanks, understanding + research = treatments + cures. #patientchat!! It's also hard to fix a tire if you don't know how. So, we can't cure what we don't understand. Or, at least have the tools.
Patient Chat @patientchat
T3: Where can you go to share your story? Where do you suggest others start? #PatientChat https://t.co/VeiyINebkO
Marni Cartelli @Purrfectly_Rare
@patientchat Honestly, I'm just learning My family supported my advocacy/storytelling bc they knew I needed it 2 get through the DX Recently, I found out how much they were hurting from some of it I'm in a better place where getting it out isn't always as important #patientchat
Marni Cartelli @Purrfectly_Rare
A3 #patientchat I love reading the stories on @TheMightySite or @PatientWorthy Twitter is great for connecting but the character limits make it hard to tell a story story I think anywhere ppl feel safe is a good place to go
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
A3: I started big through lobbying through @RareAdvocates, and disease-specific event Was., DC Hill events. Starting small with Facebook groups will help you get comfy in your skin. (I met one of my besties through a mitochondrial disease Facebook group.)
@aggievic14
T2: I'm still not 100% comfortable. But I recently joined The Stability Network and hope to work on it https://t.co/1OMvL8DxQu #PatientChat
Patient Chat @patientchat
#PatientChat
Patient Chat @patientchat
Topic 4 coming soon.... #PatientChat
Alan Brewington @abrewi3010
A3 Look at your local legislature. Health Committees often give the public opportunities to share. Conferences like @StanfordMedX, conferences should offer training and sharing opportunities like #Medx #patientchat
Patient Chat @patientchat
T4: What would you say to patients and/or care partners who are hesitant to share their story? #PatientChat https://t.co/6Ue9Eq3ZXv
Patient Empowerment Network @power4patients
RT @patientchat: T4: What would you say to patients and/or care partners who are hesitant to share their story? #PatientChat https://t.co/…
Marni Cartelli @Purrfectly_Rare
A4 #patientchat Really think about Y u hesitate If u aren't ready that=100% fine & comm needs 2 respect that If it's bc u dont know how, or best way,reach out. There is help If it's bc u think u'll b bad, don't worry! It's ur story, nobody knows it better than u! Just try
Patient Chat @patientchat
RT @Purrfectly_Rare: A4 #patientchat Really think about Y u hesitate If u aren't ready that=100% fine & comm needs 2 respect that If it's…
Patient Chat @patientchat
Topic 5 coming soon... #PatientChat
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
T4: "Good things never come from in your comfort zone", or something like that. Our misery, and less than stellar days *can* be flipped and turned into butterflies. YOU never know without trying. Being vulnerable can be hard. Risks can be scary. #patientchat.
@aggievic14
@patientchat And, shameless plug for @savvy_coop - we pay patients and caregivers to share their stories that won't go out to the masses. Some just want to be heard w/o being thrown into the limelight. Here's our privacy policy. #PatientChat https://t.co/nIVEBEsVS0
Patient Chat @patientchat
T5: What words of caution do you have for anyone who wants to share their story? #PatientChat https://t.co/dSA1DXV7xb
Marni Cartelli @Purrfectly_Rare
A5 #patientchat There will always b trolls! ALWAYS! Share ur story knowing this. B prepared 2 ignore hurtful things said or at very least, not take them personally U will need 2 learn 2 distinguish -things meant well but phrased horribly -honest attempts at discourse V Trolls!
Alan Brewington @abrewi3010
A5 vulnerability is also a skill set. Being vulnerable makes for good stories and content. Push this skill in order to learn but stop before it hurts you. #patientchat
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
T4: #patientchat. Twitter has hashtags to start. Just try #patient...and go from there. Also, following each here on this chat helps expand your village. Power comes in numbers!
Marni Cartelli @Purrfectly_Rare
@aggievic14 @patientchat Love love love this! We often times get so caught up in encouraging people 2 share, we don't stop to evaluate if they are ready Or If there will B any consequences 4 them doing so #patientchat
Patient Chat @patientchat
RT @Purrfectly_Rare: A5 #patientchat There will always b trolls! ALWAYS! Share ur story knowing this. B prepared 2 ignore hurtful things s…
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
Patient Chat @patientchat
#PatientChat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Patient Chat @patientchat
If you have any topics suggestions or would like to guest host an upcoming #PatientChat -- please feel free to reach out!
Marni Cartelli @Purrfectly_Rare
@LifeAccrdingLiz 100% I know I have said things wrong and come across in ways I never meant to on a few (or many), occasions When it was pointed out I rephrased & apologized for how I said it. I didn't get angry or defensive We all have 2 allow 4 some missteps by others-it happens #patientchat
Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz
T5: "I can do hard things", is one of my mantras. You know it's already true, "and" can be applied to many other contexts. #patientchat.
Patient Chat @patientchat
Stay tuned for our next Empowered #PatientChat on Friday, January 28th @ 10 AM PT/ 1 PM ET! https://t.co/YykO2PEWyY
Patient Chat @patientchat
#PatientChat
Patient Chat @patientchat
#PatientChat
@LouRodrigues_QI
I would like to twitter introduce the #QITwitter and #PatientChat communities ❤ @patientchat https://t.co/PzLm0IDzwh
Patient Chat @patientchat
@LouWaters_QI #QITwitter meets #PatientChat! https://t.co/xZBmR6qiZj
@LouRodrigues_QI
RT @patientchat: @LouWaters_QI #QITwitter meets #PatientChat! https://t.co/xZBmR6qiZj
@LouRodrigues_QI
@patientchat Maybe we can work on a joint chat sometime 🤔 #QITwitter #PatientChat #QITwitter is a global improvement movement for health and care
Patient Chat @patientchat
#PatientChat
Patient Chat @patientchat
@LouWaters_QI Definitely. I will send you a DM shortly if you don’t mind. Thanks for reaching out! #PatientChat
PF Anderson @pfanderson@disabled.social @pfanderson
RT @abrewi3010: A5 vulnerability is also a skill set. Being vulnerable makes for good stories and content. Push this skill in order to lear…
Patient Chat @patientchat
#PatientChat
#patientchat content from Twitter.