#patientchat Transcript

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

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Marie Ennis-O'Connor @JBBC
Jumping from #hitsm to #patientchat it's virtual chat city today
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.
ISurvivor Lisa Deck @lbdeck
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat
Carly Flumer @carlyflumer
@patientchat Hey, I’m Carly, a thyroid cancer survivor! #patientchat
Dandy#lion @Dandyli28031677
I'm Tracy-Ann, MSW student, UB.#patientchat
Your GPS Doc, LLC @yourgpsdoc
@patientchat I’m Nicole Rochester, pediatrician and former caregiver to my dad who is now a professional patient/caregiver advocate and CEO of @yourgpsdoc. Glad to be here! #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Alix of Hesse @alixofhesse
My name is Zack, I am a liaison in oncology. Excited to be here! #patientchat
Maya Northen Augelli @mayanorthen
Maya from Philly here. Mental health, IBS, and Migraine advocate, and founder of Spread Hope Project. #patientchat
Marie Ennis-O'Connor @JBBC
@patientchat @power4patients Hi Kara - I'm looking forward to this chat - I live and breathe this topic 😊 #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with ot…
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 & history. #patientchat
Meg Edwards @PtExpPaladin
Hi I'm Meg - new to patient advocacy and interested in really getting started. #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat
Allison Lenart @AllisonLenart4
Hi my name is Allison. I am an MSW student at SUNY at Buffalo #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Leveraging Social Media for Patient Advocacy https://t.co/6dR7ctK40Q
Patient Chat @patientchat
I will introduce new Topics with T1, T2...Please include corresponding T# at the front of every answer - hard to remember but helpful! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Today's #patientchat topic is Leveraging Social Media for Patient Advocacy https://t.co/6dR7ctK40Q
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Nigel H @Crohnoid
Hi, I'm Nigel from the UK. I have a particular interest in #IBD #crohns and their #EIMs. Taking part in various research projects. Will be dipping in & out of the chat #patientchat
Patient Chat @patientchat
T1: How do you personally use social media to advocate for your own health? For the health of others? #patientchat https://t.co/mZNPpi4UDH
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at the front of every answer - hard to remember…
eliza @ew_UbMSW
A1. I love using SM to advocate for my health and the health of others, specifically instagram/snapchat etc to spread awareness #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: How do you personally use social media to advocate for your own health? For the health of others? #patientchat https:/…
Mighty Casey Quinlan @MightyCasey
<runs in late> HAAAAIIIIII!! Casey Q here, loudmouth writer/journo/wonk on all topics health literacy, science, data related. #patientchat
Siena Masecchia, UBSSW Student @MasecchiaSiena
A1. I use social media to bring awareness to the stigma associated with mental health & how sometimes it is okay to not be okay #patientchat
BreastCancer Chat Ww #BCCWW @bccww
RT @JBBC: @patientchat @power4patients Hi Kara - I'm looking forward to this chat - I live and breathe this topic 😊 #patientchat
Patient Chat @patientchat
RT @MasecchiaSiena: A1. I use social media to bring awareness to the stigma associated with mental health & how sometimes it is okay to not…
Carly Flumer @carlyflumer
@patientchat T1: I started sharing my #cancerjourney on Instagram and Facebook. That has really inspired me and others, which told me I can make a difference, hence my interest in #advocacy. I’m super excited!! :) #patientchat
Meg Edwards @PtExpPaladin
A1. Social media is a huge tool for knowledge. I use it to not only educate myself, but to have avenues to discuss issues that are important to me with individuals I might never get to speak with otherwise. #patientchat
DanielleUBMSW @DUbmsw
A1: I use SM to advocate for myself and others by talking about topics that others find uncomfortable to bring awareness #patientchat
eliza @ew_UbMSW
A1. I've found it's been particularly helpful to those in need by sharing things that are empowering to my followers and others #patientchat
Carly Flumer @carlyflumer
@MasecchiaSiena Yes!! Love this!! #patientchat
DanielleUBMSW @DUbmsw
@MasecchiaSiena end the stigma!! #patientchat
Dandy#lion @Dandyli28031677
T# T1: I use social media for support groups, networking and for eduational purposes.#patientchat
Alix of Hesse @alixofhesse
utilize hashtags to get more insight from others when posting #patientchat
Your GPS Doc, LLC @yourgpsdoc
T1: I use social media to promote health literacy and to empower patients and caregivers to advocate for themselves in HC settings. My weekly Facebook Live show, Navigator Nuggets™️ is lots of fun and allows me to reach a larger audience. #patientchat
Abby Hershberger @AbbyHershberger
@patientchat T1- I use social media to share my thoughts, how I am feeling, sharing an experience that was difficult, raising awareness. I use Instagram the most. Especially with Instagram stories! I just share my life and try to be as honest as I can which can be hard at times #patientchat
eliza @ew_UbMSW
@DUbmsw: @MasecchiaSiena end the stigma!! #patientchat let's help the world people
Nigel H @Crohnoid
A1: I started out with a blog to keep colleagues updated when I had surgery. Kept it going since with the hope of demystifing for other patients. I do use FB but, in all honesty, I prefer Twitter. The #IBD Community seems a lot more "grown-up" in it's responses! #patientchat
Robin Holmes @Majormac1
Hello everyone. Caregiver & metastatic breast cancer pt advocate from TN. Interested in raising awareness about all metastatic cancers & lack of research for stage 4. #patientchat
Maya Northen Augelli @mayanorthen
A1: I mainly use social media to share facts about mental health, in an effort to educate and help erode stigma. I also use it to share my story, to let others know that they aren't alone, that there are people who understand, and that it's OK to not feel OK. #patientchat
Nigel H @Crohnoid
@AbbyHershberger @patientchat I really ought to learn how to maximise the use of Instagram. Can anyone recommend any good tutorials? #patientchat
Marie Ennis-O'Connor @JBBC
Social media is such a wonderful tool to expand your network. I would never be as connected as I am without it #patientchat
ISurvivor Lisa Deck @lbdeck
Hi! I’m Lisa from MA. I’m a 4x stroke survivor, #moyamoya patient, passionate advocate & speaker and non-profit founder. #patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @patientchat: T1: How do you personally use social media to advocate for your own health? For the health of others? #patientchat https:/…
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @ew_UbMSW: A1. I love using SM to advocate for my health and the health of others, specifically instagram/snapchat etc to spread awarene…
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @Crohnoid: A1: I started out with a blog to keep colleagues updated when I had surgery. Kept it going since with the hope of demystifing…
Meg Edwards @PtExpPaladin
@AbbyHershberger @patientchat That's so cool that you use Instagram - do you think the pictures there make the stories you share more powerful? Wondering if that vehicle conveys the message better than 280 characters. #patientchat
Patient Chat @patientchat
#patientchat community - Can we help Nigel out?
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @carlyflumer: @patientchat T1: I started sharing my #cancerjourney on Instagram and Facebook. That has really inspired me and others, wh…
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @mayanorthen: A1: I mainly use social media to share facts about mental health, in an effort to educate and help erode stigma. I also us…
ISurvivor Lisa Deck @lbdeck
A1: I initially used social media to learn more about my health and my rare disease and to connect with other patients. Now I use it to advocate and help others on their patient journey. #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up... https://t.co/t1uUOeK0Sw #patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @lbdeck: A1: I initially used social media to learn more about my health and my rare disease and to connect with other patients. Now I u…
Patient Chat @patientchat
T2: What advice would you share for those new to using social media for advocacy? #patientchat https://t.co/RBpvV7DJ3X
Mighty Casey Quinlan @MightyCasey
<runs back in - multitasking is my life!> T1: As a longtime journo/writer, talking with my hands (keyboard) is a lifetime habit. Just moved it to so-me when so-me appeared, shifted to healthcare as I professionally pivoted there. I'm all about reporting! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T2: What advice would you share for those new to using social media for advocacy? #patientchat https://t.co/RBpvV7DJ3X
eliza @ew_UbMSW
A2. I would say to just be aware that not everyone who follows you has the same viewpoint as you and to be aware of critics #patientchat
DanielleUBMSW @DUbmsw
A2: my advice would be to speak up for yourself and what you believe. Don't be afraid of others opinions! #patientchat
Sherry Reynolds 🌟 @Cascadia
T1 Social Media allows me to co-create a community of health across silos and connect with others across the world. #patientchat
Mighty Casey Quinlan @MightyCasey
T1: during my own cancer dx/tx experience, forums and Twitter emerged as a great source of friends/support/resources. #bcsm #patientchat
eliza @ew_UbMSW
A2. but to still keep doing you and keep spreading the awareness... the beauty of the world is that not everyone is the same #patientchat
Maya Northen Augelli @mayanorthen
@patientchat I honestly haven't found any that I love, so I don't have recommendations, . But maybe finding other patient leaders/advocates that you feel do the type of the thing you'd like to do on IG could help? Also, connecting w/ orgs on there helps b/c they'll often repost. #patientchat
Abby Hershberger @AbbyHershberger
@PtExpPaladin @patientchat Yeah I think so. It creates conversations and awareness for sure. I save them in my highlights as well so they are there. I usually get at least a few messages or people saying thank you for sharing I never thought about that, or I didn’t know you deal with that, etc #patientchat
Your GPS Doc, LLC @yourgpsdoc
T1: One of the most vulnerable things I’ve done on social media was to chronicle my journey with cervical stenosis and severe pain on Facebook Live. I was the doctor and advocate who suddenly became a patient. It was liberating sharing that with my community. #patientchat
Abby Hershberger @AbbyHershberger
RT @MasecchiaSiena: A1. I use social media to bring awareness to the stigma associated with mental health & how sometimes it is okay to not…
DanielleUBMSW @DUbmsw
@MightyCasey that is awesome to hear! Im glad social media gave you that extra support! #patientchat
Your GPS Doc, LLC @yourgpsdoc
@patientchat I’m a newbie on Instagram and still figuring it out. Hopefully someone else can help. #patientchat
Richard Zhao @richardzhao
I have seen patients using social media network to find providers and hospital info. Especially related to other patients’ experience #patientchat
Dandy#lion @Dandyli28031677
T#2: Ensure that your personal information or your client's information are protected. Practice browsing through different sites to get familiar. #patientchat
Carly Flumer @carlyflumer
T2: Learn the platform that you’re most comfortable with. You don’t have to share everything if you don’t want to - it’s your choice! However, social media is a GREAT way to connect. Be open-minded :) #patientchat
Marie Ennis-O'Connor @JBBC
This is powerful
Mighty Casey Quinlan @MightyCasey
A2: I'd first say Beware The Astroturf - IOW, there's a lot of industry-paid stuff of questionable value re patient perspective on [whatever] on so-me. I also recommend finding researchers working in your [whatever] on Twitter. #science #clinicalresearch #patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @yourgpsdoc: T1: One of the most vulnerable things I’ve done on social media was to chronicle my journey with cervical stenosis and seve…
Maya Northen Augelli @mayanorthen
A2: Authenticity. Be you, share your story/information/advocacy efforts, and you'll find "your" audience. Connecting w/other adovocates & participating in chats like this are great ways to build your network & get your voice "out there". #patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @Cascadia: T1 Social Media allows me to co-create a community of health across silos and connect with others across the world. #patient
eliza @ew_UbMSW
@yourgpsdoc @patientchat absolutely!! what questions do you have?! #patientchat
Your GPS Doc, LLC @yourgpsdoc
@JBBC Thank you! #patientchat
Marie Ennis-O'Connor @JBBC
@Cascadia Love this Sherry! #patientchat
Maya Northen Augelli @mayanorthen
RT @carlyflumer: T2: Learn the platform that you’re most comfortable with. You don’t have to share everything if you don’t want to - it’s y…
Meg Edwards @PtExpPaladin
RT @MightyCasey: A2: I'd first say Beware The Astroturf - IOW, there's a lot of industry-paid stuff of questionable value re patient perspe…
Abby Hershberger @AbbyHershberger
@patientchat T2- Be yourself. Don’t try to be someone else that is already doing this. Figure out your why. Why are you creating this & who do you want to reach, be very honest & share the good & bad days. That has raised a lot of awareness for me, & also created a lot of convo. #patientchat
Allison Lenart @AllisonLenart4
T2: Follow as many like-minded users out there and comment on posts that are inspiring/useful. It will help grow your following! #patientchat
Carly Flumer @carlyflumer
@yourgpsdoc @patientchat It’s quite the platform to learn! However, I find that the use of hashtags is really important for visibility. #patientchat
Robin Holmes @Majormac1
@patientchat Stay consistent and engaged. Be open to learning. My advocacy continues to evolve as I learn more about the disease, research, politics of non-profits, NCI, NIH and FDA. Find your own voice, but know as you gain knowledge your voice will and should grow #patientChat
Meg Edwards @PtExpPaladin
RT @AbbyHershberger: @PtExpPaladin @patientchat Yeah I think so. It creates conversations and awareness for sure. I save them in my highlig…
Your GPS Doc, LLC @yourgpsdoc
T2: Don’t try to be on all platforms at once. Start with the one where you feel most comfortable. Find your “tribe”. Also be aware that nothing on the Internet is private. #patientchat
Meg Edwards @PtExpPaladin
Second this. Hashtags can be your best friend. #patientchat
Mighty Casey Quinlan @MightyCasey
@DUbmsw Full disclosure: as a media puke, I have long history of being able to find info. Then there was the 10 years I was advocate/care manager for my 'rents. When cancer showed up, I was #epatient AF already. #patientchat
ISurvivor Lisa Deck @lbdeck
My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks
Carly Flumer @carlyflumer
@patientchat Yes! @buffer has a tutorial page on how to use @instagram. Just search their library. #patientchat
ISurvivor Lisa Deck @lbdeck
RT @AbbyHershberger: @patientchat T2- Be yourself. Don’t try to be someone else that is already doing this. Figure out your why. Why are yo…
3 Social Media Strategists @3Strategists
RT @PtExpPaladin: Second this. Hashtags can be your best friend. #patientchat https://t.co/1WIsCCrMrR
Patient Chat @patientchat
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
3 Social Media Strategists @3Strategists
So true!
Abby Hershberger @AbbyHershberger
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
Your GPS Doc, LLC @yourgpsdoc
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
Marian Hollingsworth @MarianHolling
@patientchat T2 #patientchat Whenever possible use documents or pictures to back up your credibility. Sound factual. Don't whine. Don't make blanket statements about healthcare workers. Try to help solve the problem instead of just complaining.
Patient Chat @patientchat
Topic 3 (T3:) coming up... https://t.co/t1uUOeK0Sw #patientchat
Maya Northen Augelli @mayanorthen
Yes! All of this. Love the sharing of good and bad days. In fact, I've found sharing tough days has helped others feel comfortable sharing their story with me, which in turn, often helps them feel less alone/more supported. #patientchat
Carly Flumer @carlyflumer
@lbdeck Yes! I was scared also, not knowing how people would react. But it was for ME! Keeping that in mind helped me along the way, and people really responded to it in a great way! #patientchat
Patient Chat @patientchat
T3: What are your ‘rules’ for using social media to be an effective advocate for yourself or others? #patientchat https://t.co/Zx4jXE8Z1T
Siena Masecchia, UBSSW Student @MasecchiaSiena
A3. being honest and real with the information that I am providing and being respectful of other peoples' opinions & viewpoints #patientchat
eliza @ew_UbMSW
A3. just be mindful of what you are saying. spread awareness and empower others but in a way that is applicable for ALL! #patientchat
3 Social Media Strategists @3Strategists
RT @Cascadia: T1 Social Media allows me to co-create a community of health across silos and connect with others across the world. #patient
Meg Edwards @PtExpPaladin
RT @Majormac1: @patientchat Stay consistent and engaged. Be open to learning. My advocacy continues to evolve as I learn more about the dis…
Marie Ennis-O'Connor @JBBC
Join and learn from twitter chats in your disease area - great source of learning and finding people to follow #patientchat
James Johnson @JamesJo64540595
#patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @yourgpsdoc: T2: Don’t try to be on all platforms at once. Start with the one where you feel most comfortable. Find your “tribe”. Also b…
Patient Empowerment @power4patients
RT @patientchat: T3: What are your ‘rules’ for using social media to be an effective advocate for yourself or others? #patientchat https://…
DanielleUBMSW @DUbmsw
A3: Some rules I would recommend would be knowing your boundaries and not crossing a line where you become offensive. #patientchat
eliza @ew_UbMSW
A3. but to also be true to yourself and what you are saying. your followers will love your honesty and empowerment and will ... #patientchat
eliza @ew_UbMSW
A3. more than likely follow you and what you are saying! #patientchat
DanielleUBMSW @DUbmsw
@ew_UbMSW I agree! empower but be mindful! Very important! #patientchat
Maya Northen Augelli @mayanorthen
@carlyflumer @lbdeck Same. I started with blogging for me. Then went to social media. When I realized it helped others, I began doing more advocacy, but at first, it was honestly part of my processing/catharsis/working through what I was dealing with. #patientchat
ISurvivor Lisa Deck @lbdeck
@Dandyli28031677 I get it! It’s scary to “put yourself out there.” But it can truly help others and ultimately enrich your life more than you can imagine #patientchat #giveback
eliza @ew_UbMSW
RT @DUbmsw: A3: Some rules I would recommend would be knowing your boundaries and not crossing a line where you become offensive. #patientc
Carly Flumer @carlyflumer
@patientchat T3: You don’t have to share everything as the platform and what you post is yours to own. Not everyone will respond with kindness, so ignore the haters. Remember, once it’s out there, it’s out there!#patientchat
Dandy#lion @Dandyli28031677
T# 3: Be honest with yourself. Be real and share openingly #patientchat
Allison Lenart @AllisonLenart4
T3: stay solution-focused! #patientchat
Patient Chat @patientchat
@JenMunoz16 Hi Jennifer, be sure to include #patientchat in your tweets so we can all see :)
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A1: #PatientChat #patientchat My main topics are the gaps in government provided medical insurance, in poorly designed joint braces & adaptive equipment for gardening& diy home repairs. Discussions get some answers but primarily raise awareness of these problems.
Carly Flumer @carlyflumer
@DUbmsw Yes! And not being offensive to others. It goes both ways. #patientchat
Salem Oaks @SalemOaks
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
Mighty Casey Quinlan @MightyCasey
A3: Speak truth, always. If someone's paying you, say that. Be evidence based (IOW, don't promote junk science). Listen hard. Advocate harder for all people to get the care they need. #science #HumanRights #transparency #patientchat
Your GPS Doc, LLC @yourgpsdoc
T3: My number one rule is to be authentically me. In the beginning I felt I had to be polished and perfect. Posting in the midst of an illness allowed me to be focus on what was really important- sharing my story and helping others. #patientchat
Carly Flumer @carlyflumer
@mayanorthen @lbdeck Yes, it’s such a great outlet! #patientchat
Radha @radhachitale
@patientchat Hi #patientchat, digital editor from @ teaminspire here 👋🏽
DanielleUBMSW @DUbmsw
@carlyflumer @DUbmsw It does go both ways! Don't be offensive and try not get so offended of others opinions and thoughts! #patientchat
Maya Northen Augelli @mayanorthen
A3: If something pulls me away from being "me" & my core message (like algorithms to reach more people, etc) I don't do it . If it fits w/me fine, if not then so be it. Also, I take time off as needed - part of my self care. Sometimes I can't people, even online. #patientchat
JenMunoz @JenMunoz16
@patientchat Hi everyone! Joining this interesting & important chat. I’m Jennifer, an MSW student at UB. My field placement is in healthcare #patientchat
ISurvivor Lisa Deck @lbdeck
A3. Be yourself and use your authentic voice. Hashtags are a great was for finding online connections. Collaborate. Engage. #patientchat
Maya Northen Augelli @mayanorthen
RT @MightyCasey: A3: Speak truth, always. If someone's paying you, say that. Be evidence based (IOW, don't promote junk science). Listen ha…
Abby Hershberger @AbbyHershberger
@patientchat T3- I share what information I think is useful to know. If its a long story I save it for my blog. On Instagram i like to try & keep things short, people will loose interest if your always oversharing. I use the polls also to see what my followers want. #patientchat
eliza @ew_UbMSW
RT @lbdeck: A3. Be yourself and use your authentic voice. Hashtags are a great was for finding online connections. Collaborate. Engage. #p
Robin Holmes @Majormac1
@patientchat T3 Understanding others point of view, but be willing to stand firm in your advocacy with facts & data. SM is a great way to educate others, be educated while bringing about needed change. Advocacy is not a popularity contest. #patientchat
JenMunoz @JenMunoz16
@patientchat T2: My daughter suffered perinatal loss 1 year ago; we all found much support from online resources & support groups.#patientchat
Carly Flumer @carlyflumer
@MightyCasey Cannot speak enough about the science and evidenced-based info. I love how people reference specific studies when they talk about health. It shows validation, and that they did their research. #patientchat
Meg Edwards @PtExpPaladin
A3. Practice empathy and try to consider other's viewpoints, especially since we're asking them to consider ours. Helps to make more effective arguments as well. #patientchat
Nigel H @Crohnoid
T3: As everyone else has said - honesty is the top priority. Be able to back up statements you make with facts. Be comfortable about how much you share of your own story - set your limits and stick to them. Don't offer medical advice #patientchat
Abby Hershberger @AbbyHershberger
@patientchat T3 cont- I also remind myself before I got sick what information would have been helpful to know as a patient and as a caregiver or someone on the outside. That is also how I gauge on what to post and how much. #patientchat
Maya Northen Augelli @mayanorthen
RT @yourgpsdoc: T3: My number one rule is to be authentically me. In the beginning I felt I had to be polished and perfect. Posting in the…
Your GPS Doc, LLC @yourgpsdoc
@JenMunoz16 @patientchat I’m so sorry. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @Crohnoid: T3: As everyone else has said - honesty is the top priority. Be able to back up statements you make with facts. Be comfortabl…
Your GPS Doc, LLC @yourgpsdoc
RT @AbbyHershberger: @patientchat T3 cont- I also remind myself before I got sick what information would have been helpful to know as a pat…
Meg Edwards @PtExpPaladin
RT @AbbyHershberger: @patientchat T3 cont- I also remind myself before I got sick what information would have been helpful to know as a pat…
Your GPS Doc, LLC @yourgpsdoc
@AbbyHershberger @patientchat This is so important! #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up... https://t.co/t1uUOeK0Sw #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T3: rule 1: There are no rules that work for everyone. rule 2: block others &/or take breaks when it gets overwhelming rule 3: acknowledge all are human & thusly all will make mistakes #patientchat #PatientChat
Patient Chat @patientchat
RT @AbbyHershberger: @patientchat T3 cont- I also remind myself before I got sick what information would have been helpful to know as a pat…
Robin Holmes @Majormac1
@carlyflumer @MightyCasey Totally agree. Unfortunately, most advocates don’t have the science background & often mislead by non-profits. #patientchat
Patient Chat @patientchat
T4: Have you seen social media being used to influence policy change? If so, how? #patientchat https://t.co/Hhc5MWMDME
Siena Masecchia, UBSSW Student @MasecchiaSiena
A4. Yes, I have seen hashtags go around such as the #MeToo movement as an advocacy act to try & inform people of the phenomenon #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: Have you seen social media being used to influence policy change? If so, how? #patientchat https://t.co/Hhc5MWMDME
Maya Northen Augelli @mayanorthen
A3: Also understand that just b/c something has been true for your experience w/your illness, doesn't mean it's true for everyone else w/that illness. It's fine to share a different experience for information/discussion sake, but do so respectfully. #patientchat
Carly Flumer @carlyflumer
@Majormac1 @MightyCasey What do you mean about the non-profits? #patientchat
Carly Flumer @carlyflumer
@patientchat T4: I would say that I’ve seen campaigns, such as the truth campaigns regarding smoking, but nothing else unfortunately. #patientchat
ISurvivor Lisa Deck @lbdeck
A4: Absolutely! SM allows constituents (AKA patients) the ability to directly communicate with legislators. It’s a way to share your voice and request help from others. This results in change. #patientchat
eliza @ew_UbMSW
A4. I actually follow a couple of the Parkland School students and have seen a lot of advocacy from them... hopefully to soon #patientchat
eliza @ew_UbMSW
A4. change some policies! #patientchat
Marie Ennis-O'Connor @JBBC
Really curious to see good examples here.. I'm struggling to come up with one #patientchat
Jamie Roger @JamieRoger8
Starting the afternoon Zebra Tending with @Doug_Lind_Say @patientexpsym #PatExpSym #pinksocks #patientchat https://t.co/XwIOkswkjM
Carly Flumer @carlyflumer
@lbdeck I love this aspect of social. Have you seen anything recently regarding health or health conditions? #patientchat
Dr Sam Raza @SamRRazaMD
RT @JBBC: Really curious to see good examples here.. I'm struggling to come up with one #patientchat https://t.co/z4JydU2VAm
Dr Sam Raza @SamRRazaMD
RT @patientchat: T4: Have you seen social media being used to influence policy change? If so, how? #patientchat https://t.co/Hhc5MWMDME
Robin Holmes @Majormac1
@patientchat T4- Yes. Power in numbers. The stakeholders hold more power then they think. Patient advocates need to set the agenda. We are the ones being impacted by the disease. #patientchat
Abby Hershberger @AbbyHershberger
@patientchat T4- I have seen people try including myself sometimes. Unfortunately doctors and pharmacies, and insurance companies won’t ever listen to it or change it, YET. Hoping someday! #patientchat
Your GPS Doc, LLC @yourgpsdoc
T4: I think SM has the potential to influence policy change. I don’t know that there are many examples of this currently but I am hopeful. #patientchat
DanielleUBMSW @DUbmsw
A4: I personally have not seen SM discussing policy change that much but this may be because of the accounts I follow #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A4: #patientchat #PatientChat Yes, but it's mostly an extension of the battle ground overall- censorship of grassroots activists& AntiAuthoritarian individuals pushes those effects down as those in power go censorship free, beyond paid ads, & influence in negative ways.
Lizzie McFarlane @LizzieMcFarlane
@patientchat A2: it doesn’t have to be formal to be advocacy. A quick chat on a Facebook group could be as beneficial to someone as you recording a 3minute vlog #patientchat
ISurvivor Lisa Deck @lbdeck
RT @AbbyHershberger: @patientchat T3 cont- I also remind myself before I got sick what information would have been helpful to know as a pat…
ISurvivor Lisa Deck @lbdeck
RT @PtExpPaladin: A3. Practice empathy and try to consider other's viewpoints, especially since we're asking them to consider ours. Helps t…
Lisa Gualtieri @lisagualtieri
T4: #ThisIsOurLane is a great example of policy change #patientchat
Nigel H @Crohnoid
T4: Haven't seen anything in particular where things have definitely changed but I think the opportunity for HCPs to pick up how patients think about their conditions outside the consulting room may subtly bring about changes in their practices #patientchat #patientchat
Meg Edwards @PtExpPaladin
RT @LizzieMcFarlane: @patientchat A2: it doesn’t have to be formal to be advocacy. A quick chat on a Facebook group could be as beneficial…
Mighty Casey Quinlan @MightyCasey
A4: I get political ALL. THE. TIME. on so-me, particularly Twitter. I see healthcare as a human right. I also see the surveillance state enabled by Big Tech as a huge risk to democracy, and human rights in general. And I'm noisy AF about it. #patientchat
JenMunoz @JenMunoz16
@patientchat T3: social media is great resource for advocacy; I might give info in a general sense until more certain of the reliability of the site #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up... https://t.co/t1uUOeK0Sw #patientchat
Allison Lenart @AllisonLenart4
T4: some posts encourage people to call their representative and provide a website to help them find the contact info #patientchat
Patient Chat @patientchat
T5: As a patient advocate, how can you reach populations that aren’t using social media? #patientchat https://t.co/KajAfMtyq7
eliza @ew_UbMSW
A5. super hard but good q. curious to see everyone's answers! #patientchat
Siena Masecchia, UBSSW Student @MasecchiaSiena
A5. have physical & direct resources available for patients & initiate conversations regarding the different matters discussed #patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: As a patient advocate, how can you reach populations that aren’t using social media? #patientchat https://t.co/KajAfMt…
JenMunoz @JenMunoz16
@AbbyHershberger @patientchat Great advice Abby! #patientchat
Robin Holmes @Majormac1
@carlyflumer @MightyCasey In BC non-profits most have mislead women to believe research dollars are being spent to save their life. In the up to 30% where disease returns to kill onlly 5-7% goes to stage 4 breast cancer. The stage that continues to kill over 42,000 every yr. Number growing #patientChat
Mighty Casey Quinlan @MightyCasey
T4: and my hard stop on Facebook is a very political decision. https://t.co/BUTcfjAfwW #patientchat
DanielleUBMSW @DUbmsw
A5: I think we could reach out to non SM users by advocating within the community and holding public meets for the community #patientchat
eliza @ew_UbMSW
RT @DUbmsw: A5: I think we could reach out to non SM users by advocating within the community and holding public meets for the community #…
eliza @ew_UbMSW
A5. keep talking about social media and the impact it can have with power in numbers! educate those about what it can do #patientchat
Abby Hershberger @AbbyHershberger
@patientchat T5- TALK! Talk about things at your work place, if people ask questions in public talk. I have family members that don’t have social media and we talk about the issues I’m raising awareness that way. It’s kind of like spreading it word of mouth. #patientchat
Abby Hershberger @AbbyHershberger
@JenMunoz16 @patientchat Thank you so much! I truly appreciate it! 💜 #patientchat
ISurvivor Lisa Deck @lbdeck
A5: I the key the key to meeting & helping people who aren’t online is to go to them. Conferences, support groups, community events, etc. All great places to talk and connect with and collaborate with patients. Put yourself out there. #patientchat
DanielleUBMSW @DUbmsw
A5: SM is very convenient but going back to the basics of in person communication can be more affective when advocating #patientchat
Carly Flumer @carlyflumer
@patientchat T5: Create a blog. Blogs are a great way to express yourself and your opinions on health care, and you can provide references to credible health websites to provide further info for patients. #patientchat
Mighty Casey Quinlan @MightyCasey
A5: I do a lot of work that isn't under the banner of my own personal POV re health/care, so I'm operating on a number of fronts. All my work is in healthcare sector. Start where you are, use what you have, do what you can. HT Arthur Ashe #patientchat
Meg Edwards @PtExpPaladin
RT @lbdeck: A5: I the key the key to meeting & helping people who aren’t online is to go to them. Conferences, support groups, community ev…
Meg Edwards @PtExpPaladin
RT @MightyCasey: A5: I do a lot of work that isn't under the banner of my own personal POV re health/care, so I'm operating on a number of…
Dandy#lion @Dandyli28031677
T#: Community organizing, meeting people face to face, conducting work shops etc can be very effective. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T5: I always ask my followers to share the information with their friends and loved ones. I have had people sit with their grandmas and play one of my videos. That makes my heart sing. #patientchat
Nigel H @Crohnoid
@carlyflumer @patientchat That still assumes access to the internet! How about writing a book? #patientchat
Maya Northen Augelli @mayanorthen
A5: There are opportunities for "offline" advocacy too. Policy/advocacy days, conferences/panels, or organically created in person efforts to raise awareness, funds, etc. I also participate in walks and other awareness campaigns of (trusted) local organizations. #patientchat
Carly Flumer @carlyflumer
@yourgpsdoc How empowering!! #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A5: #patientchat #PatientChat Public libraries are great places for this- beyond creating & helping run formalized groups- if you're at them long enough, you'll find a few of said people.
Carly Flumer @carlyflumer
@mayanorthen Yes! I’m participating in @AmericanCancer’s #relayforlife this weekend! Such a great cause and opportunity! #patientchat
Robin Holmes @Majormac1
T5- Everyday conversations. Have educated people sitting next to me on an airplane, shopping & etc. Noticed I had a pink ribbon with black on it. Asked me what type of cancer? I get to explain about all metastatic cancers, recurrence rates & lack of research #patientChat
Abigail Johnston @AMJohnston1315
RT @Majormac1: T5- Everyday conversations. Have educated people sitting next to me on an airplane, shopping & etc. Noticed I had a pink rib…
Maya Northen Augelli @mayanorthen
@carlyflumer @AmericanCancer That's awesome! I'm training for my 6th @afspnational #OvernightWalk for Suicide Prevention. As much as I love social media, there's something about coming together in person (even for this socially anxious introvert! ha!) that really moves me. #patientchat
DanielleUBMSW @DUbmsw
Well I have to get back to work! Thanks for a great chat everyone!! #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
Marian Hollingsworth @MarianHolling
@patientchat Yes. Another advocate posted about having to wear hospital socks to walk down the hall before getting on a surgical table for a procedure -- an infection control issue. The hospital changed to give all patients two pairs of socks -- 1 for walking and 1 for bed. #patientchat
Lisa Davis Budzinski @lisadbudzinski
I’ll try to catch up later✨ Hubby is in surgery at this time #patientchat
Mighty Casey Quinlan @MightyCasey
RT @MarianHolling: @patientchat Yes. Another advocate posted about having to wear hospital socks to walk down the hall before getting on a…
Robin Holmes @Majormac1
@carlyflumer @mayanorthen @AmericanCancer Know where the money goes? Awareness is great, but research and better treatments will save lives. Not salaries & expensive marketing #patientchat
Rheumatoid Patient @rheumpatient
RT @MasecchiaSiena: A1. I use social media to bring awareness to the stigma associated with mental health & how sometimes it is okay to not…
JenMunoz @JenMunoz16
@patientchat T4: Great advocacy going on for families @starlegacyfdn; this agency supports families & advocates for perinatal loss prevention & research #patientchat
Maya Northen Augelli @mayanorthen
@Majormac1 Same! I've definitely inadvertently "started' conversations with my "out of the darkness" bracelets and shirts from the #OvernightWalk. I think it helps people to open up and ask when they a shirt/button/etc. #patientchat
Marian Hollingsworth @MarianHolling
@patientchat I know two advocates in Washington to give talks at local libraries. I have spoken to VA groups. That creates word of mouth info that at least brings attention to issues such as infection control and medications. #patientchat
Carly Flumer @carlyflumer
@patientchat CT: What you say CAN make a difference! Be honest, mindful, and thoughtful in what you post. People may respond negatively, but know you are sharing for eidcstipn, inspiration, etc. with good intentions. #patientchat
Mighty Casey Quinlan @MightyCasey
CT: being loud and persistent about #humanrights and humanity in #healthcare has gotten me into some interesting rooms to advocate for all patients everywhere. Next up ... @RightsCon in Tunis in June. I just never shut up 🤣 #patientchat
Your GPS Doc, LLC @yourgpsdoc
CT: Social media is a powerful tool for patient/caregiver advocacy. Don’t be afraid to use it! Be yourself and let it grow organically. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@lisadbudzinski Praying all goes well. #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 to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour.
Dandy#lion @Dandyli28031677
T#CT: I have learned a lot. Choose your audience, be yourself, honesty is important, don't let fear stop you from being an advocate. Just start talking and be open-minded.#patientchat
Nigel H @Crohnoid
CT: When just a single, fellow patient thanks you for sharing a story which allows them to be prepared for what lies ahead then it is worthwhile. Benefits work both ways #patientchat
Valerie Merahn Simon @ValerieSimon
Inspiring to hear from patients who have not only overcome tremendous challenges, but are using their experience to make a difference for others. So proud of my friend @lbdeck! Kudos to all in #patientchat this afternoon!
Abby Hershberger @AbbyHershberger
@patientchat #patientchat
JenMunoz @JenMunoz16
@lbdeck @patientchat Lisa, it’s wonderful that you’re sharing your story to help empower others! My daughter shared her story and felt the same way! #patientchat
Rheumatoid Patient @rheumpatient
RT @Crohnoid: T4: Haven't seen anything in particular where things have definitely changed but I think the opportunity for HCPs to pick up…
Robin Holmes @Majormac1
The biggest health care policy changers to date where the HIV advocates& Activist. NIH wanted to prevent disease & Activist said treat us. Save those dying. 42,000 dying before advocacy. Now a chronic disease with normal life span. They showed the world the ugly part.#patientchat
Abigail Johnston @AMJohnston1315
RT @Majormac1: The biggest health care policy changers to date where the HIV advocates& Activist. NIH wanted to prevent disease & Activist…
JenMunoz @JenMunoz16
#Patientchat, Thanks everyone! will check out the website https://t.co/gBjydLQikU, important and empowering
Meg Edwards @PtExpPaladin
RT @carlyflumer: @patientchat CT: What you say CAN make a difference! Be honest, mindful, and thoughtful in what you post. People may respo…
Maya Northen Augelli @mayanorthen
Love this. #patientchat
Patient Chat @patientchat
RT @ValerieSimon: Inspiring to hear from patients who have not only overcome tremendous challenges, but are using their experience to make…
Robin Holmes @Majormac1
Love seeing all of these new advocates. Gives me hope for our future with all diseases. Be bold. Enjoyed the chat! #patientchat
eliza @ew_UbMSW
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
Nigel H @Crohnoid
@Dandyli28031677 There's a fine line to be drawn between suggesting to someone that a particular condition might be "worth discussing with a consultant" but not causing possibly unnecessary concerns #patientchat
Patient Critical Co-op @PatientCritical
A1: @patientcritical uses social media and podcasting to provide a platform for other voices, to help all patients share & learn, such as our patient roundtable with @clairehsnyman @TCOrobin @MaggieKeresteci & @RaeofSunshine79 https://t.co/yXdYMgbXiP #patientchat
Patient Critical Co-op @PatientCritical
Agreed: #healthliteracy and a wider-held social appreciation of its importance is key.
BMM on Health and Tech @datadrivencare
RT @lbdeck: My advice to those who are getting started is to just start. I remember years ago how terrifying it was to share my story on SM…
Alan Brewington @abrewi3010
Sorry I missed this great conversation. Boss wanted a meeting. #patientchat
#patientchat content from Twitter.