#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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: 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 interest to empowered patients. |
| Patient Chat @patientchat Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat |
 | Carly Flumer (she/her) @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 others on the topic. |
| 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 |
| 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 |
| 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 but helpful! #patientchat |
 | eliza @elizawetherby 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 Network @power4patients RT @patientchat: T1: T1: How do you personally use social media to advocate for your own health? For the health of others? #patientchat https://t.co/mZNPpi4UDH |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @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 be okay #patientchat |
| Carly Flumer (she/her) @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 |
 | 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 @elizawetherby 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 (she/her) @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 @elizawetherby @DUbmsw: @MasecchiaSiena end the stigma!! #patientchat let's help the world people |
 | 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 |
| 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 |
| Patient Chat @patientchat #patientchat community - Can we help Nigel out? |
| 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 |
| Patient Chat @patientchat T2: What advice would you share for those new to using social media for advocacy? #patientchat https://t.co/RBpvV7DJ3X |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 Network @power4patients RT @patientchat: T2: T2: What advice would you share for those new to using social media for advocacy? #patientchat https://t.co/RBpvV7DJ3X |
| eliza @elizawetherby 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 ✨ Person-Centered Health @Cascadia T1 Social Media allows me to co-create a community of health across silos and connect with others across the world. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: during my own cancer dx/tx experience, forums and Twitter emerged as a great source of friends/support/resources. #bcsm #patientchat |
| eliza @elizawetherby 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 be okay #patientchat |
| 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 (she/her) @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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| Marie Ennis-O'Connor @JBBC This is powerful |
| 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 |
| eliza @elizawetherby @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: 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 |
 | Meg Edwards @PtExpPaladin RT @MightyCasey: A2: 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 |
| 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 (she/her) @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 |
| 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 (she/her) @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 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 |
| 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. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks |
| 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. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks |
| 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. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks |
 | 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 (she/her) @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 @elizawetherby A3. just be mindful of what you are saying. spread awareness and empower others but in a way that is applicable for ALL! #patientchat |
| 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 |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What are your ‘rules’ for using social media to be an effective advocate for yourself or others? #patientchat https://t.co/Zx4jXE8Z1T |
| DanielleUBMSW @DUbmsw A3: Some rules I would recommend would be knowing your boundaries and not crossing a line where you become offensive. #patientchat |
| eliza @elizawetherby 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 @elizawetherby 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 @elizawetherby RT @DUbmsw: A3: A3: Some rules I would recommend would be knowing your boundaries and not crossing a line where you become offensive. #patientchat |
| Carly Flumer (she/her) @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 :) |
| Carly Flumer (she/her) @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. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks |
| 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| Carly Flumer (she/her) @carlyflumer @mayanorthen @lbdeck Yes, it’s such a great outlet! #patientchat |
| 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 |
 | Radha @radhachitale @patientchat Hi #patientchat, digital editor from @ teaminspire here 👋🏽 |
| 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 |
 | Jen Munoz @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: 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 |
| 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 @elizawetherby RT @lbdeck: A3. Be yourself and use your authentic voice. Hashtags are a great was for finding online connections. Collaborate. Engage. #patientchat |
| 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 |
| Jen Munoz @JenMunoz16 @patientchat T2: My daughter suffered perinatal loss 1 year ago; we all found much support from online resources & support groups.#patientchat |
| Carly Flumer (she/her) @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 |
| 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: 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 |
| Your GPS Doc, LLC @yourgpsdoc @JenMunoz16 @patientchat I’m so sorry. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @Crohnoid: T3: |
| 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 patient and as a caregiver or someone on the outside. That is also how I gauge on what to post and how much. #patientchat |
| 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 |
| 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 patient and as a caregiver or someone on the outside. That is also how I gauge on what to post and how much. #patientchat |
| 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 Network @power4patients RT @patientchat: T4: 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 (she/her) @carlyflumer @Majormac1 @MightyCasey What do you mean about the non-profits? #patientchat |
| Carly Flumer (she/her) @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 @elizawetherby 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 @elizawetherby 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 (she/her) @carlyflumer @lbdeck I love this aspect of social. Have you seen anything recently regarding health or health conditions? #patientchat |
 | Dr Sam Raza, MD FACC FACP FASE @SamRRazaMD RT @JBBC: Really curious to see good examples here.. I'm struggling to come up with one #patientchat |
| Dr Sam Raza, MD FACC FACP FASE @SamRRazaMD RT @patientchat: T4: 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 |
| 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 patient and as a caregiver or someone on the outside. That is also how I gauge on what to post and how much. #patientchat |
 | Lisa Gualtieri @lisagualtieri T4: #ThisIsOurLane is a great example of policy change #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| Jen Munoz @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 @elizawetherby 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 Network @power4patients RT @patientchat: T5: T5: As a patient advocate, how can you reach populations that aren’t using social media? #patientchat https://t.co/KajAfMtyq7 |
| Jen Munoz @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 #HeathenSlut Casey🇺🇦🌟 @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 @elizawetherby RT @DUbmsw: A5: 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 @elizawetherby 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 (she/her) @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 #HeathenSlut Casey🇺🇦🌟 @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 |
| 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 |
| 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 (she/her) @carlyflumer @yourgpsdoc How empowering!! #patientchat |
| Carly Flumer (she/her) @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, Esq (she/her) @AMJohnston1315 RT @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 |
| 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 #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @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 |
| 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 |
| Jen Munoz @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 (she/her) @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 #HeathenSlut Casey🇺🇦🌟 @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 |
 | Valerie 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 |
| Jen Munoz @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 |
| 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, Esq (she/her) @AMJohnston1315 RT @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 |
| Jen Munoz @JenMunoz16 #Patientchat, Thanks everyone! will check out the website https://t.co/gBjydLQikU, important and empowering |
| 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 a difference for others. So proud of my friend @lbdeck! Kudos to all in #patientchat this afternoon! |
| 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 @elizawetherby 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. Now it’s easy because I know it helps others when I share my #PatientExperience #patientchat #pinksocks |
 | 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. |
 | Alan Brewington @abrewi3010 Sorry I missed this great conversation. Boss wanted a meeting. #patientchat |
#patientchat content from Twitter.