#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hey hey hey! Casey Q aka the Mighty Mouth here thru the magic of scheduled tweets. Hanging w/a buddy today for our holiday get-together, wanted to participate in #patientchat tho. |
 | Patient Empowerment Network @power4patients RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of… |
| Patient Empowerment Network @power4patients RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/E8vRChPOUP https://t.co/OHTqnHTxMi |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating the last #patientchat of 2019 |
| Patient Empowerment Network @power4patients RT @patientchat: Here’s an article with more tips for participating in tweet chats: https://t.co/5JyoTGvZvH #patientchat |
 | Carly Flumer (she/her) @carlyflumer I’m Carly, trying to be a regular of #patientchat. :) |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Patient Chat @patientchat Today's #patientchat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. |
 | laminopathies support group @laminopathies Hi, Mary Mack, patient advocate for laminopathies and passionate protester against health care/pharmaceutical price-gouging. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/mKfy3dIc2W #patientchat |
 | Salem Oaks @SalemOaks @K_SalemOaks from CT today. We are committed to helping people understand biophjama R&D. #patientchat #pinksocks |
| Patient Chat @patientchat Today's #patientchat topic is A Year in Review: Looking back on 2019 and Ahead to 2020 https://t.co/btsj1qF6XI |
| Salem Oaks @SalemOaks @K_SalemOaks and spelling too **biopharma** #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Recovering from another cardio ablation from my couch. #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2...Please include corresponding T# at front of every answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat #patientchat |
| Patient Chat @patientchat T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2020? #patientchat https://t.co/90r7H0yUUO |
 | Inspire @InspireIsHealth RT @patientchat: T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2020? #patientchat… |
| Patient Empowerment Network @power4patients RT @patientchat: T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2020? #patientchat… |
| Inspire @InspireIsHealth Hello to #patientchat, and Happy Holidays. John Novack here from Inspire. |
| @K_SalemOaks A1: Proudest that I became a grandpa! #patientchat #pinksocks @SalemOaks | |
| Carly Flumer (she/her) @carlyflumer T1: I’m proud of remaining positive and being recognized as an advocate for other #cancer patients. #passion #patientchat |
| @Srotberg15 Stopping in to quickly say hello and I’m sad I won’t be able to participate in the #patientchat today. However my goal for next year is to try participating in more of these! | |
| @Srotberg15 RT @carlyflumer: T1: I’m proud of remaining positive and being recognized as an advocate for other #cancer patients. #passion #patientchat | |
 | J.B. et al., ✍️🏻 @negronjb RT @patientchat: T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2020? #patientchat… |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: Proud of keeping my podcast @hilarious_is up'n'running. Latest w/@ePatientDave https://t.co/PQCbcuk7Ju Proud of being part of @BeLikeLight Proud of my ongoing blog contribution here on @power4patients #patientchat |
| Alan Brewington @abrewi3010 A1 despite severe mental and physical exhaustion I’m still fighting for my own quality of life. Each day I’m becoming more aware of my capabilities and capacity to continue #patientchat |
| Inspire @InspireIsHealth RT @MightyCasey: A1: Proud of keeping my podcast @hilarious_is up'n'running. Latest w/@ePatientDave https://t.co/PQCbcuk7Ju Proud of being… |
| Carly Flumer (she/her) @carlyflumer @Srotberg15 And growing @_OurOdyssey_!! #tribelife #patientchat |
| Salem Oaks @SalemOaks Also proud of @ImDevPodcast Our 4th episode just came out. Scientist and Author Don Kirsch https://t.co/jTbzpB5wlL |
| Carly Flumer (she/her) @carlyflumer @MightyCasey @hilarious_is @ePatientDave @BeLikeLight @power4patients That’s so cool! Congrats! #patientchat |
 | Melissa VanHouten @melissarvh Most proud of our #Gastroparesis rally in DC. Amazing to gather with other community members who truly understand & support each other. Nothing else like it! #GPGreen2019 #CureGP #PatientChat |
| Carly Flumer (she/her) @carlyflumer @abrewi3010 Yes! Learning about yourself is one of the best gifts you can have to be able to grow! #patientchat |
 | Vera Rulon FAHIMA @vrulon Vera here from NY. Sorry to be late!#patientchat A1: proud of = part of start up @ProximityHS engaging patients in clinical trials |
| Alan Brewington @abrewi3010 A1 my goals for 2020 is to get back in shape, learn to handle stress better, and write more. #patientchat |
| Patient Empowerment Network @power4patients @teaminspire Hey John! We're glad to have you here @patientchat |
| Vera Rulon FAHIMA @vrulon @MightyCasey @hilarious_is @ePatientDave @BeLikeLight @power4patients Awesome Casey!!! |
| Melissa VanHouten @melissarvh Still working on goals for 2020, but they certainly include more in-person events. #PatientChat |
 | Our Odyssey @_OurOdyssey_ Perhaps we will try to participate in more of these #patientchat Twitter chats in 2020! |
| Salem Oaks @SalemOaks A1 Also proud of @ImDevPodcast Our 4th episode is avaialble. Scientist and Author Don Kirsch. https://t.co/jTbzpB5wlL #patientchat #pinksocks https://t.co/TjXumTbZz1 |
| Patient Empowerment Network @power4patients @MightyCasey @hilarious_is @ePatientDave @BeLikeLight It's no secret that we absolutely love you and are thrilled and honored that you contribute to our blog @patientchat |
| Salem Oaks @SalemOaks A1: Goal - test the idea of a Patients Included Rare Disease Incubator. #patientchat #pinksocks @SalemOaks |
| Salem Oaks @SalemOaks A1: Goal: Deliver for @cureFA ambassador training project #patientchat #pinksocks @SalemOaks |
| Patient Chat @patientchat Topic 2 (T2:) coming up... https://t.co/52iG5trkfU #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: in re @power4patients work product, the latest! https://t.co/Od86R733IV #patientchat |
| Patient Empowerment Network @power4patients RT @SalemOaks: A1 Also proud of @ImDevPodcast Our 4th episode is avaialble. Scientist and Author Don Kirsch. https://t.co/jTbzpB5wlL #p… |
| Patient Empowerment Network @power4patients RT @MightyCasey: A1: in re @power4patients work product, the latest! https://t.co/Od86R733IV #patientchat |
| Vera Rulon FAHIMA @vrulon Goals for 2020: take better care of my own health, keep pushing to ensure #patients' participation in design, own care, healthcare team #patientchat |
| Salem Oaks @SalemOaks A1: Goal: Build on @ImDevPodcast and start a new, more patient-focused podcast. Stay tuned for more! #patientchat #pinksocks @SalemOaks |
| laminopathies support group @laminopathies T1 proud of my work with patient advocacy groups (that don’t accept pharma $) to help put an end to pharmaceutical price gouging. Still a work in progress for 2020... #patientchat |
| Patient Chat @patientchat T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2020?#patientchat https://t.co/H6jCmOPvc3 |
| Patient Empowerment Network @power4patients RT @patientchat: T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2020?#patientchat… |
| Vera Rulon FAHIMA @vrulon A2: This year - more advocacy @S4PM. 2020: new - start a new blog leveraging my #artbyvera creations #patientchat |
| Patient Empowerment Network @power4patients A1: Speaking on behalf of PEN, we're so incredibly proud to have our Digital Sherpa Program featured in @OncologyNursing To have a program that help empower both nurses AND patients makes our year! https://t.co/F1C2gT9csL #patientchat |
| Alan Brewington @abrewi3010 A2 I wish I would have got help for dads death. I’m still hurting from that incident #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: Wish #epatient + #patientsincluded movements were making more inroads in institutional culture. In re 2020, plan on continuing to bring thunder/point out issues/offer solutions at volume. #dataprivacy also BIG front line for me. I'm 🔥 even on slow days 🤣 #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: A2: Wish #epatient + #patientsincluded movements were making more inroads in institutional culture. In re 2020, plan on co… |
| Alan Brewington @abrewi3010 @power4patients @patientchat Thank you 🙏 #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 I lost my Mom a few years ago and wish I would have gotten more help as well #patientchat |
| Alan Brewington @abrewi3010 A2 I would love to expand my design thinking skills/experiences in 2020. Also would like to learn to teach it so I could bring it to government and policy innovation. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/52iG5trkfU #patientchat |
| @K_SalemOaks @power4patients @abrewi3010 Not to pry, what types of help? #patientchat | |
| @Srotberg15 @abrewi3010 That’s great to hear and definitely takes time to get into the routine of things. It’s important to take time out of each day for yourself. #patientchat | |
| Salem Oaks @SalemOaks A2: Talked to even more patients, parents, and caregivers than we did. #patientchat #pinksocks @SalemOaks |
| Patient Chat @patientchat T3: Which healthcare trends were important to you in 2019? What trends would you like to see gain momentum? #patientchat https://t.co/4qleMGk6G3 |
| Alan Brewington @abrewi3010 @power4patients To often we assume coping as being healthy or recovering. #patientchat |
| Melissa VanHouten @melissarvh I always reflect on what I could not accomplish & what I could have done differently/better to make our #Gastroparesis advocacy efforts more effective, & I am always looking for something new & innovative that will lead to greater awareness & beneficial change. #PatientChat |
| Patient Empowerment Network @power4patients A2: We operate on the premise of no regrets. Could we have done better in 2019, of course! Did we work our tails off to move PEN's mission forward, we sure did! Will we strive to do better in 2020, you bet we will! #patientchat |
| Salem Oaks @SalemOaks A3: The emergence of real hope with gene therapy. Progress is being made and knowledge accumulating. #patientchat #pinksocks @SalemOaks |
| Alan Brewington @abrewi3010 @K_SalemOaks @power4patients Mental and physical, anything to help me adjust to my new health situation. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: Which healthcare trends were important to you in 2019? What trends would you like to see gain momentum? #patientchat h… |
| Carly Flumer (she/her) @carlyflumer T3: Improved #healthliteracy, education, and improved patient-provider communication (but that’s kind of my life goal!) #patientchat |
| laminopathies support group @laminopathies T3 Doctors are starting to come out more, protesting publicly against healthcare injustices: price-gouging, surprise billing, hospitals suing poor patients, etc #patientchat. Hoping for more docs@join the fight and eventually all in 2020 @MartyMakary |
| Patient Empowerment Network @power4patients A3: We're going to spend a significant time in 2020 helping patients & care partners understand #genomictesting & #biomarkertesting and how critical it is to have the proper testing done (sometimes more than 1x) to be matched w/ the right #precisionmedicine treatment #patientchat |
 | Two Faces of MS 💋 @TwoFacesofMS @patientchat My goals are to speak on things like drug pricing, big issues with PBMs, & cost of healthcare overall #patientchat |
| @ RT @power4patients: A3: We're going to spend a significant time in 2020 helping patients & care partners understand #genomictesting & #biom… | |
| Alan Brewington @abrewi3010 A3 I like @project_sleep campaign of “you are not alone”. We need more campaigns like this. Big data, clinical trials, AI are isolating, we need to combat this. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... https://t.co/52iG5trkfU #patientchat |
| Patient Chat @patientchat T4: We want to hear from you! What topics are you passionate about and would like to hear more of in 2020? #patientchat https://t.co/HTg3We06Eu |
| Melissa VanHouten @melissarvh Increase in # of physicians (GIs), organizations, & other healthcare players seeking interaction w/patients on social media, & I'm hoping this trend continues. We appreciate the efforts of groups like @ANMSociety @AmerGastroAssn & @RomeFoundation reaching out to us. #PatientChat |
| Melissa VanHouten @melissarvh Oh, I love #telehealth & #healthtech in general! More, please! #PatientChat |
| Alan Brewington @abrewi3010 A4 elections, both locally and nationally, are going to be incredibly important to patients this year. We need to increase engagement and participation of patient advocates in politics. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: battle for patient privacy in age of surveillance capitalism has become central mission for me, i.e. @BeLikeLight Stopped using FB as pers-profile because of it: https://t.co/6oAuQofhkX #dataprivacy #belikelight #cyberwoke #patientchat |
 | Heather McCullen @H_SalemOaks RT @abrewi3010: A4 elections, both locally and nationally, are going to be incredibly important to patients this year. We need to increase… |
| Carly Flumer (she/her) @carlyflumer T4: I would say I’m passionate about patients being #advocates for themselves. However, I would like docs to take into account the emotional side of #oncology care (and not just the scientific side!). #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T4: I would say I’m passionate about patients being #advocates for themselves. However, I would like docs to take into acc… |
| Patient Empowerment Network @power4patients RT @patientchat: T4: We want to hear from you! What topics are you passionate about and would like to hear more of in 2020? #patientchat ht… |
| Carly Flumer (she/her) @carlyflumer @melissarvh @ANMSociety @AmerGastroAssn @RomeFoundation I love seeing docs and other HCP’s on Twitter and hearing their perspectives! #patientchat |
| Alan Brewington @abrewi3010 A4 we need to raise the debate of patient privacy, especially on platforms like Facebook. Patients own their data, not social media platforms #patientchat |
| Melissa VanHouten @melissarvh I would love to see this in terms of emotional issues associated w/#digestive issues as well - although, we are beginning to notice a change. #PatientChat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4 we need to raise the debate of patient privacy, especially on platforms like Facebook. Patients own their data, not soci… |
| J.B. et al., ✍️🏻 @negronjb RT @patientchat: T4: We want to hear from you! What topics are you passionate about and would like to hear more of in 2020? #patientchat ht… |
| Carly Flumer (she/her) @carlyflumer @melissarvh Yay!! I’m so happy to hear that! #progress #patientchat |
| Vera Rulon FAHIMA @vrulon A3: Sorry for phasing out for bit - work gets in the way! Trends 2019 - important to watch the trend of large orgs accessing and using #patient data, lack of privacy, don't ask permission. 2020 = #patient access to personal health data, empower, break down barriers #patientchat |
| Vera Rulon FAHIMA @vrulon @abrewi3010 Couldn't agree more. Must get ownership clarified and resolved #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... https://t.co/52iG5trkfU #patientchat |
| Patient Chat @patientchat T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t.co/SQO5vxYeX7 |
| Vera Rulon FAHIMA @vrulon @melissarvh T4: #access to personal health data, to healthcare #patientchat |
| Alan Brewington @abrewi3010 A4 we need more creative thinking regarding government healthcare payment models. Right now Medicaid’s across the country are moving towards a budget based model with legislative approval. Not patient centered #patientchat |
| Vera Rulon FAHIMA @vrulon A5: Empower people: #educate #access #kindness change #healthcare culture --- providers, pharma, PBMs, etc. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: See previous re #dataprivacy and battle against Big Tech surveillance economy! Planted that flag on @power4patients - f'rinstance: https://t.co/Nkq81SEhG3 #patientchat #belikelight |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4 we need more creative thinking regarding government healthcare payment models. Right now Medicaid’s across the country a… |
| Vera Rulon FAHIMA @vrulon @abrewi3010 Yes. #patientchat |
| Salem Oaks @SalemOaks A4: Actions that people have taken to make the world of healthcare better for patients. Real success stories. #patientchat #pinksocks @SalemOaks |
| Patient Empowerment Network @power4patients RT @patientchat: T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t… |
| Carly Flumer (she/her) @carlyflumer T5: Volunteer! Do something you enjoy. I enjoy writing, so I write for myself, sometimes getting noticed by other orgs :) This helps me spread the patient voice, and I love it! #patientchat |
| Alan Brewington @abrewi3010 A5 return to the basics of advocacy, making sure no one feels alone by using patient stories. We need to implement human centered solutions/ideas which will encourage more human centered resources #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T5: Volunteer! Do something you enjoy. I enjoy writing, so I write for myself, sometimes getting noticed by other orgs :)… |
| Salem Oaks @SalemOaks A5: Grass roots face-to-face events. Look at the work @_OurOdyssey_ and #pinksocks are doing with simple meet-ups. #patientchat |
| J.B. et al., ✍️🏻 @negronjb RT @patientchat: T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t… |
| Melissa VanHouten @melissarvh This is an ongoing issue. Collaboration must not simply mean patients working together; it must include docs, pharma, gov't players, nonprofits, etc. So many begin w/worthy goals & then stray from those for personal fame & profit. That must end. #PatientChat |
| Heather McCullen @H_SalemOaks RT @melissarvh: This is an ongoing issue. Collaboration must not simply mean patients working together; it must include docs, pharma, gov't… |
| Patient Chat @patientchat RT @melissarvh: This is an ongoing issue. Collaboration must not simply mean patients working together; it must include docs, pharma, gov't… |
| Alan Brewington @abrewi3010 A5 we must make sure all questions revolve around the idea of how might we...? The we builds human centered collaboration. #patientchat |
| Vera Rulon FAHIMA @vrulon @melissarvh And change the darn culture... not easy but a "must do" #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: I commit to doing more to spread word abt @power4patients PARTIC that awesome Digital Sherpa program! https://t.co/k9s5t7IKRz #epatient #cancer #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 |
| Carly Flumer (she/her) @carlyflumer @MightyCasey @power4patients Yes! What an amazing program!! #spreadtheword #patientchat |
| Melissa VanHouten @melissarvh @GinaMcGalliard @patientchat I absolutely agree. And not as token participants, either. Genuinely value their input. Let us speak & not simply sit in the audience. #PatientChat |
| Vera Rulon FAHIMA @vrulon CT: We should have this same convo early next year. Not enough time. In the meantime, will keep looking for opportunities of the most impact for #patients #patientchat |
| Vera Rulon FAHIMA @vrulon @melissarvh @GinaMcGalliard @patientchat Exactly. While there are a few conferences that are starting to be more inclusive we have a long way to go! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: Best of all possible holiday seasons to ALL YOU GUYS!! Let's make 2020 the year that humanity wins vs surveillance capitalism 😜 #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Alan Brewington @abrewi3010 CT if we don’t combat feeling alone things like clinical trials, AI, big data will only be tools instead of life giving opportunities. #patientchat |
| Vera Rulon FAHIMA @vrulon @MightyCasey Here, here! #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| J.B. et al., ✍️🏻 @negronjb RT @carlyflumer: T4: I would say I’m passionate about patients being #advocates for themselves. However, I would like docs to take into acc… |
| Patient Chat @patientchat Thank you all for a great year of #patientchat! There will be no chat on 12/27 due to the holidays. We hope to see you again in 2020! |
| Our Odyssey @_OurOdyssey_ RT @SalemOaks: A5: Grass roots face-to-face events. Look at the work @_OurOdyssey_ and #pinksocks are doing with simple meet-ups. #pati… |
| Melissa VanHouten @melissarvh Many thanks to @patientchat for hosting a year of engaging & educational chats! Wishing you all a beautiful holiday season and a new year full of success! #PatientChat |
| Melissa VanHouten @melissarvh RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| Patient Chat @patientchat @melissarvh Thank you Melissa! Hope you have a great holiday as well :) #patientchat |
| Patient Chat @patientchat If you have a topic in mind for a future #patientchat or would like to be a guest host in 2020, please let us know! :) |
 | Amanda G @LAlupusLady @patientchat CT it is important to share our stories while we support one another. Some people and organizations have different goals. Align yourself with those you trust and share your mission. #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: If you have a topic in mind for a future #patientchat or would like to be a guest host in 2020, please let us know! :) |
| J.B. et al., ✍️🏻 @negronjb RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
 | Enlightening Results 💡 @GraceCordovano RT @MightyCasey: A1: Proud of keeping my podcast @hilarious_is up'n'running. Latest w/@ePatientDave https://t.co/PQCbcuk7Ju Proud of being… |
 | Sandra Rosenbluth @sanrosenb RT @melissarvh: This is an ongoing issue. Collaboration must not simply mean patients working together; it must include docs, pharma, gov't… |
#patientchat content from Twitter.