#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 |
 | Patient Empowerment Network @power4patients Happy to be here #patientchat π€ |
| Patient Chat @patientchat Iβm Kara from @power4patients and Iβm excited to be moderating the last #patientchat of this crazy year |
| Patient Chat @patientchat Please continue intros and welcomes. Iβll share a couple βground rules" :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat |
 | Alexa Jett π¦ @ohhiialexa Hi #patientchat friends! β€οΈ Alexa back again to chat, and change the world with each of our voices. What we do here betters our world. |
 | Carly Flumer (she/her) @carlyflumer Hey there! Iβm Carly, an #AYA #thyca patient and #thyca network manager for @power4patients! π¦#patientchat |
| Patient Empowerment Network @power4patients @patientchat Iβm Nykema from PEN! Grateful to have made it through 2020! Anyone else looking forward to 2021? #patientchat |
 | Ma vie de zèbre ⒠A-Danielle G. @ADanGrenier I'm Annie-Danielle (Ma vie de zèbre - My Life as a Zebra), francophone voice for rare diseases in North America, always happy to join #patientchat ! |
 | Vera Rulon FAHIMA @vrulon Hello #patientchat! Vera here from NY. HIM prof. Artist. Poet. Writer. #Patient advocate. #Healthy #longevity strategist. |
| Patient Empowerment Network @power4patients @carlyflumer Hi Carly! Hope your week went well π #patientchat |
| Patient Chat @patientchat @malezebra20202 Hi and welcome! Don't forget to use #patientchat in all your tweets so everyone can see :) |
 | Leslie Krongold, EdD @Leslie_GHF Hi! I'm Leslie from the Glass Half Full Podcast in Northern California. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/mKfy3dIc2W #patientchat |
| Vera Rulon FAHIMA @vrulon @malezebra20202 Welcome! You'll enjoy it! #patientchat |
| Patient Empowerment Network @power4patients @ohhiialexa Hi Alexa! Itβs always great to have you here β€οΈ #patientchat |
 | David Ross @mensraredisease @Leslie_GHF #patientchat hi Leslie |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I'm Adam, a #RareDisease patient diagnosed with mitochondrial myopathy & extrinsic restrictive disease. I'm now what I call a #DadVocate...a dad who is also an advocate. Nice to be here with everyone. #patientchat |
 | Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey Hello tribe! Casey Q aka the Mighty Mouth here, loud for a living in service of rattling cages/nerves to push healthcare to be more human, less $$-focused. #healthjustice #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is A Year in Review: Looking back on 2020 and Ahead to 2021 https://t.co/zf6pC87BTQ |
| David Ross @mensraredisease @RareDiseaseDad @patientchat Hi Adam #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @malezebra20202 @patientchat Hi @malezebra20202! Good to see you on the chat. I hope you're doing well. #patientchat |
 | Diverse Health Hub @DHealthhub @patientchat Hi! Diverse Health Hub team here! Looking forward to the last #patientchat of 2020! |
| Alexa Jett π¦ @ohhiialexa @power4patients Love this community! β€οΈ #patientchat |
| David Ross @mensraredisease @RareDiseaseDad @patientchat Good thanks first #patientchat |
| Ma vie de zèbre ⒠A-Danielle G. @ADanGrenier @ohhiialexa @power4patients Even in 2020, time sure flies! #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2...Please include corresponding T# at front of every answer - hard to remember but helpful #patientchat |
| Patient Empowerment Network @power4patients @malezebra20202 Happy first #patientchat! Happy to have you here and hope you enjoy! |
| Vera Rulon FAHIMA @vrulon @MightyCasey Definitely less $$$ focused! Welcome! #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Alexa Jett π¦ @ohhiialexa @RareDiseaseDad @patientchat Dadvocate is...#patientchat https://t.co/yUe4yCjlUz |
| Patient Chat @patientchat T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2021? #patientchat https://t.co/O76bwUxkLN |
| Patient Empowerment Network @power4patients @MightyCasey Hi Casey! Happy to have you here! #patientchat |
| Alexa Jett π¦ @ohhiialexa @ADanGrenier @power4patients So true! #patientchat |
| Patient Empowerment Network @power4patients @Crohnoid Hi Nigel, happy you can join us today π #patientchat |
 | Jeff Dubin @Power2Patient Hello #patientchat! Jeff from Jersey here. #patientempowerment blogger and pharmaceutical marketing researcher. |
| David Ross @mensraredisease @patientchat Setting up a rare disease male group via zoom and plan to set one up online for next #Patientchat #T1 |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey @power4patients Always get here if at all possible! #patientchat |
| Carly Flumer (she/her) @carlyflumer Q1: Definitely proud of setting up a support group for #thyca patients with @ohhiialexaband and @ancan501c3! Shameless plug that our first virtual group is next Wednesday! DM us for details π #patientchat |
| Patient Empowerment Network @power4patients @Power2Patient Hi Jeff! Welcome and Happy Friday π #patientchat |
| Alexa Jett π¦ @ohhiialexa T1: I am deeply humbled with what I, and the CPAT team at @CancerAdvocacy accomplished this year. Patients belong in the political space, and it was my goal for 2020 to advocate at this level. We were a necessary voice in the #COVID world. #patientchat |
| David Ross @mensraredisease @carlyflumer @ancan501c3 Sounds great #patientchat |
| Ma vie de zΓ¨bre β’ A-Danielle G. @ADanGrenier @patientchat T1 I was asked to be spokesperson for an upcoming rare/complex diseases clinic at my hospital π± Goal for 2021 is to decrease my language freelance time & do more paid advocacy work! #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T1: "I survived 2020" (well, until Dec. 11, stay tuned for updates) - I think we all deserve a t-shirt. Kept my podcast @hilarious_is going. More podcasting in 2021, and (crosses fingers) actual in-the-room conferences by Q4? Hoping so. #patientchat |
| Patient Empowerment Network @power4patients @carlyflumer @ancan501c3 Wow congratulations to all of you β @ohhiialexa and @ancan501c3! #patientchat |
| Alexa Jett π¦ @ohhiialexa @carlyflumer @ancan501c3 That was going to be my next tweet, LOL!! But yes, we worked on this together for half a year?? (Wow!) and thrilled itβs finally come together. #thycabesties #patientchat |
| Jeff Dubin @Power2Patient T1: #COVID19 and the #BLM protests led me to research and blog about the lack of #healthequity in our country. #patientchat A lot more to learn in 2021! |
| Alexa Jett π¦ @ohhiialexa @power4patients @carlyflumer @ancan501c3 Thank you so much! #patientchat |
| Patient Empowerment Network @power4patients @ADanGrenier @patientchat That is incredible! Wishing you all the best in 2021! #patientchat |
| Carly Flumer (she/her) @carlyflumer @MightyCasey @hilarious_is Let me know if you would like a guest! π #patientchat |
| Alexa Jett π¦ @ohhiialexa RT @carlyflumer: Q1: Q1: Definitely proud of setting up a support group for #thyca patients with @ohhiialexaband and @ancan501c3! Shameless plug that our first virtual group is next Wednesday! DM us for details π #patientchat |
| Leslie Krongold, EdD @Leslie_GHF T1: I'm most proud of 2 online speaking engagements I had the opportunity to do - University of Utah & Canada MD org. '21 Goals: more great podcast episodes, finish my book, continued radical self-care. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad T1: Iβm not the best at celebrating/being proud of myself, but Iβm the first one to tell others they need to do that themselves. So, thank you for posing the question. Itβs been good for me to reflect on what has really been a big year for me, challenges & all. #patientchat 1/2 |
| Adam Johnson - DadVocate @RareDiseaseDad I began really processing my diagnosis from Oct 19, started a Twitter account in July, launched a website/blog to own my story & hopefully help others, was a podcast guest, & have βmetβ many incredible folks in the #RareDisease community that Iβm thankful for. #patientchat 2/2 |
| Patient Empowerment Network @power4patients @MightyCasey @hilarious_is I would love a t-shirt π #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T1: speaking of @hilarious_is here's the latest ep with one of the most dedicated peer health network builders out there, @theERIKABrown, Founding Mayor of @colontown https://t.co/UJ67c0H441 #patientchat |
| David Ross @mensraredisease @Leslie_GHF Sounds really positive #patientchat |
 | Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz @patientchat Hi! Iβm Jill, myeloma patient and patient advocate. Happy to be here! #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| Carly Flumer (she/her) @carlyflumer Q1: Iβm also proud of all the work the PEN managers have done to spread awareness and comfort to other cancer patients. I was there at the conception of the program, & Iβm thrilled to see how far it has come! @power4patients #patientchat |
| Patient Empowerment Network @power4patients @JillZitzewitz @patientchat Hi Jill! Happy to have you here π€ #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: Q1: Q1: Iβm also proud of all the work the PEN managers have done to spread awareness and comfort to other cancer patients. I was there at the conception of the program, & Iβm thrilled to see how far it has come! @power4patients #patientchat |
| Patient Chat @patientchat T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2021? #patientchat https://t.co/RydCxlCBu7 |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey RT @carlyflumer: Q1: Q1: Iβm also proud of all the work the PEN managers have done to spread awareness and comfort to other cancer patients. I was there at the conception of the program, & Iβm thrilled to see how far it has come! @power4patients #patientchat |
| Patient Empowerment Network @power4patients @carlyflumer Wow, Carly β yes, I completely agree! Our Network Manager program continues to flourish and we are so grateful to all of you!! #patientchat Interested in learning more about our Network Managers? https://t.co/4Bs6fRlPat |
 | Andrea @BraveBosom RT @MightyCasey: T1: T1: speaking of @hilarious_is here's the latest ep with one of the most dedicated peer health network builders out there, @theERIKABrown, Founding Mayor of @colontown https://t.co/UJ67c0H441 #patientchat |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T1: Iβm most proud of my efforts taking over as leader of our local multiple myeloma support group this year. For next year, my goal is to use my science skills to advocate for #myeloma patients. #patientchat |
| David Ross @mensraredisease @patientchat #T2 #patientchat yes didn't give myself a break from patient advocacy as feel the work never ending but I need time to focus on myself to be a better person |
| Ma vie de zΓ¨bre β’ A-Danielle G. @ADanGrenier @patientchat T2 No regrets! Planning to launch a shop (maybe Zazzle?) with French-language rare disease awareness products in 2021! Been jealous of English products for years, now I'll do something about it π #patientchat |
| Leslie Krongold, EdD @Leslie_GHF No regrets but I am slowly learning more about SEO and other social media platforms. There's always so much to learn and so little time when #selfcare is critical. #patientchat |
| Alexa Jett π¦ @ohhiialexa T2: I did the best I could in 2020, and I am satisfied with what I was able to accomplish with the constraints of COVID, and the sheer mental fatigue from it all. Goals for 2021: Keep on truckinβ π€ #patientchat |
| David Ross @mensraredisease @ADanGrenier @patientchat I like this #patientchat |
| Patient Empowerment Network @power4patients @patientchat T2: Personally, I wish I learned to say βnoβ this year. Throughout the pandemic, as tasks piled up, I didn't take enough time for myself. In 2021, Iβll be learning more about mindfulness at our PEN-Powered Guided Meditation. Register here: https://t.co/ql5CLv1zZ9 #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T2: I think (at least since March 11) we've ALL had to do things differently - networking has been tough, Zoom's OK but not anywhere near as effective as f2f interaction. AFA 2021 goes, I'll just keep on making noise/causing trouble in service of #healthjustice #patientchat |
| David Ross @mensraredisease @Leslie_GHF So true about #selfcare #patientchat |
| Diverse Health Hub @DHealthhub RT @carlyflumer: Q1: Q1: Definitely proud of setting up a support group for #thyca patients with @ohhiialexaband and @ancan501c3! Shameless plug that our first virtual group is next Wednesday! DM us for details π #patientchat |
| Alexa Jett π¦ @ohhiialexa @power4patients @carlyflumer I am very glad to have my network manager on speed dial!! Love you so much, Carly!! π₯° β€οΈ π¦ #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa @power4patients All the love to you, girl β€οΈβ€οΈ #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @MightyCasey @hilarious_is Love all of this! And yes, in-the-room conferences would be nice! I started my advocacy venture during the pandemic. I'd love to meet all of you amazing people in person sometime (although you all might not feel the same after experiencing my shenanigans in person!). #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T2: Planning on returning to something I've loved since I was 16yo (in 1969, for those playing at home) - going to get my scuba gear sorted out, and start diving again. Haven't gotten bottom time since cancer dx ... IN 2007. It's time =) #patientchat |
| Diverse Health Hub @DHealthhub @JillZitzewitz Congratulations Jill! You will definitely meet that goal for next year! #patientchat |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T2: I have no regrets for 2020. Iβm happy I accomplished all I did! For 2021, I plan to continue to develop my patient advocacy skills to help #myeloma patients. #mmsm #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey @RareDiseaseDad @hilarious_is Shenanigans? #patientchat https://t.co/M1A6QQyfL6 |
| David Ross @mensraredisease @RareDiseaseDad @MightyCasey @hilarious_is I'd so love to meet a fellow rd dad such as you #patientchat |
| Diverse Health Hub @DHealthhub @ohhiialexa Keep on truckinβ I love that! We have to keep on pushing! Canβt wait to see what 2021 has in store! #patientchat |
| Carly Flumer (she/her) @carlyflumer Q2: Probably not taking enough time for my mental health, but Iβm rounding out the year doing just that! #patientchat |
| Alexa Jett π¦ @ohhiialexa @RareDiseaseDad @patientchat In the words of Michael Scott from The Office βGotta Keep the Troops Entertained!β π #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
| Alexa Jett π¦ @ohhiialexa @MightyCasey @RareDiseaseDad @hilarious_is The #patientchat in person party...will need NDAβs for the level of shenanigans! πππ |
| Vera Rulon FAHIMA @vrulon T1: 2020 - No regrets. Several accomplishments including joining and participating in Breast Cancer United and helping create AHIMA's consumer engagement strategy. Goals 2021 - Keep on. Find more ways to advocate for #healthequity. @chisite #patientchat |
| Patient Chat @patientchat T3: Which healthcare trends were important to you in 2020? What trends would you like to see gain momentum? #patientchat https://t.co/UggoU8a03u |
| Alexa Jett π¦ @ohhiialexa @DHealthhub Keep on Truckinβ and Use the Force!! #patientchat |
| Ma vie de zΓ¨bre β’ A-Danielle G. @ADanGrenier @patientchat T3 If telehealth is a healthcare trend, that! We have been very behind on this in QuΓ©bec (fax is the main communication tool... π). Saves me so much time & energy! Definitely want this to become more normal! #patientchat |
| Alexa Jett π¦ @ohhiialexa T3: Health Disparities!! And it is up to all of us to keep that conversation going in 2021. Itβs NOT okay! #patientchat |
| David Ross @mensraredisease @patientchat #patientchat #T3 #mentalhealth #chronicpain are two areas that need more focus on for next year. More support and lack of awareness in these 2 areas |
| Vera Rulon FAHIMA @vrulon T2: 2020 has been difficult to say the least. I would have found ways to stay engaged (which has been a challenge). 2021 - I will be finding virtual ways to help the cause! You ain't seen nothing yet! #patientchat |
| Patient Empowerment Network @power4patients T3: Digital literacy was a big one this year especially due to COVID-19. Iβm happy we were able to launch our virtual version of digital sherpaβ’, Digitally Empoweredβ’. This course helps lessen the digital divide among older patients. #patientchat https://t.co/6CLfJzxGlH |
| Diverse Health Hub @DHealthhub @ohhiialexa πππ yes, we canβt forget about the force #patientchat |
 | Marni Cartelli @Purrfectly_Rare A1. #patientchat I'm proud I'm ending the yr in a better mental place then I started w I'm working on ME & doing what I need 2 do 2 b someone who doesn't just exist as a patient but lives! In 2021 Im going 2 break the boundaries of what I thought my body could do w this disease |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: Initially, I was thinking I wish I would've started advocating earlier in 2020. But, I don't think that's fair to the me from a few months ago, so I'm okay with it. It's a journey, & I wasn't ready to jump in until I did. I will hone in on my goals more in 2021. #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T3: Ripping the curtain off every single part of America's lack of social contract - #blacklivesmatter, #healthjustice, #healthequity That some inside the ivory tower are listening = hopeful sign. https://t.co/uj9kgYrM8s #patientchat |
| David Ross @mensraredisease @Purrfectly_Rare Sounds hopeful #patientchat |
| Marni Cartelli @Purrfectly_Rare A2. #patientchat I can't say I would change anything bc I believe I needed 2 go down the path I did 2 reach where I am now. I have plans 2 try EVERYTHING new in 2021...when it is safe to do so |
| Vera Rulon FAHIMA @vrulon T3: Health equity. Social determinants. Diversity in clinical trail participants! #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey RT @power4patients: T3: T3: Digital literacy was a big one this year especially due to COVID-19. Iβm happy we were able to launch our virtual version of digital sherpaβ’, Digitally Empoweredβ’. This course helps lessen the digital divide among older patients. #patientchat https://t.co/6CLfJzxGlH |
| David Ross @mensraredisease @Purrfectly_Rare I'd love to come back to the USA and meet you as soon as it is possible #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T3: Not everyone is getting the same out healthcare. Period. This has been a long standing trend that has been greatly exacerbated this year! Our fight will continue for #HealthEquityforALL #patientchat |
| Jeff Dubin @Power2Patient @power4patients Very discouraging that only 12% of Americans can obtain the info they need to make basic decisions about their care. Kudos to #PEN on your efforts to boost that number. #patientchat |
| Alexa Jett π¦ @ohhiialexa RT @DHealthhub: @patientchat T3: @patientchat T3: Not everyone is getting the same out healthcare. Period. This has been a long standing trend that has been greatly exacerbated this year! Our fight will continue for #HealthEquityforALL #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey @vrulon Hey Vera - you a member of @_DiMeSociety? #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey RT @Power2Patient: @power4patients Very discouraging that only 12% of Americans can obtain the info they need to make basic decisions about their care. Kudos to #PEN on your efforts to boost that number. #patientchat |
| Marni Cartelli @Purrfectly_Rare A3. #patientchat I think we need 2 reimagine #telehealth. I think we r learning that 4 some areas of medicine it can be an amazing tool, but doesn't translate well in others. We have 2 remember this isn't a 1 size fits all option I also like the idea of hybrid conferences. |
| Carly Flumer (she/her) @carlyflumer Q3: I think covid showed the nuances of healthcare that need to be addressed now rather than later: #healthequity, #healthdisparities, diversity in #clinicaltrials, and #telehealth. #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey RT @DHealthhub: @patientchat T3: @patientchat T3: Not everyone is getting the same out healthcare. Period. This has been a long standing trend that has been greatly exacerbated this year! Our fight will continue for #HealthEquityforALL #patientchat |
| Patient Empowerment Network @power4patients @Power2Patient Thank you! We are trying and we are not giving up any time soon! Everyone deserves to have all information needed to make the best decisions and achieve #BetterCancerCare #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
 | Barby Ingle Official @BarbyIngle @patientchat #patientchat 2020 proud: earning 3 awards when I was sooo sick most of the year #ValleyFever Still made a difference to someone. 2021 goals: live life to the fullest in each moment without guilt of what I can/cant do. |
| Alexa Jett π¦ @ohhiialexa @DHealthhub @patientchat #patientchat https://t.co/kp3N8R934P |
 | Terry Wilcox @Terrilox RT @Purrfectly_Rare: A3. #patientchat I think we need 2 reimagine #telehealth. I think we r learning that 4 some areas of medicine it can be an amazing tool, but doesn't translate well in others. We have 2 remember this isn't a 1 size fits all option I also like the idea of hybrid conferences. |
| Vera Rulon FAHIMA @vrulon @MightyCasey @_DiMeSociety No, not. Am familiar with their work on digital via one of my clients. How do I join? #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 2021? #patientchat https://t.co/xlQTPDA9Ke |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T3: Zoom & other web-based platforms have allowed support groups to keep meeting, patients to work safely with flexibility, and patients to seek health care remotely. Letβs hope the good parts of our virtual world help patients even after this pandemic ends. #patientchat |
| Patient Empowerment Network @power4patients @BarbyIngle @patientchat Congratulations on your awards! I hope you achieve all your 2021 goals and more! #patientchat |
| Marni Cartelli @Purrfectly_Rare @malezebra20202 @patientchat Yes! #mentalhealth & #chronicpain are 2 important topics. But I'm happy 2 see that mental health is finally getting some spotlight. #patientchat |
| David Ross @mensraredisease @BarbyIngle @patientchat That's sounds a good mindset about 20201 goals #patientchat |
| Vera Rulon FAHIMA @vrulon @Purrfectly_Rare Excellent point. #Telehealth actually includes a myriad of digital health - #AI etc. etc. #patientchat |
| Ma vie de zΓ¨bre β’ A-Danielle G. @ADanGrenier @patientchat T4 Iβm passionate about rare diseases, raising awareness, HCW education and being a patient-partner! The Montreal model of patient partnership needs to be talked about more! #patientchat |
| Diverse Health Hub @DHealthhub RT @carlyflumer: Q3: I think covid showed the nuances of healthcare that need to be addressed now rather than later: Q3: I think covid showed the nuances of healthcare that need to be addressed now rather than later: #healthequity, #healthdisparities, diversity in #clinicaltrials, and #telehealth. #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T4: Health equity. Health equity. Health equity. Health equity. Oh, did I mention health equity? #patientchat |
| Barby Ingle Official @BarbyIngle #patientchat T2: In 2020 I wish I had paid more attention to my pharmacogenomic results before Nov. I could of got help faster with less side effects. Now I know, 2021... and beyond, I will be paying full attention! |
| David Ross @mensraredisease @Purrfectly_Rare @patientchat Yes #mentalhealth finally getting some attention but the consistency needs to be there with this #patientchat |
| Diverse Health Hub @DHealthhub @JillZitzewitz Yes, itβs so important to stay connected π€ #patientchat |
| Marni Cartelli @Purrfectly_Rare @ADanGrenier Hummm...ideas I never thought of π€ I guess I want to try everything that I once thought I couldn't do because of my condition. I need to learn what I am actually limited on vs. what fear has been stopping me from doing. So, no harming of hamsters I promise! #patientchat |
| Alexa Jett π¦ @ohhiialexa T4: Thyroid Cancer is CANCER. I will not stop shouting this in 2021. BAN βGOOD CANCERβ for everyone who is labeled as such!! We need to have dialogue about terms/language around disease. #patientchat |
| Vera Rulon FAHIMA @vrulon Several mentioned already: #healthequity #SDOH Reaching #underserved more effectively, #clinicaltrials: diversity/inclusion, decentralized and hybrid #patientsincluded #patientchat |
| Diverse Health Hub @DHealthhub Sensing a theme here :) |
| Barby Ingle Official @BarbyIngle T3 #patientchat In 2020 I saw telehealth pick up and be covered by most insurances. It will be here to stay. This is something I had since 2015, but to see it go mainstream is great! Too bad it took covid to reset the system, but a positive out of the negative. |
| David Ross @mensraredisease @ohhiialexa Yes totally with you on this one #patientchat my mother had a rare disease but passed away due to #thyroidcancer |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T4: For 2021, Iβd like to see a continued focus on addressing health care disparities and advocating for diversity in clinical trials because ever patient should have equal access to care. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3: Telehealth. I think this is a trend now (maybe it already was?)...I just didn't know about it before. Time is a blur...from "normal" to symptoms in Mar 19' to diagnosis in Oct 19' rocked my world, then the pandemic. I didn't know how much I'd need & depend on it. #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa Shout it for the people in the back, aka #MedTwitter #patientchat |
| Diverse Health Hub @DHealthhub @vrulon Diversity in clinical trials is a huge one and goes hand in hand with addressing medical mistrust! #patientchat |
| Vera Rulon FAHIMA @vrulon @DHealthhub Yes! Completely agree. @RickiDOVE #patientchat |
| Alexa Jett π¦ @ohhiialexa @malezebra20202 Iβm so sorry for your loss, and I will never stop advocating for people like her ππ¦ #patientchat |
| Marni Cartelli @Purrfectly_Rare #patientchat Oopsie this is me!π€¦ββοΈ Hey everyone I'm Marni from NY. I'm a #RareDisease & #ChronicPain / #chronicillness patient/advocate But aren't most patients advocates in one way or another? |
| Barby Ingle Official @BarbyIngle T4 #patient chat In 2021, I hope to c, hear & do more putting PT's first, the patient voice 2 count for all its worth & patients to step up & taken control of their health decisions more often. I'd like to see more health ed for those under 18 Lets teach em before they need help |
| Patient Empowerment Network @power4patients T4: Would love to hear more patients + caregivers share their stories. Shared stories bring hope + encouragement to others. It gives the extra push to seek that second or third opinion. There's no guilt in doing whatβs best for YOU #patientchat Share your story with us at PEN! |
| Patient Empowerment Network @power4patients RT @JillZitzewitz: T4: T4: For 2021, Iβd like to see a continued focus on addressing health care disparities and advocating for diversity in clinical trials because ever patient should have equal access to care. #patientchat |
| Patient Chat @patientchat Last Topic (T5:) coming up... #patientchat |
| Diverse Health Hub @DHealthhub RT @JillZitzewitz: T4: T4: For 2021, Iβd like to see a continued focus on addressing health care disparities and advocating for diversity in clinical trials because ever patient should have equal access to care. #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/gL7QCwoi7G |
| David Ross @mensraredisease @ohhiialexa Thanks yeah 5 years ago on the 28th December she passed away. Every Christmas time has been tough but got to keep advocating #patientchat |
| Diverse Health Hub @DHealthhub @JillZitzewitz Agree with ALL of this Jill! #patientchat |
| Patient Chat @patientchat #patientchat |
| Marni Cartelli @Purrfectly_Rare "Shameless plug" sucess! Anybody interested in a #thyca support group see below: |
| Alexa Jett π¦ @ohhiialexa @ADanGrenier I am so sorry you experienced that! π’ I donβt like comparison game or, what I call βThe Suffering Olympicsβ. Chronic and rare diseases suck, cancer sucks, THERE IS ENOUGH COMPASSION TO GO AROUND!! You donβt need a label for something to SUCK! #patientchat |
| Barby Ingle Official @BarbyIngle @patientchat Thanks for the # assist. #patientchat π |
| Patient Empowerment Network @power4patients RT @ohhiialexa: T4: T4: Thyroid Cancer is CANCER. I will not stop shouting this in 2021. BAN βGOOD CANCERβ for everyone who is labeled as such!! We need to have dialogue about terms/language around disease. #patientchat |
| Alexa Jett π¦ @ohhiialexa @carlyflumer THYROID CANCER IS CANCER!! #patientchat https://t.co/TKuI1xZc6D |
| Ma vie de zèbre ⒠A-Danielle G. @ADanGrenier @patientchat T5 Talk about our experience & what worked; share info, resources & tell people about events like these where they can learn how to advocate for themselves. Knowledge is power! #patientchat |
 | Spencer Health Solutions @spencerhealth Never stop pushing. Share, promote, and explain. Education never ends. #PatientChat |
| Vera Rulon FAHIMA @vrulon T5: Build trust by reaching out, networking, especially locally - the grass roots - healthcare is personal. Collaboration needs to happy outside the #healthcare system too. #patientchat |
| Marni Cartelli @Purrfectly_Rare A4. #patientchat I am passionate about cats & football, but I doubt either would make great topics π€£ I think the chats have been great about addressing current issues. I think I'd like to see that stay & have topics dictated by the needs at the time....or there is always cats. |
| Patient Empowerment Network @power4patients RT @vrulon: T5: T5: Build trust by reaching out, networking, especially locally - the grass roots - healthcare is personal. Collaboration needs to happy outside the #healthcare system too. #patientchat |
| David Ross @mensraredisease @patientchat That's a tough one. I personally think encourage patients to speak about their health and build bridges with all stakeholders to drive patient needs forward. Easier said than done but just got to keep digging deep to push along #patientchat |
| Patient Empowerment Network @power4patients RT @ADanGrenier: @patientchat T5 Talk about our experience & what worked; share info, resources & tell people about events like these where they can learn how to advocate for themselves. Knowledge is power! #patientchat |
 | Coach Bonnie @CoachBon RT @JillZitzewitz: T4: T4: For 2021, Iβd like to see a continued focus on addressing health care disparities and advocating for diversity in clinical trials because ever patient should have equal access to care. #patientchat |
| Alexa Jett π¦ @ohhiialexa T5: Be supportive and welcoming! No cliques or hierarchies, playing on the same team instead of us vs them. #patientchat |
| Diverse Health Hub @DHealthhub RT @vrulon: T5: T5: Build trust by reaching out, networking, especially locally - the grass roots - healthcare is personal. Collaboration needs to happy outside the #healthcare system too. #patientchat |
| Diverse Health Hub @DHealthhub RT @ADanGrenier: @patientchat T5 Talk about our experience & what worked; share info, resources & tell people about events like these where they can learn how to advocate for themselves. Knowledge is power! #patientchat |
 | Dennis Fortier @BrainToday A particular challenge, and added obstacle, for patients with memory impairing disorders, is the accompanying stigma of their condition. More open education and discussion is the only path forward through that unnecessary murk... #patientchat |
| Alexa Jett π¦ @ohhiialexa @Purrfectly_Rare I too am passionate about cats! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4: I'm new-ish here, so perhaps this has been discussed before, but I'd like to hear more about general advocacy. Maybe focus on specific advocates/causes occasionally. While I LOVE parents of #Rare kiddos, I'd like to focus on parenting as a #RareDisease patient. #patientchat |
 | Christina Lizaso @btrfly12 RT @ohhiialexa: @ADanGrenier I am so sorry you experienced that! π’ I donβt like comparison game or, what I call βThe Suffering Olympicsβ. Chronic and rare diseases suck, cancer sucks, THERE IS ENOUGH COMPASSION TO GO AROUND!! You donβt need a label for something to SUCK! #patientchat |
| Barby Ingle Official @BarbyIngle T5 #patientchat People have 2b ready for change, which is hard. If someone is ready encourage them 2 do their thing, even if its different from ur thing. We have to be ok w knowing not every1 will agree w us and that doesn't make us or them bad. Diversity improves collaboration. |
| Diverse Health Hub @DHealthhub @ADanGrenier @patientchat Agree with this 100% We find strength and inspiration through shared experiences! Events like this remind people that they are not alone! #patientchat |
| Alexa Jett π¦ @ohhiialexa @RareDiseaseDad @patientchat This is a very good point! #patientchat https://t.co/FVqjJ5FkLN |
| Vera Rulon FAHIMA @vrulon @Crohnoid Excellent idea! HCPs can learn from us, too! #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T4: T4: Thyroid Cancer is CANCER. I will not stop shouting this in 2021. BAN βGOOD CANCERβ for everyone who is labeled as such!! We need to have dialogue about terms/language around disease. #patientchat |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T5: Sharing our story, sharing resources and knowledge, building community and walking side-by-side with others are good ways to empower other patients to be their own best advocates. πππ #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4 (cont.): Also more personally, I'd like to discuss Long Term Disability plans, & SSDI connections. I'm grappling with a lot of thoughts & happenings here, & it's incredibly difficult. I hope to be a resource here & would be curious to see how it's impacted others. #patientchat |
| Patient Empowerment Network @power4patients RT @JillZitzewitz: T5: T5: Sharing our story, sharing resources and knowledge, building community and walking side-by-side with others are good ways to empower other patients to be their own best advocates. πππ #patientchat |
| Alexa Jett π¦ @ohhiialexa @Purrfectly_Rare Sasha and Dewey say βMeow Hi meoooww!β πΊ #patientchat https://t.co/jyBrUYafIq |
| 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 |
| Alexa Jett π¦ @ohhiialexa @ADanGrenier Yes! We must support each other, because no matter what, we all deal with suck! #patientchat |
| David Ross @mensraredisease @aprilm2011 @patientchat Agree #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: T3: T3: Digital literacy was a big one this year especially due to COVID-19. Iβm happy we were able to launch our virtual version of digital sherpaβ’, Digitally Empoweredβ’. This course helps lessen the digital divide among older patients. #patientchat https://t.co/6CLfJzxGlH |
| Adam Johnson - DadVocate @RareDiseaseDad @BarbyIngle Preach, Barby! π #patientchat |
| Alexa Jett π¦ @ohhiialexa CT: I am glad to hear that we have low to no regrets about 2020. This was a year with many challenges, and I feel like we still all contributed a lot in advocacy. Proud of each and every single one of you! #patientchat |
| Vera Rulon FAHIMA @vrulon CT: Although 2020 may have derailed each of us in some way, it was also a learning experience that we are resilient & passionate! 2021 will bring renewed focus on issues that were amplified in 2020: #healthequity, #clinicaltrials diversity, #SODH, the list goes on! #patientchat |
| Patient Chat @patientchat RT @ohhiialexa: CT: CT: I am glad to hear that we have low to no regrets about 2020. This was a year with many challenges, and I feel like we still all contributed a lot in advocacy. Proud of each and every single one of you! #patientchat |
| Marni Cartelli @Purrfectly_Rare A.5 #patientchat I think we empower others by listening 2 their experiences & not dismissing.Even if they r dif than ours.We need more #empathy & #kindness Collaboration can b born from necessity or trust & we must b careful 2 not break trust,even when its given out of necessity |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: I feel like sharing & owning our own stories helps. The more we can do this, in whatever way is best for us, the better (in my opinion). Joining communities like these has been very helpful & empowering for me, & encourages me when I'm down. So, spread the love! #patientchat |
| Patient Empowerment Network @power4patients RT @Purrfectly_Rare: A.5 #patientchat I think we empower others by listening 2 their experiences & not dismissing.Even if they r dif than ours.We need more #empathy & #kindness Collaboration can b born from necessity or trust & we must b careful 2 not break trust,even when its given out of necessity |
| Patient Chat @patientchat Thanks to all for joining todayβs Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| David Ross @mensraredisease @Purrfectly_Rare Well said #patientchat |
| Patient Empowerment Network @power4patients RT @vrulon: CT: CT: Although 2020 may have derailed each of us in some way, it was also a learning experience that we are resilient & passionate! 2021 will bring renewed focus on issues that were amplified in 2020: #healthequity, #clinicaltrials diversity, #SODH, the list goes on! #patientchat |
| Christina Lizaso @btrfly12 Just catching the end of #patientchat but loved hearing about everyone's accomplishments and goals. Sending love and light to all. |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Empowerment Network @power4patients RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Chat @patientchat Thank you all for a great year of #patientchat! There will be no chat on 12/25 due to the holidays. We hope to see you again in 2021! |
| Vera Rulon FAHIMA @vrulon Another fabulous #patientchat! Thanks for having me. Looking forward to 2021 and more chatting!!! |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey T5: That digital outreach thing you sent me this week is great - will set that up to fly around (via my Hootsuite dashboard) starting this weekend. #patientchat |
| Mighty #HeathenSlut CaseyπΊπ¦π @MightyCasey RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: @patientchat T5: @patientchat T5: I feel like sharing & owning our own stories helps. The more we can do this, in whatever way is best for us, the better (in my opinion). Joining communities like these has been very helpful & empowering for me, & encourages me when I'm down. So, spread the love! #patientchat |
| Alexa Jett π¦ @ohhiialexa @Purrfectly_Rare Awwwwww! π₯Ί ADORABLE!! π#patientchat |
| Christina Lizaso @btrfly12 RT @Purrfectly_Rare: A.5 #patientchat I think we empower others by listening 2 their experiences & not dismissing.Even if they r dif than ours.We need more #empathy & #kindness Collaboration can b born from necessity or trust & we must b careful 2 not break trust,even when its given out of necessity |
| Christina Lizaso @btrfly12 RT @JillZitzewitz: T5: T5: Sharing our story, sharing resources and knowledge, building community and walking side-by-side with others are good ways to empower other patients to be their own best advocates. πππ #patientchat |
| Patient Chat @patientchat If you have a topic in mind for a future #patientchat or would like to be a guest host in 2021, please let us know! :) |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz CT: In my 1st #patientchat, I am reminded that I can use my voice to help other #myeloma patients. Iβm excited to find new ways to continue to advocate for patients in 2021, and Iβm grateful for this community of patient advocates, who are teaching me so much! ππ»π #mmsm |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Patient Empowerment Network @power4patients Happy Holidays everyone! See you all soon in 2021! #patientchat |
| Marni Cartelli @Purrfectly_Rare Yess! There is no us v them- or at least there shouldn't be. We all have a place in the community! #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: Happy Holidays everyone! See you all soon in 2021! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: Celebrate the successes, allow yourself to feel the emotions you have, lean into the communities that are so supportive (such as #patientchat), keep advocating, keep seeking & providing support. We are #StrongerTogether & that will continue to be the case. Thank you all! π |
| Marni Cartelli @Purrfectly_Rare I can't believe it needs to be said There is NO good #cancer There is NO good #RareDisease There is NO good #chronicillness We need to #support each patient and their family. PERIOD! #patientchat |
 | Spoon Central π¦π₯ @spoon_central RT @Purrfectly_Rare: I can't believe it needs to be said There is NO good #cancer There is NO good #RareDisease There is NO good #chronicillness We need to #support each patient and their family. PERIOD! #patientchat |
| Marni Cartelli @Purrfectly_Rare Ct: #patientchat I realize there r so many more ppl out there like me. Who want 2 help & show #support 2 those who r suffering the most Sometimes I need a reminder that there's more good than bad,more alike than different & more hope than despair when we unite This=that reminder |
| Alexa Jett π¦ @ohhiialexa @Purrfectly_Rare And chronic/rare vs cancer battles have to stop, especially from outsiders belittling people by comparison! One of my friends is an MS advocate, and we are so much more alike than different! #patientchat |
| Marni Cartelli @Purrfectly_Rare Yesss! We are so much alike! We should be each other's greatest allies but I think, like you said, the outside world messes that up. We need to put in earplugs & then work together! #patientchat |
#patientchat content from Twitter.