#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. |
 | Memej99-SickleCellLifeOfMemej @Memej99 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. |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: You can find the topics we’ll cover on today’s Empowered #patientchat here:https://t.co/uYJCJR2n54 |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Salem Oaks @SalemOaks #patientchat Kevin from Salem Oaks and @RareNewEngland here. Been away for awhile, Looking forward to the chat. |
 | Patient Empowerment Network @power4patients Hi everyone! Kara from PEN here and looking forward to hearing everyone's thoughts today #patientchat |
| Patient Chat @patientchat Happy Friday! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat 😊 |
 | Simply Kristy @SimplyKristyD Hi Everyone 👋 I'm Kristy, a mom, wife, founder (@cshealthapp) and a #raredisease patient #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 #PatientChat starts now! Join in with me & other participants!👇🏿 |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Join us for a “Vaccine Hesitancy: Join us for a “Vaccine Hesitancy: Let's Talk About It” Empowered #patientchat on Friday, February 19th @ 10 AM PT| 1 PM ET! https://t.co/uYJCJR2n54 https://t.co/jOa1q64fmx |
| Simply Kristy @SimplyKristyD @power4patients Hi Kara! How are you? #patientchat |
 | Vera Rulon FAHIMA @vrulon #patientchat Hello All! Vera here from NY. Healthcare strategic consultant, artist. Looking forward to the chat!! |
 | Patient Worthy @PatientWorthy Hi #patientchat! Jessica from PW here. How is everyone doing today? |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Happy Friday! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat 😊 |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Patient Empowerment Network @power4patients @SalemOaks @RareNewEngland Hi Kevin, great to see you back and I hope you've been well! #patientchat |
| Patient Empowerment Network @power4patients @SimplyKristyD Hi Kristy! I'm doing well and happy it's Friday :) How have you been? #patientchat |
| Salem Oaks @SalemOaks @power4patients @RareNewEngland Been very well. Tough times for everyone and I so want to go somewhere, anywhere. #patientchat |
| Patient Chat @patientchat @vrulon Hi Vera! Nice to have you with us today. #patientchat |
| Simply Kristy @SimplyKristyD @power4patients Doing better, thanks! Had a rough few weeks with a flu/cold but am on the mend #patientchat |
| Patient Chat @patientchat @PatientWorthy Doing well! Happy you’re here Jessica #patientchat |
 | Diverse Health Hub @DHealthhub @patientchat @power4patients Hi, I’m Jemela with @DHealthhub! Happy to participate, learn & engage with others! #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Vaccine Hesitancy: Let’s Talk About It https://t.co/uYJCJR2n54 |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I'm Adam, a rare disease patient who is a dad first & an advocate second. That's why I like the term #DadVocate for me. Hope everyone is staying as safe & warm as possible. #patientchat |
| Patient Empowerment Network @power4patients @SimplyKristyD Oh no! I'm glad to hear you are doing better though #patientchat |
| Salem Oaks @SalemOaks Hey there @S4PM - this would be a great one to join. #patientchat #signthemanifesto |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat @power4patients Hi Nykema! Nice to see you here. Hope you're doing well. #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Hi Adam, great to see you here. How've you been? #patientchat |
| Patient Worthy @PatientWorthy @patientchat Happy to be here! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @DHealthhub @patientchat @power4patients Hi Jemela! How's it going? Hope all is well! #patientchat |
| Patient Chat @patientchat @DHealthhub @power4patients Happy to have you here, Jemela! #patientchat |
| Patient Worthy @PatientWorthy @RareDiseaseDad @patientchat Hey Adam, great to see you here! #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Currently working but hoping to be a positive contributor to this conversation #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at the front of your answer - hard to remember but helpful #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD @patientchat Hey Kristy! I’m doing alright. How are you? Hope all is well! #patientchat |
 | Alicia C. Staley @stales Hi everyone - #patientchat |
| Patient Chat @patientchat @RareDiseaseDad @power4patients Hope you’re well too Adam and looking forward to the weekend! #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Hanging in there, Adam. Glad we made it to Friday. It's been a long (and snowy) week #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Salem Oaks @SalemOaks @myraredisease @patientchat Hey there fellow podcaster! I host @Raising_Rare and @ImDevPodcast We should connect and share notes. #patientchat @RareNewEngland |
| Diverse Health Hub @DHealthhub @patientchat T1: A number of things, but specifically for African Americans, a decades long history of medical mistrust. #patientchat |
| Patient Chat @patientchat @kerri0413 Wow congrats!! Don’t forget to use #patientchat in your responses :) |
| Adam Johnson - DadVocate @RareDiseaseDad @myraredisease @patientchat Hi Katy! Great to "see" you here. Hope the day is treating you well! And for others who haven't had a chance to check it out yet, the @myraredisease podcast is a winner! #patientchat |
| Patient Empowerment Network @power4patients T1: Some may mistrust the medical system, be misinformed, or be worried about the side effects #patientchat |
| Vera Rulon FAHIMA @vrulon T1: People are hesitant to get the vaccine due to potential side effects, mistrust in vaccines, and/or mistrust in government #patientchat |
| Simply Kristy @SimplyKristyD @SalemOaks @myraredisease @patientchat @Raising_Rare @ImDevPodcast @RareNewEngland We just launched our podcast - Simply Unbreakable - this week. Would love to connect and learn from you. #patientchat |
 | KerriEngebrecht @kerri0413 @patientchat Ok - I have one boy with pediatric COPD and one with Addison’s and seizures. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @PatientWorthy Hey Jessica! Doing ok here. Hope you're doing well! #patientchat |
| Patient Chat @patientchat T1: Why do you think people are hesitant to receive the COVID vaccine? #patientchat https://t.co/o4mKapWmix |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Hey Alan! Happy Friday. Hope you've made it through the week okay. #patientchat |
| Salem Oaks @SalemOaks T1 #patientchat Many reasons. Disinformation, lack of information, fears, stoicism, charity (others need it more) #pinksocks https://t.co/cgnpmJgPpg |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: Why do you think people are hesitant to receive the COVID vaccine? #patientchat https://t.co/o4mKapWmix |
| Simply Kristy @SimplyKristyD T1: People are hesitant to receive the Covid vaccine in part due to fear and in part due to lack of understanding as to how these types of treatments or vaccines are brought to market #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: There are many reasons. Fear of the unknown could be one. It’s so new, the typical process was accelerated out of necessity, & that’s difficult for some to process. There’s also so many opinions floating around that it’s hard to keep straight sometimes. #patientchat |
| Simply Kristy @SimplyKristyD T1 b) I think there is fear in the speed in which these vaccines were launched w/o the understanding that the scientists behind them have been working on them for years #patientchat |
 | Melissa VanHouten @melissarvh They think the approval process was rushed & perhaps not as rigorous as it needed to be. They worry about general side effects & those specific to their personal illness. They want longer-term data on its effects. #PatientChat |
 | Abhay Dandekar, MD FAAP @abhaydandekar T1: historic equity based mistrust and gaps in clinician fostered relationships have eroded a faith in institutions. We need grassroots, individual, family, and community based entrustment in science and delivery systems #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T1: A number of things, but specifically for African Americans, a decades long history of medical mistrust. #patientchat |
 | Christina Lizaso @btrfly12 RT @patientchat: T1: T1: Why do you think people are hesitant to receive the COVID vaccine? #patientchat https://t.co/o4mKapWmix |
| Patient Chat @patientchat Topic 2 (T2:) coming up..... #patientchat |
| Patient Empowerment Network @power4patients RT @abhaydandekar: T1: T1: historic equity based mistrust and gaps in clinician fostered relationships have eroded a faith in institutions. We need grassroots, individual, family, and community based entrustment in science and delivery systems #patientchat |
| Patient Chat @patientchat RT @abhaydandekar: T1: T1: historic equity based mistrust and gaps in clinician fostered relationships have eroded a faith in institutions. We need grassroots, individual, family, and community based entrustment in science and delivery systems #patientchat |
| Alicia C. Staley @stales RT @patientchat: T1: T1: Why do you think people are hesitant to receive the COVID vaccine? #patientchat https://t.co/o4mKapWmix |
| Patient Chat @patientchat T2: What are some myths you'd like to debunk specifically surrounding the COVID vaccine? #patientchat https://t.co/kWrowFYLte |
| Simply Kristy @SimplyKristyD RT @rarelikeher: T1: |
 | Amanda @MsAmandaGreene A1 some people don’t trust science and facts... #patientchat |
| Salem Oaks @SalemOaks @melissarvh The concern about the impact on personal illness is important to acknowledge. #patientchat |
| KerriEngebrecht @kerri0413 @patientchat T1: Many feel it was developed too quickly and there was general mistrust in the government. #patientchat |
| Christina Lizaso @btrfly12 T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
| Patient Empowerment Network @power4patients RT @rarelikeher: T1: |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What are some myths you'd like to debunk specifically surrounding the COVID vaccine? #patientchat https://t.co/kWrowFYLte |
| Patient Worthy @PatientWorthy A1. Some people believe the vaccine was too quickly developed. Because it is so new, many also do not know how it might affect them, especially if they have other conditions, causing fear and concern. #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T2: I have some helpful information that can be useful for debunking some of the myths that BIPOC people have about the vaccine below, 1 common misconception is that the vaccine will give you the virus. https://t.co/vAYNbvz0eQ #patientchat https://t.co/Ix0prTiKaQ |
| Christina Lizaso @btrfly12 RT @patientchat: T2: T2: What are some myths you'd like to debunk specifically surrounding the COVID vaccine? #patientchat https://t.co/kWrowFYLte |
| Melissa VanHouten @melissarvh RT @btrfly12: T1: T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @rarelikeher Hi Taylor! Hope all is well in the UK! #patientchat |
| Patient Worthy @PatientWorthy @23BLeslie Hey Leslie! It's a little chilly in Virginia right now but I'm doing well. How are you? #patientchat |
| Abhay Dandekar, MD FAAP @abhaydandekar T1- as a pediatrician, acknowledging history and garnering permission to engage and develop a relationship is critical #patientchat |
| Patient Chat @patientchat RT @btrfly12: T1: T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
| Patient Worthy @PatientWorthy @btrfly12 Agreed, which is an understandable fear and concern. #patientchat |
| Salem Oaks @SalemOaks T1 #patientchat I see a common theme of lacking trust in things "outside of ourselves." |
| Patient Empowerment Network @power4patients RT @DHealthhub: @patientchat T2: @patientchat T2: I have some helpful information that can be useful for debunking some of the myths that BIPOC people have about the vaccine below, 1 common misconception is that the vaccine will give you the virus. https://t.co/vAYNbvz0eQ #patientchat https://t.co/Ix0prTiKaQ |
| Amanda @MsAmandaGreene T2 instead of debunking myths, we should share the facts. Vaccines work. As a person who is #HighRiskCovid19 the vaccine is important to immune compromised populations so that we can avoid severe complications. #patientchat |
| KerriEngebrecht @kerri0413 @patientchat T2: when government went all in and out all resources towards development of the new vaccine, it was not all that quickly developed. #patientchat |
| Amanda @MsAmandaGreene RT @btrfly12: T1: T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
 | MomsThoughts™ @MomsThoughts RT @btrfly12: T1: T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
| Simply Kristy @SimplyKristyD T2: The biggest myth that I think needs to be debunked is that this vaccine is some sort of conspiracy to track people or control people. #patientchat |
| Alan Brewington @abrewi3010 A1 hard science is a skill set, not everyone has this ability. Add on top of that vaccine development is going through a rapid or expedited process of approval, it’s only natural to be nervous #patientchat |
| Patient Empowerment Network @power4patients @23BLeslie @patientchat Hi Leslie, glad you could join in today! #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up..... #patientchat |
| Patient Worthy @PatientWorthy A2. One myth is that you should not get the vaccine if you have already had COVID-19. Since we don't know how long the vaccine confers protection, or how long the antibodies are protective, even those who had COVID-19 should still be vaccinated. #patientchat |
| Christina Lizaso @btrfly12 RT @MsAmandaGreene: T2 instead of debunking myths, we should share the facts. Vaccines work. As a person who is #HighRiskCovid19 the vaccine is important to immune compromised populations so that we can avoid severe complications. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: Someone I know hesitated to get it because a person they knew got a fever, aches, etc. That’s not necessarily bad or unexpected. I find it ironic that some who deny the threats/impacts of #COVID are quick to point out the potential side effects of the vaccine. #patientchat |
| Vera Rulon FAHIMA @vrulon @MsAmandaGreene Agree. Well put. #patientchat |
| Patient Chat @patientchat T3: How can we help people who are feeling hesitant to be vaccinated? How can we counteract medical mistrust? #patientchat https://t.co/c3mqH5B07i |
| Christina Lizaso @btrfly12 RT @patientchat: T3: T3: How can we help people who are feeling hesitant to be vaccinated? How can we counteract medical mistrust? #patientchat https://t.co/c3mqH5B07i |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: How can we help people who are feeling hesitant to be vaccinated? How can we counteract medical mistrust? #patientchat https://t.co/c3mqH5B07i |
| Melissa VanHouten @melissarvh If I start using terms like "debunk," this will fail with those who are already suspicious. Best I can do is share information & ask people to review the studies/literature & make an informed decision. #PatientChat |
| Diverse Health Hub @DHealthhub @patientchat T3: The first critical step is to note the facts and dispel the myths surrounding the COVID-19 vaccine. We must stop the spread of misinformation and we need more BIPOC clinicians. #patientchat |
| Salem Oaks @SalemOaks T2 #patientchat @Pfizer and @Moderna are NOT selfishly withholding manufacturing knowledge. Both have multiple agreements for competitors to produce the vax. |
| Patient Empowerment Network @power4patients T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: https://t.co/ScJMg8uj9v #patientchat |
| Alan Brewington @abrewi3010 A2 that we fully understand the potential long term side effects of this vaccine. From what I understand we can’t be 100% sure until we hit long term. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @btrfly12 Great points, Christina! It's really not just as simple as saying "it's your turn, now go get it" in some instances Looking forward to seeing ideas about how we can help with these valid concerns. #patientchat |
| Patient Chat @patientchat RT @power4patients: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: https://t.co/ScJMg8uj9v #patientchat |
| Salem Oaks @SalemOaks @patientchat T2 #patientchat No scientific shortcuts were taken. The data collected from 100K plus study participants are sound. Speed came from extraordinary red tape shredding. |
| Vera Rulon FAHIMA @vrulon T3: Counteracting #medical #mistrust has been a long time barrier. One way to counter is educate, another to ensure diversity in #healthcareproviders so that communication is improved. #patientchat |
 | Jennifer Douglas @mmejendouglas @patientchat There seems to be many reasons I’m hearing. A lot of them center around how the vaccine works and whether or not it will have long term side effects #patientchat |
| Alan Brewington @abrewi3010 A3 medical mistrust is always going to be a side effect of a capitalist based healthcare system. #patientchat |
| Diverse Health Hub @DHealthhub RT @power4patients: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: https://t.co/ScJMg8uj9v #patientchat |
| Salem Oaks @SalemOaks T2 #patientchat mRNA vaccines are not new. Actually, BioNTech and Moderna have been studying them for years for other ailments. Vax for SARS-CoV-2 are the first to reach this stage. |
| Abhay Dandekar, MD FAAP @abhaydandekar T3 : we must coordinate our efforts with community leaders to work in a synchronized way to bridge gaps, generate dialogue, and provide easy and empathy based access. This will accelerate trust. |
 | Amanda G @LAlupusLady T3 Trust the science and research. Recognize that why you wear your mask, wash your hands and keep your social distance are all acts of “kindness“ - when it is your turn please get the vaccine. #patientchat |
| Christina Lizaso @btrfly12 T3: I think we have to make space for those who are hesitant. I don't think everyone will or should get vaccine. We have to address individual concerns and help people make informed choices. #patientchat |
| Patient Worthy @PatientWorthy @power4patients Fantastic, thank you for sharing. #patientchat |
 | IFTIKHAR MD ZIA @thisiszia RT @RareDiseaseDad: @patientchat Hi all. I'm Adam, a rare disease patient who is a dad first & an advocate second. That's why I like the term #DadVocate for me. Hope everyone is staying as safe & warm as possible. #patientchat |
| Amanda G @LAlupusLady RT @MsAmandaGreene: A1 some people don’t trust science and facts... #patientchat |
| Alan Brewington @abrewi3010 A3 we need more success stories from fellow patients published. We need more follow up stories published. Patients trust patients #patientchat |
| Amanda G @LAlupusLady RT @btrfly12: T1: T1: Added layer of concern for those with chronic conditions who know that those are generally been left out of studies. Rare and chronic folks and orgs will have to push for data and weigh risks on individual basis. #patientchat |
| Salem Oaks @SalemOaks T3 #patientchat Listen to their concerns. Provide factual resources. Tell them why we are confident in getting the Vax. |
| Amanda G @LAlupusLady RT @MsAmandaGreene: T2 instead of debunking myths, we should share the facts. Vaccines work. As a person who is #HighRiskCovid19 the vaccine is important to immune compromised populations so that we can avoid severe complications. #patientchat |
| Abhay Dandekar, MD FAAP @abhaydandekar T3 : we must coordinate our efforts with community leaders to work in a synchronized way to bridge gaps, generate dialogue, and provide easy and empathy based access. This will surely accelerate trust. #patientchat |
| Amanda G @LAlupusLady RT @power4patients: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: https://t.co/ScJMg8uj9v #patientchat |
| Patient Chat @patientchat #patientchat |
| Vera Rulon FAHIMA @vrulon @abrewi3010 Couldn't agree more. We learn from others' experiences. #patientchat |
| Christina Lizaso @btrfly12 T3: Those who've been attacked for promoting any vaccine have to leave that aside and address those w/ questions and concerns w/ empathy. Can be hard if have experienced online harassment but it is time to promote good facts and conversations. Don't vilify hesitancy. #patientchat |
| Jennifer Douglas @mmejendouglas Hi Checking in from SoCal. Breast cancer writer and survivor. DCIS in fall 2019. Now writing about my treatment and recovery #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up..... #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3a: There are many factors, some that I don’t have to deal with personally because of my privilege. Medical mistrust is there in some demographics, nationalities, races because of being severely & adversely impacted by things (past & present), including vaccinations.#patientchat |
| Patient Worthy @PatientWorthy @mmejendouglas Welcome, Jennifer! #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: #patientchat |
| Christina Lizaso @btrfly12 RT @abhaydandekar: T3 : T3 : we must coordinate our efforts with community leaders to work in a synchronized way to bridge gaps, generate dialogue, and provide easy and empathy based access. This will surely accelerate trust. #patientchat |
| Simply Kristy @SimplyKristyD T3: I try to listen to understand & without judgement when people share their vaccination hesitancy with me. I suggest reputable resources for them to refer too. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A3 we need more success stories from fellow patients published. We need more follow up stories published. Patients trust patients #patientchat |
| Salem Oaks @SalemOaks T3 #patientchat DO NOT argue with clear political or conspiratorial theories about the vaccines. Not worth the exasperation. Disengage and go back to providing facts and voicing confidence. |
| Simply Kristy @SimplyKristyD T3 b) I always try to highlight the importance of acknowledging the source of where people are gathering their information from and the importance of ensuring they are reputable and science based. #patientchat. |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3b: One big thing in my mind is to listen to & respect the experiences of others (especially when we don’t relate personally), & see what can be done moving forward in a respectful & collaborative manner. Don't judge, don't dismiss immediately. Listen! #patientchat |
| Patient Chat @patientchat RT @abrewi3010: A3 we need more success stories from fellow patients published. We need more follow up stories published. Patients trust patients #patientchat |
| Christina Lizaso @btrfly12 RT @LAlupusLady: T3 Trust the science and research. Recognize that why you wear your mask, wash your hands and keep your social distance are all acts of “kindness“ - when it is your turn please get the vaccine. #patientchat |
| Jennifer Douglas @mmejendouglas @dutchsmitty @patientchat Well put! #patientchat |
| Patient Worthy @PatientWorthy Fantastic answer, @abhaydandekar! #patientchat |
| Christina Lizaso @btrfly12 RT @SalemOaks: @patientchat T2 #patientchat No scientific shortcuts were taken. The data collected from 100K plus study participants are sound. Speed came from extraordinary red tape shredding. |
| Christina Lizaso @btrfly12 #patientchat |
| Melissa VanHouten @melissarvh People need to feel as if their concerns are being heard. Upfront discussions rather than dismissive & condescending attitudes will lead to better outcomes. You have to be open & honest re concerns, fears, facts, limitations. #PatientChat |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat T3b: @patientchat T3b: One big thing in my mind is to listen to & respect the experiences of others (especially when we don’t relate personally), & see what can be done moving forward in a respectful & collaborative manner. Don't judge, don't dismiss immediately. Listen! #patientchat |
| Alan Brewington @abrewi3010 RT @vrulon: @abrewi3010 Couldn't agree more. We learn from others' experiences. #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: T3: I came across this article from CNN that shares how you can respond to your loved one’s vaccine hesitancy: https://t.co/ScJMg8uj9v #patientchat |
| Salem Oaks @SalemOaks T4 #patientchat We need another full hour to chat about this one. @DrugInfoAssn https://t.co/3GvRbdHkhp |
| Patient Chat @patientchat T4: In light of the pandemic, clinical trials have come center stage. What inequities often present in clinical trials? #patientchat https://t.co/IPRdJNAncN |
| Christina Lizaso @btrfly12 Don't forget to add #patientchat so all can see your participation in the chat :) |
| Salem Oaks @SalemOaks T4 #patientchat Most people are unaware of clin trials. The lack of information gets thinner in underserved communities. |
| Christina Lizaso @btrfly12 RT @melissarvh: People need to feel as if their concerns are being heard. Upfront discussions rather than dismissive & condescending attitudes will lead to better outcomes. You have to be open & honest re concerns, fears, facts, limitations. #PatientChat |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: @patientchat T3b: @patientchat T3b: One big thing in my mind is to listen to & respect the experiences of others (especially when we don’t relate personally), & see what can be done moving forward in a respectful & collaborative manner. Don't judge, don't dismiss immediately. Listen! #patientchat |
| Salem Oaks @SalemOaks T4 #patientchat Decades of biopharm R&D not recognizing the built-in bias for recruiting white, middle class participants |
| Patient Chat @patientchat RT @melissarvh: People need to feel as if their concerns are being heard. Upfront discussions rather than dismissive & condescending attitudes will lead to better outcomes. You have to be open & honest re concerns, fears, facts, limitations. #PatientChat |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz Hi, I have three #rarediseases. My mitochondrial #disease caused many co-morbidity shenanigans and is most relevant to #COVIDVaccine concerns. Coming to you live from the center of the universe of Washington, D.C. #patientchat. |
 | Michael Smith @dutchsmitty @patientchat Thank you for this discussion #PatientChat |
| Patient Empowerment Network @power4patients T4: Some inequities may include racial/ethnic, geographic distribution, language/linguistic differences #patientchat |
| Patient Worthy @PatientWorthy A4. Due to access issues, some patients are unaware or unable to participate in clinical trials. There are also racial disparities, and patients with rare or chronic conditions are often left out of the equation. #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T4: The lack of diversity seen in clinical trials. The blog & graphic below, both help to explain why diversity in clinical trials benefits everyone. Diverse data from all minority groups is so vital. https://t.co/nVuBXQjvXT #patientchat https://t.co/PGyFZPmOxU |
| Salem Oaks @SalemOaks T4 #patientchat Add to that, a serious and well-founded mistrust of healthcare and clin trials by people of color. |
| Christina Lizaso @btrfly12 RT @patientchat: T4: T4: In light of the pandemic, clinical trials have come center stage. What inequities often present in clinical trials? #patientchat https://t.co/IPRdJNAncN |
| Amanda G @LAlupusLady T4 Research and clinical trials need to explain how people and patients can help move science forward by participating in studies and trials. #patientchat https://t.co/yqKudAw3gW |
| Patient Chat @patientchat RT @abhaydandekar: T3 : T3 : we must coordinate our efforts with community leaders to work in a synchronized way to bridge gaps, generate dialogue, and provide easy and empathy based access. This will surely accelerate trust. #patientchat |
| Christina Lizaso @btrfly12 RT @DHealthhub: @patientchat T4: @patientchat T4: The lack of diversity seen in clinical trials. The blog & graphic below, both help to explain why diversity in clinical trials benefits everyone. Diverse data from all minority groups is so vital. https://t.co/nVuBXQjvXT #patientchat https://t.co/PGyFZPmOxU |
| Patient Chat @patientchat #patientchat |
| Vera Rulon FAHIMA @vrulon T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Simply Kristy @SimplyKristyD RT @LAlupusLady: T4 Research and clinical trials need to explain how people and patients can help move science forward by participating in studies and trials. #patientchat https://t.co/yqKudAw3gW |
| Salem Oaks @SalemOaks T4 #patientchat Follow the SDoH. Food insecurity, income inequality, underfunded schools, and you will find lack of clinical trial opportunities. #inequity |
| Simply Kristy @SimplyKristyD RT @PatientWorthy: A4. Due to access issues, some patients are unaware or unable to participate in clinical trials. There are also racial disparities, and patients with rare or chronic conditions are often left out of the equation. #patientchat |
| Amanda G @LAlupusLady @btrfly12 FYI @JohnsHopkins is. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: #patientchat |
| Patient Chat @patientchat RT @DHealthhub: @patientchat T4: @patientchat T4: The lack of diversity seen in clinical trials. The blog & graphic below, both help to explain why diversity in clinical trials benefits everyone. Diverse data from all minority groups is so vital. https://t.co/nVuBXQjvXT #patientchat https://t.co/PGyFZPmOxU |
| Alan Brewington @abrewi3010 A4 generally speaking, clinical trails are for those that already have access up healthcare or tweet chats. That means white, middle class types. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4: #RareDisease has many spaces to enter (clinical trials included). Access is needed & it's an inequity. Unfortunately, approaching isn't on the table in many instances, for a variety of reasons (demographics, race, ethnicity, disease specificity, insurance, etc.). #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up..... #patientchat |
| Diverse Health Hub @DHealthhub RT @abhaydandekar: T3 : T3 : we must coordinate our efforts with community leaders to work in a synchronized way to bridge gaps, generate dialogue, and provide easy and empathy based access. This will surely accelerate trust. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @DHealthhub @patientchat Outstanding graphic! I'll bookmark the blog link for later. Thanks for sharing! #patientchat |
| Patient Chat @patientchat T5: Do you have any go-to resources that provide education surrounding the COVID vaccine? #patientchat https://t.co/3QE1TWtl5S |
| Patient Chat @patientchat RT @vrulon: T4: T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Abhay Dandekar, MD FAAP @abhaydandekar T4-: education and ethics should be prioritized at every level and patient centered leaders should be present at every level of the initiation and implementation process. #patientchat |
| Amanda G @LAlupusLady RT @vrulon: T4: T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: Do you have any go-to resources that provide education surrounding the COVID vaccine? #patientchat https://t.co/3QE1TWtl5S |
| Patient Chat @patientchat @ObesityAdvocate Don’t forget to add #patientchat to your answers! |
| Alan Brewington @abrewi3010 A4 despite improvements, medical literacy is still a big issue in our country. Understanding the basic concept of a clinical trial is hard, misunderstanding breeds stress/lower participation #patientchat |
| Salem Oaks @SalemOaks T4 #patientchat @RareNewEngland we are trying to understand and characterizer the intersection of rare disease and diversity. It is not easy, but omentum is building. |
| KerriEngebrecht @kerri0413 @patientchat T5: I listen to daily briefings from state and local media; advocacy groups for my children’s illnesses. I trust the Covid response teams in place. Given all the attention I have gotten this week I have been put in touch with those at the top to help others #patientchat |
 | Victoria (she/her/ella) @aggievic14 RT @vrulon: T4: T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Christina Lizaso @btrfly12 clinical trial diversity problem has been around a long time and has been slow to make progress. Hoping this pandemic helps push forward again. In cancer, Blacks make up 13% US population but only around 4% of cancer clinical trials. Hispanics 16% US vs 5% in trials #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: I’ve been lucky to have information from my specific #RareDisease group that's provided vaccine info. Perhaps some of you #patientchat participants are familiar with the following presentation, which I found helpful: https://t.co/VFOPUAEr2Z |
| Patient Empowerment Network @power4patients T5: Recently, the @NCCN released COVID-19 Vaccine Guidance that shares some top recommendations for cancer patients https://t.co/4cwMfbkZb4 #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T1. Some fellow #patients have *severe* #disease progression following #vaccines. Which when described are definitely reasonable concerns. They've sort of come around realizing #COVIID presents differently in #children #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A4 despite improvements, medical literacy is still a big issue in our country. Understanding the basic concept of a clinical trial is hard, misunderstanding breeds stress/lower participation #patientchat |
| Salem Oaks @SalemOaks T5 #patientchat https://t.co/2OrUCiJWlW Go to the source! |
| Jennifer Douglas @mmejendouglas @patientchat A5: I tend to go for the resources produced by cdc, local health agencies, and national medical providers. I also have been known to look for the safety data produced by the manufacturers. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T5: T5: Do you have any go-to resources that provide education surrounding the COVID vaccine? #patientchat https://t.co/3QE1TWtl5S |
| Diverse Health Hub @DHealthhub @patientchat T5: My go to resources include the @DHealthhub website, because they focus on health equity for all people & I also frequent the @SCDAAorg website to specifically focus on the vaccine for patients with Sickle Cell, like myself. I know these are reliable sources. #patientchat |
| Patient Chat @patientchat RT @power4patients: T5: T5: Recently, the @NCCN released COVID-19 Vaccine Guidance that shares some top recommendations for cancer patients https://t.co/4cwMfbkZb4 #patientchat |
| Salem Oaks @SalemOaks T5 #patientchat https://t.co/n3lg9xL3HQ for a down to earth explanation of the clinical trials. |
| Christina Lizaso @btrfly12 RT @vrulon: T4: T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Diverse Health Hub @DHealthhub RT @power4patients: T5: T5: Recently, the @NCCN released COVID-19 Vaccine Guidance that shares some top recommendations for cancer patients https://t.co/4cwMfbkZb4 #patientchat |
| Christina Lizaso @btrfly12 RT @SalemOaks: T5 #patientchat https://t.co/n3lg9xL3HQ for a down to earth explanation of the clinical trials. |
| Amanda G @LAlupusLady Resources and people I trust @rheum_covid @CDCgov @JohnsHopkins @DrSwamyV @BrennanSpiegel @CedarsSinai @UCLAHealth and Dr. Fauci. #patientchat |
| Salem Oaks @SalemOaks T5 #patientchat https://t.co/IeIi5ivZMm You can follow the data without some commentators trying to "guide" you. |
| Christina Lizaso @btrfly12 RT @power4patients: T5: T5: Recently, the @NCCN released COVID-19 Vaccine Guidance that shares some top recommendations for cancer patients https://t.co/4cwMfbkZb4 #patientchat |
| Melissa VanHouten @melissarvh Besides the typical resources cited (CDC, major medical universities, NIH, state health depts, etc.), we always encourage our members to consult their own physicians so that they can discuss individual concerns & come up with the approach best suited to their needs. #PatientChat |
| Amanda G @LAlupusLady RT @SalemOaks: T5 #patientchat https://t.co/IeIi5ivZMm You can follow the data without some commentators trying to "guide" you. |
| 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 |
| Christina Lizaso @btrfly12 RT @melissarvh: Besides the typical resources cited (CDC, major medical universities, NIH, state health depts, etc.), we always encourage our members to consult their own physicians so that they can discuss individual concerns & come up with the approach best suited to their needs. #PatientChat |
| Alan Brewington @abrewi3010 A5 my main source comes from Twitter and chats like this. I’m not a hard science guy or brain. I understand patient stories so that’s what I search for. Should also mention that I don’t care about diagnosis silos, I try to read all stories #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @kerri0413 @patientchat I'm going to have to read up on your week a bit more, Kerri, but I do know that I appreciate how you're using this as an opportunity to help others, Kerri! Thank you! 💚 #patientchat |
| Salem Oaks @SalemOaks T5 #patientchat I follow @EricTopol @DrPaulOffit |
| Adam Johnson - DadVocate @RareDiseaseDad @abhaydandekar This...this is a winning combination! Yes, please! #patientchat |
| Christina Lizaso @btrfly12 What finally convinced my mom to get the vaccine was the data coming out about long-term COVID side effects. #patientchat |
| Jennifer Douglas @mmejendouglas Ct: Thanks for letting me join in. Good topic today and lots of great information shared! Take care everyone! #patientchat |
| Diverse Health Hub @DHealthhub @patientchat CT: I was reminded of how important it is to seek trusted sources of information when it comes to Covid19 vaccine knowledge. Multiple sources, if necessary. I learned of new resources to check for information which I plan on implementing as well #patientchat |
| Christina Lizaso @btrfly12 Thanks all for sharing their COVID vaccine resources and experiences on #patientchat I think videos can be great in sharing information as well. I know there was a good one on mRNA going around, but don't see it in my bookmarks. |
| KerriEngebrecht @kerri0413 @patientchat #patientchat - we are looking into some clinical trials so I am going to look through some of those responses and the resources that were shared here! Glad I finally hopped on - I usually do not see it until after! |
| Amanda G @LAlupusLady CT Hoping the community conversation continues... as we share our thoughts and facts about the vaccine #patientchat is an important resource for discussion on relevant topics. Thank you. https://t.co/EVR4wyhbfu |
| Salem Oaks @SalemOaks @RareNewEngland Pardon the typos. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Adam Johnson - DadVocate @RareDiseaseDad @SalemOaks Yes! This presentation answered (or at least provided some more information for) many questions that present, specifically in the #RareDisease communities. And it comes from the source you mentioned! #patientchat ⬇️ https://t.co/VFOPUAEr2Z |
| Simply Kristy @SimplyKristyD CT: Clearly, the problem of vaccine hesitancy isn't going away but it sounds like there are some great approaches and resources available #patientchat |
| Alan Brewington @abrewi3010 CT our country desperately needs a conversation on what public health means. To many think my ability to watch a game live after shopping at a mall is more important than protecting those of us with compromised immune systems. #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: @SalemOaks Yes! This presentation answered (or at least provided some more information for) many questions that present, specifically in the #RareDisease communities. And it comes from the source you mentioned! #patientchat ⬇️ https://t.co/VFOPUAEr2Z |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T2: 1) The #COVIDVaccines can cause #COVID. [Not possible with mRNA #vaccines.] 2) It causes "side effects". [It's an immune system response.] #patientchat |
| Patient Chat @patientchat @LAlupusLady Thank you for joining us today!! #patientchat |
| Patient Chat @patientchat Do you love #patientchat and want to help PEN (@power4patients) continue offering programs like it? Please nominate PEN for a grant from the Glassybaby Foundation through a quick, 2-step process. Learn more: https://t.co/HNUrgn5XSz |
| Patient Empowerment Network @power4patients RT @patientchat: Do you love #patientchat and want to help PEN (@power4patients) continue offering programs like it? Please nominate PEN for a grant from the Glassybaby Foundation through a quick, 2-step process. Learn more: https://t.co/HNUrgn5XSz |
| Christina Lizaso @btrfly12 I definitely think I benefitted in already having curated a bunch of twitter folks in the healthcare space that I could look to the collective guidance to support the main official sources. So thanks to those HC workers who take time to be active on social #patientchat |
| Patient Chat @patientchat Join us for a “Genome-Wide Sequencing: What an Empowered Patient Needs to Know" #patientchat with @GenCOUNSEL_CA on Friday, March 5th @ 10 AM PT| 1 PM ET! https://t.co/MroF1mkuvE https://t.co/tYGIHBIL71 |
| Diverse Health Hub @DHealthhub @patientchat @power4patients Thank YOU! I always enjoy the chats & leave feeling more knowledgeable! Have a great weekend! -Jemela #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: Join us for a “Genome-Wide Sequencing: Join us for a “Genome-Wide Sequencing: What an Empowered Patient Needs to Know" #patientchat with @GenCOUNSEL_CA on Friday, March 5th @ 10 AM PT| 1 PM ET! https://t.co/MroF1mkuvE https://t.co/tYGIHBIL71 |
| Melissa VanHouten @melissarvh RT @patientchat: Join us for a “Genome-Wide Sequencing: Join us for a “Genome-Wide Sequencing: What an Empowered Patient Needs to Know" #patientchat with @GenCOUNSEL_CA on Friday, March 5th @ 10 AM PT| 1 PM ET! https://t.co/MroF1mkuvE https://t.co/tYGIHBIL71 |
| KerriEngebrecht @kerri0413 @RareDiseaseDad @patientchat #patientchat I have been in People, Newsweek, Washington Post called. Two local news channels, a few local papers and radio talk shows;apparently in Europe too!! If on FB it is everywhere on my feed - riding momentum for change. I have a contact on white how Covid response team! |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Keep the conversation going between chats with hashtag #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Join us for a “Genome-Wide Sequencing: Join us for a “Genome-Wide Sequencing: What an Empowered Patient Needs to Know" #patientchat with @GenCOUNSEL_CA on Friday, March 5th @ 10 AM PT| 1 PM ET! https://t.co/MroF1mkuvE https://t.co/tYGIHBIL71 |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: There are many considerations that go into vaccine hesitancy. It's not a simple yes/no answer. Like so many other areas in life, we need to listen, collaborate, be respectful, listen more, plan, & implement according to what we hear from all members of society. #patientchat |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat CT: @patientchat CT: There are many considerations that go into vaccine hesitancy. It's not a simple yes/no answer. Like so many other areas in life, we need to listen, collaborate, be respectful, listen more, plan, & implement according to what we hear from all members of society. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: @patientchat CT: @patientchat CT: There are many considerations that go into vaccine hesitancy. It's not a simple yes/no answer. Like so many other areas in life, we need to listen, collaborate, be respectful, listen more, plan, & implement according to what we hear from all members of society. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T3) Share articles on Facebook. More specifically, from reputable sources. Like @STAT, and other #science-focused news sources. Be sure to fact-check!! #patientchat |
| Patient Chat @patientchat Have a great weekend everyone! Hope to "see" you all at the next #patientchat! - Nykema |
| Christina Lizaso @btrfly12 RT @LifeAccrdingLiz: T3) Share articles on Facebook. More specifically, from reputable sources. Like @STAT, and other #science-focused news sources. Be sure to fact-check!! #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat You too! Sorry had to drop off early!! #patientchat |
 | PF Anderson @pfanderson@disabled.social @pfanderson RT @abrewi3010: A4 despite improvements, medical literacy is still a big issue in our country. Understanding the basic concept of a clinical trial is hard, misunderstanding breeds stress/lower participation #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T4: The #raredisease space is considerably smaller than many other #chronicillness(es). So smaller #patient #population. Which comes with *many* logistical hurdles. #Travel is harder for #wheelchair #patients. #patientchat |
| Christina Lizaso @btrfly12 T2: I think some of the most compelling information in my decision to get vaccine when I can was info about why this was able to go quickly - like lots of volunteers, lots of funding, and unfortunately lots of disease in cmty - plus that it build on prior research. #patientchat |
 | Mary Anne Sterling @SterlingHIT RT @vrulon: T4: T4: #ClinicalTrials issues surfaced by #COVID - ability to recruit diverse participants, convenience/distance, and diversity of investigators. More effort is needed to improve #trust especially with underserved communities. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T5: As far as #federal and #state #health #policy goes the @UMDF, as well as @EveryLifeOrg, have sent letters to @NatlGovsAssoc and the @WHCOVIDResponse. Hopefully, these will help prioritize 16-64-year-old #RareDisease #patients. #patientchat |
#patientchat content from Twitter.