#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 Chat @patientchat I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat -- Happy Friday! |
 | Carly Flumer (she/her) @carlyflumer Hey there! I’m Carly, an #AYA #thyca patient. 🦋 #patientchat |
 | ROHHADwarrior @ROHHAD_warrior @patientchat Sarah in Michigan #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Triage Cancer @TriageCancer Hello! We are a national nonprofit that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Honored to be here to learn and share! #patientchat #cancerrights |
 | Laurie Reed @LReedptadvocate @patientchat Hello everyone! My name is Laurie. I'm a patient advocate currently focused on exploring the role of advocacy and support during times of serious illness. Looking forward to today's discussion. #patientchat |
 | Lisa Sharp, MPH @lisasharpgrady Hi! I'm Lisa @DartmouthHCF. Looking forward to this #patientchat on #PatientAdvocacy |
| Patient Chat @patientchat @LReedsbooks Hi Laurie, happy Friday! #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 Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
 | Danielle Pardue @Actorielle Danielle here! Pt and CG advocate based in NC. Thrilled to be here today. 💚 #patientchat |
| Patient Chat @patientchat @lisasharpgrady @DartmouthHCF Hi Lisa, happy you could make it today! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat Happy Friday to you as well! #patientchat |
| Patient Chat @patientchat @carlyflumer Hi Carly, always happy to see you here! #patientchat |
| Patient Chat @patientchat Today's #patientchat is a “What is Patient Advocacy?” https://t.co/9sEknZKIZv |
| Patient Chat @patientchat @ROHHAD_warrior Hi Sarah! #patientchat |
| Patient Chat @patientchat @Zebrafishspoony Hi Peachy! Welcome to #patientchat! |
| Patient Chat @patientchat @stephp66 Hi Stephanie, hope all is well! #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat T1: What is the purpose of patient advocacy? #patientchat https://t.co/6fG1A8BUTr |
 | Patient Empowerment Network @power4patients T1: “Patient advocacy to me means learning as much as you can about the disease you are involved with so you can speak up with knowledge and confidence to your healthcare professionals” -Jeff Bushnell from our recent PEN-Powered Activity Guide https://t.co/YTvg7JcmjP #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: To educate patients and provide a voice for those who feel like they have none. #patientchat |
| Patient Chat @patientchat RT @power4patients: T1: T1: “Patient advocacy to me means learning as much as you can about the disease you are involved with so you can speak up with knowledge and confidence to your healthcare professionals” -Jeff Bushnell from our recent PEN-Powered Activity Guide https://t.co/YTvg7JcmjP #patientchat |
| Lisa Sharp, MPH @lisasharpgrady A1: supporting the patient to be knowledgeable and make good choices #patientchat |
 | Jeff Dubin @Power2Patient T1: I think an important part of patient advocacy is picking up some of the care coordination burden that often falls so heavily on patients and caregivers. #patientchat |
| Triage Cancer @TriageCancer T1 We think of #advocacy as the application of pressure and influence on the people and/or institutions that have the power to give you what you want. #Patientadvocacy can mean advocating for yourself, or a loved one, or for #patients in a certain community, and more.#patientchat |
 | Melissa VanHouten @melissarvh There can be many purposes, both @ the individual & community levels. At its core, personal advocacy means taking charge of your own health, to the extent possible, by being informed & actively engaged in your own care & communicating & pursuing your care goals. #PatientChat |
| Danielle Pardue @Actorielle RT @melissarvh: There can be many purposes, both @ the individual & community levels. At its core, personal advocacy means taking charge of your own health, to the extent possible, by being informed & actively engaged in your own care & communicating & pursuing your care goals. #PatientChat |
| Danielle Pardue @Actorielle RT @TriageCancer: T1 We think of #advocacy as the application of pressure and influence on the people and/or institutions that have the power to give you what you want. #Patientadvocacy can mean advocating for yourself, or a loved one, or for #patients in a certain community, and more.#patientchat |
| Danielle Pardue @Actorielle RT @Power2Patient: T1: T1: I think an important part of patient advocacy is picking up some of the care coordination burden that often falls so heavily on patients and caregivers. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1 Patient advocacy is about empowering patients' on how to navigate within the healthcare system and on how to ensure their voices are heard and their experiences are understood. #patientchat |
| Patient Chat @patientchat T2: In what unique ways do you advocate for yourself and/or others? #patientchat https://t.co/6UTLka2foN |
| Melissa VanHouten @melissarvh RT @LReedsbooks: @patientchat T1 Patient advocacy is about empowering patients' on how to navigate within the healthcare system and on how to ensure their voices are heard and their experiences are understood. #patientchat |
| Danielle Pardue @Actorielle T1 For me, it has meant: making sure my parents’ complex PMH is understood at every shift change of every hospitalization, and by every new specialist at every appt. It has also meant connecting other pts and CGs with helpful practical or supportive resources. #patientchat #hcsm |
| Carly Flumer (she/her) @carlyflumer T2: Through being a part of @power4patients’s amazing network manager team! Be sure to check us out! #patientchat |
| Triage Cancer @TriageCancer RT @patientchat: T2: T2: In what unique ways do you advocate for yourself and/or others? #patientchat https://t.co/6UTLka2foN |
| Danielle Pardue @Actorielle RT @patientchat: T2: T2: In what unique ways do you advocate for yourself and/or others? #patientchat https://t.co/6UTLka2foN |
| Jeff Dubin @Power2Patient T2: I locate specialists for my wife, try to vet them online, and sometimes do research on the latest advances in treatment. It's often hard to tell her something she doesn't know already but occasionally I succeed. 😀 #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2 I'm interested in amplifying patient narratives to effect change. As unique as each experience may be, there are also many commonalities so that one experience becomes many and can no longer be ignored. #patientchat |
| Melissa VanHouten @melissarvh Not sure this is unique, but I work 2 educate myself & others abt this illness, carefully research & evaluate current treatments while pressing 4 better treatment options, assert my rights while living up to my responsibilities, & try 2 empower others 2 do the same. #PatientChat |
| Patient Chat @patientchat T3: Have you noticed a growing emphasis on patient self-advocacy since the start of the pandemic? #patientchat https://t.co/YU3QBYZ72r |
| Triage Cancer @TriageCancer T2 We teach people the language of #healthinsurance, how to choose the right policy for their situation, and how to navigate their coverage. We also educate patients, caregivers, and HCPs about the #employment rights of those affected by #cancer, among other issues. #patientchat |
| Patient Chat @patientchat T3: Have you noticed a growing emphasis on patient self-advocacy since the start of the pandemic? #patientchat https://t.co/CewLP42iYz |
| Melissa VanHouten @melissarvh In the #Gastroparesis community, there is a general lack of awareness, so many of our advocacy efforts are centered on getting accurate information to patients, medical professionals, & others who impact our care. Better info = better choices & proper care. #PatientChat |
| Danielle Pardue @Actorielle T2 I’ve become the “VP of Communications” for my family when it comes to medical situations. When my mom was dx w #lungcancer, she asked me to filter info & only tell her what she absolutely had to know. Dad is similar w his multiple chronic dx. HCP calls come to me. #patientchat |
| Triage Cancer @TriageCancer RT @patientchat: T3: T3: Have you noticed a growing emphasis on patient self-advocacy since the start of the pandemic? #patientchat https://t.co/CewLP42iYz |
| Danielle Pardue @Actorielle RT @patientchat: T3: T3: Have you noticed a growing emphasis on patient self-advocacy since the start of the pandemic? #patientchat https://t.co/YU3QBYZ72r |
| Laurie Reed @LReedptadvocate @patientchat T3 It feels like more responsibility is getting dumped on the patient without necessarily providing the tools and resources to help patients navigate effectively - e.g. telehealth, self-monitoring tools etc... #patientchat |
| Danielle Pardue @Actorielle RT @TriageCancer: T2 We teach people the language of #healthinsurance, how to choose the right policy for their situation, and how to navigate their coverage. We also educate patients, caregivers, and HCPs about the #employment rights of those affected by #cancer, among other issues. #patientchat |
| Danielle Pardue @Actorielle RT @patientchat: T3: T3: Have you noticed a growing emphasis on patient self-advocacy since the start of the pandemic? #patientchat https://t.co/CewLP42iYz |
| Patient Chat @patientchat T4: Why is it important to build mental, emotional, and physical resilience while advocating for yourself and/or others? #patientchat https://t.co/z6LFh6SjNz |
| Danielle Pardue @Actorielle T2 It follows that logistics also fall to me. With that comes the responsibility to make sure tx plans work for our family situation, which requires incredibly long games of phone tag. #patientchat |
| Triage Cancer @TriageCancer RT @patientchat: T4: T4: Why is it important to build mental, emotional, and physical resilience while advocating for yourself and/or others? #patientchat https://t.co/z6LFh6SjNz |
| Danielle Pardue @Actorielle RT @LReedsbooks: @patientchat T3 It feels like more responsibility is getting dumped on the patient without necessarily providing the tools and resources to help patients navigate effectively - e.g. telehealth, self-monitoring tools etc... #patientchat |
| Danielle Pardue @Actorielle RT @patientchat: T4: T4: Why is it important to build mental, emotional, and physical resilience while advocating for yourself and/or others? #patientchat https://t.co/z6LFh6SjNz |
| Patient Empowerment Network @power4patients T4: PEN-Powered Activity Guide IV provides tips and resources for building resilience: https://t.co/t0gmvmQxVK #patientchat |
| Melissa VanHouten @melissarvh Not certain I've noticed this exactly, but I've seen a better overall public understanding of what chronic illness patients have endured - isolation, fear, uncertainty, & difficulty finding effective treatments & care. Hope this leads to greater, long-term empathy. #PatientChat |
| Danielle Pardue @Actorielle T4 Compassion fatigue is real. If I had a nickel for every time I could not possibly add another thing or person or issue to care about to my plate... 💔#patientchat |
| Jeff Dubin @Power2Patient T4: Because there are so many setbacks that you have to bounce back from. I'd love to hear about any resources to help with resilience. I walk and meditate sometimes but definitely need more! #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: Because no one can do it alone. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3 ... and the shame of it is that patients already struggle with undue burdens of getting a diagnosis, coordinating care, and understanding treatment options, to name a few, often without the expertise or emotional bandwidth. #patientchat |
| Jeff Dubin @Power2Patient @power4patients @power4patients You read my mind. Thank you so much for providing the activity guide. #patientchat |
| Patient Chat @patientchat RT @power4patients: T4: PEN-Powered Activity Guide IV provides tips and resources for building resilience: T4: PEN-Powered Activity Guide IV provides tips and resources for building resilience: https://t.co/t0gmvmQxVK #patientchat |
| Melissa VanHouten @melissarvh Chronic illness patients are in this for the long-term. The ability to "bounce back" mentally & physically is key. You must find ways to endure temporary setbacks & obstacles, fatigue, & frustration that are sure to come w/o losing sight of the big picture/goals. #PatientChat |
| Laurie Reed @LReedptadvocate @patientchat T4 Because it's hard work. Self-care is so important if you are advocating for yourself or on behalf of someone else but unfortunately, that's often the one thing that gets compromised. #patientchat |
| Lisa Sharp, MPH @lisasharpgrady RT @power4patients: T4: PEN-Powered Activity Guide IV provides tips and resources for building resilience: T4: PEN-Powered Activity Guide IV provides tips and resources for building resilience: https://t.co/t0gmvmQxVK #patientchat |
| Patient Chat @patientchat RT @melissarvh: Chronic illness patients are in this for the long-term. The ability to "bounce back" mentally & physically is key. You must find ways to endure temporary setbacks & obstacles, fatigue, & frustration that are sure to come w/o losing sight of the big picture/goals. #PatientChat |
| Patient Chat @patientchat RT @LReedsbooks: @patientchat T4 Because it's hard work. Self-care is so important if you are advocating for yourself or on behalf of someone else but unfortunately, that's often the one thing that gets compromised. #patientchat |
| Patient Chat @patientchat T5: How can you maintain knowledge of community services and resources in your disease area? #patientchat https://t.co/cTVerfVoim |
| Triage Cancer @TriageCancer T4 One way to reduce stress and increase bandwidth in the practice of #advocacy is to keep organized and have plans in place. https://t.co/vqYCgT8cE5 #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Follow advocacy and medical groups related to your disease, and join support groups where other patients may be more knowledgeable based on their experiences. #patientchat |
| Triage Cancer @TriageCancer RT @patientchat: T5: T5: How can you maintain knowledge of community services and resources in your disease area? #patientchat https://t.co/cTVerfVoim |
| Melissa VanHouten @melissarvh Disease-related nonprofits & medical assocs are good resources, as are online support grps. Local health depts & soc service agencies & fed sites such as NIH can also provide accurate, up-to-date info re available resources. Major medical univs can be helpful, too. #PatientChat |
| Laurie Reed @LReedptadvocate @patientchat T5 - Find your tribe, whether it's support groups, twitter chats, or professional medical organizations for your disease area or all three. #patientchat |
| Lisa Sharp, MPH @lisasharpgrady A5: Attend area-specific training, read journals, follow experts on social media #patientchat |
| Jeff Dubin @Power2Patient T5: Find an amazing newsletter like Cort Johnson's Health Rising for ME/CFS patients. #patientchat https://t.co/YKITKMBNRW |
| Danielle Pardue @Actorielle RT @TriageCancer: T4 One way to reduce stress and increase bandwidth in the practice of #advocacy is to keep organized and have plans in place. https://t.co/vqYCgT8cE5 #patientchat |
| Danielle Pardue @Actorielle RT @melissarvh: Disease-related nonprofits & medical assocs are good resources, as are online support grps. Local health depts & soc service agencies & fed sites such as NIH can also provide accurate, up-to-date info re available resources. Major medical univs can be helpful, too. #PatientChat |
| Danielle Pardue @Actorielle RT @carlyflumer: T5: T5: Follow advocacy and medical groups related to your disease, and join support groups where other patients may be more knowledgeable based on their experiences. #patientchat |
| Danielle Pardue @Actorielle @carlyflumer World-changing. And still such a new concept that most folks who aren’t full-time engaged in this work don’t realize that this is an option and/or the way to stay most current. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Danielle Pardue @Actorielle RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Laurie Reed @LReedptadvocate @patientchat CT - It's always good to hear from others who are navigating the patient experience and advocating to make healthcare better. Thank you everyone! #patientchat @patientchat |
| Triage Cancer @TriageCancer RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Melissa VanHouten @melissarvh There are many resources available to assist & empower you, as a patient. Take advantage of these to ensure you achieve the best health outcomes possible. You are your own best advocate. #PatientChat |
| Patient Chat @patientchat RT @melissarvh: There are many resources available to assist & empower you, as a patient. Take advantage of these to ensure you achieve the best health outcomes possible. You are your own best advocate. #PatientChat |
| Triage Cancer @TriageCancer CT It is an honor to be a member of the #patientadvocacy community! #patientchat |
| Danielle Pardue @Actorielle RT @melissarvh: There are many resources available to assist & empower you, as a patient. Take advantage of these to ensure you achieve the best health outcomes possible. You are your own best advocate. #PatientChat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime! |
| Danielle Pardue @Actorielle RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime! |
| Patient Chat @patientchat Don’t forget to check and share Activity Guide 6, “What is Patient Advocacy?” brining you bring you knowledge and resources to advocate, solidify your path to empowerment, eat well, and help you de-stress. #patientchat https://t.co/Vthg5RUv38 |
| Triage Cancer @TriageCancer Thank you for an engaging and enlightening chat, @patientchat! Happy Friday! #patientchat |
| Patient Chat @patientchat Join us for a "Collaboration: Connecting and Empowering Patient Communities" Empowered #patientchat on Friday, May 14th at @ 10 AM PT| 1 PM ET with Amanda, @LAlupusLady! https://t.co/TtJS8IXdU7 https://t.co/iKIh8q4oEe |
| Patient Chat @patientchat @TriageCancer Happy Friday! 😊 thanks for joining! #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat Happy Friday all! |
 | Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat @power4patients I’m sure this was an awesome chat, sorry I missed it. But we appreciate you for keeping healthy informed dialogue going for #patients 👏🏾🍋💜 #patientadvocacy #patientchat |
| Danielle Pardue @Actorielle Thank you, @patientchat! #patientchat 💚💚💚 |
 | John Novack @J2Novack RT @patientchat: Join us for a "Collaboration: Join us for a "Collaboration: Connecting and Empowering Patient Communities" Empowered #patientchat on Friday, May 14th at @ 10 AM PT| 1 PM ET with Amanda, @LAlupusLady! https://t.co/TtJS8IXdU7 https://t.co/iKIh8q4oEe |
 | Adam Johnson - DadVocate @RareDiseaseDad @LReedsbooks @patientchat Sounds like I missed an amazing #patientchat! Today, my advocacy is for myself. So many appointments, calls, insurance discussions, jumping through hoops, etc. & it continues today. Perseverance & resilience is absolutely necessary, yet it’s exhausting! Hope everyone is well! |
 | Amanda G @LAlupusLady Can’t wait for @patientchat on May 14th #LupusWithFlair sharing on #patientchat |
#patientchat content from Twitter.