#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Empowerment Network @power4patients RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/KzdaGyVudu |
 | 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 |
 | Diverse Health Hub @DHealthhub RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/KzdaGyVudu |
| Diverse Health Hub @DHealthhub RT @StephChuang: Join me in one hour for my first ever #patientchat, which is all about empowering patients of every kind. 💪 Would love to hear your voices! See you soon 👋 SO: @power4patients @patientchat #PatientCare #patientadvocate |
| Patient Chat @patientchat Guest moderating today’s #patientchat is Nykema from @DHealthhub |
 | The Patient Story @Patient_Story Hey everyone! I'm Stephanie. So happy to be here. A little about me. I’m a former TV news journalist who has always loved storytelling. What kind of stories changed after I went through treatment for non-Hodgkin lymphoma (2017). #patientchat |
| Patient Chat @patientchat Please note that Notifications/DMs will be checked and followed up on by @power4patients in the days following the chat. #patientchat |
| The Patient Story @Patient_Story Started https://t.co/w8tXXnMCFD to help other people, patients and caregivers, get human answers because I remember feeling so isolated. Thanks so much to @patientchat and @power4patients for the invite - excited to get #patientchat started! |
 | Carly Flumer (she/her) @carlyflumer Hey there! I’m Carly, an #AYA #thyca patient. 🦋 #patientchat |
| Patient Chat @patientchat Hi #patientchat! My name is Nykema from @DHealthhub, I am honored and excited to be guest moderating today's chat 😊 |
| Patient Chat @patientchat RT @Patient_Story: Started https://t.co/w8tXXnMCFD to help other people, patients and caregivers, get human answers because I remember feeling so isolated. Thanks so much to @patientchat and @power4patients for the invite - excited to get #patientchat started! |
| Patient Chat @patientchat Excited to have Stephanie Chuang founder of the @Patient_Story here as today’s #patientchat guest! |
| Diverse Health Hub @DHealthhub Exciting!! |
| Patient Chat @patientchat @Patient_Story is a community of cancer patient and caregiver voices with one goal: humanize every diagnosis. #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! Excited to join from Boston. I’m a @TEDxNatick speaker and Co-Founder of @_OurOdyssey_ 😊 #patientchat |
 | Mary Leer @vleer_ny Trying to get on to the #patientchat |
 | Stephanie Chuang @StephChuang Woohoo, it's starting! 👇 Let's go. #PatientCare #patientadvocate #patients #patientsafety #stories #empowerment |
| Patient Chat @patientchat Patient stories are put in FAQ-format with treatment timelines to help newly-diagnosed patients and caregivers better understand what they may be dealing with during and after treatment. Learn more: https://t.co/XGQL5aleF1. #patientchat |
| Seth Rotberg @Srotberg15 @carlyflumer Hi Carly! Always great to see you on here. #patientchat |
| Patient Empowerment Network @power4patients Hi #patientchat! It's Andrea joining from Boulder, CO. How did everyone on the East Coast fare with #HurricaneIsaias2020? Keeping you all in my thoughts! |
 | Laurie Reed @LReedptadvocate @patientchat Hello! Laurie, patient advocate - looking forward to the discussion today! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Patient stories are put in FAQ-format with treatment timelines to help newly-diagnosed patients and caregivers better understand what they may be dealing with during and after treatment. Learn more: https://t.co/XGQL5aleF1. #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Patient Empowerment Network @power4patients RT @Patient_Story: Hey everyone! I'm Stephanie. So happy to be here. A little about me. I’m a former TV news journalist who has always loved storytelling. What kind of stories changed after I went through treatment for non-Hodgkin lymphoma (2017). #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 |
 | Kevin Freiert @K_SalemOaks Hello, Kevin from CT here. We work with patient orgs and disease foundations to inform their communites about pharma R&D. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat |
 | Allison Rosen, MS @ARosen380 My name is Allison Rosen and I am a young adult #colorectalcancer #survivor & #AYA #advocate in Houston, Texas. I work in cancer #healthdisparities. I am also a policy & research advocate working to improve care for the young adult population. #patientchat |
| Seth Rotberg @Srotberg15 @K_SalemOaks Kevin! Great to see you here. Hope you’re doing well. #patientchat |
| Kevin Freiert @K_SalemOaks @vleer_ny You are ON #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Best Practices for Sharing Your Patient Story with special guest @Patient_Story https://t.co/rLXidRVO7a |
| Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Best Practices for Sharing Your Patient Story with special guest @Patient_Story https://t.co/rLXidRVO7a |
| Kevin Freiert @K_SalemOaks @Srotberg15 Ditto. Things have been stange but going well #patientchat |
| Diverse Health Hub @DHealthhub Hello #patientchat! It's Tamara joining from Seattle, Washington! |
 | Lisa Davis Budzinski @lisadbudzinski RT @patientchat: Today's #patientchat topic is Best Practices for Sharing Your Patient Story with special guest @Patient_Story https://t.co/rLXidRVO7a |
 | AllStripes @_allstripes @patientchat Hello everyone! We're excited to join today's #patientchat from San Francisco, CA! |
| The Patient Story @Patient_Story Just had the pleasure of interviewing Allison last week for https://t.co/w8tXXnMCFD! We will make sure to let everyone know about her story when it's up :) Inspired by her dedication to patients. #patientadvocate #PatientCare |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Mary Leer @vleer_ny #patientchat excited to join, first twitter chat, so will try to get the hang of this (Mary from UWS, NYC) |
| Kevin Freiert @K_SalemOaks @rdmd @patientchat Glad to hear you are working with @SLC6A1_Mom on a registry. #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Currently getting injections for right should pain. New symptom developing around my neck surgery scares. Never ending chronic story. #patientchat |
| Patient Chat @patientchat T1: Why do you think it is important to share your patient story? #patientchat https://t.co/wG4bbBfYsc |
| Lisa Davis Budzinski @lisadbudzinski #patientchat https://t.co/1M1bwyuRBC |
 | MyVictory Wellness @MyVictory_Well RT @patientchat: Today's #patientchat topic is Best Practices for Sharing Your Patient Story with special guest @Patient_Story https://t.co/rLXidRVO7a |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Hi everyone! It's been a while and it's nice to be back. I'm Christie, a public health professional and founder of https://t.co/vm0fw4fZSv #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: Why do you think it is important to share your patient story? #patientchat https://t.co/wG4bbBfYsc |
| Kevin Freiert @K_SalemOaks @lisadbudzinski Hey there Lisda! #patientchat |
| Patient Empowerment Network @power4patients @vleer_ny Welcome Mary! We're so glad you're here. #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Everyone has their own story that is unique to them. Hearing others share mitigates the feeling of being alone and validates one’s feelings. #patientchat |
| The Patient Story @Patient_Story T1: I was lying in the hospital bed, just wanting to just get it out. It was cathartic to put everything into words.I eventually decided to share what I journaled in a public blog. I surprised myself because being vulnerable with strangers was not in my wheelhouse! #patientchat |
| The Patient Story @Patient_Story T1: I believe this is such a personal decision and there’s no right or wrong here. I can start by speaking for myself on why I chose to be vocal about my cancer, despite being an extremely private person my whole life. #patientchat |
| The Patient Story @Patient_Story T1: Then I remember feeling hopeful that perhaps others, maybe not cancer patients at the time, but anyone reading my blog would feel less lonely knowing what I was going through. #patientchat |
| The Patient Story @Patient_Story T1: On top of everything, and I’ve heard this from the ~150 former and current patients we’ve interviewed, there is something so powerful about knowing how just sharing your story will help countless* people out there dealing with a new diagnosis. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T1: T1: Everyone has their own story that is unique to them. Hearing others share mitigates the feeling of being alone and validates one’s feelings. #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp A1: Because I have a #RareDisease and rare brain tumors. We really aren’t that rare after all! #PatientChat #btsm #pten |
| Diverse Health Hub @DHealthhub RT @Patient_Story: T1: T1: I believe this is such a personal decision and there’s no right or wrong here. I can start by speaking for myself on why I chose to be vocal about my cancer, despite being an extremely private person my whole life. #patientchat |
| Kevin Freiert @K_SalemOaks T1: To connect with people. Sharing = vulnerability --> trust --> more authentic relationships #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland |
| Alan Brewington @abrewi3010 A1 patient stories make medical school/academia real, alive. Without our patient stories it’s just book knowledge. #patientchat |
| Diverse Health Hub @DHealthhub RT @Patient_Story: T1: T1: On top of everything, and I’ve heard this from the ~150 former and current patients we’ve interviewed, there is something so powerful about knowing how just sharing your story will help countless* people out there dealing with a new diagnosis. #patientchat |
| The Patient Story @Patient_Story T1: You hear “turning lemons into lemonade.”This was my version of that. It started with blogging about my own cancer roller coaster. My feeling of life’s purpose exploded by starting https://t.co/w8tXXnMCFD to share other people’s stories. It’s been such a blessing.#patientchat |
| Lisa Davis Budzinski @lisadbudzinski T1 It’s essential for others to know they aren’t alone✨ Your story helps others to understand & hopefully gives them confidence & strength #patientchat |
 | DenetraHampton @ProducerNurse A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| Patient Chat @patientchat RT @ProducerNurse: A1: A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A1: Telling your story can help a doctor to understand the context of what you are experiencing, and help with compassion and empathy. #patientchat |
| MyVictory Wellness @MyVictory_Well Hey there - #myvictory here. First time joining a #twitterchat but looking forward to learning from you all #patientchat |
| Kevin Freiert @K_SalemOaks A1: There are lessons in our stories that others can benefit from. #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland |
 | Melissa VanHouten @melissarvh It gives others a glimpse of what your illness is truly like, behind the scenes, apart from the textbook. It also helps connect others in an emotional way that reading a disease synopsis does not. #PatientChat |
| AllStripes @_allstripes A1: Sharing your story as a #raredisease patient can help friends, family and community members understand your personal experience, plus raise awareness which can help others find a diagnosis more quickly and rally support for research. #patientchat |
 | Christina Lizaso @btrfly12 RT @patientchat: T1: T1: Why do you think it is important to share your patient story? #patientchat https://t.co/wG4bbBfYsc |
 | Keith McArthur 🇺🇦 @keithmcarthur Hey all! I'm a rare dad from Toronto, Canada. I told the story of my son Bryson's GRIN Disorder and our search for treatments in the podcast series Unlocking Bryson's Brain #patientchat Here's the video preview. https://t.co/FnwSAauVWv |
| Seth Rotberg @Srotberg15 A1 I’m a believer that everyone has a story to share and that you don’t need a big stage to do so. Each of our stories provides value to others and you never know who you might inspire from hearing your story. #patientchat |
| Christina Lizaso @btrfly12 RT @Patient_Story: T1: T1: I believe this is such a personal decision and there’s no right or wrong here. I can start by speaking for myself on why I chose to be vocal about my cancer, despite being an extremely private person my whole life. #patientchat |
| Alan Brewington @abrewi3010 A1 patients stories is how the care in healthcare is developed. Patient stories are the action in engagement. #patientchat |
| Kevin Freiert @K_SalemOaks @MyVictory_Well Welcome! #patientchat |
 | Perplexed Libtard Beaver 🦫 @LibtardBeaver RT @keithmcarthur: Hey all! I'm a rare dad from Toronto, Canada. I told the story of my son Bryson's GRIN Disorder and our search for treatments in the podcast series Unlocking Bryson's Brain #patientchat Here's the video preview. https://t.co/FnwSAauVWv |
| Seth Rotberg @Srotberg15 RT @abrewi3010: A1 patient stories make medical school/academia real, alive. Without our patient stories it’s just book knowledge. #patientchat |
 | J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: T1: T1: Why do you think it is important to share your patient story? #patientchat https://t.co/wG4bbBfYsc |
| Allison Rosen, MS @ARosen380 A1: The power of the patient story is huge, someone else's story helped me during my #cancer journey. By sharing mine it has not only been theraputic for me but it is worth it when someone tells me they got their cancer #screening after listening to my story. #patientchat |
| Kevin Freiert @K_SalemOaks A1: To spread hope. #patientchat #pinksocks |
| AllStripes @_allstripes RT @lisadbudzinski: T1 It’s essential for others to know they aren’t alone✨ Your story helps others to understand & hopefully gives them confidence & strength #patientchat |
| MyVictory Wellness @MyVictory_Well Sharing your story is not only therapeutic for the self, but you never know who you help by sharing your experiences. #patientchat |
 | Annette McKinnon @anetto T1 Sharing your patient story is one method of getting involved with health care systems/organizations. Can be important first step for people who find the health system intimidating and can help you to gain comfort in speaking in front of a group.(if you’re ready) #patientChat |
| Patient Empowerment Network @power4patients @patientchat From our Empowered! blog by the amazing @JBBC: https://t.co/naQF4dt3bX #patientchat |
| AllStripes @_allstripes RT @Srotberg15: A1 I’m a believer that everyone has a story to share and that you don’t need a big stage to do so. Each of our stories provides value to others and you never know who you might inspire from hearing your story. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @K_SalemOaks Kevin!!! Remember when we could meet IRL?!?! #patientchat https://t.co/Hlrs7gjzIB |
| Diverse Health Hub @DHealthhub RT @carlyflumer: T1: T1: Everyone has their own story that is unique to them. Hearing others share mitigates the feeling of being alone and validates one’s feelings. #patientchat |
| AllStripes @_allstripes RT @abrewi3010: A1 patient stories make medical school/academia real, alive. Without our patient stories it’s just book knowledge. #patientchat |
| Patient Empowerment Network @power4patients RT @lisadbudzinski: T1 It’s essential for others to know they aren’t alone✨ Your story helps others to understand & hopefully gives them confidence & strength #patientchat |
| Allison Rosen, MS @ARosen380 A1: Your story has the potential for others to realize they are not ALONE! #patientchat |
| Seth Rotberg @Srotberg15 @LaurenCTesta Hi Lauren! It’s great to see you on this and hear about your passion to work in gene therapy. We need more people like you to help advance medical research. #patientchat |
| Patient Empowerment Network @power4patients RT @Crohnoid: A1: |
| Mary Leer @vleer_ny T1: without advocating for myself (seeking 2nd opinion from res hospitals), a malignancy would have been missed (false negative biopsy). Thru advocacy and self ed, others have told me to share my story b/c other women (I had bilateral breast cancer)could learn lots from it |
| Patient Empowerment Network @power4patients RT @rdmd: A1: A1: Sharing your story as a #raredisease patient can help friends, family and community members understand your personal experience, plus raise awareness which can help others find a diagnosis more quickly and rally support for research. #patientchat |
| Patient Empowerment Network @power4patients RT @ARosen380: A1: A1: Your story has the potential for others to realize they are not ALONE! #patientchat |
| Carly Flumer (she/her) @carlyflumer @ARosen380 Yes! Sharing your story is the best therapy. ❤️ #patientchat |
| Patient Empowerment Network @power4patients RT @Srotberg15: A1 I’m a believer that everyone has a story to share and that you don’t need a big stage to do so. Each of our stories provides value to others and you never know who you might inspire from hearing your story. #patientchat |
| Allison Rosen, MS @ARosen380 @Crohnoid I couldn't agree more, this is the ultimate reward in sharing our stories #patientchat |
| MyVictory Wellness @MyVictory_Well RT @Srotberg15: A1 I’m a believer that everyone has a story to share and that you don’t need a big stage to do so. Each of our stories provides value to others and you never know who you might inspire from hearing your story. #patientchat |
| Diverse Health Hub @DHealthhub A1: Patients learning from each other can have a profound impact on care and create a shared sense of meaning and community @patientchat |
| Alan Brewington @abrewi3010 A1 patient stories are the blanket or comforter when a cry is needed and inspiration when we are climbing the day’s challenge. #patientchat |
| AllStripes @_allstripes RT @ProducerNurse: A1: A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| Lisa Davis Budzinski @lisadbudzinski @anetto Hi Annette! 💞 #patientchat |
 | RARE’ingToGo 🧡🦓💚 @Dphillips2112 RT @lisadbudzinski: T1 It’s essential for others to know they aren’t alone✨ Your story helps others to understand & hopefully gives them confidence & strength #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @power4patients: @patientchat From our Empowered! blog by the amazing @JBBC: @patientchat From our Empowered! blog by the amazing @JBBC: https://t.co/naQF4dt3bX #patientchat |
| Seth Rotberg @Srotberg15 @cvhconsulting I think this is my first time learning about this program. Let’s find time to connect since I’m interested in learning more and how to help young adults with navigating the doctor’s office. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up… #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1 - In sharing the patient story, there is a realization that you are not alone. Furthermore, your story can help others who are navigating the patient journey. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @Crohnoid Such a wonderful feeling! #patientchat |
| Patient Chat @patientchat T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat https://t.co/LeI3wSqpo3 |
 | Spencer Health Solutions @spencerhealth With #HIPPA regulations we must rely on patients to share their stories and experiences, both good and bad. #patientchat |
| MyVictory Wellness @MyVictory_Well @abrewi3010 This is a beautiful sentiment, Alan. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2a: T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat https://t.co/LeI3wSqpo3 |
| Stephanie Chuang @StephChuang RT @Patient_Story: T1: T1: You hear “turning lemons into lemonade.”This was my version of that. It started with blogging about my own cancer roller coaster. My feeling of life’s purpose exploded by starting https://t.co/w8tXXnMCFD to share other people’s stories. It’s been such a blessing.#patientchat |
| Kevin Freiert @K_SalemOaks I love how so many of us see both sides of sharing. We benefit, others benefit. Sharing is good (and powerful) all the time. #patienchat. |
| Kevin Freiert @K_SalemOaks @abrewi3010 Very poetic. #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: Some in-person, but through social media for the majority. I was really scared to do that at first, as I wasn’t sure about the reactions. I received *so much* support, which led me down the road to #advocacy for #oncology. #patientchat |
| Alan Brewington @abrewi3010 @MyVictory_Well Thank you very much! #patientchat |
| Keith McArthur 🇺🇦 @keithmcarthur A1: It's important for us to tell Bryson's story because it helps raise awareness for GRIN Disorder, helps us to connect with other rare families so we feel less alone + helps us attract researchers and clinicians. And it can even help us to raise funds for @curegrin #patientchat |
| Kevin Freiert @K_SalemOaks A2a and b. It was the night before Thanksgiving when I returned from the oncologist. My family was there. They are part of the story too. #patientchat #pinksocks |
| Diverse Health Hub @DHealthhub RT @carlyflumer: T2: T2: Some in-person, but through social media for the majority. I was really scared to do that at first, as I wasn’t sure about the reactions. I received *so much* support, which led me down the road to #advocacy for #oncology. #patientchat |
| Patient Empowerment Network @power4patients RT @RarePOV: |
| Alan Brewington @abrewi3010 @K_SalemOaks Thanks! #patientchat |
| Spencer Health Solutions @spencerhealth RT @RarePOV: |
| AllStripes @_allstripes A2a: @GlobalGenes has a FREE toolkit on How to Discuss Genetic Disease with Your Loved Ones which can help #raredisease patients and their families understand genetics in order to have informed conversations and answer questions: https://t.co/zf339384Ht #patientchat |
 | Leah Bush @LeahNBush T1: Sharing your story can help others make sense of their symptoms & diagnosis. It can also help find similarities & differences in patients that might be important for treatment decisions. #patientchat |
| The Patient Story @Patient_Story A2a: My diagnosis feels like it was yesterday and an eternity ago. I learned I had cancer over the phone, unfortunately (this happens more often than people realize). I was sandwiched between my husband and my sister. We all burst into tears while I was on the phone. #patientchat |
| The Patient Story @Patient_Story A2a: How to share the news with my parents was so difficult. Thankfully, they were only about 45 minutes away. I decided to call my dad because I felt he could handle the news better. I was right. He jumped into problem-solving mode right away. #patientchat |
| The Patient Story @Patient_Story A2a: I let him tell my mom. I couldn’t handle breaking the news to her because I knew she’d be instantly emotional. Broke my heart. When my parents met me at the hospital, I remember my mom wasn’t crying and I knew she was trying to hold it together for my sake. #patientchat |
| The Patient Story @Patient_Story A2a: I was thrust into the chaos of jumping from tests to scans to biopsies. At the same time, I was trying to figure out where does this (cancer) fit in my life? Do I tell people? Do I keep it private? I can’t remember all the reasons why I decided to do this... #patientchat |
| The Patient Story @Patient_Story A2a: ...but I decided to post an update on Facebook. It was a bit of a blur. It felt like ripping the band-aid off. I didn’t have control over having cancer, but I did have control over how I dealt with it. I felt it’d be exhausting to treat it like a “dirty secret.” #patientchat |
| AllStripes @_allstripes RT @RarePOV: |
| The Patient Story @Patient_Story A2a: In hindsight, I’m glad I did it. I didn’t post in hopes of getting support. I did it for me (& without really thinking about it). But the response was incredible. From close friends to people I hadn’t spoken with in two decades, the love I got was rejuvenating. #patientchat |
| The Patient Story @Patient_Story A2a: In the context of storytelling, I think the real driver behind why people share stories is love and connection. This is the true power of storytelling. #patientchat ❤️💯 |
| Spencer Health Solutions @spencerhealth RT @rdmd: A2a: A2a: @GlobalGenes has a FREE toolkit on How to Discuss Genetic Disease with Your Loved Ones which can help #raredisease patients and their families understand genetics in order to have informed conversations and answer questions: https://t.co/zf339384Ht #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T2a Depending on the person; it was either gently & with others straight to the point✨ #patientchat |
| Annette McKinnon @anetto T1 A story that illustrates health issues faced by patients and caregivers is easy to remember. We hope decisions-makers in healthcare will think of these indelible memories when it comes time to make choices. #patientChat |
| Patient Empowerment Network @power4patients RT @rdmd: A2a: A2a: @GlobalGenes has a FREE toolkit on How to Discuss Genetic Disease with Your Loved Ones which can help #raredisease patients and their families understand genetics in order to have informed conversations and answer questions: https://t.co/zf339384Ht #patientchat |
| Patient Chat @patientchat Topic 2b (T2b:) coming up… #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: T2a: T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat https://t.co/LeI3wSqpo3 |
 | Michelle Vicari @Eggface @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| Alan Brewington @abrewi3010 A2 I will let you know if I ever finish getting diagnoses. The best I can do is tell my story to my family/friends for that moment. Part of being chronic is flexibility. #patientchat |
| Allison Rosen, MS @ARosen380 A2a: I didnt have much of a choice to share my #cancer diagnosis with my close family b/c I knew I would need their support during my journey. For others there was an email chain and blog I started to update friends and family. #patientchat |
| Patient Empowerment Network @power4patients RT @Eggface: @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| Mary Leer @vleer_ny @Patient_Story T1: have been meaning to start a blog, b/c told by many friends and family that what I've learned is necessary to get broader circulation #patientchat |
| Kevin Freiert @K_SalemOaks So important. "Depending on the person..." There is no one way to tell the story. It is not a pitch! #patientchat |
 | Voices for Affordable Health @OurHealthVoices RT @HealthSparq: Get honest feedback from patients about their health plan, providers & the #healthcare system overall. Join us on Tuesday, Augsut 11 for a live discussion & learn how to help improve health care. Register now at: https://t.co/NY9ApCSxlo #WTFix #HITsm #hcldr #patientchat https://t.co/op2Vuz7jwU |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph RT @Eggface: @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| Spencer Health Solutions @spencerhealth Often the conversation starts with "I'm OK but..." Set your friends/family at ease before you launch into the (usually) long and complicated story. #patientchat |
| Annette McKinnon @anetto T1 The stories patients tell remain in memories and have the benefit of being real and relatable. After time passes even though the circumstances may be forgotten the stories remain. #patientChat |
| Melissa VanHouten @melissarvh I had no problem sharing my diagnosis. But no one, including me, had ever heard of #Gastroparesis so I had to research it & find appropriate ways of explaining its causes, symptoms, complications, & treatments (or lack thereof). We are all still learning how to cope. #PatientChat |
| Patient Chat @patientchat T2b: If you have children, how did you approach telling them? #patientchat https://t.co/00FXMDDYvz |
| Allison Rosen, MS @ARosen380 @K_SalemOaks True words #patientchat |
 | Rachel Martens ♿️ (she/her) @RaeofSunshine79 T1: Late to #patientchat today! Patient stories are a form of knowledge translation and brokerage for important, complex concepts. As Brene Brown says, it's data with a soul. |
| Patient Empowerment Network @power4patients RT @patientchat: T2b: T2b: If you have children, how did you approach telling them? #patientchat https://t.co/00FXMDDYvz |
| Leah Bush @LeahNBush RT @Eggface: @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| Spencer Health Solutions @spencerhealth It's just like explaining the "facts of life." Exactly what they need to know to understand (and no more), at an age-appropriate level. #patientchat |
 | IFTIKHAR MD ZIA @thisiszia RT @ProducerNurse: A1: A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| The Patient Story @Patient_Story T2a:Great point. Depends on "audience" because all relationships are different. What I encourage is for people to put themselves first. Often, patients say they worried about other people's responses. It's okay to preserve your own bandwidth-do what's right for YOU! #patientchat |
| AllStripes @_allstripes RT @Eggface: @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| Allison Rosen, MS @ARosen380 @spencerhealth My Mom told me.. "I wish it was me.." I had to assure her that I was strong enough to handle #cancer but, I would need her support. Often time we have to support others as we tell them about our diagnosis #patientchat |
| Kevin Freiert @K_SalemOaks I had a great conversation on this yesterday. N of One, the N means *Name* #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 T2a: #patientchat I was probably more laid back than most people expected me to be. I'm used to the idea that the world is complicated. Health is complicated. Many of the people around me, not so much. It was a lot of emotional labor catching people up because of this. |
| The Patient Story @Patient_Story A2b: Even with young children, these parents said their kids could tell if there was no explanation. Their feelings are that kids feel more fear if they feel things are being kept from them. #patientchat |
| The Patient Story @Patient_Story A2b: How honest depended on the age. For very young kids, maybe toddlers, it was just enough to explain for the parent’s absence. For example: “Mommy is sick. She will be okay but she has to go to the doctor’s so you’ll go to your grandparents’ house a little more.” #patientchat |
| The Patient Story @Patient_Story A2b: I didn’t have kids then, but we have dozens of our TPS community members who did have kids when they were diagnosed. Again, these are all highly personal decisions. But most of them, if not all, said they tried to be straightforward with their kids. #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: T2a: T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat https://t.co/LeI3wSqpo3 |
| Patient Empowerment Network @power4patients RT @ARosen380: @spencerhealth My Mom told me.. "I wish it was me.." I had to assure her that I was strong enough to handle #cancer but, I would need her support. Often time we have to support others as we tell them about our diagnosis #patientchat |
| MyVictory Wellness @MyVictory_Well @spencerhealth A great way of explaining that. Sharing the facts in a way that you feel comfortable and the person receiving the information can understand - the core of #healthliteracy! #patientchat |
 | burtrosen 🟦 @burtrosen RT @HealthSparq: Get honest feedback from patients about their health plan, providers & the #healthcare system overall. Join us on Tuesday, Augsut 11 for a live discussion & learn how to help improve health care. Register now at: https://t.co/NY9ApCSxlo #WTFix #HITsm #hcldr #patientchat https://t.co/op2Vuz7jwU |
| Patient Empowerment Network @power4patients RT @Patient_Story: A2b: A2b: I didn’t have kids then, but we have dozens of our TPS community members who did have kids when they were diagnosed. Again, these are all highly personal decisions. But most of them, if not all, said they tried to be straightforward with their kids. #patientchat |
 | Patient Advisors @PatientAdvisors We created some tips for patients being asked to tell their stories, and for those who ask us. Presented at #HealthQualityTransform 5 Tips for requesting stories from patients and caregivers 5 Tips for responding to a request for your story https://t.co/sf2OSAvPmy #PatientChat |
| Melissa VanHouten @melissarvh This was a bit more difficult, as my daughter was very young. She learned more through observation & experience than through any "talk" I had with her. She has had to learn to cope w/the hardships of this illness, as have we all. I hate that it affects my loved ones. #PatientChat |
| Diverse Health Hub @DHealthhub RT @Patient_Story: A2b: A2b: I didn’t have kids then, but we have dozens of our TPS community members who did have kids when they were diagnosed. Again, these are all highly personal decisions. But most of them, if not all, said they tried to be straightforward with their kids. #patientchat |
| Keith McArthur 🇺🇦 @keithmcarthur A2: It was hard to tell people about Bryson's disease because we knew so little. It took 10 years to get a diagnosis. We told family and close friends in person but many learned through social media posts. #patientchat (1/2) |
| Keith McArthur 🇺🇦 @keithmcarthur T2: For my kidney disease I didn't tell anyone other than family for 15 years. When it finally got so serious that I was getting sick, I started talking about it more, partly because I hoped someone might be willing to donate a kidney. Grateful my sister did! #patientchat (2/2) |
| Stephanie Chuang @StephChuang RT @Patient_Story: A2a: A2a: In the context of storytelling, I think the real driver behind why people share stories is love and connection. This is the true power of storytelling. #patientchat ❤️💯 |
| Diverse Health Hub @DHealthhub RT @keithmcarthur: T2: T2: For my kidney disease I didn't tell anyone other than family for 15 years. When it finally got so serious that I was getting sick, I started talking about it more, partly because I hoped someone might be willing to donate a kidney. Grateful my sister did! #patientchat (2/2) |
 | metaMartha @Martha__Carlson T2b. I had teens and pre teens. We told them individually.?the difficult part was figuring out ongoing sharing of info w/them during this important stage of their lives when separation & friendships fought against fear and love for me #patientchat |
| Seth Rotberg @Srotberg15 RT @ARosen380: @spencerhealth My Mom told me.. "I wish it was me.." I had to assure her that I was strong enough to handle #cancer but, I would need her support. Often time we have to support others as we tell them about our diagnosis #patientchat |
 | rosie dosie @rosiedosietalk Same here — My husband was diagnosed and we couldn’t pronounce it let alone deal with it -THANK YOU MELISSA— you are a Warrior💝♥️‼️ |
| Kevin Freiert @K_SalemOaks @keithmcarthur I often work with rare disease communities. I wonder if the rarity creates an even bigger need (and an opening) to share. #patientchat |
| Allison Rosen, MS @ARosen380 @PatientAdvisors Thanks for sharing this, I will definitely read it! #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up… #patientchat |
| Diverse Health Hub @DHealthhub RT @Eggface: @patientchat Sharing your story puts names, faces, real people... to the data and statistics. #patientchat |
| The Patient Story @Patient_Story @K_SalemOaks @keithmcarthur I think this is very true! This is one instance I am especially glad for social media. Helps people find one another, especially those who feel more alone. #theyarenot #patientchat |
| Keith McArthur 🇺🇦 @keithmcarthur @K_SalemOaks Yes, I think so. Finding a community was one of the most important aspects of getting a diagnosis. We're now connected to hundreds of people around the world. #patientchat |
 | Moore On Health™ @MooreOnHealth RT @ProducerNurse: A1: A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| Patient Chat @patientchat T3: How did you decide when the right time was to share your story? #patientchat https://t.co/4ybKxStFWi |
| Allison Rosen, MS @ARosen380 @Patient_Story Thank you so much, it was such a pleasure talking to you @Patient_Story ! #patientchat |
| The Patient Story @Patient_Story @VMSFMom @keithmcarthur Just read your bio. You are incredible and I am sending you big hugs from California. ❤️ #patientchat |
 | 12Alice Lee @PepperPell RT @rdmd: A1: A1: Sharing your story as a #raredisease patient can help friends, family and community members understand your personal experience, plus raise awareness which can help others find a diagnosis more quickly and rally support for research. #patientchat |
 | Charlotte @MooreCharlotteG RT @ProducerNurse: A1: A1: Stories are invaluable to learning. They not only empower the people involved, but they empower science..@patientchat #patientchat #storyteller |
| Laurie Reed @LReedptadvocate @patientchat T2b - Honesty is incredibly important. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: How did you decide when the right time was to share your story? #patientchat https://t.co/4ybKxStFWi |
| The Patient Story @Patient_Story A3: (Can you tell how much I love sharing people’s stories!) That made it easy to get a blog up. I just used that site (https://t.co/W93mY3Vvji) to write about my cancer “journey.” It’s still up as my blog today. #patientchat |
| The Patient Story @Patient_Story A3: It was very early on. The first week in the hospital was one of the worst times because there were way more questions than answers. I think I felt the need to exert some “control” (the other c word!) because I felt powerless in every other way. #patientchat |
| The Patient Story @Patient_Story A3: I made a pretty abrupt decision to share the diagnosis (via social media). The blog came soon after. Literally the week of the diagnosis, I had just started a website for storytelling to connect people across different walks of life as a side gig to my news job. #patientchat |
| Diverse Health Hub @DHealthhub RT @Patient_Story: A3: A3: I made a pretty abrupt decision to share the diagnosis (via social media). The blog came soon after. Literally the week of the diagnosis, I had just started a website for storytelling to connect people across different walks of life as a side gig to my news job. #patientchat |
| Allison Rosen, MS @ARosen380 A3: Truthfully it was when someone first asked me if I would be willing to share for a group of medical students. It was so empowering and I got some much positive feedback, that I started sharing more and more!#patientchat |
| Alan Brewington @abrewi3010 A2b I’m my own best child. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: I don’t think there is a “right” time to share your story, nor is there a “right” amount of info you have to share. You share what you want when you’re comfortable. And when you do, you’ll open yourself up to a world of supporters and find your 2nd family. 🙂 #patientchat |
| Melissa VanHouten @melissarvh After seeing the stories of such incredible struggle in my #Gastroparesis support groups, I knew I could not remain silent. My own story was really all I had to advocate with at the time - and so I shared it. And over time, I began to share their stories as well. #PatientChat |
| Kevin Freiert @K_SalemOaks A3/1: Interesting question. I don't think I ever *decided* to share my cancer story. At first, people needed to know because I was out of work, etc. #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland |
| Kevin Freiert @K_SalemOaks @Raising_Rare @wegohealth @GlobalGenes @RareNewEngland A3/2: Now, I need to decide individually. It is part of who I am but is it is not who I am. So I tell it p.r.n. #patientchat #pinksocks |
| Spencer Health Solutions @spencerhealth "When" is sometimes harder than "How" or "Who." For working adults, there is a fear around job implications - PTO, short-term disability, are you the caregiver or patient? It probably comes down to - when you can't keep it a secret anymore. #patientchat |
| MyVictory Wellness @MyVictory_Well @Patient_Story This is such a good point. Sometimes when you feel like you don't have control of your circumstances it can be comforting to share your experience in your own words. Taking control of your own story. #patientchat |
| Allison Rosen, MS @ARosen380 A3: I also work in the #oncology field so I knew that the #researchers I worked with before cancer could benefit from hearing a story from a patient like whom they were working to help! #patientchat |
| Alan Brewington @abrewi3010 A3 when I made up my mind it was time to engage in to my own health. Sharing is a form of regaining control over “it” #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat I think it's different for everyone and depends on the stage of your life. Children: parents sharing with school/sitter Teens: sharing with friends/partners (transitioning to take more control) Adults: when the time feels right or its necessary for safety #patientchat |
| Patient Empowerment Network @power4patients RT @ARosen380: A3: A3: I also work in the #oncology field so I knew that the #researchers I worked with before cancer could benefit from hearing a story from a patient like whom they were working to help! #patientchat |
| The Patient Story @Patient_Story @cvhconsulting @patientchat A1: This is another great point! One byproduct of putting up https://t.co/w8tXXnMCFD has been physicians and other medical experts commenting on a POV they were unfamiliar with. More sharing and willingness to listen* goes so far. Especially in healthcare. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up… #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @Crohnoid OMGOSH thank you!!! I love horses 💞 #patientchat |
| MyVictory Wellness @MyVictory_Well @carlyflumer So true! It is all about your comfort level - if/when you do decide to share, there are so many connections you make with others. #patientchat |
 | CFN @CFN_NCE RT @PatientAdvisors: We created some tips for patients being asked to tell their stories, and for those who ask us. Presented at #HealthQualityTransform 5 Tips for requesting stories from patients and caregivers 5 Tips for responding to a request for your story https://t.co/sf2OSAvPmy #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @keithmcarthur It’s truly hard for close family to follow along when it takes a decade or so just to narrow diagnosis down #patientchat |
| Patient Chat @patientchat T4: What are your tips for deciding how much to share about your diagnosis? #patientchat https://t.co/u0DbQxilPX |
| Spencer Health Solutions @spencerhealth Family First! Enjoy! #patientchat |
| Allison Rosen, MS @ARosen380 A3: When I started to share my story I met my second family, the people who truly understood me, other #patients and #survivors just like me, who got me and helped me through some rough times that only they could understand. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are your tips for deciding how much to share about your diagnosis? #patientchat https://t.co/u0DbQxilPX |
| Kevin Freiert @K_SalemOaks A4: Start small and then tell more as you become comfortable. This works on the macro and micro level. And remember, your listener may not want to know the whole story. #patientchat #pinksocks |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @Patient_Story @patientchat I LOVE your work!!! So powerful. #patientchat |
| The Patient Story @Patient_Story A4: I believe deciding if, when, or how much you want to share will be very apparent in the moment. It’s hard to predict. My only “guidance” here is to just follow your gut and your heart. There is no right or wrong way, only the authentic-to-you way. #patientchat |
| The Patient Story @Patient_Story A4: For some, it may come easy, even in the beginning. For others, there will be too much taking up your bandwidth to even think about sharing your story. I think it has to do with processing what’s going on. It’s about survival in the beginning. #patientchat |
| The Patient Story @Patient_Story A4: I’ve never known a community as instantly giving and caring as the cancer or medical one. People jump out of their way because of all the empathy and kindness. We just want to help capture that for everyone and be the go-to for these stories. #patientchat |
| The Patient Story @Patient_Story A4: Timing may also play a role here. In the beginning, it’s about self-preservation. As a patient, you’ve just been thrust into absolute chaos. I strongly believe all energy should be reserved for yourself. It’s not selfish, it’s self-focused. It’s a good thing. #patientchat |
| Patient Empowerment Network @power4patients @patientchat (1/2)When people are in an exam room, or a hospital room, their story is what matters most to them – their symptoms, their pain, their hopes for relief – and what is most important to the doctor or nurse hearing that story. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: Share what makes you feel good! #patientchat |
| Kevin Freiert @K_SalemOaks A4: Think about the moral of your story. Then tell enough of it for your audience to learn and remember the lesson. #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: T4: T4: What are your tips for deciding how much to share about your diagnosis? #patientchat https://t.co/u0DbQxilPX |
| Diverse Health Hub @DHealthhub RT @power4patients: @patientchat (1/2)When people are in an exam room, or a hospital room, their story is what matters most to them – their symptoms, their pain, their hopes for relief – and what is most important to the doctor or nurse hearing that story. #patientchat |
| MyVictory Wellness @MyVictory_Well @K_SalemOaks Fantastic advice - your story is yours. Share at your own comfort level as well as the listeners. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T3 After years of misdiagnosis & many Drs, I wanted to share my story in hopes I could help others not go through all the difficulties I did. #patientchat |
| Melissa VanHouten @melissarvh Such a personal decision. Set goals & ask yourself which pieces of your story serve to help you achieve those goals. Be honest w/yourself about whether you can handle the ramifications of sharing great detail. Most people are receptive & supportive-but some are not. #PatientChat |
| Seth Rotberg @Srotberg15 RT @lisadbudzinski: T1 It’s essential for others to know they aren’t alone✨ Your story helps others to understand & hopefully gives them confidence & strength #patientchat |
| Allison Rosen, MS @ARosen380 A4: I share different things about my diagnosis to different people depending on the platform. I share on social media but not all the details. If I write an article or do an interview on a topic I share details in that. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @ARosen380 👏👏👏💞 #patientchat |
| The Patient Story @Patient_Story Beautifully put. #patientchat |
| Patient Empowerment Network @power4patients RT @Patient_Story: Beautifully put. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4: Share only what you are comfortable sharing. #patientchat |
| Alan Brewington @abrewi3010 A4 2 main rules. First, it’s good to push your own vulnerability envelop but only to the point it improves the quality of your message. Pushing into discomfort hurts you & your message. Second quality over quantity. Don’t write a term paper if a page works #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A4: I think this will also be determined by the circumstance. Sometimes it can be necessary to share more for your own safety than you may be ready to disclose. If that's not the case start small and tell people you're open to answering their questions (if you are). #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up… #patientchat |
| Allison Rosen, MS @ARosen380 A4: Also I agree with the others, you share only what you are comfortable sharing. I only recently talked about my fertility and I am 8 years cancer free. #patientchat |
| Patient Chat @patientchat T5: Where can you go to share your story? #patientchat https://t.co/qZi3co8tg0 |
 | MariposaWarrior @LunaRivera96 RT @patientchat: T2a: T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat https://t.co/LeI3wSqpo3 |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: Where can you go to share your story? #patientchat https://t.co/qZi3co8tg0 |
| Lisa Davis Budzinski @lisadbudzinski This! 👇✨ #patientchat |
| AllStripes @_allstripes A5: We are honored to share the stories of #raredisease patients, parents and other care partners on our blog to help increase understanding of issues such as the “feelings of isolation and frustration” that may accompany symptoms of #PSP. https://t.co/LU0mZPpRf8 #PatientChat |
| MyVictory Wellness @MyVictory_Well 🙌🙌 #patientchat |
| Kevin Freiert @K_SalemOaks A5: I have shared it at work, in the Sunday School class I teach, at conferences, online (website, blogs.) Whenever someone asks, why are you always so level-headed? #patientchat #pinksocks |
| Allison Rosen, MS @ARosen380 @lisadbudzinski @lisadbudzinski this is so selfless. #patientchat |
| Alan Brewington @abrewi3010 A4 use your voice, your voice only. Your voice is your story, not some fancy buzzword or term. Connections are deeper when we speak from our self. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A5: TWITTER! Was this a trick question? ;) #patientchat |
| The Patient Story @Patient_Story A5: https://t.co/l2yn7AWIYo 😁! Even if we can’t interview you right away, we are always hoping people will come and add themselves to our community “database.” We have an intake survey that takes a couple minutes so we get to know each person. #patientchat |
| Spencer Health Solutions @spencerhealth Who and how much to share is a person-by-person decision. The defining line? Is this person an ally and a shoulder to cry on? Or do they need to know because they will be more understanding/patient when you are having a hard time? #patientchat #empathyequation |
| Kevin Freiert @K_SalemOaks A5: Caution: Shameless plug: My story is at https://t.co/hSBOAym6xx #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland @SalemOaks |
| The Patient Story @Patient_Story A5: To be honest, I feel so much guilt for how many people we have NOT been able to interview. They are beyond willing to share - they’re so excited to. I wish I had more resources to be able to get each and every story up, but it’s mostly me cranking away right now. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Social media (Facebook, Instagram, Twitter) and support groups like @_OurOdyssey_, @SmithCenterDC, @LifewithCancer, etc. You can also create a blog or write different versions of your story for #advocacy orgs. #patientchat |
| Patient Empowerment Network @power4patients @patientchat We're always happy to help people tell and share their story! Please give us a shout any time #patientchat |
| MyVictory Wellness @MyVictory_Well Non-profit groups and like minded organizations for #survivors is a great place to share. They provide a sense of community, resources, and support. Some of our favorites? @ElephantsTea @NOCC_National #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @ARosen380 It’s soooo exhausting & excruciating to be a patient let alone an undiagnosed one with a rare condition or two. I would hate to see others go through such a dark hole in healthcare 🤗 #patientchat |
| Alan Brewington @abrewi3010 A5 share your voice anywhere a person is listening. All it takes is one person to actively listen and you have changed the world with your story. #patientchat |
| Patient Chat @patientchat Topic 6 (T6:) coming up… #patientchat |
| Diverse Health Hub @DHealthhub A5: We are grateful to partner with @power4patients to produce powerful empowerment stories like Diahanna Vallentine's: https://t.co/njHDnd3foP #patientchat #healthequity |
| Patient Empowerment Network @power4patients RT @DHealthhub: A5: We are grateful to partner with @power4patients to produce powerful empowerment stories like Diahanna Vallentine's: A5: We are grateful to partner with @power4patients to produce powerful empowerment stories like Diahanna Vallentine's: https://t.co/njHDnd3foP #patientchat #healthequity |
| The Patient Story @Patient_Story A5: We are starting to capture more organic traffic - people searching for specific cancer types - and so adding to our library means a very targeted audience fo patients and caregivers will find you and your story. #patientchat |
| Alan Brewington @abrewi3010 RT @K_SalemOaks: A5: Caution: Shameless plug: A5: Caution: Shameless plug: My story is at https://t.co/hSBOAym6xx #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland @SalemOaks |
| Melissa VanHouten @melissarvh Twitter, Facebook, & other soc med sites are good starting points. You can create a blog or website, share in support groups, w/physicians & researchers, medical associations, nonprofits, & disease-related orgs, w/family, friends, media. Where can you NOT share? 😊#PatientChat |
| Diverse Health Hub @DHealthhub RT @Patient_Story: A5: A5: We are starting to capture more organic traffic - people searching for specific cancer types - and so adding to our library means a very targeted audience fo patients and caregivers will find you and your story. #patientchat |
| Patient Chat @patientchat T6: For those of you who have been telling your story for a while, what do you wish you would have known before you did so? #patientchat https://t.co/V4Hwbw0kFU |
| The Patient Story @Patient_Story ❤️ So happy you're part of our TPS community now. Thank you for always being so willing and open to share!! #patientchat #Patientshelpingpatients #PatientCare #patientadvocate |
| Alan Brewington @abrewi3010 A5 if you are unsure start with #patientchat then expand from there. This hashtag is meant for us 24/7, not just for chats. |
| The Patient Story @Patient_Story A6: If I could turn back the clock to Stephanie the Scared Patient, who was unsure MANY times about speaking publicly on intimate issues, I’d say, “You’re doing the right thing because you’re following your gut and your heart.” #patientchat |
| Carly Flumer (she/her) @carlyflumer T6: That there’s a new world to discover in advocacy that will lead you to amazing people and opportunities. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T5 There are many great sites & organizations that want to help tell your story. There’s more now than ever before✨ You can start by looking for sites of certain conditions & others are broader & more general #patientchat |
| The Patient Story @Patient_Story A6: “And the community you didn’t choose to join but are now a part of is so incredibly loving and supportive. You will meet amazing people through sharing your story.” #patientchat |
| MyVictory Wellness @MyVictory_Well Great advice 🙌 #patientchat |
| Allison Rosen, MS @ARosen380 A6: I share often now, but I wish I would have known how impactful my story could be to others and then I might have started sharing even earlier, while in treatment. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: T5: T5: Where can you go to share your story? #patientchat https://t.co/qZi3co8tg0 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 T3: #patientchat Not everyone deserves your story. It's highly personal, its an exchange of trust. I think merely alerted some people and basically gave them the choice to be involved in our life. |
| The Patient Story @Patient_Story A6: With most things in life, vulnerability leads to more vulnerability. In this context, all of that leads to true connection and a way to empower both patients and caregivers in a situation where there’s a feeling of loss of control. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @RarePOV: |
| Spencer Health Solutions @spencerhealth We may be impartial but #PODCASTS! 🙂 Some of our favorite interviews are with #patients telling their stories. #Courage #Fierceness #Resiliance #Love #PatientChat @GetSocialHealth @healthcarerap @PharmacyPodcast @MatthewZachary @LillyStairs @jhoronjeff @TomPRhoads1 |
| Kevin Freiert @K_SalemOaks DOH! - forgot the #patientchat |
| Patient Empowerment Network @power4patients @patientchat One of the most powerful stories we've ever had the honor to share is this one featuring PEN Board Member @SajjadIqbalmd It shows the incredible power of sharing your story and what it can do for you & someone else #patientchat https://t.co/cbv8IpKMqf |
| Diverse Health Hub @DHealthhub RT @power4patients: @patientchat One of the most powerful stories we've ever had the honor to share is this one featuring PEN Board Member @SajjadIqbalmd It shows the incredible power of sharing your story and what it can do for you & someone else #patientchat https://t.co/cbv8IpKMqf |
| Alan Brewington @abrewi3010 A6 to use my voice, not what I thought an epatient should sound like. My story doesn’t need marketing, it needs to be shared. Also, when I use my voice the quality of my material went up. #patientchat |
| Alan Brewington @abrewi3010 RT @carlyflumer: T6: T6: That there’s a new world to discover in advocacy that will lead you to amazing people and opportunities. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski A5 Here are some great sites to share your story 👇 #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 YES x1000 #patientchat |
| Kevin Freiert @K_SalemOaks A6: I wish I had known how my cancer story could benefit others. And how telling IT could actually complete IT for me. #patientchat #pinksocks @raising_rare @wegohealth @globalgenes @rarenewengland |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 T4: #patientchat Some detail invites the idea that the people you share with have some say or insights into decisions and whatnot. Just be cognizant of who is going to have your back when you need it. |
| Patient Empowerment Network @power4patients RT @carlyflumer: T6: T6: That there’s a new world to discover in advocacy that will lead you to amazing people and opportunities. #patientchat |
| Alan Brewington @abrewi3010 RT @power4patients: @abrewi3010 YES x1000 #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 T5: #patientchat Medical conferences sometimes offer opportunities to share your story. Blog. Get involved in patient advisory work at your hospital. |
| DenetraHampton @ProducerNurse A6: I wish I had known that it was my SUPER POWER. That it was a GIFT. That my story was a gateway for someone else's healing.. @patientchat #patientchat |
| The Patient Story @Patient_Story A5: BTW if you are interested in joining our community of voices, just fill out our intro survey. It should only take a couple minutes and helps us learn who you are! ❤️ #patientchat https://t.co/EDZBNvry2S |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 T6: #patientchat I wish early on I didn't give so much weight to what other people thought. It's my ground to stand on. |
| Melissa VanHouten @melissarvh I would not change anything. The learning has process has been valuable & has helped shaped my advocacy. It was necessary for me to face the uncertainty. #PatientChat |
| Allison Rosen, MS @ARosen380 A5: I also suggest everyone reach out to where they are/were treated and ask if they have opportunities to share. I have gotten a lot of opportunities sent my way from my cancer hospital b/c they knew I was reliable and wiling to share. #patientchat |
| MyVictory Wellness @MyVictory_Well YES! The power to authentically connect and support one another #patientchat |
| The Patient Story @Patient_Story A6: I love this description. Super power. It really is! And once I accepted it as that, the empowerment began. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| AllStripes @_allstripes RT @RarePOV: |
| Diverse Health Hub @DHealthhub RT @Patient_Story: A6: A6: I love this description. Super power. It really is! And once I accepted it as that, the empowerment began. #patientchat |
| Diverse Health Hub @DHealthhub RT @RaeofSunshine79: T6: T6: #patientchat I wish early on I didn't give so much weight to what other people thought. It's my ground to stand on. |
| Alan Brewington @abrewi3010 CT I start my first blog while sad and bored on a Friday night. Roughly 2 years later I was on stage at #Medx @StanfordMedX sharing my story. Advocacy is a wild abs stance ride but so needed and rewarding. Patients helping patients creates chronically positive smiles #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 CT: #patientchat Thank you for the reminder today of how far I've come in what I learned. |
| Mary Leer @vleer_ny @patientchat T6 Perhaps skip all the details, even tho 85% of time folks want details. Frankly, found so much support/interest in my story, would not change much. helped that PA BC Coalition dedicated a page in newsletter to my story - sent that out as intro to my case.Invaluable #patientchat |
| Diverse Health Hub @DHealthhub Love this! #patientchat |
| DenetraHampton @ProducerNurse I AM A DAUGHTER of a CANCER MOTHER!! She lost her battle.. But I am still fighting for her #patientchat |
| Patient Empowerment Network @power4patients RT @RaeofSunshine79: CT: CT: #patientchat Thank you for the reminder today of how far I've come in what I learned. |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Melissa VanHouten @melissarvh RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat A big thank you to @Patient_Story for joining #patientchat today and sharing your insights! |
| The Patient Story @Patient_Story CT: This was my ever tweetchat and I loved It. What I learned is there are always so many passionate #patientadvocate #patientcare people out there who've made it their life's purpose to help others. Sharing stories is universally one way to do this. #patientchat |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, September 4th. Hope to see you there! https://t.co/YcLUqrICt2 |
| Kevin Freiert @K_SalemOaks #patientchat CT: Thanks for a great discussion. Stay safe everyone! |
| Melissa VanHouten @melissarvh RT @patientchat: The next Empowered #patientchat will be Friday, September 4th. Hope to see you there! https://t.co/YcLUqrICt2 |
| Allison Rosen, MS @ARosen380 CT: Your story is your own, there is no right or wrong way to talk about it. There is a healing aspect to sharing, but you have to share only what YOU are comfortable with. There is a whole community of patients that are here to support you. #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat |
| Patient Empowerment Network @power4patients @ProducerNurse @patientchat YES!!!! Our tag line is: Knowledge is your superpower! but maybe we should change it to storytelling is your superpower #patientchat https://t.co/SJawpfQlXF |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 RT @DHealthhub: Love this! #patientchat |
| The Patient Story @Patient_Story Thank YOU @patientchat @power4patients for the invite. I am so grateful to you for the work that YOU do. I hope people out there will connect w/me & https://t.co/w8tXXnMCFD so we can continue sharing stories and empowering one another. Sending each one of you hugs.#patientchat |
| MyVictory Wellness @MyVictory_Well #Patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Thank you for bringing us together. The people in this chat are compassionate and knowledgeable! #patientchat |
| Patient Empowerment Network @power4patients @ProducerNurse Me too #patientchat |
| Patient Empowerment Network @power4patients RT @Patient_Story: CT: CT: This was my ever tweetchat and I loved It. What I learned is there are always so many passionate #patientadvocate #patientcare people out there who've made it their life's purpose to help others. Sharing stories is universally one way to do this. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat will be Friday, September 4th. Hope to see you there! https://t.co/YcLUqrICt2 |
#patientchat content from Twitter.