#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. |
 | Kevin Freiert @K_SalemOaks Hello. Kevin from CT here. I own @SalemOaks , have 30 years pharma R&D experience, and beat cancer 21 years ago. #patientchat |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Parijat - On 🧵s & 🐘 & 💙sky @ParijatDesh RT @ParijatDesh: Who you trust during #infertility , your #highriskpregnancy or when you have a #baby in the #NICU can make or break your experience. The 3 main places you must make sure to place your trust so you don't have any guilt or regret going forward. https://t.co/Z85rPhRckF #patientchat https://t.co/rgBT1hfcGU |
| Patient Chat @patientchat Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat |
 | Alan Brewington @abrewi3010 Alan here. One sleepy tired #chronicpain patient who is waiting on authorization for neck surgery. #patientchat |
 | Geeky Fox @TechKitsune #patientchat looks like the topics aren't things I can answer since I'm no MD! But, I'll be watching simply out if curiosity. :) |
 | Laurie Reed @LReedptadvocate Laurie here joining from the very chilly midwest. #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Advice For Newly Diagnosed Patients https://t.co/7URZ2RK9mM https://t.co/Ow6Z1vOZCo |
| Alan Brewington @abrewi3010 @K_SalemOaks Thanks and good to see you here. #patientchat |
 | Barby Ingle Official @BarbyIngle .@BarbyIngle here for #patientchat... Love this topic. I wish I had a guide when I was trying to get dx. It took almost 3 years and 42 providers... |
| Patient Chat @patientchat I will introduce new Topics with T1, T2...Please include corresponding T# at front of every answer - hard to remember but helpful! #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What is the best advice or resource you can give a patient who is newly diagnosed with a chronic illness? #patientchat https://t.co/fcgAXhofso |
 | teens get cancer too @trials4now RT @ShereesePubHlth: VIT (very important tech) #HIMSS19 Number 7: VIT (very important tech) #HIMSS19 Number 7: Leidos for their data visualization strategies & patient-centeredness. https://t.co/VCkbAnzR20 #patientchat https://t.co/WponH0c6h0 https://t.co/Xk3wxsgr9A |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What is the best advice or resource you can give a patient who is newly diagnosed with a chronic illness? #patientchat https://t.co/fcgAXhofso |
| Kevin Freiert @K_SalemOaks T1: You are not alone! It is important to find others who have been in your place. If you have a rare diagnosis, go to @rarediseases @globalgenes @eurordis to start your search. #patientchat #pinksocks #patexpsymp @S4PM #Patients2019 |
 | Heather McCullen @H_SalemOaks Hi #patientchat at the hair salon going full coral! I’ll catch up on the chat in a bit |
 | Ken Taylor, RPIC @KenRayTaylor Hi @kenraytaylor coming from the desert outside of Phoenix AZ, happy to be here #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1 - 1) Find information about your diagnosis to inform you so that you know what questions to ask and what to focus on. 2) Identify your support network (people, resources, internet) #patientchat |
| Barby Ingle Official @BarbyIngle T1: Learn about your Dx is my best advice for a new patient, use that knowledge to set expectations and goals for yourself and your team! #patientchat |
 | Tricia Chaney @TRCWriter Tricia here from the southeast. Medical/healthcare writer and marketer, hoping to empower patients with accurate information. #patientchat |
| Alan Brewington @abrewi3010 A1 find fellow patients online or thru chats like #patientchat. Listen to their stories, learn from their experiences. Health literacy is often the first major obstacle, patient stories are perfect for this |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1: T1: Learn about your Dx is my best advice for a new patient, use that knowledge to set expectations and goals for yourself and your team! #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... https://t.co/LQtUhealmg #patientchat |
| Kevin Freiert @K_SalemOaks T1: If it is cancer, I suggest reading Lance Armstrong's It's Not About the Bike. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Patient Chat @patientchat T2: Preparing for treatment can be scary. What advice do you have for a patient starting treatment? #patientchat https://t.co/gA88XR8wkQ |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @gratefull080504 checking in President The Voice of the Patient #kidneytransplant recipient #cancersurvivor #patientchat |
| Patient Empowerment Network @power4patients #patientchat |
| Ken Taylor, RPIC @KenRayTaylor A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other people are doing for treatment options. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2 - Here's where I think the experiences of other patients can really make a difference in terms of learning and setting expectations #patientchat |
| Patient Chat @patientchat RT @KenRayTaylor: A1: A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other people are doing for treatment options. #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 where are you? #patientchat |
| Kevin Freiert @K_SalemOaks T2: Talk to others who have undergone the treatment. Ask them what they wish they would have asked their doctor. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A1 be open to 2nd opinions + opinions outside of the #ecosystem #patientchat |
| Barby Ingle Official @BarbyIngle @patientchat T2. Ask ?s before TX, dont do any TX you are not comfortable w or ready for without preparing. Be comfortable, if you are going for an extended hospital stay or procedure bring a comfort. I bring a pillow, quilt, and stuff animal for my infusion therapies #patientchat |
 | Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @COLONTOWN @patientchat @power4patients A1: I agree! I checked out resources provided by @AmericanCancer, which got me started, but my anxiety subsided a bit after connecting w/ other patients online, and seeing them living happy lives. #patientchat |
 | Lisa Davis Budzinski @lisadbudzinski RT @LReedsbooks: An important insight -- "Why aren't regular patient stories enough?" Thoughts? I'd love to hear. #patientadvocacy #patientexperience #patientchat #narrative #healthcare |
| Patient Empowerment Network @power4patients RT @BarbyIngle: @patientchat T2. Ask ?s before TX, dont do any TX you are not comfortable w or ready for without preparing. Be comfortable, if you are going for an extended hospital stay or procedure bring a comfort. I bring a pillow, quilt, and stuff animal for my infusion therapies #patientchat |
| Barby Ingle Official @BarbyIngle @LReedsbooks Thank you @LReedsbooks #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A1. Talk with people who have lived the #patientjourney of the disease in question #patientchat |
| Alan Brewington @abrewi3010 A2 treatment is the fun part. It gives me something to do, I hate waiting or not knowing. Treatment means opportunity, opportunities mean hope. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: @patientchat T2. Ask ?s before TX, dont do any TX you are not comfortable w or ready for without preparing. Be comfortable, if you are going for an extended hospital stay or procedure bring a comfort. I bring a pillow, quilt, and stuff animal for my infusion therapies #patientchat |
| Patient Chat @patientchat #patientchat |
| Ken Taylor, RPIC @KenRayTaylor A2: Find someone who has gone through the same treatment you can console with. People do want to help! Understand the side affects of the treatment so you have the proper expectations. #patientchat |
| Patient Chat @patientchat @KeirasKingdom Hi Keira! Make sure to use #patientchat in your tweets so everyone can see your advice :) |
| Kevin Freiert @K_SalemOaks I agree. I can remember just wanting to get to fight. The preparatory tests, scans, and visits were tiring. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/LQtUhealmg #patientchat |
 | Henry Cruz @RealCruzHenry RT @abrewi3010: A2 treatment is the fun part. It gives me something to do, I hate waiting or not knowing. Treatment means opportunity, opportunities mean hope. #patientchat |
| Patient Chat @patientchat T3: What is the best advice or resource you can give a caregiver of a patient who is newly diagnosed? #patientchat https://t.co/EJW2srIJzw |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A1: A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other people are doing for treatment options. #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A2: A2: Find someone who has gone through the same treatment you can console with. People do want to help! Understand the side affects of the treatment so you have the proper expectations. #patientchat |
| Patient Empowerment Network @power4patients #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3 - 1) join a caregiver support network so you realize that you are not alone 2) let people offer to help when they offer #patientchat |
| Kevin Freiert @K_SalemOaks T3: #carechat Self-care probably isn't on your mind and may seem selfish right now. But figure it out early so that you can be there for the long-run. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Patient Chat @patientchat RT @K_SalemOaks: T3: T3: #carechat Self-care probably isn't on your mind and may seem selfish right now. But figure it out early so that you can be there for the long-run. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Tricia Chaney @TRCWriter T3: Talk to others with similar experience to find resources. Unfortunately, it's tough to get all the answers & where to find affordable equipment or how to handle the embarrassing things that come up from your doc. #patientchat |
| Barby Ingle Official @BarbyIngle T3. I wrote a book of info, best practices & resources for newly DX patients w a chronic pain disease, It's also helpful for any1 w a health challenge to navigate the system - The Pain Code; Walking Through the Minefield of the Health System - https://t.co/P4hefZWOse #patientchat |
| Alan Brewington @abrewi3010 A3 Caregiver time & definition is still being developed & accepted by healthcare. You will have to fight, just make sure it’s for the greater good and not exhaustion based. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with family and friends that you want to keep close. If you dont understand it they wont either. It will also keep you growing in the same direction. #patientchat |
| Laurie Reed @LReedptadvocate @K_SalemOaks @S4PM Really valuable advice -- realize it's a long run, so take care of yourself as well! #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A3: A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with family and friends that you want to keep close. If you dont understand it they wont either. It will also keep you growing in the same direction. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3. I wrote a book of info, best practices & resources for newly DX patients w a chronic pain disease, It's also helpful for any1 w a health challenge to navigate the system - The Pain Code; Walking Through the Minefield of the Health System - https://t.co/P4hefZWOse #patientchat |
| Laurie Reed @LReedptadvocate Good to know. Sounds like a valuable resource. #patientchat |
| Alan Brewington @abrewi3010 A3 you will have #caregiver guilt. Especially true when you practice so called self care. Don’t fight guilt, let the feeling exhaust itself. #patientchat |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @gratefull080504 Yes! Do not be afraid to question the first doctor you see. Get online and see if what you were told is standard. I was afraid to seek a second opinion at first. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... https://t.co/LQtUhealmg #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @BarbyIngle: T3. I wrote a book of info, best practices & resources for newly DX patients w a chronic pain disease, It's also helpful for any1 w a health challenge to navigate the system - The Pain Code; Walking Through the Minefield of the Health System - https://t.co/P4hefZWOse #patientchat |
| Patient Chat @patientchat T4: Set the record straight. What is the worst advice you received as a newly diagnosed patient? #patientchat https://t.co/omN37mxHbF |
| Patient Empowerment Network @power4patients #patientchat |
| Kevin Freiert @K_SalemOaks T4: "Don't exercise, you don't want to take chances." 35 pounds later… I urge you to question whether breaking your normal routine is necessary. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Patient Chat @patientchat @KeirasKingdom No worries! Glad you're here and joining in #patientchat |
| Barby Ingle Official @BarbyIngle T4. The worst advice I got was from multiple HPC's... "this is your new life, you will never be what you were before". Although partially true, I needed 2 hear, U can adapt, learn & use tools to help you accomplish new things in life, life's not over... keep LIVING! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4 - Interestingly I didn't really get any advice because I didn't tell anyone which is a whole nother kind of problem. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor A4: Just live with it! There will never be a cure! Trust your doctor! Dont look it up on the internet! There may not be a cure but scientific advancements come all the time and in many cases by mistake. You should always keep hope alive, because #hopeistrue #patientchat |
| Patient Chat @patientchat RT @BarbyIngle: T4. The worst advice I got was from multiple HPC's... "this is your new life, you will never be what you were before". Although partially true, I needed 2 hear, U can adapt, learn & use tools to help you accomplish new things in life, life's not over... keep LIVING! #patientchat |
| Alan Brewington @abrewi3010 A4 you can’t ski for several more months...6 weeks later I went skiing. My body means my rules. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4. The worst advice I got was from multiple HPC's... "this is your new life, you will never be what you were before". Although partially true, I needed 2 hear, U can adapt, learn & use tools to help you accomplish new things in life, life's not over... keep LIVING! #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A4: A4: Just live with it! There will never be a cure! Trust your doctor! Dont look it up on the internet! There may not be a cure but scientific advancements come all the time and in many cases by mistake. You should always keep hope alive, because #hopeistrue #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... https://t.co/LQtUhealmg #patientchat |
| Patient Chat @patientchat T5: As medicine advances, what is your advice for patients on staying up-to-date on the latest research (i.e. precision medicine, testing, etc.)? #patientchat https://t.co/6ZTOYCfHrT |
| Kevin Freiert @K_SalemOaks T5: Learn about the R&D process first. Good resource >> https://t.co/GAHYfd0UDh #patientchat #pinksocks #patexpsym @S4PM #Patients2019 #Shamelessplug https://t.co/Z4Pu5PWph7 |
| Laurie Reed @LReedptadvocate @patientchat T5 - 1) Networking - Talk with doctors, other people, other patients. 2) Scour the internet but be skeptical of 'too good to be true.' #patientchat |
| Patient Empowerment Network @power4patients #patientchat |
| Kevin Freiert @K_SalemOaks T5: Disease Foundations usually have information on the R&D pipeline for the disease. Identify the organizations conducting the research, follow them doggedly and share what you find. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @patientchat T4: caregivers should not feel guilty about needing support. I like support groups that offer a caretaker support group at the same time as Patient ones. It removes the awkwardness of a handful of caretakers in a Patient space. Both sides can be heard. #patientchat |
| Barby Ingle Official @BarbyIngle T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where you can also go read info for URself. I still see data from 1970's being passed around, its outdated... better info is available, just look!!! #patientchat |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @patientchat T5: follow physicians and publications online. They are happy to engage and explain their research. #patientchat |
| Alan Brewington @abrewi3010 A5 anything that provides hope to a patient is a good thing. That said, there is so much info and pressure don’t let that affect your QOL or treatment plans #patientchat |
 | Abigail Johnston, Esq (she/her) @AMJohnston1315 RT @ViolentKuchar: @patientchat T4: @patientchat T4: caregivers should not feel guilty about needing support. I like support groups that offer a caretaker support group at the same time as Patient ones. It removes the awkwardness of a handful of caretakers in a Patient space. Both sides can be heard. #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where you can also go read info for URself. I still see data from 1970's being passed around, its outdated... better info is available, just look!!! #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 |
| Ken Taylor, RPIC @KenRayTaylor A5: As you learn about it you will find great resources. Bookmark, subscribe, follow your favorites to keep your pipeline full of current information. The newest R&D may not come to you but it will come to someone you follow. #iPain #HopeIsTrue #patientchat |
| Kevin Freiert @K_SalemOaks T5: Scientists and companies don't tweet that much. Do literature searches @sciencedirect @PubMedCommons @researchgate #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where you can also go read info for URself. I still see data from 1970's being passed around, its outdated... better info is available, just look!!! #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A5: A5: As you learn about it you will find great resources. Bookmark, subscribe, follow your favorites to keep your pipeline full of current information. The newest R&D may not come to you but it will come to someone you follow. #iPain #HopeIsTrue #patientchat |
 | peggy oconnor @OconnorPeggy RT @KenRayTaylor: A3: A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with family and friends that you want to keep close. If you dont understand it they wont either. It will also keep you growing in the same direction. #patientchat |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @patientchat I HATE when drs tell patients to stay off of the internet. A good physician should be able to explain & answer any question & direct you to credible online resources. #patientchat |
| Kevin Freiert @K_SalemOaks And don't be afraid of the science. Read the intro (what the paper is about) and discussion (what they think they learned). If interesting, go deeper. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 So many. Recently my spouse was told he has prostate cancer only based on his symptoms, no testing. Unbelievable. On to a new doctor Monday. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: T3. I wrote a book of info, best practices & resources for newly DX patients w a chronic pain disease, It's also helpful for any1 w a health challenge to navigate the system - The Pain Code; Walking Through the Minefield of the Health System - https://t.co/P4hefZWOse #patientchat |
| Heather McCullen @H_SalemOaks RT @K_SalemOaks: And don't be afraid of the science. Read the intro (what the paper is about) and discussion (what they think they learned). If interesting, go deeper. #patientchat #pinksocks #patexpsym @S4PM #Patients2019 |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour. |
| Ken Taylor, RPIC @KenRayTaylor @COLONTOWN @patientchat Yes, becoming your own best advocate will make everything easier for everyone around you. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T3 Remember self-care. Journal your journey. A caregiver needs to stay healthy in all areas and their life is important, too. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour. |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Tricia Chaney @TRCWriter T5: Follow trusted medical/scientific sources. I love reporters, but they don't always understand medical information well and sensationalize things. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks @patientchat 75 - Absolutely. I think that's number 1. It leads you in so many directions for support and information. #patientchat |
| Kevin Freiert @K_SalemOaks Thanks again #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake Amen! Sing it loud! I'm also sick of doctors not participating in the solution to the trauma that is healthcare. My husband's doctor says it's "beneath his pay grade". That right there is a problem. #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: T1: T1: What is the best advice or resource you can give a patient who is newly diagnosed with a chronic illness? #patientchat https://t.co/fcgAXhofso |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @trials4now It’s less about being offensive and more a fear of delaying treatment. Everything seem so urgent and in many ways we just want to get started. #patientchat |
 | Rachel @Rruhls2021 RT @BarbyIngle: T3. I wrote a book of info, best practices & resources for newly DX patients w a chronic pain disease, It's also helpful for any1 w a health challenge to navigate the system - The Pain Code; Walking Through the Minefield of the Health System - https://t.co/P4hefZWOse #patientchat |
#patientchat content from Twitter.