#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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 Deshpande @ParijatDesh
RT @ParijatDesh: Who you trust during #infertility , your #highriskpregnancy or when you have a #baby in the #NICU can make or break your…
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. :)
ReedsBooks @LReedsbooks
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 📣 @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: Leidos for their data visualization strategies & patient-centeredness. ht…
Patient Empowerment @power4patients
RT @patientchat: T1: What is the best advice or resource you can give a patient who is newly diagnosed with a chronic illness? #patientchat
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 @KenRayTaylor
Hi @kenraytaylor coming from the desert outside of Phoenix AZ, happy to be here #patientchat
MH lived experience @CharterSub
@patientchat Be kind to yourself. #patientchat
ReedsBooks @LReedsbooks
@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 📣 @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
Colontown @COLONTOWN
@patientchat @power4patients A1: Try to connect with other patients with your same diagnosis. Online communities often provide a way to meet someone with your same illness, stage, situation, and perhaps even physician. #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1: Learn about your Dx is my best advice for a new patient, use that knowledge to set expectations and goals for yourself…
Darren Smith ♿️ @Dazza70Smith
RT @BarbyIngle: T1: Learn about your Dx is my best advice for a new patient, use that knowledge to set expectations and goals for yourself…
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 @gratefull080504
@gratefull080504 checking in President The Voice of the Patient #kidneytransplant recipient #cancersurvivor #patientchat
Patient Empowerment @power4patients
#patientchat
Ken Taylor @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
ReedsBooks @LReedsbooks
@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 @COLONTOWN: @patientchat @power4patients A1: Try to connect with other patients with your same diagnosis. Online communities often prov…
Patient Chat @patientchat
RT @KenRayTaylor: A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other…
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 @gratefull080504
A1 be open to 2nd opinions + opinions outside of the #ecosystem #patientchat
Barby Ingle 📣 @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 @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 #patient
Patient Empowerment @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,…
Barby Ingle 📣 @BarbyIngle
@LReedsbooks Thank you @LReedsbooks #patientchat
Kevin J. Fowler @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® @powerofpain
RT @BarbyIngle: @patientchat T2. Ask ?s before TX, dont do any TX you are not comfortable w or ready for without preparing. Be comfortable,…
Darren Smith ♿️ @Dazza70Smith
RT @BarbyIngle: @patientchat T2. Ask ?s before TX, dont do any TX you are not comfortable w or ready for without preparing. Be comfortable,…
Patient Chat @patientchat
#patientchat
Ken Taylor @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, oppo…
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® @powerofpain
RT @KenRayTaylor: A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: A2: Find someone who has gone through the same treatment you can console with. People do want to help! Understand the sid…
Darren Smith ♿️ @Dazza70Smith
RT @KenRayTaylor: A1: Become the expert of your condition, knowing the symptoms will help you make the best decisions. Discover what other…
Patient Empowerment @power4patients
#patientchat
ReedsBooks @LReedsbooks
@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
GoodGREENHealth @GoodGREENHealth
RT @patientchat: We hope you all can join us again in two weeks for the next #patientchat on February 8th https://t.co/7URZ2RK9mM
GoodGREENHealth @GoodGREENHealth
RT @patientchat: Topic 3 (T3:) coming up... https://t.co/LQtUhealmg #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
GoodGREENHealth @GoodGREENHealth
RT @patientchat: T3: What is the best advice or resource you can give a caregiver of a patient who is newly diagnosed? #patientchat https:/…
Patient Chat @patientchat
RT @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…
Colontown @COLONTOWN
@patientchat T2: Connect w/ others who have done the same treatment & find people of a similar age & fitness level. The same treatment will affect people in many different ways. Ask others of any products they recommend, foods, lifestyle choices that will make treatment easier. #patientchat
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 📣 @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 @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
ReedsBooks @LReedsbooks
@K_SalemOaks @S4PM Really valuable advice -- realize it's a long run, so take care of yourself as well! #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with famil…
International Pain Foundation® @powerofpain
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 fo…
Darren Smith ♿️ @Dazza70Smith
RT @KenRayTaylor: A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with famil…
Darren Smith ♿️ @Dazza70Smith
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 fo…
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
ReedsBooks @LReedsbooks
Good to know. Sounds like a valuable resource. #patientchat
Violet Kuchar @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
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
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 fo…
Patient Empowerment @power4patients
#patientchat
Colontown @COLONTOWN
@KenRayTaylor @patientchat Checking with others on what symptoms to expect is great advice, & you will handle them better when they happen. Doctors can do their best to explain what to expect, nothing beats a person who has lived it. #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 📣 @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
ReedsBooks @LReedsbooks
@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 @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". Alth…
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® @powerofpain
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". Alth…
Darren Smith ♿️ @Dazza70Smith
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". Alth…
International Pain Foundation® @powerofpain
RT @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…
Darren Smith ♿️ @Dazza70Smith
RT @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…
Keiras Kingdom @KeirasKingdom
@patientchat #patientchat i was diagnosed with 3 chronic illnesses 5 years ago. I surely know the struggle is real. I try to keep positive
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
ReedsBooks @LReedsbooks
@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 @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 @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 📣 @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 @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 @AMJohnston1315
RT @ViolentKuchar: @patientchat T4: caregivers should not feel guilty about needing support. I like support groups that offer a caretaker s…
lillian lake @llake
RT @BarbyIngle: T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where…
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 @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
Colontown @COLONTOWN
@patientchat T4: Avoid any one size fits all advice. Physicans & researchers are often trying to help the most people possible, but actual treatment of a chronic illness necessitates individualized attention. #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where…
Darren Smith ♿️ @Dazza70Smith
RT @BarbyIngle: T5. READ, READ, use multiple sources, compare data, research, ask UR providers, ask online... not just for facts, but where…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: A5: As you learn about it you will find great resources. Bookmark, subscribe, follow your favorites to keep your pipeline…
Darren Smith ♿️ @Dazza70Smith
RT @KenRayTaylor: A5: As you learn about it you will find great resources. Bookmark, subscribe, follow your favorites to keep your pipeline…
peggy oconnor @OconnorPeggy
RT @KenRayTaylor: A3: Again, become the expert. Know everything you can about the condition. This helps you set the expectations with famil…
Violet Kuchar @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 @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 @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 fo…
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…
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 @KenRayTaylor
@COLONTOWN @patientchat Yes, becoming your own best advocate will make everything easier for everyone around you. #patientchat
lillian lake @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 @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 @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 @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 @teaminspire
RT @patientchat: T1: What is the best advice or resource you can give a patient who is newly diagnosed with a chronic illness? #patientchat
Violet Kuchar @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 Beals @Rbeals1976
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 fo…
#patientchat content from Twitter.