#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.
Patient Empowerment @power4patients
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/6xcTNM69w9
Patient Empowerment @power4patients
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
Hi #patientchat’ers! Kara here from @power4patients. I'm a brain cancer survivor and excited about starting 2019 off empowered 💪
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
Kevin Freiert @K_SalemOaks
Hello, Kevin from Connecticut here. I hope everyone has had a great start to 2019. #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @Clara_Health
Your GPS Doc, LLC @yourgpsdoc
Hello and Happy New Year! I’m Nicole Rochester, a physician, former family caregiver, professional health advocate and CEO of @yourgpsdoc. It’s been a while. Great to be back. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Empowerment @power4patients
@K_SalemOaks @SalemOaks @S4PM @savvy_coop @Clara_Health Hi Kevin, Happy New Year! #patientchat
Your GPS Doc, LLC @yourgpsdoc
Come join us! #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat
Beth Morton @beth_morton
Hello! Beth, tweeting/lurking from frigid Vermont. As 2019 starts, definitely rethinking how I can empower my patient experience. #chronicmigraine #patientchat
Seth Rotberg @Srotberg15
Hi everyone, this is my first time here and I am a rare disease advocate living in DC. Excited to be here and to learn and connect with others! #patientchat
Patient Empowerment @power4patients
@yourgpsdoc Hi Nicole, thanks for joining us! Happy New Year :) #patientchat
Quin Turner @QuinlanTurner
@patientchat Quin here from Boston, 26 year Crohnie. Might have to take off early but I'll try to keep up as best I can #patientchat
Inspire @teaminspire
Hello and Happy New Year to the #patientchat community. John Novack here from Inspire.
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
Jamie Roger @JamieRoger8
Happy New YEAR #patientchat Jamie from CT and @SalemOaks Come join us! #hcldr #htreads #pinksocks @abrewi3010 @Chris_Anselmo
Jamie Roger @JamieRoger8
@beth_morton Great to see you here @beth_morton #patientchat
Patient Empowerment @power4patients
@teaminspire Hey John! Happy New Year to you! Thanks for joining us #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Starting the Year Empowered https://t.co/6xcTNM69w9 https://t.co/P9BoIrOgv6
Jamie Roger @JamieRoger8
@teaminspire Happy New Year John, Hope 2019 is filled with fun conferences and awesome collaborations for you #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Empowerment @power4patients
@Srotberg15 Hey Seth, so happy you joined us! #patientchat
Kevin Freiert @K_SalemOaks
@beth_morton Good to see you here Beth. #patientchat
Alan Brewington @abrewi3010
@JamieRoger8 @SalemOaks @Chris_Anselmo Hi! Im supposed to be in a work meeting with the boss right now. The boss is lost though. #patientchat
Patient Chat @patientchat
T1: What are some things you can do today that will make you feel empowered all year long? #patientchat https://t.co/FCUbx0JAtS
Jamie Roger @JamieRoger8
@abrewi3010 @SalemOaks @Chris_Anselmo Perfect timing. Happy New Year @abrewi3010 #patientchat
Patient Empowerment @power4patients
@QuinlanTurner @patientchat Welcome, Quin! #patientchat
abridged @abridgedtheblog
Joining the first #patientchat of 2019 — looking forward to chatting and learning about #patientempowerment
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat topic is Starting the Year Empowered https://t.co/6xcTNM69w9 https://t.co/P9BoIrOgv6
Barby Ingle 📣 @BarbyIngle
@patientchat Hello #patientchat here in NV, but traveling back home because I'm too sick, so may drop cell signal
Kevin Freiert @K_SalemOaks
@Srotberg15 Hi Seth. Get ready for a fast-moving stream of thoughts. #patientchat BTW, I want to give you a call. Are you around later today?
Alan Brewington @abrewi3010
@JamieRoger8 @SalemOaks @Chris_Anselmo Happy New Year to you too! #patientchat
Jamie Roger @JamieRoger8
Connect with others who are focused on the same goals that I am. Partners in the journey through 2019. #patientchat
Patient Empowerment @power4patients
@beth_morton Hi Beth! It's frigid here in Boulder, CO today too #patientchat
Your GPS Doc, LLC @yourgpsdoc
@BarbyIngle @patientchat Feel better, Barby! #patientchat
Kevin Freiert @K_SalemOaks
T1: Reflect on what you want the year to look like. Relax, read something that inspires you, and write down ideas, including fun stuff. Now budget for them (time, $, whatever). Give yourself permission. #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @Clara_Health
Inspire @teaminspire
RT @patientchat: T1: What are some things you can do today that will make you feel empowered all year long? #patientchat https://t.co/FCUbx…
Patient Empowerment @power4patients
RT @patientchat: T1: What are some things you can do today that will make you feel empowered all year long? #patientchat https://t.co/FCUbx…
Barby Ingle 📣 @BarbyIngle
T1. Take care of my health first, share my story to give others hope and ideas, get/stay organized. . #patientchat
Jamie Roger @JamieRoger8
@BarbyIngle @patientchat Take Care, I hope that being home will help you heal. #patientchat
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: T1: Reflect on what you want the year to look like. Relax, read something that inspires you, and write down ideas, includ…
Patient Empowerment @power4patients
Hope you feel better soon, @BarbyIngle! #patientchat
Your GPS Doc, LLC @yourgpsdoc
T1: Having a clear understanding of your (or your care partner's) medical history is a great start to being empowered. Update your medication list, update any recent hospitalizations, surgical procedures, new doctors, new health insurance, etc. #patientchat
Patient Empowerment @power4patients
RT @BarbyIngle: T1. Take care of my health first, share my story to give others hope and ideas, get/stay organized. . #patientchat https://…
Alan Brewington @abrewi3010
A1 we all are lots of hurt but that doesn’t mean we aren’t entitled to a good life! It’s popular to say it’s ok not to be ok, it’s also ok to be ok. Start from this point of view and look forward to life. #patientchat
Jamie Roger @JamieRoger8
RT @yourgpsdoc: T1: Having a clear understanding of your (or your care partner's) medical history is a great start to being empowered. Upda…
Patient Chat @patientchat
RT @yourgpsdoc: T1: Having a clear understanding of your (or your care partner's) medical history is a great start to being empowered. Upda…
Kevin Freiert @K_SalemOaks
T1: Release the strong grip on control. Decide to treat every experience as a learning opportunity. #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @clara_health
Dr. Kelly Shanahan @stage4kelly
T1: set up google alerts for your disease so you can keep up with what’s new #patientchat
abridged @abridgedtheblog
T1: I have new health insurance this year — this week I am making sure I understand the financial side of stuff and how it will impact healthcare decisions (who is in-network/out of network, funding better Rx prices, etc) #patientchat
Patient Empowerment @power4patients
Checking out our Empowered Patient Toolkit is a good way to get started https://t.co/DrCnGtVZ6g #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @stage4kelly: T1: set up google alerts for your disease so you can keep up with what’s new #patientchat
Your GPS Doc, LLC @yourgpsdoc
I love this! #patientchat
Seth Rotberg @Srotberg15
T1. One of the biggest thing to do is connect with others going through a similar situation. Whenever I connect with another younger person in the rare disease space it always inspires me to do more for the community. #patientchat
Alan Brewington @abrewi3010
A1 look for new challenges. Make a chronic relationship with someone outside your disease silo. #patientchat
Dr. Kelly Shanahan @stage4kelly
RT @power4patients: Checking out our Empowered Patient Toolkit is a good way to get started https://t.co/DrCnGtVZ6g #patientchat
Quin Turner @QuinlanTurner
@patientchat Choose to be active and engaged within your respective health community (not always an easy thing to do). Not only does it help pts avoid feeling isolated, it educates, inspires and creates a sense of comradery making it easier to stay on top of your own health #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up... #patientchat https://t.co/950AJPZclr
Patient Empowerment @power4patients
@K_SalemOaks @SalemOaks @S4PM @savvy_coop @Clara_Health Love this one. I find the older I get, the more aware I am of my need to control things. And, in the immortal words of G.I. Joe, "knowing is half the battle!" #patientchat
abridged @abridgedtheblog
RT @power4patients: Checking out our Empowered Patient Toolkit is a good way to get started https://t.co/DrCnGtVZ6g #patientchat
Patient Empowerment @power4patients
RT @QuinlanTurner: @patientchat Choose to be active and engaged within your respective health community (not always an easy thing to do). N…
Quin Turner @QuinlanTurner
@patientchat Choosing to be active can mean a lot of things but just taking the initiative to recognize you need to get outside your comfort zone and interact can be incredibly beneficial. Whether it's participating in twitter chats or getting involved with patient orgs #patientchat.
Patient Chat @patientchat
T2: What strategies, tips, or tools can/do you use to be more empowered in your health? #patientchat https://t.co/AMbpuad6C0
Seth Rotberg @Srotberg15
@stage4kelly Such a great idea that I currently do. The great thing about Google Alerts are getting daily or weekly updates on what’s happening in your community or area(s) of interest. #patientchat
Patient Chat @patientchat
RT @QuinlanTurner: @patientchat Choosing to be active can mean a lot of things but just taking the initiative to recognize you need to get…
Patient Empowerment @power4patients
@Srotberg15 Agree 100%! #patientchat
Maya Northen Augelli @mayanorthen
Late to #patientchat but hoping to jump in soon!
Patient Empowerment @power4patients
RT @abridgedtheblog: T1: I have new health insurance this year — this week I am making sure I understand the financial side of stuff and ho…
Jamie Roger @JamieRoger8
@patientchat Set goals, make plans, don't put appointments off. Be present in your health on a daily basis and make choices that reflect where you want to be. #patientchat #empowered #choices
Kevin Freiert @K_SalemOaks
T2 Establish a routine but don't beat yourself up if life messes it up. Just turn back to the routine. It could be exercise, therapy, eating habits, reading, sleep, or most importantly "free time." #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @clara_health
Patient Empowerment @power4patients
RT @patientchat: T2: What strategies, tips, or tools can/do you use to be more empowered in your health? #patientchat https://t.co/AMbpuad6…
Jamie Roger @JamieRoger8
@mayanorthen I hope you are planning your yoga instructor funded road trip for 2019! #patientchat
Alan Brewington @abrewi3010
A2 information is neither good nor bad. However lack of information is the basis for almost all anxiety and stress. #patientchat
Jamie Roger @JamieRoger8
RT @K_SalemOaks: T2 Establish a routine but don't beat yourself up if life messes it up. Just turn back to the routine. It could be exerc…
Your GPS Doc, LLC @yourgpsdoc
T2: I'm a strong believer of writing things down (or typing them in your smartphone). Take notes at medical appointments. Don't expect that you will remember everything. Also ask questions and demand (politely) lay terminology. #patientchat
Barby Ingle 📣 @BarbyIngle
T2 The tool most needed for me to be most empowered is good communication between me and my care team, caregivers and family. #patientchat
Patient Chat @patientchat
RT @JamieRoger8: @patientchat Set goals, make plans, don't put appointments off. Be present in your health on a daily basis and make choice…
abridged @abridgedtheblog
#patientchat t2: keeping a health journal to track symptoms, activity level, what meds I’m taking... helps me to feel more confident during Dr apts.
Jamie Roger @JamieRoger8
Keep those channels opeN. #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 Sadly, I'm on the phone for the jobby job. But I am slowly working on that road trip plan! #patientchat
Kevin Freiert @K_SalemOaks
T2: I find that I strive to keep my numbers where I want them on my fitbit. I was really happy to see my cardiovascular health score tick up a notch last night. My point - measure those things you want to work. #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @Clara_Health
Dr. Kelly Shanahan @stage4kelly
T2: for my personal health I’m committing to eating better and exercising more - and am scheduling workouts/classes in my calendar to prioritize them. #patientchat
Alan Brewington @abrewi3010
A2 doctors, nurses (especially nurses), therapists, etc are human too. Honest & active listening on both sides develops stronger and more productive relationships. #patientchat
Beth Morton @beth_morton
I stay current on research and treatments. I think about things I haven't tried recently that I can try again, maybe it'll work differently now. I'm thinking about ways I can expand my health care team (difficult in rural New England, but still trying....). #patientchat
Jamie Roger @JamieRoger8
@mayanorthen Don't let the year slip by, keep making plans! #patientchat
Patient Empowerment @power4patients
Focusing on improving health literacy is fundamental to being #empowered. Lots of resources out there to help you. We love this tip sheet from the fab @MightyCasey https://t.co/rdYWisA5OX #patientchat
Kevin Freiert @K_SalemOaks
This is so true Alan. We encourage docs to understand what is going on in patients' lives. It's a two way street. #patientchat
Patient Empowerment @power4patients
RT @abridgedtheblog: #patientchat t2: keeping a health journal to track symptoms, activity level, what meds I’m taking... helps me to feel…
Seth Rotberg @Srotberg15
T2: I’ve started being more honest and open with myself and others on how I’m doing. If I’m having a tough day I won’t respond with the typical “good, how are you?” It’s important to accept vulnerability. #patientchat
Alan Brewington @abrewi3010
RT @K_SalemOaks: This is so true Alan. We encourage docs to understand what is going on in patients' lives. It's a two way street. #pati
Jamie Roger @JamieRoger8
PREACH! #okaytonotbeokay #vulnerability #human #patientchat
Patient Empowerment @power4patients
@BarbyIngle Agreed. It's hard to find a problem for which good communication is the wrong solution. #patientchat
Inspire @teaminspire
RT @power4patients: Focusing on improving health literacy is fundamental to being #empowered. Lots of resources out there to help you. We l…
Maya Northen Augelli @mayanorthen
@JamieRoger8 Definitely working on the plans! I'm excited for 2019! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: Focusing on improving health literacy is fundamental to being #empowered. Lots of resources out there to help you. We l…
Alan Brewington @abrewi3010
A2 realize our #healthcare system is to big and bloated, mistakes will happen. Picking our advocacy battles becomes more important! #patientchat
Barby Ingle 📣 @BarbyIngle
RT @power4patients: @BarbyIngle Agreed. It's hard to find a problem for which good communication is the wrong solution. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up... #patientchat https://t.co/950AJPZclr
Jamie Roger @JamieRoger8
@mayanorthen WHere is your first stop going to be? #patientchat #empowered #community #LiveLife
Quin Turner @QuinlanTurner
@patientchat Recognize the knowledge that you've gathered in your adventures with health. As a few pts and I say, in every appointment there are two experts: your doc covers the science, you know your body. Treat yourself that way; that you're on even footing. Ask questions! #Patientchat
Maya Northen Augelli @mayanorthen
Yes! I actually corrected myself on this recently. Started to tell someone I was good and then said "actually no that's not true." #patientchat
Patient Chat @patientchat
T3: What advice do you have for people newly diagnosed with a chronic illness? How can they be empowered right from the start and throughout their journey? #patientchat https://t.co/Ic3fBVGr3Q
Patient Empowerment @power4patients
RT @QuinlanTurner: @patientchat Recognize the knowledge that you've gathered in your adventures with health. As a few pts and I say, in eve…
Patient Empowerment @power4patients
RT @patientchat: T3: What advice do you have for people newly diagnosed with a chronic illness? How can they be empowered right from the st…
IFFGD @IFFGD
RT @patientchat: T3: What advice do you have for people newly diagnosed with a chronic illness? How can they be empowered right from the st…
Your GPS Doc, LLC @yourgpsdoc
RT @QuinlanTurner: @patientchat Recognize the knowledge that you've gathered in your adventures with health. As a few pts and I say, in eve…
abridged @abridgedtheblog
#patientchat t2: I go through phases of symptom tracking. Sometimes on an app or online... this year I went old-school with a small notebook https://t.co/VxAjpL2ViQ
Patient Empowerment @power4patients
RT @abridgedtheblog: #patientchat t2: I go through phases of symptom tracking. Sometimes on an app or online... this year I went old-school…
Alan Brewington @abrewi3010
A3 life is easier if you ask “how might we...?” Vs I’m doing this. #patientchat
Alan Brewington @abrewi3010
Meeting time. Happy ideation time!!! #patientchat
Jamie Roger @JamieRoger8
@patientchat Embrace your story, your experiences, and your choices. This is your life. #patientchat
Kevin Freiert @K_SalemOaks
T3:" You are not the only one. Let's find some others who have this condition together. " #patientchat #pinksocks
Dr. Kelly Shanahan @stage4kelly
T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s advanced cancer, and you see a general onc, you may know more about your particular type of cancer than she does. #patientchat
Seth Rotberg @Srotberg15
T3: Take action and use your results as motivation to fight back. More importantly, know you are not alone and to find both online and in person support to connect with others in your community. #patientchat
Inspire @teaminspire
RT @patientchat: T3: What advice do you have for people newly diagnosed with a chronic illness? How can they be empowered right from the st…
ALS Advocacy @alsadvocacy
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
Patient Empowerment @power4patients
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
Patient Empowerment @power4patients
RT @K_SalemOaks: T3:" You are not the only one. Let's find some others who have this condition together. " #patientchat #pinksocks https:…
Patient Chat @patientchat
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
Your GPS Doc, LLC @yourgpsdoc
T3: Learn all that you can about your illness. You will be the expert and are just as important as the doctor and others on your medical team. Ask questions. Engage with other patients and advocates. Know that you are not alone. #patientchat
Inspire @teaminspire
RT @K_SalemOaks: T3:" You are not the only one. Let's find some others who have this condition together. " #patientchat #pinksocks https:…
abridged @abridgedtheblog
#patientchat t3: find communities of support that can direct patients to good (reliable, science-based, reputable...) resources.
Your GPS Doc, LLC @yourgpsdoc
@stage4kelly So true! #patientchat
Barby Ingle 📣 @BarbyIngle
T3. Newly Dx'ed.... learn bio-psych-social approach to your condition, keep journal, stay organized as you go, keep open mind, multi-tx approaches tend to do better. Ask questions. How will this affect my future tx needs. #patientchat
Beth Morton @beth_morton
Find their patient community online, on social media. Use them as resources. Learn everything you can from trusted sources (this is where I think health literacy comes in...). If possible, find a doctor(s) who is a partner in their care. #patientchat
IFFGD @IFFGD
@patientchat A3: It's important to find your community. With #SoMe, patients have more access to each other than ever before. Being able to share experiences with someone who understands can give newly-diagnosed patients the confidence to take charge of their care. #patientchat
Jamie Roger @JamieRoger8
@mayanorthen Awesome. Start connecting with yoga studios now so that you have more options when you are finally ready to go. #patientchat #makingplans
IFFGD @IFFGD
RT @beth_morton: Find their patient community online, on social media. Use them as resources. Learn everything you can from trusted sources…
Maya Northen Augelli @mayanorthen
A3: Find a community (either official or unofficial) of others with your illness. It helps to know you're not alone, and often, connecting with others can help if you're not sure how/are apprehensive of getting started. #patientchat
Kevin Freiert @K_SalemOaks
T3: I have a friend who became a paraplegic within minutes when he had a spinal aneurism. His life immediately changed forever. He pragmatically made adjustments. It wasn't defeat - it was new. He still had struggle, but his attitude pulled him through. #patientchat #pinksocks
IFFGD @IFFGD
RT @abridgedtheblog: #patientchat t3: find communities of support that can direct patients to good (reliable, science-based, reputable...)…
Patient Chat @patientchat
RT @IFFGD: @patientchat A3: It's important to find your community. With #SoMe, patients have more access to each other than ever before. Be…
Bob Tufts @TuftsB
A3 - Best thing I did at diagnosis was to not go into fetal position, say "why me?"and hide that I had cancer. I reached out, got valuable information that I could use to ask pertinent questions to my oncologist #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up... #patientchat https://t.co/950AJPZclr
Patient Empowerment @power4patients
T3 Be an active participant, speak-up, gather info/evidence re: disease/rx options, know when to get a 2nd opinion/new doctor, ask ???'s (come prepared to appts), leverage resources, own that you are the expert on you, & know you don't have to do any of this alone #patientchat
Patient Empowerment @power4patients
RT @mayanorthen: A3: Find a community (either official or unofficial) of others with your illness. It helps to know you're not alone, and o…
Patient Empowerment @power4patients
RT @IFFGD: @patientchat A3: It's important to find your community. With #SoMe, patients have more access to each other than ever before. Be…
Patient Chat @patientchat
T4: What can you do to encourage friends, family, and others to be more empowered in their health? #patientchat https://t.co/Wfl3CFfwCw
Patient Empowerment @power4patients
RT @beth_morton: Find their patient community online, on social media. Use them as resources. Learn everything you can from trusted sources…
Kevin Freiert @K_SalemOaks
T4: Learn. Learn. Learn. Learn what is normal for your age and what changes might signal a problem. Learn what is expected for your illness or affliction. Learn what you can do to manage your life no matter your situation. #patientchat #pinksocks
Patient Empowerment @power4patients
RT @TuftsB: A3 - Best thing I did at diagnosis was to not go into fetal position, say "why me?"and hide that I had cancer. I reached out,…
Patient Empowerment @power4patients
@TuftsB Well said and done! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: What can you do to encourage friends, family, and others to be more empowered in their health? #patientchat https://t.…
Maya Northen Augelli @mayanorthen
A4: I think the more we share our stories and experiences of how we've become more empowered, it encourages others. Also (if you're able), being there to help them if they're not sure how to start/apprehensive/nervous to go it alone helps. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T4: I have a weekly Facebook Live show where I discuss tips to help patients and family caregivers navigate the healthcare system and effectively advocate for themselves. We each can do our part to encourage and uplift others. #patientchat
Quin Turner @QuinlanTurner
@patientchat Give yourself time to adjust but work towards acceptance of your condition. It's never hopeless and many things you may have to temporarily give up while healing will come back around. Learn as much as you can and never settle for mediocre care. #patientchat
Dr. Kelly Shanahan @stage4kelly
T3: get a second opinion, especially if rare or advanced disease #patientchat
Patient Chat @patientchat
RT @QuinlanTurner: @patientchat Give yourself time to adjust but work towards acceptance of your condition. It's never hopeless and many th…
Bob Tufts @TuftsB
A4 - Be sure thst as a caregiver you also take care of yourself! #patientchat
Maya Northen Augelli @mayanorthen
A4: &share resources. I think often, people don't feel empowered b/c they don't know how to be - i.e. they don't see opportunities to do so, know organizations & groups they can connect with, etc. The more we share resources & educate, the more it can help others! #patientchat
IFFGD @IFFGD
RT @mayanorthen: A4: I think the more we share our stories and experiences of how we've become more empowered, it encourages others. Also (…
Your GPS Doc, LLC @yourgpsdoc
All of this! #patientchat
Barby Ingle 📣 @BarbyIngle
T4. To inspire others to be empowered in their health, I live my best life and follow any advice myself that I would give them. Its important to be the chief of staff of your medical team #patientchat
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat It's important that everyone understands that they need to be proactive in understanding their condition or health issue, and learn on their own rather than only rely on specialists who are often under their own constraints. Also seek second or third opinions! #patientchat
abridged @abridgedtheblog
#patientchat t4: being more open about my illness and the challenges I’ve faced (especially as an undiagnosed/rare disease patient, most medical folks aren’t sure what to do with me) has led to good convos about how others are doing. Encouraging each other to keep moving forward.
Ody_O @OdyO11
T3: Learn what you can about your chronic illness. Get in touch with experts experienced in treating it. Learn how to find, read and assess research/publications. Find other patients and learn from each other's experiences. #patientchat
Jamie Roger @JamieRoger8
@yourgpsdoc How do I get to this? I'd be interested in watching. #patientchat
Inspire @teaminspire
RT @Rose_of_Sharon8: @patientchat It's important that everyone understands that they need to be proactive in understanding their condition…
Patient Chat @patientchat
RT @Rose_of_Sharon8: @patientchat It's important that everyone understands that they need to be proactive in understanding their condition…
Patient Empowerment @power4patients
T4: Part of it is explaning WHY it's critical to be #empowered & helping them understand how dramatically outcomes can change (for the better!) when they become empowered. @JBBC breaks it down here: https://t.co/eFRsY3pDGW #patientchat
Jamie Roger @JamieRoger8
RT @BarbyIngle: T4. To inspire others to be empowered in their health, I live my best life and follow any advice myself that I would give t…
Patient Empowerment @power4patients
RT @Rose_of_Sharon8: @patientchat It's important that everyone understands that they need to be proactive in understanding their condition…
Being Dense @BreastDense
@patientchat Learn all you can about your own particular illness, if possible join a patient advocacy organisation that specialises in it. Ask lots of questions when visiting Specialist Drs - share your research with them. #patientchat
IFFGD @IFFGD
@patientchat A4 Leading by example can help family members, friends, and others. If you are openly empowered and proactive about your own health, this can encourage your loved ones to take greater interest in theirs. #patientchat
Patient Empowerment @power4patients
RT @BarbyIngle: T4. To inspire others to be empowered in their health, I live my best life and follow any advice myself that I would give t…
Jamie Roger @JamieRoger8
RT @power4patients: T4: Part of it is explaning WHY it's critical to be #empowered & helping them understand how dramatically outcomes can…
IFFGD @IFFGD
RT @abridgedtheblog: #patientchat t4: being more open about my illness and the challenges I’ve faced (especially as an undiagnosed/rare dis…
Your GPS Doc, LLC @yourgpsdoc
@JamieRoger8 https://t.co/kynNvvSCnF Every Monday at 8pm EST. I'd love for all of you to join me! #patientchat
IFFGD @IFFGD
RT @BreastDense: @patientchat Learn all you can about your own particular illness, if possible join a patient advocacy organisation that sp…
Maya Northen Augelli @mayanorthen
I LOVE the phrase "Chief of Staff of your own medical team." #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @IFFGD: @patientchat A4 Leading by example can help family members, friends, and others. If you are openly empowered and proactive about…
Patient Empowerment @power4patients
@stage4kelly This is so critical! #patientchat
IFFGD @IFFGD
RT @mayanorthen: A3: Find a community (either official or unofficial) of others with your illness. It helps to know you're not alone, and o…
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T4: Part of it is explaning WHY it's critical to be #empowered & helping them understand how dramatically outcomes can…
Patient Empowerment @power4patients
RT @yourgpsdoc: @JamieRoger8 https://t.co/kynNvvSCnF Every Monday at 8pm EST. I'd love for all of you to join me! #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 I'll be in Boston area in June for the #OvernightWalk too, so I might be able to pop into some places around the area/on the way to touch base personally in advance, which would be amazing! #patientchat #makingplans
Jamie Roger @JamieRoger8
RT @yourgpsdoc: @JamieRoger8 https://t.co/kynNvvSCnF Every Monday at 8pm EST. I'd love for all of you to join me! #patientchat
Patient Chat @patientchat
#patientchat
Kevin Freiert @K_SalemOaks
RT @BarbyIngle: T4. To inspire others to be empowered in their health, I live my best life and follow any advice myself that I would give t…
Patient Chat @patientchat
Topic 5 (T5:) coming up... #patientchat https://t.co/950AJPZclr
Jamie Roger @JamieRoger8
@mayanorthen I live about two hours from Boston, if you travel this way, we have a spare bedroom thats available. #patientchat #community
Ody_O @OdyO11
A4: Tell them to trust their own body perception. If you feel that something is not right, keep searching for answers. #patientchat
Brad C @bcowdin34
RT @TuftsB: A3 - Best thing I did at diagnosis was to not go into fetal position, say "why me?"and hide that I had cancer. I reached out,…
Patient Chat @patientchat
T5: How can @patientchat and @power4patients help you be more empowered in 2019? #patientchat https://t.co/QwHdsA4jBS
Being Dense @BreastDense
@patientchat Make a list of 5 things that bring you joy and calm. Schedule at least 3 of them (or all) into each week of the year ahead. Find your happy place and go there as often as you can. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: How can @patientchat and @power4patients help you be more empowered in 2019? #patientchat https://t.co/QwHdsA4jBS
Mighty Casey Quinlan @MightyCasey
<runs in MAD late> HAAAIIIII! Whaddi miss? <reads furiously> #patientchat
Jamie Roger @JamieRoger8
Keep doing #patientchat. Maybe on the off weeks we can do the open discussion like we did a few months ago. That would keep the discussion going every week and maybe some people who don't always remember to join will be present. #patientchat
Heather McCullen @H_SalemOaks
RT @JamieRoger8: Keep doing #patientchat. Maybe on the off weeks we can do the open discussion like we did a few months ago. That would…
Patient Empowerment @power4patients
@BreastDense @patientchat Love this. I'm going to start today! #patientchat
Thomas Dahlborg, Sr. @tdahlborg
RT @TuftsB: A3 - Best thing I did at diagnosis was to not go into fetal position, say "why me?"and hide that I had cancer. I reached out,…
Maya Northen Augelli @mayanorthen
@JamieRoger8 Ah where? DEFINITELY going to work on the road trip coming your way to meet up! #patientchat
Jamie Roger @JamieRoger8
@MightyCasey It's been a good chat, hope you are able to catch up! #patientchat Nice to see you!
Ody_O @OdyO11
RT @Rose_of_Sharon8: @patientchat It's important that everyone understands that they need to be proactive in understanding their condition…
Your GPS Doc, LLC @yourgpsdoc
T5: Keep doing what you're doing! You provide a wealth of useful information and #patientchat is a great way to connect with others, feel empowered, and get great tips. #patientchat
Patient Chat @patientchat
RT @BreastDense: @patientchat Make a list of 5 things that bring you joy and calm. Schedule at least 3 of them (or all) into each week of t…
Maya Northen Augelli @mayanorthen
@JamieRoger8 by the way you can DM that if you don't want to tweet out your home town to everyone lol. #patientchat
Jamie Roger @JamieRoger8
@mayanorthen In CT, along the shoreline. #patientchat
Cameron J. Navy @navy_cameron
RT @BarbyIngle: T4. To inspire others to be empowered in their health, I live my best life and follow any advice myself that I would give t…
abridged @abridgedtheblog
T5: #patientchat I appreciate the @patientchat and @power4patients community because it connects providers and patients - a unique space for open dialog and info sharing.
Barby Ingle 📣 @BarbyIngle
T5. Continue topical chats and convos to share knowledge, motivation, determination and support for the health community. #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 Ah! That's excellent, that's an area I'd love to visit! #patientchat
Mary P. Pettigrew @pettigrew66
RT @patientchat: T4: What can you do to encourage friends, family, and others to be more empowered in their health? #patientchat https://t.…
Maya Northen Augelli @mayanorthen
A5: YES! The community, the chats, the support and motivation are amazing! #patientchat
abridged @abridgedtheblog
T5: #Patientchat this might exist but if not, I would love to see the group crowdsource some favorite resources (creating documents like favorite tracking apps, or best practices for appointments - both or and provider side)
Ody_O @OdyO11
RT @yourgpsdoc: T3: Learn all that you can about your illness. You will be the expert and are just as important as the doctor and others on…
Mighty Casey Quinlan @MightyCasey
CLIFF'S NOTES FROM YOURS TRULY: A1: <have you MET me? I'm kinda empowered, on blast, 24/7/365> A2: Stickin' w/teaching clinical team participatory medicine; also stickin' w/2018 #keto + #swimming regimen A3: Find your evidence-based #epatient tribe! #patientchat
Kevin Freiert @K_SalemOaks
T5: Partner with other organizations. There is a wonderful movement going on, let's avoid fragmentation of effort. #patientchat #pinksocks @salemoaks @S4PM @savvy_coop @clara_health
Bob Tufts @TuftsB
A5 - it is difficult and expensive for patients to attend conferences. When you or members of the community go, act as our eyes and ears at these events, make sure thst the patient voice is heard. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @K_SalemOaks: T5: Partner with other organizations. There is a wonderful movement going on, let's avoid fragmentation of effort. #pati
Savanna @SavannaBraun
RT @beth_morton: Find their patient community online, on social media. Use them as resources. Learn everything you can from trusted sources…
Annette McKinnon @anetto
T5 It might be good to have a chat about the #NextSteps. What you do after you are comfortable with your own disease and want to change aspects of the health care and health delivery system. #patientchat
Patient Chat @patientchat
@abridgedtheblog We created a Path to Empowerment that shares these resources in our Empowered #patientchat Facebook group. You can join here: https://t.co/WanYPmwChh :)
Your GPS Doc, LLC @yourgpsdoc
@TuftsB Excellent point! #patientchat
Being Dense @BreastDense
@patientchat Tell your story. We learn from each other's experiences. Awareness is the precursor for change and we can never be over educated when it comes to our health #patientchat
Mighty Casey Quinlan @MightyCasey
Cliff's Notes Part Deux: A4: Uhhh, that's kinda what I do all day, ever' day, on blast. Ref A1 😜 A5: Since @power4patients lets me write for their site ... WE GOT THIS! #patientchat
abridged @abridgedtheblog
RT @patientchat: @abridgedtheblog We created a Path to Empowerment that shares these resources in our Empowered #patientchat Facebook group…
Patient Chat @patientchat
@anetto Great idea! Will keep in mind for 2019 #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
Sharon Rose Nissley @Rose_of_Sharon8
RT @TuftsB: A5 - it is difficult and expensive for patients to attend conferences. When you or members of the community go, act as our eyes…
abridged @abridgedtheblog
Ct: thanks for a great #patientchat, hope everyone’s 2018 is off to a good start.
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @patientchat: T1: What are some things you can do today that will make you feel empowered all year long? #patientchat https://t.co/FCUbx…
Patient Empowerment @power4patients
@abridgedtheblog We created a resource guide "The Path to Patient Empowerment". It's meant to be a guide that we keep adding to. Let us know what you think and what we should add: https://t.co/Dj6LOCcUkS #patientchat
Mighty Casey Quinlan @MightyCasey
More context on A3: take a look at @healthhashtags to see where condition community for your new dx gathers on Twitter. Look at who are most vocal in patient community in that condition community. Also, DO NOT trust Facebook re patient communities. <see next for why> #patientchat
Your GPS Doc, LLC @yourgpsdoc
CT: There are many ways to be empowered- ask questions, learn all you can about your disease, recognize you are the expert for your body, connect with others, partner with healthcare professionals who listen to you and value your input. #patientchat
Patient Empowerment @power4patients
RT @MightyCasey: More context on A3: take a look at @healthhashtags to see where condition community for your new dx gathers on Twitter. Lo…
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat #patientchat @Srotberg15 reminded me to be honest about how I'm doing medically & emotionally. I was also reminded to find calm and peace, and that there are so many others in this thoughtful understanding patient community who work hard to make a difference 4 the greater good.
TC Myburgh @TCMyburgh
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
Ody_O @OdyO11
#patientchat I learned today that #patientchat takes place at this time. :) Hello everybody! Nice to meet you here!
Patient Chat @patientchat
CT: In 2019 we are thinking of starting something new for #patientchat to keep empowerment in mind in between chats - a book club! POLL: Would you be up for a #patientchat book club?
Mighty Casey Quinlan @MightyCasey
More on A3: in re Facebook, their #dataprivacy f*&kery, specific to health/patient data shared in Closed groups, has put people's data out in the wild/open market, disclosing PHI without consent, for $$, since jump. So NOT FACEBOOK. #patientchat #cyberwoke
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T1: #PatientChat don't overly pressure myself- there's a storm system aggrivating my medical problems, real injuries are thusly much easier now.
Bob Tufts @TuftsB
CT - No matter what disease we have , we all have experiences regarding care ,cost and comfort that can be shared and help others in need. Pay it forward. #patientchat
Patient Chat @patientchat
@OdyO11 Hi there! We're here every other Friday at 1pm ET | 10am PT - hope to see you again! #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime.
Mighty Casey Quinlan @MightyCasey
HMU if you want more info. Follow #cyberwoke to watch ongoing discussion of issue, and our search for solutions. #patientchat
Nick Posford @nickposford
@patientchat @power4patients A3 Make good use of the many excellent patient organisations and health charities, their information, forums, groups etc. #patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour.
Sharon Rose Nissley @Rose_of_Sharon8
@Srotberg15 @patientchat I am doing alright, thank you! A day of rest on Fridays is good for the chronic body and soul. I hope you are as well. I never knew #patientchat existed each Friday! I guess that's another thing I learned! @patientchat
Your GPS Doc, LLC @yourgpsdoc
@patientchat As long as the book is available on Audible! #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A2: #PatientChat mindfulness (strategy), tools- adaptive equipment for getting my goals/tasks accomplished
Your GPS Doc, LLC @yourgpsdoc
@patientchat Thanks for another awesome #patientchat!
Patient Chat @patientchat
We hope you all can join us again in two weeks for the next #patientchat on January 25th https://t.co/sbIlCbBRw0
Stacey Tinianov @coffeemommy
WOW. Stumbled upon the tailend of #patientchat and found this gem. Love it and widely applicable advice for everyone regardless of health status methinks. #QoL #selfcare
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
John Novack @J2Novack
RT @BreastDense: @patientchat Make a list of 5 things that bring you joy and calm. Schedule at least 3 of them (or all) into each week of t…
John Novack @J2Novack
RT @patientchat: We hope you all can join us again in two weeks for the next #patientchat on January 25th https://t.co/sbIlCbBRw0
Mighty Casey Quinlan @MightyCasey
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A3: don't be bitter- be patient with your likely struggling medical team- in as much as they in part may infantilize you, it is them that need careful nurturing & bitterness can be another barrier to treatment #PatientChat
Maya Northen Augelli @mayanorthen
LOVE it!! #patientchat
Patient Empowerment @power4patients
RT @patientchat: We hope you all can join us again in two weeks for the next #patientchat on January 25th https://t.co/sbIlCbBRw0
Jamie Roger @JamieRoger8
Thank you #patientchat @patientchat @power4patients for todays chat and starting off the new year #Empowered Hope everyone is inspired to take control of the new year, and everything that it brings your way.
Being Dense @BreastDense
RT @coffeemommy: WOW. Stumbled upon the tailend of #patientchat and found this gem. Love it and widely applicable advice for everyone rega…
Being Dense @BreastDense
RT @mayanorthen: LOVE it!! #patientchat https://t.co/TvV1Ho7nCE
Being Dense @BreastDense
@BarbyIngle I have just appointed myself 'Chief of staff' - love this idea #patientchat
Being Dense @BreastDense
RT @JamieRoger8: Thank you #patientchat @patientchat @power4patients for todays chat and starting off the new year #Empowered Hope everyo…
Vera Rulon FAHIMA @vrulon
#patientchat sorry to have missed the chat today! Had a client call I needed to attend. Looking forward to a recap!!! @patientchat
Laura Sweet @laurasweetjane
RT @stage4kelly: T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s…
Shannon @PatientObservr
RT @beth_morton: Hello! Beth, tweeting/lurking from frigid Vermont. As 2019 starts, definitely rethinking how I can empower my patient expe…
#patientchat content from Twitter.