#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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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.
Carolyn Holmes @HolmesCarolyn23
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Seth Rotberg @Srotberg15
@K_SalemOaks @marchmadness @S4PM @WestchesterBio @GlobalGenes For someone like myself who loves March Madness, I will make sure to be fully focused on today's #patientchat 🙌
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients, and I’m looking forward to today’s #patientchat with @Srotberg15
Jamie Roger @JamieRoger8
@fireflyrn84 Get all the rest you need! #patientchat
Patient Chat @patientchat
Excited to have guest @Srotberg15, a rare disease advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community, co-hosting today’s #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@Srotberg15 here: https://t.co/LU6GVBkYLX https://…
Inspire @teaminspire
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Patient Chat @patientchat
You can find out more about @Srotberg15 and his work here: https://t.co/5CyFW4PV9h #patientchat
Patient Empowerment @power4patients
RT @patientchat: Excited to have guest @Srotberg15, a rare disease advocate and motivational speaker who is passionate about bringing his p…
Jamie Roger @JamieRoger8
Hello everyone! Jamie from CT and @salemoaks joining #patientchat today Hoping for hte spring weather to return this weekend!
Debbie Popp @DPoppGP
@patientchat Hi my name is Debbie a Gastroparesis patient and advocate. Thank you for hosting this chat! #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Patient Empowerment @power4patients
RT @patientchat: You can find out more about @Srotberg15 and his work here: https://t.co/5CyFW4PV9h #patientchat
Kevin Freiert @K_SalemOaks
Kevin from CT here. Feeling accomplished. @SalemOaks just went live with our second online course this morning. https://t.co/GAHYfd0UDh #patientchat #pinksocks #HCLDR @S4PM @WestchesterBio
ShereeseM, MS/MBA @ShereesePubHlth
Hello all I'm @ShereesePubHlth, #HealthIT Strategist and fierce patient advocate, mostly in pediatrics. #patientchat
Seth Rotberg @Srotberg15
Hi Everyone! Excited to be here as a guest host. I am a patient advocate and motivational for the Huntington’s Disease community, board member for @HDYOFeed, and Partnerships Manager for the healthcare social network @Inspire. #patientchat
Seth Rotberg @Srotberg15
Originally from outside of Boston but currently live in DC. I am a big sports’ fan and love @marchmadness. I promise not to be as distracted while the games go on 😄 #patientchat
Inspire @teaminspire
@patientchat Hello to the #patientchat community, John Novack here from Inspire.
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
Good morning #patientchat! I’m Heather, person living with Cowden Syndrome and Lhermitte-duclos Disease. Reading & resting today. #pten #btsm #raredisease
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Rozana Zaman @ZamanRozana
I'll be at the Empowered #patientchat on Fri 3/22 1pm ET. Join me! https://t.co/UKFFqn3cTn via @power4patients
Jamie Roger @JamieRoger8
RT @K_SalemOaks: Kevin from CT here. Feeling accomplished. @SalemOaks just went live with our second online course this morning. https:…
Seth Rotberg @Srotberg15
@patientchat @power4patients Thanks again for having me join as a guest host! #patientchat
Seth Rotberg @Srotberg15
RT @patientchat: Excited to have guest @Srotberg15, a rare disease advocate and motivational speaker who is passionate about bringing his p…
Jamie Roger @JamieRoger8
@ShereesePubHlth I've missed your fierce ness lately. I haven't been on twitter as much in the last month or two. I hope you are well!! #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@fireflyrn84 Heal well #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Chris Anselmo @Chris_Anselmo
RT @Srotberg15: Today is the day! Do you think being an advocate can improve your own patient journey? Let's discuss this at 1pmET during t…
Jamie Roger @JamieRoger8
@teaminspire @patientchat John, how have you been? Are you excited for you trip coming up to see your daughter??? #patientchat
Patient Empowerment @power4patients
@K_SalemOaks @SalemOaks @S4PM @WestchesterBio Congrats on launching your 2nd on-line course! Looking forward to checking it out #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Applying Patient Advocacy Initiatives to Your Patient Journey https://t.co/LU6GVBkYLX https://t.co/FaZjnIIbjw
Heather McCullen @H_SalemOaks
Hi #patientchat! Heather joining from outside of Ann Arbor. @SalemOaks' new course is out TODAY! We're pretty excited about it.
Polly Marie Fielding @FieldingPolly
@patientchat Hi I'm Polly & new to this chat #patientchat
Seth Rotberg @Srotberg15
RT @patientchat: Today's #patientchat topic is Applying Patient Advocacy Initiatives to Your Patient Journey https://t.co/LU6GVBkYLX https:…
Rozana Zaman @ZamanRozana
@patientchat @power4patients @Srotberg15 Hi all I am Rozana and I am really excited for today's #patientchat
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Bob Tufts @TuftsB
Hi. Bob Tufts from NYC checking in. #patientchat
Jamie Roger @JamieRoger8
@Chris_Anselmo hope you can tune in for #patientchat it's going on RIGHT NOW!
Becky Brandt RN @bbhomebody
Hi everyone 🖐 I'm Becky, RN, #RareDisease patient, and advocate from Washington state. So glad its Spring. Shout out to my amazing partner in advocacy @lisadbudzinski @Cpnervecenter #patientchat https://t.co/CZfpFD5SB5
Chris Anselmo @Chris_Anselmo
@JamieRoger8 This time, i can! #patientchat
Inspire @teaminspire
RT @patientchat: Today's #patientchat topic is Applying Patient Advocacy Initiatives to Your Patient Journey https://t.co/LU6GVBkYLX https:…
Jamie Roger @JamieRoger8
@FieldingPolly @patientchat Thanks fo joining us today! #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Rozana Zaman @ZamanRozana
RT @patientchat: Excited to have guest @Srotberg15, a rare disease advocate and motivational speaker who is passionate about bringing his p…
Jamie Roger @JamieRoger8
@Chris_Anselmo WOOO, you made it! #patientchat
Seth Rotberg @Srotberg15
@FieldingPolly @patientchat Welcome Polly! Once you start these you’ll never want to miss another one. Whenever I do I definitely get the fomo 🤣 #patientchat
Patient Chat @patientchat
T1: What is your advice for patients wanting to become advocates? #patientchat https://t.co/nPnQn1G82O
Becky Brandt RN @bbhomebody
@FieldingPolly @patientchat Hi Polly, I'm Becky. Nice to meet you😀🌹 #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@H_SalemOaks @SalemOaks What’s that? #patientchat
Patient Empowerment @power4patients
@FieldingPolly @patientchat Welcome! We're glad that you've joined us for today's chat. Let us know if you have feedback, ideas or suggestions. We're into continuous improvement :) #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@FieldingPolly @patientchat Welcome! #patientchat
Polly Marie Fielding @FieldingPolly
@Srotberg15 @patientchat Thank you Seth #patientchat
Inspire @teaminspire
RT @Srotberg15: Today is the day! Do you think being an advocate can improve your own patient journey? Let's discuss this at 1pmET during t…
Polly Marie Fielding @FieldingPolly
@JamieRoger8 @patientchat Thank you Jamie #patientchat
Chris Anselmo @Chris_Anselmo
Hello everyone, my name is Chris Anselmo and I am a patient living with limb-girdle muscular dystrophy type 2B (LGMD2B). Over the last few years i have become a patient advocate - accidentally! - but have loved every minute of it. Nice to meet everyone! #patientchat
Kevin Freiert @K_SalemOaks
T1: Yes. You CAN do this. #patientchat #pinksocks #HCLDR @S4PM https://t.co/kAiHVVCsON
Polly Marie Fielding @FieldingPolly
@bbhomebody @patientchat And you too Becky #patientchat
Seth Rotberg @Srotberg15
T1: Anyone can become an advocate and it’s all about sharing your patient journey. Know that your story is just as empowering as anyone else in the health space. #patientchat
Sommer Consulting @SommerConsults
RT @Srotberg15: Today is the day! Do you think being an advocate can improve your own patient journey? Let's discuss this at 1pmET during t…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A1: JUST DO IT. Get online, try to connect with others, ask Qs. If you don’t get it, ask others. I’m still trying to understand exactly what an advocate does myself. #patientchat #btsm #pten
Chris Anselmo @Chris_Anselmo
RT @patientchat: T1: What is your advice for patients wanting to become advocates? #patientchat https://t.co/nPnQn1G82O
Jamie Roger @JamieRoger8
I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for) . #passion makes a huge difference. #patientchat
Kevin Freiert @K_SalemOaks
RT @JamieRoger8: I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for)…
Patient Chat @patientchat
@FieldingPolly Hi Polly! So happy you could join us today and very nice to meet you #patientchat
Heather McCullen @H_SalemOaks
@ZHeatherChamp @SalemOaks https://t.co/MAab01vO8X The second course, Open Water Part 1: Selecting a Research Project, is the new one :) #patientchat
Patient Empowerment @power4patients
RT @ZHeatherChamp: A1: JUST DO IT. Get online, try to connect with others, ask Qs. If you don’t get it, ask others. I’m still trying to und…
Patient Empowerment @power4patients
RT @Srotberg15: T1: Anyone can become an advocate and it’s all about sharing your patient journey. Know that your story is just as empoweri…
Polly Marie Fielding @FieldingPolly
@patientchat Thank you #patientchat
Patient Chat @patientchat
@Chris_Anselmo Hi Chris! Glad to have you on today's chat #patientchat
Seth Rotberg @Srotberg15
@Chris_Anselmo Glad you joined, especially since I know it may be tough for you when the @RedSox start back up 😂 #patientchat
Melissa VanHouten @melissarvh
Just do it. Just take that first step. Start as slowly or as small as you would like & see where it leads you. #PatientChat
Patient Chat @patientchat
RT @JamieRoger8: I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for)…
Chris Anselmo @Chris_Anselmo
T1: Being a patient advocate doesn't require special skills that only a select few have. Everyone's patient story matters and has the power to help others. You don't have to be a polished communicator from Day 1. it comes with experience! #patientchat
Seth Rotberg @Srotberg15
@ZHeatherChamp Couldn’t agree more! Never hesitate to ask questions and to learn from others! #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@JamieRoger8 Same here, Jamie. I'm busy but well. How about you? #patientchat
Seth Rotberg @Srotberg15
RT @JamieRoger8: I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for)…
Heather McCullen @H_SalemOaks
There is no required quantity of advocacy you're required to do. Don't feel bad if you need to pull back and put your health first. #patientchat
Becky Brandt RN @bbhomebody
T1 Start posting/tweeting about things you know regardong your disease. Share important articles, news, etc and introduce yourself across social media. Patient Advocates are some of the nicest & most outgoing people I know. @Cpnervecenter #patientchat
Jamie Roger @JamieRoger8
Great Advice. No one expects you to be an expert in anything other than your lived experiences when you first start out. #embrace the #journey #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @bbhomebody: T1 Start posting/tweeting about things you know regardong your disease. Share important articles, news, etc and introduce y…
Seth Rotberg @Srotberg15
👍🙌💪 #patientchat
Bob Tufts @TuftsB
@patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
Chris Anselmo @Chris_Anselmo
RT @JamieRoger8: I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for)…
ReedsBooks @LReedsbooks
@patientchat T1: Get connected with organizations that support your diagnosis. Get informed. Become active on social media #patientchat
Patient Chat @patientchat
RT @melissarvh: Just do it. Just take that first step. Start as slowly or as small as you would like & see where it leads you. #PatientChat
Kevin Freiert @K_SalemOaks
RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @JamieRoger8: I think it's important to embrace your own story and realize what is important for you (in terms of what to advocate for)…
Chris Anselmo @Chris_Anselmo
RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
Melissa VanHouten @melissarvh
RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
Patient Empowerment @power4patients
A1: Be an active participant in treatment decisions. For some that means being more vocal while for others it's a quieter approach. Whichever your style, embrace it and be empowered! #patientchat
Patient Empowerment @power4patients
RT @LReedsbooks: @patientchat T1: Get connected with organizations that support your diagnosis. Get informed. Become active on social media…
Inspire @teaminspire
RT @Chris_Anselmo: T1: Being a patient advocate doesn't require special skills that only a select few have. Everyone's patient story matter…
Patient Empowerment @power4patients
RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
ISurvivor Lisa Deck @lbdeck
@patientchat I encourage you to realize that sharing your story not only helps others but also makes you feel powerful. #patientchat
Jamie Roger @JamieRoger8
@ShereesePubHlth I'm doing well, glad the seasons are finally changing. I do much better when I can get outdoors more. Just planning some upcoming conferences for @SalemOaks and our next travel/ life plans with my husband. #liveyourbestlife #patientchat #getoutdoors
Patient Empowerment @power4patients
@TuftsB @patientchat Well said, Bob! #patientchat
Chris Anselmo @Chris_Anselmo
RT @LReedsbooks: @patientchat T1: Get connected with organizations that support your diagnosis. Get informed. Become active on social media…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@Srotberg15 And I still don’t get it. I want to advocate and travel to places like I see others do, but because destitute I don’t feel like im actually an advocate. #patientchat
Patient Empowerment @power4patients
RT @Srotberg15: 👍🙌💪 #patientchat https://t.co/A7Hq2pxrZj
Patient Empowerment @power4patients
RT @Chris_Anselmo: T1: Being a patient advocate doesn't require special skills that only a select few have. Everyone's patient story matter…
Maya Northen Augelli @mayanorthen
A1: Be authentic, and be yourself. You bring to your advocacy what nobody does - your personal experiences, knowledge, stories. Know that YOU (as in you, personally, as you are) are the most valuable piece of you advocacy efforts. #patientchat
Seth Rotberg @Srotberg15
RT @lbdeck: @patientchat I encourage you to realize that sharing your story not only helps others but also makes you feel powerful. #patien
Becky Brandt RN @bbhomebody
@JamieRoger8 Agreed 100%! We all know our own story the best. #patientchat
Debbie Popp @DPoppGP
T1: Start with advocating for yourself. Begin having open lines of communication with your medical team. Research every treatment, ask many questions. Share experiences with social media communities. #patientchat
Rozana Zaman @ZamanRozana
@patientchat Leading a healthy lifestyle... exercise.... believe in yourself.... helping others ! #patientchat These are my advice for patients wanting to become advocates!!!!
Patient Chat @patientchat
RT @lbdeck: @patientchat I encourage you to realize that sharing your story not only helps others but also makes you feel powerful. #patien
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/LU6GVBkYLX #patientchat
Patient Empowerment @power4patients
RT @lbdeck: @patientchat I encourage you to realize that sharing your story not only helps others but also makes you feel powerful. #patien
Jamie Roger @JamieRoger8
#makeconnections with those around you. Often enough we don't share our story because we don't think we will be heard. #listen to others, tell them your #story. #relationships #humanity #patientchat
Patient Chat @patientchat
T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR7PVjq1a
Seth Rotberg @Srotberg15
@ZHeatherChamp I could imagine it can be frustrated but there are other ways to advocate without being there in person. This could be blogging, podcasts, articles, and social media. #patientchat
ReedsBooks @LReedsbooks
@lbdeck @patientchat T1 - I agree. Getting informed not only helps you feel powerful, it puts you more in control and makes you a participant in your healthcare. #patientchat
Patient Empowerment @power4patients
RT @mayanorthen: A1: Be authentic, and be yourself. You bring to your advocacy what nobody does - your personal experiences, knowledge, sto…
Maya Northen Augelli @mayanorthen
Connecting with others is huge. It's what moved me from being "someone sharing my personal story for whoever cared to listen" to actively being an advocate. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR…
Chris Anselmo @Chris_Anselmo
@Srotberg15 @RedSox I put this one in my calendar. If I couldn't make today, I am hopeless forever! #patientchat
Rozana Zaman @ZamanRozana
@Srotberg15 Yes! I do think that anyone can become an advocate #patientchat @Srotberg15
Patient Empowerment @power4patients
RT @mayanorthen: Connecting with others is huge. It's what moved me from being "someone sharing my personal story for whoever cared to list…
Melissa VanHouten @melissarvh
Good point. I tend to think of advocacy at the community level, but self-advocacy is vital - and can grow into community advocacy if you are so inclined. #PatientChat
ReedsBooks @LReedsbooks
@patientchat T2: Listening and sharing stories. Helps to realize that you're not alone. #patientchat
Seth Rotberg @Srotberg15
T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to leave the audience. More importantly, what action plan do you want your audience to take after sharing your story. #patientchat
Trisha Bundy @bundytr5
RT @Chris_Anselmo: T1: Being a patient advocate doesn't require special skills that only a select few have. Everyone's patient story matter…
Bob Tufts @TuftsB
@ZHeatherChamp @Srotberg15 Do whst you can when you can. Use social media to sptead your story, follow conference twiiter discussions to cinnrct with others on line. #patientchat
Marni Cartelli @Purrfectly_Rare
A.1 #patientchat Do it! As a patient U already have more "advocacy" skills than you realize since you probably have been fighting for some sort of medical care all along It can be scary to try something new but it can b so rewarding as well
Trisha Bundy @bundytr5
RT @melissarvh: Just do it. Just take that first step. Start as slowly or as small as you would like & see where it leads you. #PatientChat
Trisha Bundy @bundytr5
RT @H_SalemOaks: There is no required quantity of advocacy you're required to do. Don't feel bad if you need to pull back and put your heal…
Trisha Bundy @bundytr5
RT @bbhomebody: T1 Start posting/tweeting about things you know regardong your disease. Share important articles, news, etc and introduce y…
ISurvivor Lisa Deck @lbdeck
@patientchat I’m Lisa- a stroke survivor & #Moyamoya patient, @American_Stroke volunteer, @RareNewEngland advocate and @SistersAtHeart3 non-profit founder. Happy to be here for the #patientchat toda. #PatientExperience
Jamie Roger @JamieRoger8
I wrote out the worst (in terms of my mental state) part of my story and used that to help me look forward. You don't need to be perfect, just be true to yourself. And if you need some #selfcare along the way, take a step back and do just that. #patientchat
Trisha Bundy @bundytr5
RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat
Kevin Freiert @K_SalemOaks
T2: Listen. Then act with empathy. #patientchat #pinksocks #HCLDR @S4PM
Polly Marie Fielding @FieldingPolly
@JamieRoger8 I would say that someone with lived experience of a condition is an 'expert' in some sense & well placed to impart understanding to others & to empathize with those that have that diagnosis they know what it is like, firsthand, to live with #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@Srotberg15 I’ve got two of those at least! Blog & SM. #patientchat
Patient Chat @patientchat
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Jamie Roger @JamieRoger8
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Marni Cartelli @Purrfectly_Rare
@Chris_Anselmo @JamieRoger8 I almost fell over when I saw you on this chat! Be still my heart you made it Wait the fact both of us remembered the same chat...we need to play the lotto! #patientchat
ISurvivor Lisa Deck @lbdeck
@patientchat Be honest. Be vulnerable. Listen and connect. Be open to all oppprtunities. All are needed for meaningful, successful #advocacy work. #patientchat
Olive O'Connor @oliveblogs
RT @LReedsbooks: @patientchat T1: Get connected with organizations that support your diagnosis. Get informed. Become active on social media…
Seth Rotberg @Srotberg15
Great point! Definitely listen and also get tips from fellow advocates. #patientchat
Debbie Popp @DPoppGP
T2: Being tenacious, not allowing negativity to discourage you I have found critical in advocacy. Believing you can is half the battle! #patientchat
Patient Empowerment @power4patients
RT @Purrfectly_Rare: A.1 #patientchat Do it! As a patient U already have more "advocacy" skills than you realize since you probably have be…
Patient Empowerment @power4patients
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Trisha Bundy @bundytr5
RT @mayanorthen: A1: Be authentic, and be yourself. You bring to your advocacy what nobody does - your personal experiences, knowledge, sto…
Patient Empowerment @power4patients
RT @melissarvh: Good point. I tend to think of advocacy at the community level, but self-advocacy is vital - and can grow into community ad…
Trisha Bundy @bundytr5
RT @FacesofGP: T1: Start with advocating for yourself. Begin having open lines of communication with your medical team. Research every t…
Melissa VanHouten @melissarvh
T2 I am not sure I think in terms of tactics, but I do think it is important to truly believe in your cause, to have a passion for it, and to understand what it is you seek (your goal/s) & why this all matters. #PatientChat
Polly Marie Fielding @FieldingPolly
@K_SalemOaks @S4PM Agree. True listening is a skill that some medical professionals need to develop much further #patientchat
Maya Northen Augelli @mayanorthen
Finding communities - or even just a couple of people w/ shared goals/interests in advocacy - has been a big help. They support, both in my advocacy efforts, as well as in life in general. Support goes a long way, and keeps me going during flareups/rough times. #patientchat
Kevin Freiert @K_SalemOaks
T2: Learn, Learn, Learn. Make it a point to learn something new about this role every day. Learn about disease, current treatments, R&D, policy, payers, etc. #patientchat #pinksocks #HCLDR @S4PM
Inspire @teaminspire
@TuftsB @ZHeatherChamp @Srotberg15 Good point. One way to keep tabs on conferences/events of interest to individual advocates is via the searchable Healthcare Hashtag Project page: https://t.co/kXffFENhro (HT @symplur). #patientchat
Melissa VanHouten @melissarvh
RT @FacesofGP: T2: Being tenacious, not allowing negativity to discourage you I have found critical in advocacy. Believing you can is half…
Bob Tufts @TuftsB
A2: Learn to do SPAR - set up, problem, action, result. If focuses your narrative and makes you more "professional" - and people will invite you/solicit your opinion. #patientchat
Patient Empowerment @power4patients
RT @teaminspire: @TuftsB @ZHeatherChamp @Srotberg15 Good point. One way to keep tabs on conferences/events of interest to individual advoca…
Rozana Zaman @ZamanRozana
@patientchat Feeling the pain of others and listening to others stories really makes us realize that we are not alone! #patientchat @Srotberg15 #power4patients
Patient Empowerment @power4patients
RT @K_SalemOaks: T2: Learn, Learn, Learn. Make it a point to learn something new about this role every day. Learn about disease, current…
Patient Empowerment @power4patients
RT @mayanorthen: Finding communities - or even just a couple of people w/ shared goals/interests in advocacy - has been a big help. They su…
Seth Rotberg @Srotberg15
RT @teaminspire: @TuftsB @ZHeatherChamp @Srotberg15 Good point. One way to keep tabs on conferences/events of interest to individual advoca…
Inspire @teaminspire
RT @patientchat: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR…
Lori Williams Miller @Lori19Az
RT @lbdeck: @patientchat I encourage you to realize that sharing your story not only helps others but also makes you feel powerful. #patien
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A2: Being consistent in posting and checking the appropriate hashtags. #patientchat
Polly Marie Fielding @FieldingPolly
@mayanorthen Yes & twitter is good for this #patientchat
Patient Empowerment @power4patients
RT @ZamanRozana: @patientchat Feeling the pain of others and listening to others stories really makes us realize that we are not alone! #pa
Seth Rotberg @Srotberg15
RT @mayanorthen: Finding communities - or even just a couple of people w/ shared goals/interests in advocacy - has been a big help. They su…
Chris Anselmo @Chris_Anselmo
T2(1): I have two. 1) Don't be afraid to reach out to other patients whose stories have helped you. They are (usually) very excited to connect with you and will help form your support system going forward. They can also tell you what to do/not to do advocacy-wise #patientchat
Chris Anselmo @Chris_Anselmo
T2(2) The second helpful tactic is to take time to research other patient advocates that inspire you and pay attention to how they communicate. How do they share their story? What specific stories do they tell? How do they persuade? Their example will help you. #patientchat
Melissa VanHouten @melissarvh
RT @teaminspire: @TuftsB @ZHeatherChamp @Srotberg15 Good point. One way to keep tabs on conferences/events of interest to individual advoca…
Seth Rotberg @Srotberg15
@ZamanRozana @patientchat We are all in this together and need to have each other's back! #patientchat
Patient Empowerment @power4patients
RT @Chris_Anselmo: T2(1): I have two. 1) Don't be afraid to reach out to other patients whose stories have helped you. They are (usually) v…
Patient Chat @patientchat
T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW
Jamie Roger @JamieRoger8
GREAT ADVICE! #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@teaminspire @TuftsB @Srotberg15 @symplur Thanks! I do follow @symplur as often as I can. But lately I’m drifting off. Feeling bad - no $ - can’t attend - can’t advocate. #patientchat
Olive O'Connor @oliveblogs
@patientchat Think clearly about what message it is you want people to hear. If you cry while telling your story, that’s okay (we’re only human!) Practice and preach self care; we can’t care for others if we don’t care for ourselves! Lastly, connect with the #advocacy family! #patientchat
Chris Anselmo @Chris_Anselmo
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Chris Anselmo @Chris_Anselmo
RT @patientchat: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR…
Patient Empowerment @power4patients
RT @patientchat: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW
Seth Rotberg @Srotberg15
@Chris_Anselmo Really good point. I always try to see what other advocates are doing and then reach out to them for tips or advice as needed. #patientchat
Marni Cartelli @Purrfectly_Rare
A2. #patientchat B humble & willing to admit what U DONT know Ppl respect some1=genuine & acting like you know things when you dont turns them off &gets U nowhere fast It's ok 2B wrong- but admit it In beginning I was misinformed but I admitted when I was corrected So important!
Bob Tufts @TuftsB
A2: You do not have to become a biochemist to be an advoacte. Become the expert on how it affects your life and those around you. #patientchat
Polly Marie Fielding @FieldingPolly
@FacesofGP I agree. Sadly though some medics take a blinkered approach at times & r not v open to listen to a patient whic is then really frustrating #patientchat
Becky Brandt RN @bbhomebody
T2 Having a partner/colleague is a super way to get things done. Each of you can focus on your skill set & help each other during the bad days. My partner/cofounder of @Cpnervecenter is the amazing @lisadbudzinski . We are much stronger together. 💖👍#patientchat
Chris Anselmo @Chris_Anselmo
RT @patientchat: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW
Olive O'Connor @oliveblogs
RT @Chris_Anselmo: T2(2) The second helpful tactic is to take time to research other patient advocates that inspire you and pay attention t…
Patient Chat @patientchat
RT @oliveblogs: @patientchat Think clearly about what message it is you want people to hear. If you cry while telling your story, that’s ok…
Rozana Zaman @ZamanRozana
@Srotberg15 You are absolutely correct. we all should follow this. #patientchat @Srotberg15
Patient Empowerment @power4patients
RT @TuftsB: A2: You do not have to become a biochemist to be an advoacte. Become the expert on how it affects your life and those around y…
Jamie Roger @JamieRoger8
I started working with @SalemOaks which brought me into this whole community and then shortly after had to embrace my own life journey; having the newfound community helped lift me back up and realize the importance of sharing what I went through. #patientchat
Maya Northen Augelli @mayanorthen
I've also found that as I get further into advocacy, getting out of my comfort zone helps in terms of opportunities. It helps me reach people I wouldn't if I stayed solely where I'm most comfy, and that can help open doors. #patientchat
Trisha Bundy @bundytr5
Writing abt personal experiences expresses our humanity, not only to others but ourselves as well. Gr8 rdg how not alone w/ our challenges. Also therapeutic reread our past writings to see what we have survived already & reminder we can continue doing so... #advocacy #patientchat
ISurvivor Lisa Deck @lbdeck
RT @Purrfectly_Rare: A2. #patientchat B humble & willing to admit what U DONT know Ppl respect some1=genuine & acting like you know things…
Kevin Freiert @K_SalemOaks
T2: If you are in general NYC area next week, you could come to https://t.co/rQaYxIViO7 and make your voice heard #patientchat #pinksocks #HCLDR @S4PM @WestchesterBio https://t.co/XKz07aCFMD
Chris Anselmo @Chris_Anselmo
I don't do well sitting still and doing nothing. After my diagnosis i wanted to get involved in some way. I quickly found that there was a need for identifying more patients with my condition, and realized I could help raise awareness. The rest is history. #patientchat
ReedsBooks @LReedsbooks
@patientchat Wanting to help others. It's such a crazy ride. Believing that by sharing stories, it's possible to give insights and perspective for those that will follow. #patientchat
ISurvivor Lisa Deck @lbdeck
RT @oliveblogs: @patientchat Think clearly about what message it is you want people to hear. If you cry while telling your story, that’s ok…
Olive O'Connor @oliveblogs
RT @melissarvh: T2 I am not sure I think in terms of tactics, but I do think it is important to truly believe in your cause, to have a pass…
Becky Brandt RN @bbhomebody
@Purrfectly_Rare Great point Marni! Honesty & integrity are key! 👍😁 #patientchat
Polly Marie Fielding @FieldingPolly
@patientchat A university showed an interest in having me talk annually to their students about lived-in experience & ways of coping - so validating #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A3: I don’t think I have a “community” per se, but in 2011 at dx my entire life bottomed out. I started my #blog immediately and just try to move forward each day. #patientchat
Debbie Popp @DPoppGP
T3: Watching all the suffering in my community. Hearing stories from so many who felt alone and not heard. Believing that there are other options out there for the finding. Believing my illness was brought to me for a reason, to help others! #patientchat
Kevin Freiert @K_SalemOaks
T3: I am not part of one disease community. But THIS community motivates me all the time. #patientchat #pinksocks #HCLDR @S4PM https://t.co/dcVS7qZO4N
Melissa VanHouten @melissarvh
@mayanorthen I completely agree, Ms. Maya! #PatientChat
Patient Chat @patientchat
So great to see so many new faces on today's #patientchat!
Olive O'Connor @oliveblogs
RT @mayanorthen: I've also found that as I get further into advocacy, getting out of my comfort zone helps in terms of opportunities. It he…
Melissa VanHouten @melissarvh
RT @bundytr5: Writing abt personal experiences expresses our humanity, not only to others but ourselves as well. Gr8 rdg how not alone w/ o…
Seth Rotberg @Srotberg15
T3 Testing positive for Huntington’s Disease (HD) motivated me to get more involved. Last year I spoke at @TEDxNatick and made me realized the importance of advocating for all patients and caregivers no matter what their condition was. #patientchat
Seth Rotberg @Srotberg15
T3 Over time I realized the importance of sharing my story with others on a similar path and trying to inspire or empower others to also get involved within their own community #patientchat
Bob Tufts @TuftsB
A3: I saw people frozen in fear and scared. Addressing their fear, by telling them about my journey and imparting some knowledge was important for me to do. #patientchat
Patient Empowerment @power4patients
T3: Being a #caregiver for my Mom was what inspired me to become an advocate and join @power4patients. She often felt alone, powerless & overwhelmed. I want to try to change that for other patients and care partners. #patientchat
Trisha Bundy @bundytr5
Agree, it's critical to be able to look past negativity and keep focused on your ultimate purpose. #patientchat
Kevin Freiert @K_SalemOaks
T3: First few patient-focused conferences I attended showed me major gaps that shouldn't be hard to bridge. #patientchat #pinksocks #HCLDR @S4PM #patients2019
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: T3: I am not part of one disease community. But THIS community motivates me all the time. #patientchat #pinksocks #HCLD
Trisha Bundy @bundytr5
RT @melissarvh: T2 I am not sure I think in terms of tactics, but I do think it is important to truly believe in your cause, to have a pass…
Polly Marie Fielding @FieldingPolly
@bundytr5 It is therapeutic writing your story & also can inspire others to have hope, I found #patientchat
Patient Empowerment @power4patients
RT @K_SalemOaks: T2: If you are in general NYC area next week, you could come to https://t.co/rQaYxIViO7 and make your voice heard #patie
Rozana Zaman @ZamanRozana
@patientchat Nowadays people have become more lonely as they are more in the so called Social media thing.... I just try to motivate myself and to others that we should be together in real life.....not only in social media....!! #patientchat #power4patient
Sommer Consulting @SommerConsults
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Lydia L. Seiders @lseiders3
RT @Srotberg15: Originally from outside of Boston but currently live in DC. I am a big sports’ fan and love @marchmadness. I promise not to…
Seth Rotberg @Srotberg15
@mayanorthen Be comfortable with the uncomfortable 😊🙌 #patientchat
Lydia L. Seiders @lseiders3
RT @Srotberg15: Hi Everyone! Excited to be here as a guest host. I am a patient advocate and motivational for the Huntington’s Disease comm…
Sherry Reynolds 🌟 @Cascadia
T3 I grew up at the height of the AIDS crisis and lost friends but I knew I had the education, skills, band-width and social standing to make a difference for and with those who were simply struggling to live. #patientchat
Maya Northen Augelli @mayanorthen
A3: I wouldn't say I have one community, but it was a combination of passion for my cause, wanting to help others via advocacy & support, & wanting to connect with others doing the same. #PatientChat
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @melissarvh: T2 I am not sure I think in terms of tactics, but I do think it is important to truly believe in your cause, to have a pass…
ISurvivor Lisa Deck @lbdeck
T3 I originally got involved in the #stroke community because I needed a purpose and #peersupport since I was only 21 years old. Now I #advocate to help others because I can 🙏 #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/LU6GVBkYLX #patientchat
Polly Marie Fielding @FieldingPolly
@power4patients It's great that u do that #patientchat
Jamie Roger @JamieRoger8
@ZamanRozana @patientchat Preach! #patientchat
Sarah DeBord @TheSarahDeBord
T3: When I saw how invaluable the stories and experiences of others with my disease were to me, I knew my story and experience would be invaluable to someone else. Sharing is caring, but it's also empowering to you and others. #patientchat
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @melissarvh: Good point. I tend to think of advocacy at the community level, but self-advocacy is vital - and can grow into community ad…
Olive O'Connor @oliveblogs
@patientchat T3: My four girls have chronic health conditions; hubby had a stroke (age 42); and I cared for my dad who was extremely ill. Also a bit of a crock myself! I’ve lived the journey of trying to get through the system, manage meds etc and wanted (want!) to help others #patientchat
Patient Chat @patientchat
T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG
Patient Chat @patientchat
RT @TheSarahDeBord: T3: When I saw how invaluable the stories and experiences of others with my disease were to me, I knew my story and exp…
ISurvivor Lisa Deck @lbdeck
T3 when diagnosed with #Moyamoya, a #raredisease, I knew I could use my years of experience to help other patients, our community and hopefully find a cure. #PatientChat
Polly Marie Fielding @FieldingPolly
@Srotberg15 The world needs more people like you Seth #patientchat
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @melissarvh: Just do it. Just take that first step. Start as slowly or as small as you would like & see where it leads you. #PatientChat
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @FacesofGP: T1: Start with advocating for yourself. Begin having open lines of communication with your medical team. Research every t…
Patient Empowerment @power4patients
RT @patientchat: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG
Misty Callahan @MistyACallahan
RT @TuftsB: A2: You do not have to become a biochemist to be an advoacte. Become the expert on how it affects your life and those around y…
Sharon Rose Nissley @Rose_of_Sharon8
After diagnosis, I realized that Klippel-Feil syndrome, a rare disease, had no place for advocacy at all! Trying 2 find my own care, led me 2 realize we all needed care & understanding, so I became compelled & passionate to fight for the greater cause. #patientchat @patientchat
Melissa VanHouten @melissarvh
T3 My people are struggling, dying, and there is little awareness. There are no consistently safe, reliable, effective treatments for #Gastroparesis, & there is no cure. I can help. How could I possibly turn my back on these people, whom I love? #PatientChat
Chris Anselmo @Chris_Anselmo
RT @patientchat: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A4: I think blogging and IG etc has strengthened my sea legs for this whole #raredisease life! #PatientChat
Seth Rotberg @Srotberg15
@FieldingPolly Appreciate it Polly! To be honest, people like YOU inspire me to continue to make a difference in the community. #patientchat
Becky Brandt RN @bbhomebody
T3 My longing for a cure for CPS motivates me everyday. And the advocacy community across social media is warm, knowledgeable & inviting. They appreciate each other, which keeps the ball rolling in hard times. #patientchat
Jamie Roger @JamieRoger8
Yes. #patientchat
Rozana Zaman @ZamanRozana
@patientchat I do think that being an advocate can certainly improve our own patient journey! #patientchat @Srotberg15
Olive O'Connor @oliveblogs
@patientchat T4: my patient journey has improved immensely since becoming an advocat as I’ve learned more about my rights and how the health system works. Have also thought my children how to advocate for themselves and have their voice heard! #patientchat
Bob Tufts @TuftsB
A3: And by the way, we need more men as part of the patient/ advoacy/caregiver process sharing their stories #patientchat
ISurvivor Lisa Deck @lbdeck
A4 Absolutely! Not only does advocacy make you feel less lone, it helps you #cope, #staystrong, #makefriends and live a fuller life. #PatientAdvocacyis so #fulfilling and #lifeaffirming. #patientchat
Patient Chat @patientchat
RT @oliveblogs: @patientchat T4: my patient journey has improved immensely since becoming an advocat as I’ve learned more about my rights a…
Patient Empowerment @power4patients
RT @oliveblogs: @patientchat T4: my patient journey has improved immensely since becoming an advocat as I’ve learned more about my rights a…
Seth Rotberg @Srotberg15
T4 Absolutely! It provided a platform for me to make a different in the rare disease community and made me realize I am not alone in my advocacy efforts. #patientchat
Patient Empowerment @power4patients
RT @lbdeck: A4 Absolutely! Not only does advocacy make you feel less lone, it helps you #cope, #staystrong, #makefriends and live a fuller…
Seth Rotberg @Srotberg15
T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even telling one new person or your co-workers about your story makes a huge difference. Every little bit helps. #patientchat
Inspire @teaminspire
RT @patientchat: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG
Polly Marie Fielding @FieldingPolly
@TheSarahDeBord I agree. When severe #hemophilia was first diagnosed in my baby son it was a shock, with no known history. I learned by trial & error to cope with this condition in my family & wanted to help other parents who r suddenly faced with this diagnosis #patientchat
Seth Rotberg @Srotberg15
RT @ZamanRozana: @patientchat I do think that being an advocate can certainly improve our own patient journey! #patientchat @Srotberg15
Sharon Rose Nissley @Rose_of_Sharon8
T4 Certainly. It is cathartic. I feel more empowered when I'm sharing about Klippel-Feil syndrome, stepping outside of myself, than caught up in my own personal health hurricane. I also became more comfortable telling anyone who would listen #patientchat
Seth Rotberg @Srotberg15
RT @lbdeck: A4 Absolutely! Not only does advocacy make you feel less lone, it helps you #cope, #staystrong, #makefriends and live a fuller…
Patient Empowerment @power4patients
RT @Srotberg15: T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even tel…
Patient Chat @patientchat
RT @Srotberg15: T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even tel…
ISurvivor Lisa Deck @lbdeck
Not to mention that my fellow #patients have been there for me for #years. They “get it” when others can’t. They have new ideas and ways to cope! #patientchat
Kevin Freiert @K_SalemOaks
T4: Only if you like… To feel some control To help others To learn and teach others To take action To make better decisions #patientchat #pinksocks #HCLDR @S4PM
Chris Anselmo @Chris_Anselmo
T4: Yes! It has made all the difference. All my best friends in the patient advocacy space are the direct result of opening up and sharing my own story. Wouldn't have met them otherwise. They have helped me immensely on my journey. #patientchat
Bob Tufts @TuftsB
A4: Yes. I have met many physicians, researchers and people who have become valuable resources for me - And I can refer others to their sites for any questions. #patientchat
Maya Northen Augelli @mayanorthen
T4: Absolutely. It makes me feel like, if I have to live with lifelong illness, at least I can use it for some good - to help others, raise awareness, perhaps even motivate change in healthcare. #patientchat
Debbie Popp @DPoppGP
T4: Being an advocate has definitely helped my own journey with my illness. It has helped me learn more listening to other people's stories so I can better understand treatments and options. #patientchat
Seth Rotberg @Srotberg15
RT @mayanorthen: T4: Absolutely. It makes me feel like, if I have to live with lifelong illness, at least I can use it for some good - to h…
Olive O'Connor @oliveblogs
Hi everyone, I just saw the hashtag #patientchat and jumped in - by way of introduction, my name is Olive. I live in Ireland and advocate for #patients #carers and #staff - actually all #citizens health rights when I can. Thanks for having me!
Sharon Rose Nissley @Rose_of_Sharon8
@Srotberg15 @patientchat Yes and do it your way! There is not one way to advocate, everyones skills and talents can be put to good use to advocate! @Srotberg15 @Patientchat #patientchat
z 🦜 @zebrafinch
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
Becky Brandt RN @bbhomebody
T4 100% YES! By advocating, learning and sharing, we find the best ways to help ourselves, as well as others. And we may even find a cure or treatment that REALLY improves our journey. #patientchat
z 🦜 @zebrafinch
RT @patientchat: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG
Olive O'Connor @oliveblogs
RT @FacesofGP: T4: Being an advocate has definitely helped my own journey with my illness. It has helped me learn more listening to other…
Olive O'Connor @oliveblogs
RT @mayanorthen: T4: Absolutely. It makes me feel like, if I have to live with lifelong illness, at least I can use it for some good - to h…
z 🦜 @zebrafinch
RT @patientchat: Topic 4 (T4:) coming up...https://t.co/LU6GVBkYLX #patientchat
z 🦜 @zebrafinch
RT @patientchat: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW
Savvy Co-op | #askpatients @savvy_coop
T1 You already have more knowledge thank you think! And as a patient, you’ve shown you are resilient. Trust that you got it and there is a supportive community here to help! #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/LU6GVBkYLX #patientchat
Olive O'Connor @oliveblogs
RT @TuftsB: A4: Yes. I have met many physicians, researchers and people who have become valuable resources for me - And I can refer others…
z 🦜 @zebrafinch
RT @patientchat: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR…
Savvy Co-op | #askpatients @savvy_coop
RT @bbhomebody: T4 100% YES! By advocating, learning and sharing, we find the best ways to help ourselves, as well as others. And we may ev…
z 🦜 @zebrafinch
RT @patientchat: T1: What is your advice for patients wanting to become advocates? #patientchat https://t.co/nPnQn1G82O
Savvy Co-op | #askpatients @savvy_coop
RT @mayanorthen: T4: Absolutely. It makes me feel like, if I have to live with lifelong illness, at least I can use it for some good - to h…
Chris Anselmo @Chris_Anselmo
RT @Srotberg15: T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even tel…
Savvy Co-op | #askpatients @savvy_coop
RT @K_SalemOaks: T4: Only if you like… To feel some control To help others To learn and teach others To take action To make better decisio…
Jamie Roger @JamieRoger8
RT @Chris_Anselmo: T4: Yes! It has made all the difference. All my best friends in the patient advocacy space are the direct result of open…
Violet Kuchar @ViolentKuchar
@patientchat T2: in regards to reaching an unscreened population, I share my story in unconventional places, such as my @BravoTV & @WhatCrappens fan groups. #patientchat
Patient Empowerment @power4patients
When you become an advocate you arm yourself with knowledge which makes you more health literate and there's a direct correlation between #HealthLiteracy and improved health outcomes https://t.co/I8R9wMWSKX @ASH_hematology @ @knowyournodes #patientchat
Savvy Co-op | #askpatients @savvy_coop
So important #PatientChat
Olive O'Connor @oliveblogs
RT @Srotberg15: T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even tel…
Melissa VanHouten @melissarvh
T4 Advocating 4 myself means finding info abt my illness, doing research re proper/possible treatments, & clearly stating my needs & asserting my preferences. Advocating 4 my community reminds me why I rise every morning. Gives me purpose & improves emotional health. #PatientChat
Savvy Co-op | #askpatients @savvy_coop
RT @Srotberg15: T4 I always emphasize that being an advocate doesn’t mean you need to do a huge talk or speak to a politician, but even tel…
Kevin Freiert @K_SalemOaks
@oliveblogs Welcome @oliveblogs It's great to have an international perspective. #patientchat
Trisha Bundy @bundytr5
Yes! It allows me to better understand what I'm experiencing, consider new options that are helpful or not for me to discuss w/ other pts & med team. Improves my knowledge, coping strategies, & gives purpose to be vocal abt personal & community needs. #patientchat
Savvy Co-op | #askpatients @savvy_coop
RT @ZHeatherChamp: @patientchat A4: I think blogging and IG etc has strengthened my sea legs for this whole #raredisease life! #PatientChat
Patient Empowerment @power4patients
RT @bbhomebody: T4 100% YES! By advocating, learning and sharing, we find the best ways to help ourselves, as well as others. And we may ev…
Savvy Co-op | #askpatients @savvy_coop
RT @melissarvh: T3 My people are struggling, dying, and there is little awareness. There are no consistently safe, reliable, effective trea…
Patient Chat @patientchat
T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU
Jamie Roger @JamieRoger8
@oliveblogs So glad you joined the chat today Olive. #patientchat
Patient Empowerment @power4patients
RT @FacesofGP: T4: Being an advocate has definitely helped my own journey with my illness. It has helped me learn more listening to other…
Sharon Rose Nissley @Rose_of_Sharon8
RT @ZHeatherChamp: @patientchat A4: I think blogging and IG etc has strengthened my sea legs for this whole #raredisease life! #PatientChat
Melissa VanHouten @melissarvh
RT @savvy_coop: T1 You already have more knowledge thank you think! And as a patient, you’ve shown you are resilient. Trust that you got it…
Melissa VanHouten @melissarvh
RT @FacesofGP: T4: Being an advocate has definitely helped my own journey with my illness. It has helped me learn more listening to other…
Violet Kuchar @ViolentKuchar
@patientchat T1: just start sharing your story. Your mission will build from there. You don’t need the endorsement of a parent org. People want to hear your experience. #patientchat
Melissa VanHouten @melissarvh
RT @mayanorthen: T4: Absolutely. It makes me feel like, if I have to live with lifelong illness, at least I can use it for some good - to h…
Inspire @teaminspire
RT @patientchat: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU
Melissa VanHouten @melissarvh
RT @K_SalemOaks: T4: Only if you like… To feel some control To help others To learn and teach others To take action To make better decisio…
Trisha Bundy @bundytr5
RT @lbdeck: A4 Absolutely! Not only does advocacy make you feel less lone, it helps you #cope, #staystrong, #makefriends and live a fuller…
Jamie Roger @JamieRoger8
RT @power4patients: When you become an advocate you arm yourself with knowledge which makes you more health literate and there's a direct c…
Sherry Reynolds 🌟 @Cascadia
T4 It can make it more frustrating at times when you know what a best in class #ptjourney can look like. #patientchat
Patient Chat @patientchat
@oliveblogs Hi Olive! So happy you jumped in today -welcome :) #patientchat
Olive O'Connor @oliveblogs
@Srotberg15 Helping just one person at a time can also help others close to them by default e.g. family, friends etc 👏👏 #impact #patientchat
Sarah DeBord @TheSarahDeBord
T4: As an advocate I have been afforded opportunities to learn more about my disease than I would have own my own. I can now confidently contribute to discussions with my health care team about my treatment plan, and know my opinion as an informed patient is valued. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU
Chris Anselmo @Chris_Anselmo
There is something to be said about the ripple effect in patient advocacy. Your story, shared with the right person at the right time, can change their life. I wouldn't be where I am today without encountering the stories of others at the perfect time. #patientchat
Seth Rotberg @Srotberg15
T5 Write down and practice your story. Figure out what you want to share with others (again depending on the audience). I would even say start by practicing your “pitch” to friends, family, and fellow patient advocates. Happy to help coach you along the way! #patientchat
Olive O'Connor @oliveblogs
@patientchat Thanks so much, really interesting comments and people 💛 #patientchat
Patient Empowerment @power4patients
RT @TheSarahDeBord: T4: As an advocate I have been afforded opportunities to learn more about my disease than I would have own my own. I ca…
ReedsBooks @LReedsbooks
An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy #patientexperience #patientchat
Kevin Freiert @K_SalemOaks
There is a risk isn't there? I think that people are wired differently. Some people would find that knowing more would be terrifying, frustrating, and/or discouraging. #patientchat
Chris Anselmo @Chris_Anselmo
RT @patientchat: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU
Susan Schaeffer @BiotechSusan
RT @Chris_Anselmo: T1: Being a patient advocate doesn't require special skills that only a select few have. Everyone's patient story matter…
Bob Tufts @TuftsB
A5: Attend support groups on your disease. Most physician offices have handouts on these events. See what people are thinking and experiencing - can you help? #patientchat
Patient Chat @patientchat
RT @Srotberg15: T5 Write down and practice your story. Figure out what you want to share with others (again depending on the audience). I w…
Seth Rotberg @Srotberg15
@Chris_Anselmo Couldn’t agree more. I was fortunate to do a TEDx talk which opened so many doors in the health space. Probably wouldn’t be here without it. #patientchat
Olive O'Connor @oliveblogs
RT @TuftsB: A5: Attend support groups on your disease. Most physician offices have handouts on these events. See what people are thinking a…
Becky Brandt RN @bbhomebody
T5 Start a blog, jump into Tweetchats like this one, learn about legislation @RareAdvocates #RDLA, share your story with everyone who will listen. #patientchat
Trisha Bundy @bundytr5
RT @bbhomebody: T4 100% YES! By advocating, learning and sharing, we find the best ways to help ourselves, as well as others. And we may ev…
Sharon Rose Nissley @Rose_of_Sharon8
Build a platform. For me, it was FB page & youtube. I gathered information in a central place, whatever I could, find about Klippel-Feil. IReach 2 other rare disease & health entities, people. Introduced myself & let them know I was passionate & ready. #patientchat #raredisease
Olive O'Connor @oliveblogs
@Cascadia Completely agree with this! #patientchat
skip @Skip1288
RT @TuftsB: A5: Attend support groups on your disease. Most physician offices have handouts on these events. See what people are thinking a…
BMM on Health and Tech @datadrivencare
RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy
Patient Empowerment @power4patients
A5: Here are two blog posts to help boost your advocacy efforts through blogging & crafting a compelling message https://t.co/7z8WyrBEwB & https://t.co/FSZ4lIVFut #patientchat
Inspire @teaminspire
RT @Srotberg15: T5 Write down and practice your story. Figure out what you want to share with others (again depending on the audience). I w…
Polly Marie Fielding @FieldingPolly
@K_SalemOaks I think perhaps the knowing more etc is like you say with some conditions more than others? #patientchat
Patient Empowerment @power4patients
RT @Rose_of_Sharon8: Build a platform. For me, it was FB page & youtube. I gathered information in a central place, whatever I could, find…
Kevin Freiert @K_SalemOaks
T5: Go ahead… you want to.. . tweet something here. I promise we will all "like" and RT whatever is on your mind. #patientchat #pinksocks
Chris Anselmo @Chris_Anselmo
T5: You can jump right in if comfortable, or if you are still on the fence, take some time to write out your patient story. Think back to important events, emotions and times, and begin to craft a narrative. Ask others for help/advice if it doesn't come naturally! #patientchat
Patient Empowerment @power4patients
RT @TuftsB: A5: Attend support groups on your disease. Most physician offices have handouts on these events. See what people are thinking a…
skip @Skip1288
IMF great organization and very helpful #patientchat
Melissa VanHouten @melissarvh
T5 Learn all you can abt your illness, share your story (even if only few hear it), contact disease-related nonprofits re volunteer & engagement opportunities, connect w/other advocates & patient orgs. Speak honestly abt your needs & your feelings. Share your heart. #PatientChat
Patient Empowerment @power4patients
RT @Srotberg15: T5 Write down and practice your story. Figure out what you want to share with others (again depending on the audience). I w…
Patient Empowerment @power4patients
RT @Chris_Anselmo: There is something to be said about the ripple effect in patient advocacy. Your story, shared with the right person at t…
Patient Chat @patientchat
Topic 6 (T6:) coming up...https://t.co/LU6GVBkYLX #patientchat
Patient Chat @patientchat
RT @melissarvh: T5 Learn all you can abt your illness, share your story (even if only few hear it), contact disease-related nonprofits re v…
Patient Empowerment @power4patients
RT @melissarvh: T5 Learn all you can abt your illness, share your story (even if only few hear it), contact disease-related nonprofits re v…
ReedsBooks @LReedsbooks
RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy
Melissa VanHouten @melissarvh
RT @Chris_Anselmo: T5: You can jump right in if comfortable, or if you are still on the fence, take some time to write out your patient sto…
Richard Kreis @kreisr1
RT @patientchat: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW
Becky Brandt RN @bbhomebody
I second what Kevin says😀👍 #patientchat
Richard Kreis @kreisr1
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Richard Kreis @kreisr1
RT @patientchat: Excited to have guest @Srotberg15, a rare disease advocate and motivational speaker who is passionate about bringing his p…
Patient Chat @patientchat
T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat https://t.co/zk7U6k8Kg3
Richard Kreis @kreisr1
RT @bbhomebody: T2 Having a partner/colleague is a super way to get things done. Each of you can focus on your skill set & help each other…
Susan Schaeffer @BiotechSusan
RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy
Richard Kreis @kreisr1
RT @patientchat: So great to see so many new faces on today's #patientchat!
Richard Kreis @kreisr1
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Seth Rotberg @Srotberg15
@melissarvh Especially learning the right information about your condition and then being connecting to fellow advocates and the proper resources. #patientchat
Richard Kreis @kreisr1
RT @savvy_coop: T1 You already have more knowledge thank you think! And as a patient, you’ve shown you are resilient. Trust that you got it…
Richard Kreis @kreisr1
RT @patientchat: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat
Patient Empowerment @power4patients
RT @patientchat: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat
The Patients' Academy for Research Advocacy @AcadForPatients
RT @power4patients: When you become an advocate you arm yourself with knowledge which makes you more health literate and there's a direct c…
Chris Anselmo @Chris_Anselmo
@Srotberg15 Ha I just gave this exact response! We think alike....scary. #patientchat
Seth Rotberg @Srotberg15
T6 Practice! I was never good at sharing my story until being coached prior to my talks. Some people have even suggested trying improv or going to a class like Toastmasters and get feedback from other speakers. #patientchat
Seth Rotberg @Srotberg15
T6 For me, I always ask my colleagues for feedback and it tends to get easier each time I advocate or share my story. #patientchat
Kevin Freiert @K_SalemOaks
T6 Practice, practice, practice. Tell your story in the mirror. With a friend. With your health care team. With the world. #patientchat #pinksocks #HCLDR @S4PM https://t.co/ZGEinxoKyK
The Patients' Academy for Research Advocacy @AcadForPatients
RT @TuftsB: A2: You do not have to become a biochemist to be an advoacte. Become the expert on how it affects your life and those around y…
Olive O'Connor @oliveblogs
@patientchat T5: Connect with other advocates, especially those who have domain knowledge in your area of interest. Write posts/blogs; find hashtags like #patientchat, learn from others and share your experiences. Talk to health professionals. Find research & keep up to date with news etc.
Inspire @teaminspire
RT @patientchat: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat
Maya Northen Augelli @mayanorthen
T5: There are so many ways, & it's a matter of finding what fits you best. Social media, blogging, participating local awareness event, local chapters of orgs, etc. What makes the most sense for u, what u want to do, & what makes sense for ur health at this time. #patientchat
The Patients' Academy for Research Advocacy @AcadForPatients
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Bob Tufts @TuftsB
A6: It starts with your doctor's visits. Come prepared, have a list of questions or facts regarding your progress and side effects. Take charge! #patientchat
Patient Empowerment @power4patients
A6: The journey of a thousand miles begins with one step. And the 1st step toward advocacy is to understand your illness. Here are some tips to help: https://t.co/itwOFGcLpA #patientchat #HealthLiteracy
Seth Rotberg @Srotberg15
RT @K_SalemOaks: T6 Practice, practice, practice. Tell your story in the mirror. With a friend. With your health care team. With the…
Olive O'Connor @oliveblogs
RT @patientchat: @oliveblogs Hi Olive! So happy you jumped in today -welcome :) #patientchat
Chris Anselmo @Chris_Anselmo
RT @patientchat: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat
Olive O'Connor @oliveblogs
RT @JamieRoger8: @oliveblogs So glad you joined the chat today Olive. #patientchat
Kevin Freiert @K_SalemOaks
RT @power4patients: A6: The journey of a thousand miles begins with one step. And the 1st step toward advocacy is to understand your illnes…
Olive O'Connor @oliveblogs
@JamieRoger8 Thanks so much Jamie 💛 #patientchat
Chris Anselmo @Chris_Anselmo
T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy more than you think. You don't need a PhD to speak intelligently about your disease, symptoms, and experience. #patientchat
The Patients' Academy for Research Advocacy @AcadForPatients
RT @H_SalemOaks: Hi #patientchat! Heather joining from outside of Ann Arbor. @SalemOaks' new course is out TODAY! We're pretty excited ab…
Olive O'Connor @oliveblogs
@K_SalemOaks And vice versa! Thanks so much #patientchat
Sarah DeBord @TheSarahDeBord
T5: Engage in your patient community. Tell your story. Speak up on social media. Contact advocacy groups that represent your illness/disease. Email your elected officials about policy that affects you as a patient. Help another patient stand up for themselves. #patientchat
Olive O'Connor @oliveblogs
RT @K_SalemOaks: @oliveblogs Welcome @oliveblogs It's great to have an international perspective. #patientchat
Patient Empowerment @power4patients
RT @Chris_Anselmo: T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy…
Jamie Roger @JamieRoger8
Mindfulness. Self-care. Awareness. Tell others what you need. #patientchat
Becky Brandt RN @bbhomebody
T6 Practice what you preach! Care for yourself the same way you care for others. Keep learning-Attend events, conferences, webchats, etc. And always advocate for yourself, because you matter as much as anyone else! #patientchat
Trisha Bundy @bundytr5
Be honest with yourself & your medical team. You know yourself better than anyone else & deserve to be heard, respected, and involved in your treatment decisions. Find a dr that listens, cares, is knowledgeable, & you trust. Stand up for your needs. #patientchat
Patient Empowerment @power4patients
RT @TheSarahDeBord: T5: Engage in your patient community. Tell your story. Speak up on social media. Contact advocacy groups that represent…
Olive O'Connor @oliveblogs
RT @JamieRoger8: Mindfulness. Self-care. Awareness. Tell others what you need. #patientchat https://t.co/sOFKS2TmY7
Patient Chat @patientchat
RT @Chris_Anselmo: T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy…
Felicity McKee @flicknightshade
T4: yes and no. I find some staff see it as being critical of them and not the system or don't see the benefit it can have for all involved. It can lead to issues, denied services etc #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @oliveblogs: @patientchat T5: Connect with other advocates, especially those who have domain knowledge in your area of interest. Write p…
Patient Chat @patientchat
RT @bundytr5: Be honest with yourself & your medical team. You know yourself better than anyone else & deserve to be heard, respected, and…
Polly Marie Fielding @FieldingPolly
@Srotberg15 The feedback is so important. When I speak about my mental health experiences to #cbt students I always include a no-holds barred Q & A session which gives them the chance to perhaps ask the kind of qs they may not usually ask & get greater insight #patientchat
Sharon Rose Nissley @Rose_of_Sharon8
Be clear about your goals & needs, vision. Stay on course, be open to change as your patient needs & experiences changes. Prepare yourself. I bring a brief explaination of Klippel-Feil & my mission. I give 2 doctors, nurses, friends. #patientchat I give a 🗝 so they remember.
Trisha Bundy @bundytr5
RT @Chris_Anselmo: T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy…
Marie Ennis-O'Connor @JBBC
Great advice Olive.. It's important to find mentors and for those of us who have been doing this work for some time to be mentors to others who are new to it #patientchat
Melissa VanHouten @melissarvh
T6 Starts w/believing you have worth & you deserve to have a voice. This is YOUR illness & YOUR life. Others can advise, but you know yourself & you know your illness. You must also must know you have a right to assert yourself. #MakeYourOwnLane #PatientChat
Maya Northen Augelli @mayanorthen
T6: Yep! With the number of times I practice sharing my story with my dog before writing it/being on a podcast/guest posting/etc, she could probably advocate on my behalf! :-) #patientchat
Trisha Bundy @bundytr5
RT @TheSarahDeBord: T5: Engage in your patient community. Tell your story. Speak up on social media. Contact advocacy groups that represent…
Sharon Rose Nissley @Rose_of_Sharon8
RT @Chris_Anselmo: T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy…
Seth Rotberg @Srotberg15
@FieldingPolly I am the same way and actually encourage the audience to ask any and all questions. I am an open book at this point so I never take any questions "too personal." #patientchat
Patient Empowerment @power4patients
RT @melissarvh: T6 Starts w/believing you have worth & you deserve to have a voice. This is YOUR illness & YOUR life. Others can advise, bu…
Melissa VanHouten @melissarvh
RT @bundytr5: Be honest with yourself & your medical team. You know yourself better than anyone else & deserve to be heard, respected, and…
Olive O'Connor @oliveblogs
RT @JBBC: Great advice Olive.. It's important to find mentors and for those of us who have been doing this work for some time to be mentor…
Bob Tufts @TuftsB
@bundytr5 Yes especially if you have a rare disease. You may know more than your medical team about living daily with the malady. #patientchat
ReedsBooks @LReedsbooks
@patientchat T6: Ask questions, go beyond pat answers. Prepare. Know your options. Be brave. #patientchat
Debbie Popp @DPoppGP
T5: I started by creating a website and advocacy group on social media, began collecting stories from the community to identify unmet needs, and making them available to other advocates. #patientchat
Trisha Bundy @bundytr5
RT @melissarvh: T6 Starts w/believing you have worth & you deserve to have a voice. This is YOUR illness & YOUR life. Others can advise, bu…
ShereeseM, MS/MBA @ShereesePubHlth
T4 I live by the theme: "We learn every day." Being an advocate encourages learning from all POVs of care. So, yes, it can enhance my own patient journey. #patientchat https://t.co/PRy0fDCydj
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
Polly Marie Fielding @FieldingPolly
@Srotberg15 Exactly! #patientchat
Becky Brandt RN @bbhomebody
@melissarvh Great point Melissa! 👍😀#patientchat
Kevin Freiert @K_SalemOaks
Interesting. Your answer considers how your advocacy impacts the impact others have on your journey. We always hear patients are people - healthcare pros are too. Food for thought. #patientchat
Maya Northen Augelli @mayanorthen
T6: Also, remember that you are the foremost expert at you. Nobody knows your story, your experiences, your feelings, your pain, your triumphs better than you. Own that expertise! #patientchat
Patient Empowerment @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Olive O'Connor @oliveblogs
@JBBC Definitely @JBBC We’ve learned so much from one another! Collaboration is key - for individual and organisational advocates. Oh and as @DeirdreMunro always says “Kindness always” 💛 #patientchat
Inspire @teaminspire
@bbhomebody T6: We sometimes see the "Cobblers Children Syndrome" among some very active and effective patient advocates as they don't invest the time in self-care, though they know they should https://t.co/oyeCUeN5FE. #patientchat
Melissa VanHouten @melissarvh
@bbhomebody Thank you kindly, Ms. Becky. 💚 #PatientChat
Olive O'Connor @oliveblogs
RT @mayanorthen: T6: Also, remember that you are the foremost expert at you. Nobody knows your story, your experiences, your feelings, your…
Patient Empowerment @power4patients
RT @mayanorthen: T6: Also, remember that you are the foremost expert at you. Nobody knows your story, your experiences, your feelings, your…
Sarah DeBord @TheSarahDeBord
T6: Educate yourself about your disease. Don't rely on your health care provider to do it for you. Watch webinars, attend conferences, immerse yourself in an empowered patient community, connect with other patient advocates & watch how they engage in their own care. #patientchat
Seth Rotberg @Srotberg15
CT: Thanks again for having me as a guest host today! Final thoughts are to continue to advocate for yourself and for those who may not have the same opportunity to share their story. #patientchat
Becky Brandt RN @bbhomebody
@mayanorthen LOL, Great idea about using the dog as a practice audience! 🐕🐶👍#patientchat
Olive O'Connor @oliveblogs
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Kevin Freiert @K_SalemOaks
Yeah - it always starts out ruff. #patientchat
Seth Rotberg @Srotberg15
CT: As for me, I am continuing to share my story through articles, podcasts, and speaking engagements. I am also passionate about supporting young adults impacted by a rare or chronic condition. If I can help you at all, don’t hesitate to reach out! #patientchat
Marie Ennis-O'Connor @JBBC
@patientchat CT Remember a rising tide lifts all boats. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today? #Patientchat
Violet Kuchar @ViolentKuchar
@patientchat T5 Start small. Life with a chronic or terminal illness is terribly difficult, & many hold down full time gigs to pay for our treatment on top of advocacy. You don't need an elaborate business plan to share your story. Social media makes sharing stories so easy. #patientchat
Olive O'Connor @oliveblogs
@patientchat CT: I’m so grateful to have just connected with likeminded people who share the same values! #patientchat
Patient Empowerment @power4patients
@TheSarahDeBord Yes x100 #patientchat
Patient Empowerment @power4patients
RT @Srotberg15: CT: As for me, I am continuing to share my story through articles, podcasts, and speaking engagements. I am also passionate…
Jamie Roger @JamieRoger8
Thank you #patientchat and the wonderful, GROWING, #community that you offer. Practice #selfcare , #selfadvocacy , and #selflove #listen and be #empathetic , we all have stories to tell, but we also need to be there when someone else needs to tell theirs.
Sherry Reynolds 🌟 @Cascadia
@K_SalemOaks Absolutely - some members of my own family don’t want to 2nd guess their doctors. Others want to get best in class. My own Mom is a 10+ year #MSBC (mets to liver) thriver and it only because we advocated for/with her within her values and preferences. #patientchat
Patient Empowerment @power4patients
RT @Srotberg15: CT: Thanks again for having me as a guest host today! Final thoughts are to continue to advocate for yourself and for those…
Olive O'Connor @oliveblogs
RT @patientchat: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU
Patient Chat @patientchat
RT @JBBC: @patientchat CT Remember a rising tide lifts all boats. One of the ways in which we lift each other up is through strengthening…
Seth Rotberg @Srotberg15
Can I steal this? 🙌👊 I tend to end with: what’s your next step to a better tomorrow? #patientchat
Maya Northen Augelli @mayanorthen
@K_SalemOaks Ha! Well played! #patientchat
Inspire @teaminspire
RT @JBBC: @patientchat CT Remember a rising tide lifts all boats. One of the ways in which we lift each other up is through strengthening…
Becky Brandt RN @bbhomebody
@teaminspire For sure!!! Thanks for the link! As a nurse, I was AWFUL about self care. Now , as a rare disease patient, I have no choice but to take care of ME first😀 #patientchat
Seth Rotberg @Srotberg15
@oliveblogs @patientchat It was great to learn more about your story through this #patientchat
Olive O'Connor @oliveblogs
RT @Srotberg15: Can I steal this? 🙌👊 I tend to end with: what’s your next step to a better tomorrow? #patientchat https://t.co/qBMAnlNeQD
Kevin Freiert @K_SalemOaks
CT I was going to say, patient advocacy should not be a competition. We all bring different gifts and tools to the same vision. I really like the way you said it here. #patientchat
Olive O'Connor @oliveblogs
RT @JamieRoger8: Thank you #patientchat and the wonderful, GROWING, #community that you offer. Practice #selfcare , #selfadvocacy , and…
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. #patientchat
Olive O'Connor @oliveblogs
RT @ViolentKuchar: @patientchat T5 Start small. Life with a chronic or terminal illness is terribly difficult, & many hold down full time g…
Kate Martinson @Kate_Martinson
RT @Chris_Anselmo: T6: Have confidence in yourself! You may not know everything there is to know about your disease, but you know wayyyyyy…
Olive O'Connor @oliveblogs
RT @JBBC: @patientchat CT Remember a rising tide lifts all boats. One of the ways in which we lift each other up is through strengthening…
Violet Kuchar @ViolentKuchar
@patientchat T6: As a patient, assume you not only deserve the same seat at the table as all physicians on your team, but you are the head of the table. If any doc treats you otherwise, make her leave the table. Don't forget you're paying for this. #patientchat
Olive O'Connor @oliveblogs
RT @Srotberg15: CT: As for me, I am continuing to share my story through articles, podcasts, and speaking engagements. I am also passionate…
Olive O'Connor @oliveblogs
RT @K_SalemOaks: Yeah - it always starts out ruff. #patientchat https://t.co/tcvQ9NPbI3
Debbie Popp @DPoppGP
T6: Being as kind to yourself as you are to others, Working with other advocates to learn as much about treatments available to bring to your own medical team for discussion. #patientchat
Patient Chat @patientchat
Thanks so much @Srotberg15 for sharing your insights and being our guest for today’s #patientchat
Seth Rotberg @Srotberg15
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. #p
Olive O'Connor @oliveblogs
RT @Srotberg15: CT: Thanks again for having me as a guest host today! Final thoughts are to continue to advocate for yourself and for those…
Melissa VanHouten @melissarvh
CT Speak up for yourself & for others who sometimes feel voiceless. It matters. Every little thing matters. And you do not have to have any special talents or credentials -- just a desire to help. #PatientChat
Olive O'Connor @oliveblogs
RT @TheSarahDeBord: T6: Educate yourself about your disease. Don't rely on your health care provider to do it for you. Watch webinars, atte…
Patient Empowerment @power4patients
CT: A chronic ilness can be incredibly isolating. Remember, you're not alone and there are people out there ready and willing to advocate for and with you #patientchat
Patient Chat @patientchat
RT @ViolentKuchar: @patientchat T6: As a patient, assume you not only deserve the same seat at the table as all physicians on your team, bu…
Seth Rotberg @Srotberg15
@patientchat No problem! Looking forward to the next #patientchat
Marni Cartelli @Purrfectly_Rare
A.4 #patientchat It can help & hurt When I needed new Dr told at 1st apt I am outspoken advocate esp for Tx of #pain bc I know it can have consequences 4 Drs in current climate I gave opportunity 2 not take me on if it would cause probs
Marni Cartelli @Purrfectly_Rare
A.4 #patientchat continued... In my case he said that solidified his desire to take me on bc not many think of what Drs R facing But he looks at advocacy as the job of both pts and physicians; as a team
ReedsBooks @LReedsbooks
@patientchat @power4patients @patientchat Thank you! #patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Seth Rotberg @Srotberg15
RT @power4patients: CT: A chronic ilness can be incredibly isolating. Remember, you're not alone and there are people out there ready and w…
Olive O'Connor @oliveblogs
@Srotberg15 @patientchat Thanks so much Seth, and yours too! #patientchat
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat I always ❤ hearing refreshing patient perspectives on this chat. New angles & ideas from the experts! #empowerment Thanks @Srotberg15 4 hosting & @patientchat #raredisease #hcsm #genetic #chronic #spoonies #advocates #hospital #medical #patientdata #naturalhistory #patientchat
Polly Marie Fielding @FieldingPolly
@ViolentKuchar @patientchat This is a bit different in the UK . I doubt any dr would leave the office, if requested #patientchat
Patient Empowerment @power4patients
RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Melissa VanHouten @melissarvh
RT @power4patients: CT: A chronic ilness can be incredibly isolating. Remember, you're not alone and there are people out there ready and w…
Sherry Reynolds 🌟 @Cascadia
@K_SalemOaks The goal is to move from 1:1 advocacy to applying lessons learned so we can change systems of care so that everyone's Mom has the same outcomes as upper income, highly educated families with a passionate advocate can get. #patientchat
Olive O'Connor @oliveblogs
RT @Srotberg15: @oliveblogs @patientchat It was great to learn more about your story through this #patientchat
Sarah DeBord @TheSarahDeBord
@FieldingPolly You found the gap and you filled it! Now other parents hearing the same diagnosis don't have to look far to find someone who has had to learn by doing, and can help them navigate #hemophilia. #patientchat
Seth Rotberg @Srotberg15
@Rose_of_Sharon8 @patientchat I am glad you had the chance to participate and I hope all is well on your end. Keep up the great work in the health community! #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, April 5th. Hope to see you there! https://t.co/NZMRSY7iWP.
Polly Marie Fielding @FieldingPolly
@melissarvh Thank you 4 the interesting chat - I am always willing to learn more #patientchat
Kevin Freiert @K_SalemOaks
@teaminspire You are just upset that I typed it faster than you. #dadjokesrule #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: The next Empowered #patientchat will be Friday, April 5th. Hope to see you there! https://t.co/NZMRSY7iWP.
Olive O'Connor @oliveblogs
RT @Cascadia: @K_SalemOaks The goal is to move from 1:1 advocacy to applying lessons learned so we can change systems of care so that every…
Olive O'Connor @oliveblogs
RT @Rose_of_Sharon8: @patientchat I always ❤ hearing refreshing patient perspectives on this chat. New angles & ideas from the experts! #em
Patient Chat @patientchat
Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat
Olive O'Connor @oliveblogs
RT @patientchat: Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Maya Northen Augelli @mayanorthen
CT: As w/ all in life, as an advocate there are going to be some great days, & some days where it's tough to focus/write/connect etc. Don't let it discourage you. Advocacy (& life) is a process, & it's OK to have tough days. Also, don't forget to practice self care! #patientchat
CMTP @CMTP_Baltimore
RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy
Melissa VanHouten @melissarvh
@FieldingPolly So glad to see you @ #PatientChat, Ms. Polly! I am thankful for the opportunity to meet new people and participate in such lively & informative conversations!
Salem Oaks @SalemOaks
#patientchat, more information on the course the @SalemOaks folks mentioned at the beginning of the chat.
Becky Brandt RN @bbhomebody
CT Thanks everyone for the inspiration. Each of our stories matter and helping each other promote them will help us all to advance our causes. Happy Spring!!! #patientchat https://t.co/GGNPC6rghL
Sarah DeBord @TheSarahDeBord
T6: Don't let your lack of credentials be intimidating in a room full of credentials. I appreciate the providers who are speaking up for patients, and treating them as equal partners and decision makers when creating a health care plan. #patientchat
Therese Surges @ThereseSurges
RT @Srotberg15: T2: Do your homework and know your audience when you advocate. Determine what your goal is and what message(s) you want to…
Becky Brandt RN @bbhomebody
@Purrfectly_Rare @JamieRoger8 Lol I'll keep reminding you if you keep reminding me😀💖👍 Great to see/tweet with you today #patientchat
Debbie Popp @DPoppGP
Thank you all who participated in this chat. Learned some good tips from you all today! #patientchat
Patient Chat @patientchat
Applying Patient Advocacy Initiatives to Your Patient Journey #patientchat Transcript March 22nd 2019 https://t.co/USjZ7BmUAU via @symplur
TwoFacesofMS 💋 @TwoFacesofMS
Patient engagement is engaging w someone the way they want to communicate. If I ask a drs office to be in touch by email, it’s because I need my energy for the phone to do work, not wasting it on making appts. #PatientChat #PatientExperience #MedTwitter
Erica @EROHealthComms
RT @TwoFacesofMS: Patient engagement is engaging w someone the way they want to communicate. If I ask a drs office to be in touch by email,…
Becky Brandt RN @bbhomebody
@mayanorthen Awesome! I love yoga. I'm sure you'll be great! Maybe you can teach an online dog yoga class? We've (@Cpnervecenter & @lisadbudzinski ) been trying to figure out a way to bring patients together online for events like that. We'll keep trying.....😀 #patientchat
#patientchat content from Twitter.