#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
 | Carolyn Holmes @HolmesCarolyn23 RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: 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 |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@Srotberg15 here: https://t.co/LU6GVBkYLX https://t.co/6bvYUpm8ih |
| Patient Chat @patientchat You can find out more about @Srotberg15 and his work here: https://t.co/5CyFW4PV9h #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9 |
 | Patient Empowerment Network @power4patients RT @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 |
| 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 Empowerment Network @power4patients RT @patientchat: You can find out more about @Srotberg15 and his work here: You can find out more about @Srotberg15 and his work here: https://t.co/5CyFW4PV9h #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hello all I'm @ShereesePubHlth, #HealthIT Strategist and fierce patient advocate, mostly in pediatrics. #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 |
| 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 |
| Inspire @InspireIsHealth @patientchat Hello to the #patientchat community, John Novack here from Inspire. |
 | Heather 🇺🇸 @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://t.co/GAHYfd0UDh #patientchat #pinksocks #HCLDR @S4PM @WestchesterBio |
| 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 personal experience to better support the health community, co-hosting today’s #patientchat |
| 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 |
| Heather 🇺🇸 @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 |
| 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 Network @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. |
| Seth Rotberg @Srotberg15 RT @patientchat: Today's #patientchat topic is Applying Patient Advocacy Initiatives to Your Patient Journey https://t.co/LU6GVBkYLX https://t.co/FaZjnIIbjw |
| 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 DegenRN @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 |
| Inspire @InspireIsHealth RT @patientchat: Today's #patientchat topic is Applying Patient Advocacy Initiatives to Your Patient Journey https://t.co/LU6GVBkYLX https://t.co/FaZjnIIbjw |
| 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 personal experience to better support the health community, co-hosting today’s #patientchat |
| 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 |
| Heather 🇺🇸 @ZHeatherChamp @H_SalemOaks @SalemOaks What’s that? #patientchat |
| Patient Empowerment Network @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 |
| Heather 🇺🇸 @ZHeatherChamp @FieldingPolly @patientchat Welcome! #patientchat |
| Inspire @InspireIsHealth 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 the Empowered #patientchat https://t.co/QPGtVjZqog @patientchat @power4patients |
| Kevin Freiert @K_SalemOaks T1: Yes. You CAN do this. #patientchat #pinksocks #HCLDR @S4PM https://t.co/kAiHVVCsON |
| 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 the Empowered #patientchat https://t.co/QPGtVjZqog @patientchat @power4patients |
| Heather 🇺🇸 @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 |
| 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) . #passion makes a huge difference. #patientchat |
| 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 Network @power4patients RT @ZHeatherChamp: A1: 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 |
| Patient Empowerment Network @power4patients RT @Srotberg15: T1: 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 |
| 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) . #passion makes a huge difference. #patientchat |
| Seth Rotberg @Srotberg15 @ZHeatherChamp Couldn’t agree more! Never hesitate to ask questions and to learn from others! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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) . #passion makes a huge difference. #patientchat |
| 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 |
| 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 |
| Seth Rotberg @Srotberg15 👍🙌💪 #patientchat |
| Bob Tufts @TuftsB @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat |
 | Laurie Reed @LReedptadvocate @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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) . #passion makes a huge difference. #patientchat |
| Melissa VanHouten @melissarvh RT @TuftsB: @patientchat A1. You have within you a powerful narrative. Share it with your community. #patientchat |
| Patient Empowerment Network @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 Network @power4patients RT @LReedsbooks: @patientchat T1: @patientchat T1: Get connected with organizations that support your diagnosis. Get informed. Become active on social media #patientchat |
| Patient Empowerment Network @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 Network @power4patients @TuftsB @patientchat Well said, Bob! #patientchat |
| Heather 🇺🇸 @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 Network @power4patients RT @Srotberg15: 👍🙌💪 #patientchat |
 | 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. #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. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/LU6GVBkYLX #patientchat |
| Patient Empowerment Network @power4patients RT @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 #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 |
| Laurie Reed @LReedptadvocate @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 Network @power4patients RT @mayanorthen: A1: 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 |
| 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 Network @power4patients RT @patientchat: T2: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR7PVjq1a |
| Rozana Zaman @ZamanRozana @Srotberg15 Yes! I do think that anyone can become an advocate #patientchat @Srotberg15 |
| Patient Empowerment Network @power4patients RT @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 |
| Laurie Reed @LReedptadvocate @patientchat T2: Listening and sharing stories. Helps to realize that you're not alone. #patientchat |
| 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 |
| 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 |
| 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 health first. #patientchat |
| 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 |
| Heather 🇺🇸 @ZHeatherChamp @Srotberg15 I’ve got two of those at least! Blog & SM. #patientchat |
| Patient Chat @patientchat RT @Srotberg15: T2: 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 |
| Jamie Roger @JamieRoger8 RT @Srotberg15: T2: 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 |
| 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 |
| 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 Network @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 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 |
| Patient Empowerment Network @power4patients RT @Srotberg15: T2: 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 @mayanorthen: A1: 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 |
| Patient Empowerment Network @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 advocacy if you are so inclined. #PatientChat |
| Trisha Bundy @bundytr5 RT @FacesofGP: T1: 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 |
| 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 |
| 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 @InspireIsHealth @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: T2: Being tenacious, not allowing negativity to discourage you I have found critical in advocacy. Believing you can is half the battle! #patientchat |
| 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 Network @power4patients RT @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 |
| 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 Network @power4patients RT @K_SalemOaks: T2: 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 |
| Patient Empowerment Network @power4patients RT @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 |
| Seth Rotberg @Srotberg15 RT @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 |
| Inspire @InspireIsHealth RT @patientchat: T2: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR7PVjq1a |
 | 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. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A2: Being consistent in posting and checking the appropriate hashtags. #patientchat |
| Patient Empowerment Network @power4patients RT @ZamanRozana: @patientchat Feeling the pain of others and listening to others stories really makes us realize that we are not alone! #patientchat @Srotberg15 #power4patients |
| 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 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 |
| Melissa VanHouten @melissarvh RT @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 |
| Seth Rotberg @Srotberg15 @ZamanRozana @patientchat We are all in this together and need to have each other's back! #patientchat |
| 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 |
| Heather 🇺🇸 @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 |
| Patient Empowerment Network @power4patients RT @patientchat: T3: 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 |
| Rozana Zaman @ZamanRozana @Srotberg15 You are absolutely correct. we all should follow this. #patientchat @Srotberg15 |
| Patient Empowerment Network @power4patients RT @TuftsB: A2: 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 |
| 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 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! |
| 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 |
| Laurie Reed @LReedptadvocate @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 |
| Heather 🇺🇸 @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! |
| 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/ our challenges. Also therapeutic reread our past writings to see what we have survived already & reminder we can continue doing so... #advocacy #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 |
| 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 |
| 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 Network @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: 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 |
| 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 passion for it, and to understand what it is you seek (your goal/s) & why this all matters. #PatientChat |
| Patient Empowerment Network @power4patients RT @K_SalemOaks: T2: 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 |
| 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: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9 |
| Seth Rotberg @Srotberg15 @mayanorthen Be comfortable with the uncomfortable 😊🙌 #patientchat |
 | 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 be as distracted while the games go on 😄 #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 community, board member for @HDYOFeed, and Partnerships Manager for the healthcare social network @Inspire. #patientchat |
 | 🌟 Sherry Reynolds ✨ Person-Centered Health @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 💋 @E_LeeLove1 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 passion for it, and to understand what it is you seek (your goal/s) & why this all matters. #PatientChat |
| 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 |
| 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 💋 @E_LeeLove1 RT @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 |
| 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: 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 |
| 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 |
| 𝙀-𝙇𝙀𝙀 𝙇𝙊𝙑𝙀 💋 @E_LeeLove1 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 💋 @E_LeeLove1 RT @FacesofGP: T1: 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 |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG |
| 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 |
| Heather 🇺🇸 @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 |
| 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 |
| 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 |
| 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 |
| 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 |
| Patient Empowerment Network @power4patients RT @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 |
| Inspire @InspireIsHealth RT @patientchat: T4: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG |
| Seth Rotberg @Srotberg15 RT @ZamanRozana: @patientchat I do think that being an advocate can certainly improve our own patient journey! #patientchat @Srotberg15 |
| 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 life. #PatientAdvocacyis so #fulfilling and #lifeaffirming. #patientchat |
| Patient Empowerment Network @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 telling one new person or your co-workers about your story makes a huge difference. Every little bit helps. #patientchat |
| 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 telling one new person or your co-workers about your story makes a huge difference. Every little bit helps. #patientchat |
| 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 |
| 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: 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 |
 | mary @zebrafinch RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| mary @zebrafinch RT @patientchat: T4: T4: Do you think being an advocate can improve your own patient journey? #patientchat https://t.co/5Gw7iLVwCG |
| mary @zebrafinch RT @patientchat: Topic 4 (T4:) coming up...https://t.co/LU6GVBkYLX #patientchat |
| mary @zebrafinch RT @patientchat: T3: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW |
 | Savvy Cooperative | #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 |
| mary @zebrafinch RT @patientchat: T2: T2: Are there any specific tactics that you have found successful during your advocacy work? #patientchat https://t.co/CxR7PVjq1a |
| mary @zebrafinch RT @patientchat: T1: T1: What is your advice for patients wanting to become advocates? #patientchat https://t.co/nPnQn1G82O |
| Savvy Cooperative | #AskPatients @savvy_coop RT @mayanorthen: T4: 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 |
| Savvy Cooperative | #AskPatients @savvy_coop RT @K_SalemOaks: T4: 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 |
 | Violet Kuchar, Crazy Colorectal Cancer Cat Lady @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 Network @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 Cooperative | #AskPatients @savvy_coop So important #PatientChat |
| 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 Cooperative | #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 telling one new person or your co-workers about your story makes a huge difference. Every little bit helps. #patientchat |
| 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 Cooperative | #AskPatients @savvy_coop RT @ZHeatherChamp: @patientchat A4: @patientchat A4: I think blogging and IG etc has strengthened my sea legs for this whole #raredisease life! #PatientChat |
| Savvy Cooperative | #AskPatients @savvy_coop RT @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 |
| Jamie Roger @JamieRoger8 @oliveblogs So glad you joined the chat today Olive. #patientchat |
| Patient Chat @patientchat T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU |
| Patient Empowerment Network @power4patients RT @FacesofGP: T4: 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 |
| 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 and there is a supportive community here to help! #patientchat |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @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 @FacesofGP: T4: 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 |
| Melissa VanHouten @melissarvh RT @mayanorthen: T4: 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 |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU |
| 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 life. #PatientAdvocacyis so #fulfilling and #lifeaffirming. #patientchat |
| Melissa VanHouten @melissarvh RT @K_SalemOaks: T4: 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 |
| 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 correlation between #HealthLiteracy and improved health outcomes https://t.co/I8R9wMWSKX @ASH_hematology @ @knowyournodes #patientchat |
| 🌟 Sherry Reynolds ✨ Person-Centered Health @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 |
| 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 Network @power4patients RT @patientchat: T5: T5: What are a few ways to get started in my patient advocacy journey? #patientchat https://t.co/yQuxVHbZDU |
| 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 |
| Patient Empowerment Network @power4patients RT @TheSarahDeBord: T4: 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 |
| Laurie Reed @LReedptadvocate 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 |
| 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 would even say start by practicing your “pitch” to friends, family, and fellow patient advocates. Happy to help coach you along the way! #patientchat |
| 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 |
 | skip @Skip1288 RT @TuftsB: A5: 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 Empowerment Network @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 @InspireIsHealth RT @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 |
| Patient Empowerment Network @power4patients RT @Rose_of_Sharon8: |
| 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 |
| Patient Empowerment Network @power4patients RT @TuftsB: A5: 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 |
| 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 Network @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 would even say start by practicing your “pitch” to friends, family, and fellow patient advocates. Happy to help coach you along the way! #patientchat |
| 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 volunteer & engagement opportunities, connect w/other advocates & patient orgs. Speak honestly abt your needs & your feelings. Share your heart. #PatientChat |
| Patient Empowerment Network @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 volunteer & engagement opportunities, connect w/other advocates & patient orgs. Speak honestly abt your needs & your feelings. Share your heart. #PatientChat |
| Laurie Reed @LReedptadvocate RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy #patientexperience #patientchat |
 | Richard Kreis @kreisr1 RT @patientchat: T3: T3: What motivated you to get more involved within your community? #patientchat https://t.co/qXP7xemRCW |
| 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 personal experience to better support the health community, co-hosting today’s #patientchat |
| 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 |
 | Susan Schaeffer @BiotechSusan RT @LReedsbooks: An Impt. takeaway - "there's a direct correlation between #Healthliterarcy and improved health outcomes. #patientadvocacy #patientexperience #patientchat |
| 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: 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 and there is a supportive community here to help! #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T6: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat https://t.co/zk7U6k8Kg3 |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat https://t.co/zk7U6k8Kg3 |
 | 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 correlation between #HealthLiteracy and improved health outcomes https://t.co/I8R9wMWSKX @ASH_hematology @ @knowyournodes #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 |
| 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 |
| 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: 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 |
| Inspire @InspireIsHealth RT @patientchat: T6: T6: Self-advocacy is a pillar of patient advocacy – what are some tips to improve your self-advocacy skills? #patientchat https://t.co/zk7U6k8Kg3 |
| 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: 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 |
| 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 Network @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 world. #patientchat #pinksocks #HCLDR @S4PM https://t.co/ZGEinxoKyK |
| Kevin Freiert @K_SalemOaks RT @power4patients: A6: 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 |
| 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 about it. |
| 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 |
| Jamie Roger @JamieRoger8 Mindfulness. Self-care. Awareness. Tell others what you need. #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 Network @power4patients RT @TheSarahDeBord: T5: 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 |
| 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 involved in your treatment decisions. Find a dr that listens, cares, is knowledgeable, & you trust. Stand up for your needs. #patientchat |
 | 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: 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 |
| 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 Network @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, but you know yourself & you know your illness. You must also must know you have a right to assert yourself. #MakeYourOwnLane #PatientChat |
| 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 involved in your treatment decisions. Find a dr that listens, cares, is knowledgeable, & you trust. Stand up for your needs. #patientchat |
| 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 |
| Laurie Reed @LReedptadvocate @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, but you know yourself & you know your illness. You must also must know you have a right to assert yourself. #MakeYourOwnLane #PatientChat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| 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 Network @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: #patientchat |
| Inspire @InspireIsHealth @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 |
| Patient Empowerment Network @power4patients RT @mayanorthen: T6: 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 |
| 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 |
| 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, Crazy Colorectal Cancer Cat Lady @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 |
| Patient Empowerment Network @power4patients @TheSarahDeBord Yes x100 #patientchat |
| Patient Empowerment Network @power4patients RT @Srotberg15: CT: 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 |
| 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 ✨ Person-Centered Health @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 Network @power4patients RT @Srotberg15: CT: 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 |
| 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 our connections online. So ask yourself, who will you lift up today? #Patientchat |
| 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 @InspireIsHealth 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 our connections online. So ask yourself, who will you lift up today? #Patientchat |
| Becky Brandt DegenRN @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 |
| 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 |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. #patientchat |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @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 |
| 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. #patientchat |
| 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 |
| Patient Empowerment Network @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: @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 |
| 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 |
| Laurie Reed @LReedptadvocate @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: 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 Empowerment Network @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: 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 |
| 🌟 Sherry Reynolds ✨ Person-Centered Health @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 |
| 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. |
| 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 @Rose_of_Sharon8: |
| 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 |
| 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 #patientexperience #patientchat |
| 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. |
| 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: 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 |
| 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 |
 | Two Faces of MS 💋 @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, it’s because I need my energy for the phone to do work, not wasting it on making appts. #PatientChat #PatientExperience #MedTwitter |
#patientchat content from Twitter.