#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. |
| 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 excited about today’s #patientchat |
 | Carly Flumer (she/her) @carlyflumer I’m Carly, an #AYA #thyca patient. 🦋 #patientchat |
| Patient Chat @patientchat #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Alexa Jett 🦋 @ohhiialexa Hello #patientchat! It’s me, Ozzy Osbourne (my Halloween costume) always representing the thyroid cancer and AYA (adolescent / young adult) community. |
 | Simply Kristy @SimplyKristyD @carlyflumer Hi Carly #patientchat https://t.co/HudMZYSMq9 |
| 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 |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I'm Adam, a #RareDisease patient & self-proclaimed DadVocate...a Dad first who is aiming to Advocate as well. It's a whole new world for me, but I'm trying, mostly through social media and my new website and blog posts. Looking forward to the #patientchat today. |
| Simply Kristy @SimplyKristyD Join me over on #patientchat 😊 |
 | Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat Hi there, I’m Monique! Global #Lupus Patient Advocate, etc... glad to join everyone #patientchat |
 | Alan Brewington @abrewi3010 Alan here. I’m a skier and photographer who lives with various #rheum #ChronicPain #heart, and #Mentalhealth issues. I like dad jokes too! #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Simply Kristy @SimplyKristyD Hi! 👋 I am Kristy from Burlington Ont. I am a rare disease patient living with EDS, Anklyosing Spondylitis and a few other co-morbidities. I am also the founder of @cshealthapp and a wife and mama to three young kids. #patientchat |
| Alan Brewington @abrewi3010 PS I scare very easily so I hate Halloween. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad OHHHHH YEAHHH!! #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Checking the Pulse on Patient Influencers https://t.co/2pSQRCx8mR |
 | Patient Worthy @PatientWorthy Hello #patientchat! This is Patient Worthy; we publish content and news related to rare diseases or conditions. We also love to share patient stories and raise awareness. |
| 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 |
 | ROHHADwarrior @ROHHAD_warrior @patientchat Sarah Mineau I was on the last chat #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What is a patient influencer? #patientchat https://t.co/MlGTlpz6Ef |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What is a patient influencer? #patientchat https://t.co/MlGTlpz6Ef |
| Alexa Jett 🦋 @ohhiialexa T1: I prefer advocate or activist, because influencer has superficial connotations. We aren’t here to promote a weight loss product on instagram. We are fighting for our, and our communities livelihood! #patientchat |
| ROHHADwarrior @ROHHAD_warrior RT @patientchat: Today's #patientchat topic is Checking the Pulse on Patient Influencers https://t.co/2pSQRCx8mR |
| Alan Brewington @abrewi3010 A1 my initial response was a patient in search of a higher quality of life. That’s every patient though. #patientchat |
| Simply Kristy @SimplyKristyD Love this 👇 #patientchat |
| Patient Worthy @PatientWorthy A1: A patient "influencer" is a patient who advocates for their community, shares information, provides education, and ultimately works to uplift others. #patientchat |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat T #1 We’re truly some of the best trust bearers in our patient community AND within the health ecosystem! Deny it and 🥊pow, lol. #patientchat |
| Patient Empowerment Network @power4patients I found this article from @wegohealth very interesting on the topic of patient influencers https://t.co/a8tsxrvQmy #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: I’ve never really thought of patients as “influencers,” unless you’re referring to patients “influencing” others to advocate for their health. Just doesn’t have a good vibe, though, IMO. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: I’m not entirely sure. From what I can tell, a patient influencer may be synonymous with an advocate, interacting with stakeholders in the medical field? The traditional influencer term has me questioning this a bit, though. Curious about the thoughts of others. #patientchat |
| Simply Kristy @SimplyKristyD T1: To me, a patient influencer is a trusted source who is connected to their community and who other patients turn to for information, advice or insight that is vetted and relevant. I prefer the term advocate to influencer, personally. #patientchat |
| Patient Chat @patientchat RT @ohhiialexa: T1: T1: I prefer advocate or activist, because influencer has superficial connotations. We aren’t here to promote a weight loss product on instagram. We are fighting for our, and our communities livelihood! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Same, same! #patientchat |
 | Melissa VanHouten @melissarvh @ohhiialexa I agree. I do not like this term. #PatientChat |
| Alexa Jett 🦋 @ohhiialexa @malkabethwendy Agreed! #patientchat |
| Alan Brewington @abrewi3010 .Yessss x 1000. All patients are influencers by definition. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa These were my initial thoughts when first seeing patient influencer as well, Alexa. I'm not quite sure about the terminology & the potential connotations. I'm also willing to hear opinions and thoughts of others...I've been known to be wrong many times before! 😂 #patientchat |
| Patient Worthy @PatientWorthy @SimplyKristyD Great definition! We prefer advocate to influencer too. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
 | Jennifer Douglas @mmejendouglas T1: I agree. But I’d love to change the term to patient advocate #patientchat |
 | Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat A1 I also don’t like the term influencer much, don’t feel like one. It has come to have a negative connotation. In French I use « communicator » as I raise awareness and also educate, through multiple media. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @PatientWorthy That's a definition I can get behind! I wonder if there's some informing/teaching about the particular use of the word influencer that may help others understand this is the meaning. Like so many other things, how we define the words we use really matters. #patientchat |
| Patient Chat @patientchat T2: What do you think the role of patient influencers is? #patientchat https://t.co/VkgTgHEgxs |
 | Viet Le DMSc PA-C FACC FAHA HF-Cert @VietHeartPA @patientchat An engager, educator, listener. Someone who asks about pts health values and adds, guides, and helps to achieve and improve upon those. Provides anticipatory guidance. #patientchat |
| Alan Brewington @abrewi3010 A1 how come there isn’t a doctor influencer term? Hospital administrator influencer? We need all parties at the table, not just the influencers #patientchat |
| Jennifer Douglas @mmejendouglas @patientchat T2: one role would be to share personal patient experiences so that people can be aware of what to expect during treatment. #patientchat |
| Patient Worthy @PatientWorthy A2: The role is varied: tell their story. Listen to others and help them amplify their stories. Push for research. Advocate for change. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad I’m concerned that influencer is so tainted that it would harm the patient community! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: If my definition is correct, I’d say the role of a patient influencer is to liaise between the patient & various medical communities? I’m really partial to the advocacy side, so I’d want to make sure that supporting patients (regardless of approach) is paramount. #patientchat |
| Simply Kristy @SimplyKristyD RT @ohhiialexa: @RareDiseaseDad I’m concerned that influencer is so tainted that it would harm the patient community! #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat That's a great way to think of it, Adam #patientchat |
| Alexa Jett 🦋 @ohhiialexa T2: To bring light to issues, to be visible, human face(s) to a condition, to tell the stories of many, and very important - to share the space with others also. More voices are important, not less! #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: Patient advocates (Just going to use that instead) have the, for lack of a better word, privilege to support others on their healthcare journey in a variety of ways. Esp. important in #cancercare! #patientchat |
| Jennifer Douglas @mmejendouglas That is really insightful! #patientchat |
| Simply Kristy @SimplyKristyD T2 a) I think the role of a patient influencer varies depending on need. When connecting with other members of the my patient community I try to share knowledge and resources #patientchat |
| Simply Kristy @SimplyKristyD T2 b) When working with outside organizations I will be an advocate for myself or patients with my condition to educate and inform on the patient perspective. #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey <runs in late> HAAAAIIIII Too many things going on! Mighty Mouth Casey Q here Loud in service of #patientsincluded #BeLikeLight #healthpolicy #healthjustice I'll catch up ... #patientchat |
| Alan Brewington @abrewi3010 A2 to prove all patients have earned the right to bad days and weeks but can still have a good, positive life. #patientchat |
| Patient Worthy @PatientWorthy Love this! #patientchat |
| Melissa VanHouten @melissarvh Ignoring my dislike of the term... one who spreads awareness, share their story, provides accurate information, offers support to others, and/or advocates for the cause. I believe anyone engaging in those or similar activities can have influence. #PatientChat |
| Simply Kristy @SimplyKristyD RT @abrewi3010: A2 to prove all patients have earned the right to bad days and weeks but can still have a good, positive life. #patientchat |
| Jennifer Douglas @mmejendouglas This is an important perspective #patientchat |
| Jennifer Douglas @mmejendouglas RT @melissarvh: Ignoring my dislike of the term... one who spreads awareness, share their story, provides accurate information, offers support to others, and/or advocates for the cause. I believe anyone engaging in those or similar activities can have influence. #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Agree, Alan. I'm thinking the relationship between the various fields of patient & medical communities (like you said, hospital administrator, doctor, and perhaps we could include pharmaceuticals, insurance companies, and others) is so important. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: I'll agree w/whoever said they prefer "activist" to influence or anything else. Sure, I want to influence #healthpolicy + #dataprivacy + #healthjustice discussions. But I'm *demanding* improvement, not asking for it. #patientchat |
| ROHHADwarrior @ROHHAD_warrior @patientchat T2: I believe the role of patient influencers is to provide information, guidance and support to others. #patientchat |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat T #2 I think it’s fluid to meet the patient leader doing the influencing. We influence policy,research,D&I of data, patientcare, etc. As liaisons for our community,we connect them to systems they may not typically have had access to. Amplifying their diverse concerns #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat A2 I think our role is to share our insights, educate as much as possible (our fellow patients, medical professionals and the general public) and show our reality. I also think it means to stay informed! #patientchat |
| Jennifer Douglas @mmejendouglas RT @ROHHAD_warrior: @patientchat T2: @patientchat T2: I believe the role of patient influencers is to provide information, guidance and support to others. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
| Alan Brewington @abrewi3010 A2 this is more the job of all in healthcare but we need more silos busted and a higher medical literacy rate. #patientchat |
| Jennifer Douglas @mmejendouglas RT @ADanGrenier: @patientchat A2 I think our role is to share our insights, educate as much as possible (our fellow patients, medical professionals and the general public) and show our reality. I also think it means to stay informed! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: I'll repeat what I said on T1, that my POV on influencing discussions in areas I'm working in is more in the category of demand than simply influence. Change has gotta come. Ignore voices demanding change at. your peril. #patientchat |
| Patient Chat @patientchat T3: Do you consider yourself a patient influencer? Why or why not? #patientchat https://t.co/eHblbkBdd3 |
| Jennifer Douglas @mmejendouglas Medical literacy, what a great term. I thought everyone did research on medical conditions. Found out I’m in the minority. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T3: I consider myself a *patient advocate * who tries to bring positive influence and change wherever I go! ☺️ #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: Others may consider me an influencer in #healthpolicy #dataprivacy #patientsincluded, but I'll correct 'em (right @boltyboy?) that I'm not an advocate, or influencer. I AM AN ACTIVIST Who gets loud/demanding around #healthcare improvement for all humans. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat A3 ah, we were too early in T1 😜 I don’t see myself as a patient influencer. As an advocate, communicator, content creator... Because I don’t feel I have that big of an influence, but mostly because from what the word has come to mean, it’s not what I do! #patientchat |
| Patient Worthy @PatientWorthy A3: It depends. I think we do our best to share all of the #raredisease news possible. But I would say that the patients we work with, whose stories we share and who we are able to interview, are the real patient advocates/influencers. #patientchat |
| Jennifer Douglas @mmejendouglas @patientchat A3: I’m just beginning to share my story with #breastcancer in my writing. I’ve had opportunities to chat with recently diagnosed patients. It has felt good to encourage others. #patientchat |
 | Keith McCallin @KeithMcCallin RT @MightyCasey: T3: T3: Others may consider me an influencer in #healthpolicy #dataprivacy #patientsincluded, but I'll correct 'em (right @boltyboy?) that I'm not an advocate, or influencer. I AM AN ACTIVIST Who gets loud/demanding around #healthcare improvement for all humans. #patientchat |
| ROHHADwarrior @ROHHAD_warrior @patientchat T3: I am part of a @Facebook group and am willing to share my experiences with those that have been diagnosed with #ROHHAD, but I really am trying to get more comfortable sharing my story with others and to become an advocate/influencer. #patientchat |
| Alan Brewington @abrewi3010 A3 I’m a patient who is tired of hurting! Since I have advanced training in storytelling, campaign management, and content creation I use this skills to try and hurt less. If I help others that is just more awesomeness. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3: I feel like Ron Burgundy...lots of question marks on my teleprompter. I’m a patient influencer? Right now, I’m more comfortable with patient advocate. Maybe I’ll come around as I learn more? Maybe not? I’m not sure I have influencer “clout” if that’s necessary. #patientchat https://t.co/uaksFspu4Z |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. I don't really like the word, tbh. I'm a patient advocate, I do it for myself primarily, then others. Do I have a reach of some sort on my patient community and things to say that they will listen to? Sure I guess. But. #PatientChat |
| Alexa Jett 🦋 @ohhiialexa RT @abrewi3010: A3 I’m a patient who is tired of hurting! Since I have advanced training in storytelling, campaign management, and content creation I use this skills to try and hurt less. If I help others that is just more awesomeness. #patientchat |
| Melissa VanHouten @melissarvh No, I consider myself a passionate advocate for the #Gastroparesis community. If I can help, I help. If I can get us heard, I get us heard. But my goal is to "influence" others to speak up for the cause & for their own best care. #PatientChat |
| Carly Flumer (she/her) @carlyflumer T3: I consider myself a patient advocate for sure. I know I’ve helped others, and love doing it! Sometimes being an advocate is a full time job, which is something the medical community fails to realize. #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Great use of a Ron Burgundy gif 👏 #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa You are incredible, and I don’t know how you keep up with all the research. I need to know your ways. 😉 #patientchat |
| Simply Kristy @SimplyKristyD T3 a) I don't think of myself as an influencer at all. I do, however, consider myself to be an advocate. I work hard to connect with patients to learn from them .. #patientchat |
| Jennifer Douglas @mmejendouglas Love this perspective! #patientchat |
| Simply Kristy @SimplyKristyD T3 b) to share my experiences and to do what I can to make the healthcare system and healthcare journey more bearable. I advocate in areas I am passionate about and am grateful to connect with others whose knowledge and experiences are different to mine. #patientchat |
| Alan Brewington @abrewi3010 A3 I skied 8 weeks after my hip replacement surgery. I hiked a couple of miles in snow after 6 weeks of knee injections. I’ve traveled on crutches. I rather be known for redefining patient than as a influencer. #patientchat |
| Jennifer Douglas @mmejendouglas RT @SimplyKristyD: T3 b) to share my experiences and to do what I can to make the healthcare system and healthcare journey more bearable. I advocate in areas I am passionate about and am grateful to connect with others whose knowledge and experiences are different to mine. #patientchat |
| Patient Chat @patientchat Topic 4a (T4a:) coming up... #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Would this be a bad time for me to say I’m not Alexa Jett but Amazon Alexa?? 😂😂😂 #patientchat |
| Patient Chat @patientchat T4a: What are some of the positive effects of patient influencers? #patientchat https://t.co/hBSovVa9w7 |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat T #3 while I may be referred to as one, i typically don’t go by it. I prefer Patient Advocate/ Patient Ambassador. Either way, I’m grateful to be of service, that’s what ultimately matters. Patient influencers shouldn’t be about self promotion,there’s a larger work. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ROHHAD_warrior @patientchat @Facebook I feel this. Getting comfortable with sharing my story has been a challenge for me. It can sure take a lot out of us when doing that. At least it has for me, I'm finding. Yet it's well worth it if it helps others! Thank you for what you're doing, @ROHHAD_warrior! #patientchat |
| ROHHADwarrior @ROHHAD_warrior @ohhiialexa That is the best! I try to think of how I've felt and am more understanding and patient with people than others may be. I always try to smile and be kind. Bring a positive change like you said. 😉#patientchat |
 | Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T2: T2: What do you think the role of patient influencers is? #patientchat https://t.co/VkgTgHEgxs |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @RareDiseaseDad: @patientchat T2: @patientchat T2: If my definition is correct, I’d say the role of a patient influencer is to liaise between the patient & various medical communities? I’m really partial to the advocacy side, so I’d want to make sure that supporting patients (regardless of approach) is paramount. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T4a: Awareness, funding, getting seats at the discussion table on a larger scale, and being a support to the community. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: I think positive effects come from #storytelling and #patienteducation. The premise of advocacy is to feel like you’re not alone, and if you can learn more along the way to help yourself and others, then all the better. #patientchat |
| Alan Brewington @abrewi3010 A4 I’ve been incredibly lucky in that I’ve been to conferences like #medx, asked for my opinion by national orgs, had my writing liked throughout the word. Nothing compares to a fellow patient saying “thank you for sharing” or let’s work together #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa Yeah, if they start letting advocates attend conferences at discounted rates. 🤞 #patientchat |
| Jennifer Douglas @mmejendouglas @patientchat T4a: we have the ability to share our experiences with other patients and help them though a difficult situation. We provide a people centered view of procedures that may be more accessible to them. #patientchat |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat T#3 Making meaningful strides for your community. Sharing the load w other patient leaders/influencers, so you don’t burn out #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4a feels weird clapping my own back 😁 I think there are many! A big one: as partner-patient with a Faculty of medicine I help teach future doctors about how to better work w/patients & in doing so also about my rare/complex conditions. Making real changes! #patientchat |
| Simply Kristy @SimplyKristyD RT @mmejendouglas: @patientchat T4a: @patientchat T4a: we have the ability to share our experiences with other patients and help them though a difficult situation. We provide a people centered view of procedures that may be more accessible to them. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Better yet, should be free or compensated. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ADanGrenier @patientchat Defining influencer seems to be a theme. I'm glad we're having the discussion, because I feel very similar. And TY for using the word "big." As a former teacher, I'm of the mindset that helping 1 person is worth it. Yet influencers are typically defined by quantity. #patientchat |
 | Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz T1: I prefer to be called a patient advocate rather than a patient influencer. Influencer sounds like I should have my own Instagram page to advertise #myeloma therapies. 😂 Instead, I advocate for patients. 🌻😁 #mmsm #patientchat |
| Patient Chat @patientchat Topic 4b (T4b:) coming up... #patientchat |
| ROHHADwarrior @ROHHAD_warrior @patientchat Some positive effects: 1. Someone to talk to about what you are going through 2. Advocate your story 3. Fight for rights 4. Some may be able to help get lower pharmaceutical prices(deals) * You have support and someone to help share your story.*#patientchat |
| Jennifer Douglas @mmejendouglas Sometimes I want to reach more people. Then I realize helping just one person is enough!#patientchat |
| Simply Kristy @SimplyKristyD T4 a) There are so many! The sense of community, access to info, resources, advice that would otherwise be hard to find. Being chronically ill can be lonely so knowing there are a group of like-minded people you can turn too who can empathize w/you is so important. #patientchat |
| Alan Brewington @abrewi3010 A4 I once convinced my boss at Medicaid to allow me to use design thinking techniques I learned at #Medx for a work project. Unfortunately the project got canceled but I got great reviews #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @mmejendouglas @patientchat Kudos to you, Jennifer! Thank you for sharing your story to help others. I'd love to check out/learn more about your writing. I've been doing the same through a blog I recently started. It's quite daunting sometimes, yet well worth it (for me, & hopefully others). #patientchat |
| Simply Kristy @SimplyKristyD T4 b) Having patient voices at the table within healthcare can literally change the system when done right! #patientchat |
| Patient Chat @patientchat T4b: What are some of the negative effects of patient influencers? #patientchat https://t.co/U6JIuJ9dS8 |
| Alexa Jett 🦋 @ohhiialexa T4b: I think self-serving disguised as service is off putting, and more visible than the person doing it would think. I do recoil at that behavior, and it happens more often than I would like. But, I still focus on the positives. #patientchat |
| Melissa VanHouten @melissarvh Increasing understanding of the illness among patients, doctors, researchers, legislators, media, & the general public; promoting proper care; helping patients advocate for themselves; and fighting for legislation & policies beneficial to the community as a whole. #PatientChat |
| Memej99-SickleCellLifeOfMemej @Memej99 #Love this definition of a #PatientInfluencer!! I agree! I'd like to add, in sharing our insights, I think it's also helpful that we share our own personal experiences to let them know that we've been where they are & at times we still go through the same things #PatientChat |
| Jennifer Douglas @mmejendouglas @RareDiseaseDad @patientchat Thanks Adam! I’m blogging at https://t.co/W8Fjqri6om Would love to check out your blog as well. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ADanGrenier: @patientchat A2 I think our role is to share our insights, educate as much as possible (our fellow patients, medical professionals and the general public) and show our reality. I also think it means to stay informed! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @mmejendouglas: @patientchat T2: @patientchat T2: one role would be to share personal patient experiences so that people can be aware of what to expect during treatment. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @JillZitzewitz Oh dear, would there be filters for conditions too!? Certain poses? 😂 #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ROHHAD_warrior: @patientchat T2: @patientchat T2: I believe the role of patient influencers is to provide information, guidance and support to others. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @GoldenMoe: @patientchat T #2 I think it’s fluid to meet the patient leader doing the influencing. We influence policy,research,D&I of data, patientcare, etc. As liaisons for our community,we connect them to systems they may not typically have had access to. Amplifying their diverse concerns #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4a: Support & connection. We need to come together & it seems like the patient influencer (or advocate, etc.) role is a possible bridge between various stakeholders in communities that include (but are not limited to) #RareDisease, #ChronicIllness, #MedTwitter, etc. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T4b: T4b: What are some of the negative effects of patient influencers? #patientchat https://t.co/U6JIuJ9dS8 |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T4a: T4a: What are some of the positive effects of patient influencers? #patientchat https://t.co/hBSovVa9w7 |
| Alan Brewington @abrewi3010 A4 I have had the honor of meeting @MightyCasey face to face. That was like riding a tornado through a hurricane but in a fun and interesting way 😂 meeting fellow patients without electron involvement is rewarding #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T3: T3: Do you consider yourself a patient influencer? Why or why not? #patientchat https://t.co/eHblbkBdd3 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: IMO the good side is putting the end user - the person called "patient" - in all the places where healthcare system design/construction/whatever is happening. Not a perfect record there yet, but it's happening. Dark side = astro-turfing. #patientchat |
 | Tranquility Wellness LLC @Tranquilitywell @patientchat Having allies, learning about resources to share with your family and your healthcare providers, and learning more about how to feel more empowered #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @GoldenMoe @patientchat Avoiding burnout is an excellent point, Monique! Such an overlooked aspect (at least for me, many times), yet it's so incredibly important to avoid. Coming together with & as a community (another word I love that you used!) is a must! #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4b Some are not taking this as seriously, might share dangerous info, not realizing their influence. Others might forget they’re just sharing their own experience (sure, we usually can say “many others live this” but no one voted for us to talk in their name) #patientchat |
| Carly Flumer (she/her) @carlyflumer If we’re using the term “influencer,” there are patients who want to sell you products or give you dietary and/or lifestyle advice to maintain and/or improve your health. It’s all bad juju. #patientchat |
| Melissa VanHouten @melissarvh Not all voices are represented. Also, sometimes, what those in power wish to hear is emphasized over what is truly beneficial to the community - b/c, unfortunately, egos too often get in the way for some advocates. Have to make sure we speak the truth. #PatientChat |
| Tranquility Wellness LLC @Tranquilitywell @patientchat Potentially hearing some information that may be disheartening about your health issues, and for which you may not have the resources to cope #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: What I mean by astro-turfing is the people and orgs that get coopted by industry - astro-turf = greenbacks, $$ - so their messages support that industry POV vs actual-human-persons-called-patients. Slippery slope, that. #patientchat |
| Patient Chat @patientchat Last topic (T6:) coming up... #patientchat |
| Jennifer Douglas @mmejendouglas T4b: Some are in it to sell a cure, or to propose a non medically backed treatment. #patientchat |
| Patient Chat @patientchat T5: Where is the line drawn between authenticity and becoming promotional? #patientchat https://t.co/Olstf9hHyS |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat another negative is when influencers are having a rough time or had a very bad experience & use the influence to spread negative, vendetta like message (like “all doctors are bad” or “such drug will ruin your life”). It’s not helpful & just scares other patients. #patientchat |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz @patientchat T2: Magnifying the patient voice and providing guidance, support and knowledge to patients is so important! #mmsm #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat Yet I think it could be a potential problem & thus a negative potential for some patient influencers (& in turn, many others). How much are they being paid to present this opinion? Who’s benefiting from the product/services/goods being promoted, if that’s the route? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @abrewi3010 Yeah, I can be a strong cup of coffee. But I try to use my powers only for good. 🤣 #patientchat https://t.co/fVkNjl5jah |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Transparency around payment when working with 'influencers' is so important #patientchat |
| Jennifer Douglas @mmejendouglas T5m tough one. Perhaps when you’re being paid to sell a product to other patients.... #patientchat |
| Alexa Jett 🦋 @ohhiialexa T5: Intent is always my litmus check, and I check in with myself about it often. Am I doing this to actively help and serve? Or do I want to do this to promote me and get my name out there? I think we all need accountability. #patientchat |
| Alan Brewington @abrewi3010 A4b the creation of celebrity patient advocates. They spend more time on book tours or tv than helping patients. They value follower counts more than personal relationships #patientchat |
| Alan Brewington @abrewi3010 This!!! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Tranquilitywell @patientchat Outstanding point. In this situation, the influencer may feel like they're helping, but many times (well, at least for me, early in the symptom manifestation & diagnosis process), the patient on the receiving end may be overwhelmed. Resources to cope...so important. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @abrewi3010 Yes! And I know people who are trying to become *these* and doing attention grabbing stuff, instead of actually advocating anymore. #patientchat |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe @patientchat T#5 it doesn’t meet the “ask” or address an actionable (not promotional) theme in the patient community, it’s not for me. #patientchat |
| ROHHADwarrior @ROHHAD_warrior @patientchat T4b: I don't like to think this way; but, the influencer gets personal gain from sharing their story. They are popular (followers), or get many sponsor partner freebees. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: Because of my journo background, I'm 100% willing/able to comfort the afflicted and afflict the comfortable. IOW, I'll bite any hand that attempts to feed me, if the other hand has a leash in it. I might be broke, but I'm honest 🤣 #patientchat |
| Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz @patientchat T3: Sharing my #myeloma story has helped me identify more opportunities to support other #myeloma patients. Still so much more I’d like to do in this area. 🌻😁💚 #mmsm #patientchat |
| Alan Brewington @abrewi3010 A4b another side effect is patient lonilness or jealousy. Why am I not a cool kid or why did they get invited to X when I clearly smarter. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ohhiialexa: T1: T1: I prefer advocate or activist, because influencer has superficial connotations. We aren’t here to promote a weight loss product on instagram. We are fighting for our, and our communities livelihood! #patientchat |
| Simply Kristy @SimplyKristyD T4 b) he only negative effect I could see out of a patient influencer would be if they were to use their platform to push a personal agenda versus the greater needs of the community they support. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 Love this!! We are ADVOCATES!! We're fighting for our communities...etc!Fantastic way to put it @ohhiialexa ! |
| Jennifer Douglas @mmejendouglas Just found this chat today! Really interesting conversations! Thanks for letting me contribute ! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T1: T1: What is a patient influencer? #patientchat https://t.co/MlGTlpz6Ef |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: T5: T5: Where is the line drawn between authenticity and becoming promotional? #patientchat https://t.co/Olstf9hHyS |
| Alexa Jett 🦋 @ohhiialexa @abrewi3010 Jealousy is very big in (certain parts) the community, and not talked about enough. #patientchat |
| Simply Kristy @SimplyKristyD @mmejendouglas It was great chatting with you, Jennifer 😊 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @mmejendouglas #patientchat https://t.co/hh7MaLK1VD |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @RareDiseaseDad: @patientchat T4a: @patientchat T4a: Support & connection. We need to come together & it seems like the patient influencer (or advocate, etc.) role is a possible bridge between various stakeholders in communities that include (but are not limited to) #RareDisease, #ChronicIllness, #MedTwitter, etc. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @GoldenMoe: @patientchat T#3 Making meaningful strides for your community. Sharing the load w other patient leaders/influencers, so you don’t burn out #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @mmejendouglas: @patientchat T4a: @patientchat T4a: we have the ability to share our experiences with other patients and help them though a difficult situation. We provide a people centered view of procedures that may be more accessible to them. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ROHHAD_warrior: @patientchat Some positive effects: 1. Someone to talk to about what you are going through 2. Advocate your story 3. Fight for rights 4. Some may be able to help get lower pharmaceutical prices(deals) * You have support and someone to help share your story.*#patientchat |
| Alexa Jett 🦋 @ohhiialexa @Memej99 #patientchat https://t.co/qEjAPoC1cS |
| Patient Chat @patientchat @mmejendouglas So glad you could join us today! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @Patchoulimommy Yep! #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Melissa VanHouten @melissarvh Not sure, but I can tell you I don't make any $$; nor do I have a desire 2 be "popular." I don't wish 2 be a professional patient; I just want 2 #CureGP, & if I can get others involved in that cause, I'm going to do so. This isn't a lifestyle I'm keen on maintaining. #PatientChat |
| Alan Brewington @abrewi3010 @ohhiialexa Taking those types of risk hurt the patient on a individual level along with damaging the community on a representative level. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T5 for me the line is if it comes from me and is authentic. If a company gives me a deal or product specifically so that I would talk about it, it has to relate to my situation & I won’t say anything I don’t think. I also always mention it. It’s quite rare though! #patientchat |
| Simply Kristy @SimplyKristyD T5 a) This is something I try to balance. I am an advocate who has built a business to help patients like me. I try to only bring up my professional role when there is an authentic need raised by the other party #patientchat |
| Simply Kristy @SimplyKristyD T5 b) When I am acting as a patient advocate my only role is to add value from my personal, authentic experience, never to sell a service. #patientchat |
| Alexa Jett 🦋 @ohhiialexa CT: I am RELIEVED to hear that the “I” word isn’t popular. Plus, I am encouraged that there are many more good advocates than bad! ❤️ #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Probably when something feels “forced.” #patientchat |
| Alan Brewington @abrewi3010 A5 when one loses the ability to shut up in order to learn. Being a patient influencer/advocate/Superman is a verb. There is always more to learn and improve on. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @Tranquilitywell: @patientchat Having allies, learning about resources to share with your family and your healthcare providers, and learning more about how to feel more empowered #patientchat |
| Carly Flumer (she/her) @carlyflumer CT: Patient advocacy is a wonderful role/journey to be in. The ability to influence the medical community, share stories, and relate to other patients is like none other! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 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 |
| Simply Kristy @SimplyKristyD CT: It was interesting to see so many different views on the term 'influencer.' It seems like advocating for patients - ourselves and others - is top of mind #patientchat |
| Alan Brewington @abrewi3010 CT How might we... will always work better than I did.... we need more we in healthcare. #patientchat |
| ROHHADwarrior @ROHHAD_warrior @patientchat CT: We patients, caregivers, advocates seem to prefer the title Advocate rather than Influencer. Influencers are there to help others, but some may push the line to try and promote. What would you want to be know for? #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat today. I'll tweet out the transcript about 15 minutes past the hour |
| Simply Kristy @SimplyKristyD CT 2): Thankful to connect with everyone and how amazing it is to see so many connected patients. #patientchat |
| Patient Chat @patientchat We hope to see you on November 13th for our next Empowered #patientchat https://t.co/my5iTY3uJw |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: We hope to see you on November 13th for our next Empowered #patientchat https://t.co/my5iTY3uJw |
| Alan Brewington @abrewi3010 CT as a chronic patient with a political scientist degree I must remind everyone to please #vote next week if you haven’t already. Our votes matter and it does matter who you vote for! #patientchat |
| 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 in 2021! |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD @patientchat with good intentions. And I’d say most people are. Yet unfortunately, there may be some who are out to take advantage of these unimaginable situations some patients are in. #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: We hope to see you on November 13th for our next Empowered #patientchat https://t.co/my5iTY3uJw |
| Simply Kristy @SimplyKristyD @patientchat I would love to be a special guest in 2021 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @abrewi3010 Done. Voted on 10/2, marked on my voter dashboard as received/counted on 10/7. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @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 in 2021! |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat CT We are more advocates or communicators than influencers, even though we always hope to have a positive influence! Authenticity seems to be what unites us, and I think we all know the responsibility we have towards our communities. Stay safe everyone! #patientchat |
| Monique C Gore-Massy (she) #ACR22 @GoldenMoe 👏🏾👏🏾 join us.. #patientvoice #patientadvocate #PatientExperience #lupus #advocacy |
| Alan Brewington @abrewi3010 @MightyCasey Me too! Hopefully patient voting is at a record high. #patientchat |
| Simply Kristy @SimplyKristyD Thanks everyone for a wonderful #patientchat 😊 |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: The discussion around defining patient influencer needs to continue, & perhaps be reshaped or reconsidered. I prefer patient advocate, which implies I may have a positive influence & is more likely to avoid a multiple layers of potential negative connotation. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa I hear that, Alexa! I was wondering if I was on the outside looking in (which wouldn't be too bad, I guess), with my questioning, wondering, & lack of understanding. And well said about the more good advocates than bad. Overall, it's a wonderful community! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ohhiialexa: @Memej99 #patientchat https://t.co/qEjAPoC1cS |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad I think it’s generational, actually! Influencer to me in my 20’s may mean something much different to even someone just 5-10 years older than me. I think it was first used because of the *positive* associations! 😂 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa Excellent perspective, & so important. I’m a broken record here...it could be that we need to define (perhaps re-define) influencer. I’d venture to guess that most of us using the influencer/advocate terms mean the same or similar things, work towards similar goals. #patientchat |
#patientchat content from Twitter.