#WEGOHealthChat Transcript
Healthcare social media transcript of the #WEGOHealthChat hashtag.
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See #WEGOHealthChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Social Health Network @socialhealthnet Make sure to let us know you're here for the #WEGOHealthChat by introducing yourself and saying hi! |
| Social Health Network @socialhealthnet Today's #WEGOHealthChat is all about #PatientLeader insights. As an advocate, you know your own story inside and out. BUT, you possess so much knowledge from the interactions you have with your community as well! Let's chat about these insights today & how important they are. https://t.co/uxByREjoCR |
 | Barby Ingle Official @BarbyIngle I am @BarbyIngle Pres of @powerofpain, EIC of @iPainFoundation, author, friend, wife, lover of life and #CheerleaderofHOPE here for 10/9/2018 #WEGOHealthChat |
 | Beth Morton @beth_morton RT @wegohealth: Today's #WEGOHealthChat is all about #PatientLeader insights. As an advocate, you know your own story inside and out. BUT, you possess so much knowledge from the interactions you have with your community as well! Let's chat about these insights today & how important they are. https://t.co/uxByREjoCR |
 | Julie Croner @justagoodlife @BarbyIngle @powerofpain @iPainFoundation Hey Barby!! Is it true you'll be at #Connect2Health next week?? #WEGOHealthChat |
| Social Health Network @socialhealthnet Trying to keep up? Make life easier for yourself by following these chat guidelines. 1) Questions will be labeled Q1, Q2, Q3, etc. Your replies should be labeled A1, A2, A3, etc by you! 2) Make sure you always include the #WEGOHealthChat in your tweets. |
| Social Health Network @socialhealthnet Alright, let's get this October #WEGOHealthChat party started! Question 1 is coming right up. https://t.co/fnCvclO9oY |
| Social Health Network @socialhealthnet Q1: Why do you believe it’s important for companies to include the patient voice in their processes? #WEGOHealthChat |
| Beth Morton @beth_morton Hi everyone! I'm Beth, a migraine advocate joining from Vermont where we are in the middle of foliage (and tourist) season 🍁 #wegohealthchat |
 | Christina Doherty @C_DohertyPaints @wegohealth A1: #wegohealthchat I think that sometimes there is a disconnect between what companies think will work and what actually works in real life |
 | Natalie 🦓 @_Nataliea Natalie, in CA, in and out of chat on my way to work (and all-important pre-work coffee stop). #raredisease, a few of them, and #autoimmune stuff. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle YES!!!!!!!!!!! #Connect2Health I was chosen for a #PatientsIncluded scholarship. So looking forward to joining @KenRayTaylor who was the @wegohealth Grand Prize winner and all the WEGO Health Staff & 2018 winners in Boston next week for the ceremony! #WEGOHealthChat |
| Social Health Network @socialhealthnet Follow up to Question 1 - What healthcare companies do you know that incorporate patients? Tag them! #WEGOHealthChat |
 | Alan Brewington @abrewi3010 A1 health literacy and vulnerable communication is a real problem in healthcare. #everyoneincluded helps correct and improve communication #WEGOHealthChat |
 | Dr Mary Ann Wilmarth @Back2backPT RT @wegohealth: 30 minutes until our October #WEGOHealthChat! Today we'll be chatting about #PatientLeader Insights. Go grab lunch, a beverage and join us here shortly! https://t.co/dexZ4NWHT0 |
| Christina Doherty @C_DohertyPaints @wegohealth A1: pt2 #wegohealthchat It’s so important that the consumer is involved with the product/service. It can only benefit both sides. |
| Beth Morton @beth_morton A1: Better products! Whether is it drugs, devices, etc., we have lived experience and know both what we need and what will work. #wegohealthchat |
 | Ken Taylor, RPIC @KenRayTaylor A1: Nothing about us with out us! The patient can be the best educator and let you know how close to the bulls eye you are. In most cases the patient isnt looking to make money, giving a different perspective than a company thats money drivin. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A1. Because we know ourselves the best & we are responsible for our health between appts. If we dont have buy in to the treatment or care plan we will not have as good of an outcome! Unless you experience chronic illness, you dont get it our voice is needed! #WEGOHealthChat |
 | FatDag 🇺🇸 @FatDag A1 - the patient perspective is extremely valuable since we know the mind is powerful, unless you’ve lived through it, you can only read 2nd hand accounts. 1st hand accounts provide better solution when couple with expert advice. #WEGOHealthChat |
 | Kat M. Moss @Cambridgeport90 RT @beth_morton: A1: A1: Better products! Whether is it drugs, devices, etc., we have lived experience and know both what we need and what will work. #wegohealthchat |
| Christina Doherty @C_DohertyPaints @justagoodlife @wegohealth #wegohealthchat I think a good example is often the computer systems used in the hospital. Every hospital I have been to the nurses openly |
| Christina Doherty @C_DohertyPaints @justagoodlife @wegohealth #wegohealthchat Hate the computer systems. They aren’t user friendly and clearly the nurses themselves weren’t consulted in the design |
| Social Health Network @socialhealthnet Alright, let's move on to Question 2. #WEGOHealthChat https://t.co/PAWyGafIz3 |
 | Kristen @srvingofspprt Very late but I'm here! Kristen here, tweeting from Boston! #wegohealthchat |
| Ken Taylor, RPIC @KenRayTaylor A1 followup: @JanssenUS , @bioXcellerator, @KetamineWellnes to name a few. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q2 - When it comes to incorporating the patient voice, do you think it’s important to include patients, patient leaders or both? #WEGOHealthChat |
| Kristen @srvingofspprt A1. It's crazy how many times assumptions are made about patients. Don't you think you'd save time, money and effort just going right to the source? #wegohealthchat |
| Christina Doherty @C_DohertyPaints @wegohealth #wegohealthchat @Theramu4u @backpackhealth @mightywellEmily |
| Dr Mary Ann Wilmarth @Back2backPT Hello @wegohealth #PatientLeaders I'm joining #wegohealthchat during my #IVIG infusion where I chill🤣lol😂for several hours👍 The Wi-Fi can be marginal, but right now things are good😊 Happy Tuesday y'all‼️ @Back2backPT |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: A1 followup: A1 followup: @JanssenUS , @bioXcellerator, @KetamineWellnes to name a few. #WEGOHealthChat |
 | Leslie Krongold, EdD @Leslie_GHF RT @wegohealth: Q1: Q1: Why do you believe it’s important for companies to include the patient voice in their processes? #WEGOHealthChat |
| Alan Brewington @abrewi3010 A2 all patients are leaders, some just have different levels of interest. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A2: #wegohealthchat I think that ideally both. I have seen it work well reaching patients through #patientleader s. But I just think that |
| FatDag 🇺🇸 @FatDag @wegohealth A2 - #WEGOHealthChat both. If space is limited patient leaders certainty can carry the message, however every single person thinks and reacts differently. So the more complex the issue the more brains it takes to understand it, then seek a solution. |
| Ken Taylor, RPIC @KenRayTaylor A2: I would say include both as the patient may not be a leader but can relay to the leader who has the means to spread awareness and education. Some patients would like to remain silent or in the background. #WEGOHealthChat |
| Alan Brewington @abrewi3010 A2 Design Thinking doesn’t care about titles, only humans do. How might we...? Works with anyone looking to find human centered solutions #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A2. BOTH PTs & PT leader voices r important. We r each unique & individual & although we have similar symptoms, how we r able 2 manage them varies by person So we need as many voices as possible & Some patients lose WC etc for sharing so leaders r their voice #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A2: pt3 #WEGOHealthChat A good #patientleader ideally is aware of the various needs in the community, but they just can’t speak for everyone |
| Julie Croner @justagoodlife A2 I do whole heartedly believe (and @wegohealth has done research to back it up) that people are more likely to listen to #patientleaders who are online sharing content, advice, stories, etc. #WEGOHealthChat |
| Julie Croner @justagoodlife I agree with this - using a #PatientLeader to help crowdsource is a great way to utilize them! And pay them of course! #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @justagoodlife Exactly! All perspectives need to be considered. Everyone has different needs and priorities #wegohealthchat |
| Beth Morton @beth_morton A2: Not only interest, opportunity. I have a ton of interest, but I'm reaching out left and right and not getting any partnership opportunities. Breaking into these partnerships seems tricky. #WEGOhealthchat |
| Kristen @srvingofspprt RT @abrewi3010: A2 all patients are leaders, some just have different levels of interest. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A2:pt4 Not to mention,patient leaders may be focused more on the big picture, while others are just fighting the day to day #wegohealthchat |
 | Maya Northen Augelli @mayanorthen Better late than never. Jumping into #WEGOHealthChat! Trying to catch up. |
| Alan Brewington @abrewi3010 A2 to often patient leader is defined as those that sell the most books or have the most followers. Leaders are anyone wanting a higher QOL. #wegohealthchat |
| Social Health Network @socialhealthnet Question 3, coming next! #WEGOHealthChat @RareCandace this one's for you ;) https://t.co/y1FkJE2gAa |
| Social Health Network @socialhealthnet Q3 - Why do you think it’s important to incorporate Patient Leaders who are connecting with other patients on social media and advocating for their condition? #WEGOHealthChat |
| Social Health Network @socialhealthnet For Q3, think about those blogging, running Facebook groups, Twitter Chats, etc. Do you believe their interactions with other patients are valuable? What additional insights do you believe these leaders bring? #WEGOHealthChat |
| Maya Northen Augelli @mayanorthen @justagoodlife Hey! jobby Job got in the way again, but I'm here now! #WegoHealthchat |
| Alan Brewington @abrewi3010 @_Nataliea I’m the exact same way. Advocacy is turning titled based, not those searching for human centered solutions #WEGOHealthChat |
| Natalie 🦓 @_Nataliea @wegohealth Access to info. #raredisease patients have access to hundreds of people, whereas IRL a doctor might see two or three in a career at most. #wegohealthchat A3 |
| FatDag 🇺🇸 @FatDag A3 - In the right social media outlets, some closed FB groups and other private communities give a sense of security in sharing the truth anonymously as they work towards their health goals. Face to Face conversation often is limited by self embarassment #wegohealthchat |
| Christina Doherty @C_DohertyPaints @wegohealth A3: #wegohealthchat This is definitely the realm that Im familiar with as a vlogger. It has been incredibly successful in reaching all types |
| Alan Brewington @abrewi3010 @justagoodlife I don’t understand for some reason. To me it sounds like you have a narrow definition of who is considered a leader and who isn’t. Can you explain more? #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A3: p2 #wegohealthchat of people. I have had many people say I was the reason they were diagnosed, but I also have Drs and nurses say |
| Maya Northen Augelli @mayanorthen A3: Social media makes the world smaller - connecting online extends our reach, & we may be able to incorporate people/perspectives/info that we wouldn't if we weren't on SoMe. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A3. I am a 'patient leaders' who blogs, writes, shares, videos & influences. I know that I make a difference because I wished I had some1 who does what I do when I was searching for answers & advice years ago I became what I needed & share to lessen struggles #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth Oops that was part 4 #wegohealthchat |
| Ken Taylor, RPIC @KenRayTaylor A3: Most new patients arent in a position to educate and bring awareness to the pain community. A Patient Leader can help the patient be heard in the right community or group or give direction when the patient is ready. #WEGOHealthChat |
| Kristen @srvingofspprt RT @KenRayTaylor: A3: A3: Most new patients arent in a position to educate and bring awareness to the pain community. A Patient Leader can help the patient be heard in the right community or group or give direction when the patient is ready. #WEGOHealthChat |
| Maya Northen Augelli @mayanorthen A3: Also, many patients/PLs may feel limited in advocacy b/c illness prevents them from physically being able to travel/participate in events/etc, but they're reachable online. Again, it allows us to incorporate more people/perspectives. #WEGOHealthChat |
| Beth Morton @beth_morton A3: I look at patient leaders as our members of congress. We, was patients, are their constituents. They hear our needs and complaints, and take them to various companies and organizations to advocate on our behalf (ideally). #wegohealthchat |
 | Amanda G @LAlupusLady Joining late... Hello from LA. A3 it is important to have Patient Leaders connecting on social media because no one can understand what Living with #lupus (insert condition here) without the voice and experience of someone who has. #WEGOHealthChat |
| Maya Northen Augelli @mayanorthen This! #WegoHealthChat |
| Kristen @srvingofspprt ohhhh, I like this analogy! Powerful #WEGOHealthchat |
 | Kelli Carlson @kelliecarlson33 A2: Both. While patient leaders are amazing & spend a ton of time learning patient needs & know how to communicate, it’s still important to include patients that have insight to their specific needs & not just a broad overview of patient needs. #WEGOHealthChat |
 | WHATNEXT.com @WHATNEXT_Cancer I'm late to the party #wegohealthchat |
| Kristen @srvingofspprt @WhatNext_Cancer happy you could make it! #WEGOHealthChat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: A1. Because we know ourselves the best & we are responsible for our health between appts. If we dont have buy in to the treatment or care plan we will not have as good of an outcome! Unless you experience chronic illness, you dont get it our voice is needed! #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A1 followup: A1 followup: @JanssenUS , @bioXcellerator, @KetamineWellnes to name a few. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A2. BOTH PTs & PT leader voices r important. We r each unique & individual & although we have similar symptoms, how we r able 2 manage them varies by person So we need as many voices as possible & Some patients lose WC etc for sharing so leaders r their voice #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A3. I am a 'patient leaders' who blogs, writes, shares, videos & influences. I know that I make a difference because I wished I had some1 who does what I do when I was searching for answers & advice years ago I became what I needed & share to lessen struggles #WEGOHealthChat |
| Julie Croner @justagoodlife @Chrisa_Hickey That's awesome. My #Rheum always says she loves when I come in for appointments because I teach her things from the community! haha #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A3: pt5 #wegohealthchat works for me and that often is an opportunity to partner with brands and help make that connection with patients |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A1: A1: Nothing about us with out us! The patient can be the best educator and let you know how close to the bulls eye you are. In most cases the patient isnt looking to make money, giving a different perspective than a company thats money drivin. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A2: A2: I would say include both as the patient may not be a leader but can relay to the leader who has the means to spread awareness and education. Some patients would like to remain silent or in the background. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A3: A3: Most new patients arent in a position to educate and bring awareness to the pain community. A Patient Leader can help the patient be heard in the right community or group or give direction when the patient is ready. #WEGOHealthChat |
| Social Health Network @socialhealthnet Ready for the next question?? #WEGOHealthChat https://t.co/OoQLlybPrL |
| Alan Brewington @abrewi3010 @justagoodlife Who gets to determine whose a leader and who isn’t? Am I leader because I’ve had access to some cool resources? That determination worries me greatly. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q4 - Have you ever had the opportunity to be involved in a research opportunity for your community? What was your experience? Examples: Perhaps you took a survey, completed a WEGO Health Truvio or Community Insight group, participated on an Advisory Board, etc #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A4: #wegohealthchat I have probably filled out dozens of surveys as well as beta tested a couple sites and apps. But more than that, I |
| Maya Northen Augelli @mayanorthen Q4: I've taken a Truvio survey through @wegohealth and also done several surveys/given info through @savvy_coop. I'd love to get more involved in terms of advisory boards and the like! #wegohealthchat |
| Christina Doherty @C_DohertyPaints @wegohealth A4: pt2 #wegohealthchat recently had the opportunity to donate some of my blood, spinal fluid, and tissue samples for ongoing research |
| Kelli Carlson @kelliecarlson33 A3: it’s important because these are the people who are, intentionally or unintentionally, collecting data around patient needs on a large sample group by using patient language & practice, rather than just using theory. #WEGOHealthChat |
| WHATNEXT.com @WHATNEXT_Cancer A4 Yes, I have done several at https://t.co/0viiKwflXE as we routinely have requests for participants to complete surveys, and one for @wegohealth I look at them as a way that we can help shape the next generation of treatments or drugs that are to come. #wegohealthchat |
| FatDag 🇺🇸 @FatDag A4: Every email I get, every post, comment, tag, story I hear in person is research. Not in the sense of question, but I'm constantly thinking, evaluating, trying to learn how to best help my community #wegohealthchat |
| Amanda G @LAlupusLady A4 Yes. I have taken participated in many ways from @wegohealth Insight Groups to surveys and I participate in clinical trials. It is vital to have #PatientsIncluded and involved in research awareness and opportunities. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A4. I have done many clinical trials, many surveys, completed WEGO Health Truvio, in person & online focus groups, served on several pharma PT advisory boards, served on the @wegohealth & @healthevoices advisory boards & been a speaker/host at many conferences #WEGOHealthChat |
| Beth Morton @beth_morton A4: No clinical trials, but numerous surveys and focus groups. I'm a researcher myself, so I jump at any chance I can to contribute. I'd love to do more as my health allows. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth A4: pt3 #wegohealthchat Which honestly is so cool! In our community, few things are understood so a lot of my treatment is very very new |
| Julie Croner @justagoodlife RT @LAlupusLady: A4 Yes. I have taken participated in many ways from @wegohealth Insight Groups to surveys and I participate in clinical trials. It is vital to have #PatientsIncluded and involved in research awareness and opportunities. #WEGOHealthChat |
| Kelli Carlson @kelliecarlson33 A4: I have with @CreakyJoints/@GHLForg ... it was an excellent opportunity for patients, researchers, & physicians to come together & discuss the best way to communicate with one another via social media around patient needs & research findings. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A4. I have done many clinical trials, many surveys, completed WEGO Health Truvio, in person & online focus groups, served on several pharma PT advisory boards, served on the @wegohealth & @healthevoices advisory boards & been a speaker/host at many conferences #WEGOHealthChat |
| Dr Mary Ann Wilmarth @Back2backPT I #advocate 4 several Diagnoses / Causes: #arthritis #OA #RA #PsA #sjogrens #CVID #Crohns #Colitis #Migraines #Endo #infertility #KidneyDisease #Alzheimers #Cancer It may seem like a lot, but some >others & vary times. @Back2backPT #PatientLeaders #wegohealthchat @wegohealth https://t.co/fwK8h0oeTe |
| Ken Taylor, RPIC @KenRayTaylor A4: I have participated in a few groups and advisory boards. Also I have been a speaker and host at some conferences. It does empower me and makes me feel important like i have something worthy to share. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A4: A4: I have participated in a few groups and advisory boards. Also I have been a speaker and host at some conferences. It does empower me and makes me feel important like i have something worthy to share. #WEGOHealthChat |
| Kristen @srvingofspprt @C_DohertyPaints @wegohealth thank goodness there are Patient Leaders like yourself raising awareness! #wegohealthchat |
| Beth Morton @beth_morton .Oh, and I'm part of the new American Registry of #Migraine Research which is funded by the @amfmigraine. It's going to be an important tool in future research on migraine treatments. #WEGOHealthChat |
| Julie Croner @justagoodlife RT @Back2backPT: I #advocate 4 several Diagnoses / Causes: I #advocate 4 several Diagnoses / Causes: #arthritis #OA #RA #PsA #sjogrens #CVID #Crohns #Colitis #Migraines #Endo #infertility #KidneyDisease #Alzheimers #Cancer It may seem like a lot, but some >others & vary times. @Back2backPT #PatientLeaders #wegohealthchat @wegohealth https://t.co/fwK8h0oeTe |
| Julie Croner @justagoodlife RT @beth_morton: .Oh, and I'm part of the new American Registry of #Migraine Research which is funded by the @amfmigraine. It's going to be an important tool in future research on migraine treatments. #WEGOHealthChat |
| Julie Croner @justagoodlife There are some truly impactful #PatientLeaders here for the #wegohealthchat today! You guys should be proud of yourselves! |
| Kristen @srvingofspprt A4. I've taken part in a few research studies and part of a clinical trial, it was crazy how disconnected the panel was with the reality of my experience #wegohealthchat |
| Social Health Network @socialhealthnet Question 5 is on deck. #WEGOHealthChat https://t.co/P4wf8zPdzh |
| Dr Mary Ann Wilmarth @Back2backPT @justagoodlife @wegohealth Thank you! It is a good time😊 In between all the checks & bottle changes & beeps, etc. By the end I often want to stay & sleep...no distractions then & comfy chair🤩😴😍 #wegohealthchat @Back2backPT |
| Social Health Network @socialhealthnet Q5 - When you’ve had opportunities to speak up, do you share only your story or do you share insights on behalf of your community? #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth Q5: #wegohealthchat I think our job as #patientleader s is to use our platforms to raise up the other voices who may not have one |
| Social Health Network @socialhealthnet Follow up to Question 5 - do you think it's important for a #PatientLeader to be a voice for those who can't or don't want to speak up? #WEGOHealthChat |
| FatDag 🇺🇸 @FatDag A5: I've said before, If I tell my story, you only get one solution. If I share the stories from my community, you get the chance to hear many, many more. No one solution works for all, so I insist on sharing it all. #wegohealthchat |
| Maya Northen Augelli @mayanorthen A5: depends what they’re looking for. If it’s a survey/study on personal experience, I share that. If it’s about the overall patient experience I try to share a bit of (what feels like) a collective voice. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth Q5: pt2 I do share my own experiences, but I think that sharing everyone’s experiences is hugely valuable. My story is just #wegohealthchat |
| Barby Ingle Official @BarbyIngle A5. It depends on the situation and what it calls for. Sometimes I share my story, sometimes others, sometimes macro facts about chronic illness and some situations call for micro info that is Dx specific. You have to know your audience & when to go w which info #WEGOHealthChat |
| Amanda G @LAlupusLady A5 I openly share my story wherever I am, whether I’m online, on stage at a Healthcare conference or on Capitol Hill and everywhere in between. The patient experience can only be understood when people understand. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth Q5: pt3 ONE story. You can’t define a community that way. Plus collaboration is one of the most important things we can do. #wegohealthchat |
| Julie Croner @justagoodlife RT @wegohealth: Follow up to Question 5 - do you think it's important for a #PatientLeader to be a voice for those who can't or don't want to speak up? #WEGOHealthChat |
 | Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A1 Because it's our lives and health that is at stake... #WEGOHealthChat |
| Beth Morton @beth_morton A5 Mostly I've been speaking for myself, but I have a pretty big circle of friends who also have chronic #migraine. To the extent I know their stories, I will share their experiences, too. It's helpful either to corroborate mine or show a range of experiences. #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth Q5: pt4 If there are too many single voices we drown eachother out, but only when we unite in one voice will we be heard #wegohealthchat |
| Amanda G @LAlupusLady A5 Yes. As I share my patient experience, I do so knowing that many are not. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle @wegohealth 5A followup: I think its important 2 remember as a patient leader every1 is different, Yes speak up for those like you, but remember that others need something different. I love to advocate for 'access to proper & timely care' whatever that looks like individually #WEGOHealthChat |
| FatDag 🇺🇸 @FatDag RT @C_DohertyPaints: @wegohealth Q5: @wegohealth Q5: pt3 ONE story. You can’t define a community that way. Plus collaboration is one of the most important things we can do. #wegohealthchat |
| Maya Northen Augelli @mayanorthen A5: That said, mine is tricky. Because often sharing opportunities revolve around a piece of my illness (like depression or anxiety), or mental health in general but very rarely my specific condition. So it's often kind of a combination of the two. #wegohealthchat |
| Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A2 #wegohealthchat both |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: @wegohealth 5A followup: @wegohealth 5A followup: I think its important 2 remember as a patient leader every1 is different, Yes speak up for those like you, but remember that others need something different. I love to advocate for 'access to proper & timely care' whatever that looks like individually #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A5. It depends on the situation and what it calls for. Sometimes I share my story, sometimes others, sometimes macro facts about chronic illness and some situations call for micro info that is Dx specific. You have to know your audience & when to go w which info #WEGOHealthChat |
| Ken Taylor, RPIC @KenRayTaylor A5: I use my story to try and relate to others that may be going through similar situations but i love sharing other patient/caregiver stories to make everyone im talking to feel included. I enjoy making people feel like they are NOT alone. #WEGOHealthChat |
 | CreakyJoints.org @CreakyJoints RT @kelliecarlson33: A4: A4: I have with @CreakyJoints/@GHLForg ... it was an excellent opportunity for patients, researchers, & physicians to come together & discuss the best way to communicate with one another via social media around patient needs & research findings. #WEGOHealthChat |
| Beth Morton @beth_morton A5b. Yes, those who can't or don't want to speak up often have some of the biggest challenges - access to care, access to knowledge even. Speaking up on their behalf can reveal gaps in patient needs and where programs, policies, practices are falling short. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A5: A5: I use my story to try and relate to others that may be going through similar situations but i love sharing other patient/caregiver stories to make everyone im talking to feel included. I enjoy making people feel like they are NOT alone. #WEGOHealthChat |
| Social Health Network @socialhealthnet Last question is coming up. Let's bring this chat home! #WEGOHealthChat https://t.co/1BGmx2Rxt3 |
| Julie Croner @justagoodlife RT @beth_morton: A5 Mostly I've been speaking for myself, but I have a pretty big circle of friends who also have chronic #migraine. To the extent I know their stories, I will share their experiences, too. It's helpful either to corroborate mine or show a range of experiences. #WEGOHealthChat |
| FatDag 🇺🇸 @FatDag A5 - addendum: Plus, nothing makes someone feel 'normal' faster than them hearing that so many others experience the same things. Once we get here mentally, the physical healing can begin. #wegohealthchat |
| Dr Mary Ann Wilmarth @Back2backPT A1 if #companies or #hospitals or any #healthcare related facilities have a disconnect between #patients & #product or #outcome -then the reason for doing or existing is not really validated & it becomes > of a #robotic process w/no concern for pts‼️ #WEGOHEALTHCHAT @Back2backPT |
| Christina Doherty @C_DohertyPaints @wegohealth #wegohealthchat Absolutely! I talk to people everyday in situations that I had never even thought of. I am constantly being reminded of my |
| Social Health Network @socialhealthnet Q6 - What is the biggest value you believe you bring when it comes to giving insights into your community? Why should a company come and talk to you? #WEGOHealthChat |
| Ken Taylor, RPIC @KenRayTaylor A5 follow up: I find it very important to be a voice for those in the shadows without the courage to be heard. Not everyone can or wants to be in a spotlight but everybody has a story to spotlight. #iHaveTheNerveToBeHeard #WEGOHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth #wegohealthchat pt2 privilege and access to appropriate care. I am just now learning about problems that I had no idea were problems |
| Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A3 as a Patient leader my groups help keep my eyes open to what people are going thru at every level/stage of disease/life/economic not just what I've been thru or where I'm at. #wegohealthchat |
| Maya Northen Augelli @mayanorthen A5 Followup: Yes, with the caveat that obviously each person's experience is different/each person is different, and acknowledging that there may be times that others have a totally different experience than me. #WegoHealthChat |
| Christina Doherty @C_DohertyPaints @wegohealth #wegohealthchat pt3and unfortunately a lot of these patients don’t have the ability to speak up for themselves. They are just in crisis mode |
 | Bronnie Lennox Thompson 🐾🇳🇿🌈🎓 @adiemusfree RT @BarbyIngle: A3. I am a 'patient leaders' who blogs, writes, shares, videos & influences. I know that I make a difference because I wished I had some1 who does what I do when I was searching for answers & advice years ago I became what I needed & share to lessen struggles #WEGOHealthChat |
| Dr Mary Ann Wilmarth @Back2backPT A2 I think both #patients & #PatientLeaders are important to include. Ideally, the #Leaders represent the pts. However, it is good to hear straight from pts as well- in various formats. #wegohealthchat @wegohealth @Back2backPT |
| Julie Croner @justagoodlife This is definitely something we as #PatientLeaders need to be cognizant of. Have to read the room! If you're being asked on behalf of your community, don't just talk about your experience #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A6. My biggest value to the pain community is that I have tried many treatment options myself That I have personally spoken w more than 5000 patients myself about their challenges & overcoming options, and I have the opportunities to share w larger audiences often #WEGOHealthChat |
| Julie Croner @justagoodlife RT @Back2backPT: A1 if #companies or #hospitals or any #healthcare related facilities have a disconnect between #patients & #product or #outcome -then the reason for doing or existing is not really validated & it becomes > of a #robotic process w/no concern for pts‼️ #WEGOHEALTHCHAT @Back2backPT |
| Christina Doherty @C_DohertyPaints @wegohealth #wegohealthchat Alrighty guys! I have to head into Physical Therapy(I’ve just been sitting here in the parkig lot lol)It was great chatting! |
| FatDag 🇺🇸 @FatDag A6 - I bring the voice of hundreds of thousands. I bring the truth, and deliver it with trust and authority. I respect the members of our community and in turn, am rewarded with a stage, a platform and a microphone. We WILL change the word! #wegohealthchat |
| Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A3 we know and empathize with the patients because we are one, we know the struggle, we know the pain. #WEGOHealthChat |
| Julie Croner @justagoodlife RT @Back2backPT: A2 I think both #patients & #PatientLeaders are important to include. Ideally, the #Leaders represent the pts. However, it is good to hear straight from pts as well- in various formats. #wegohealthchat @wegohealth @Back2backPT |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A6. My biggest value to the pain community is that I have tried many treatment options myself That I have personally spoken w more than 5000 patients myself about their challenges & overcoming options, and I have the opportunities to share w larger audiences often #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A5 follow up: A5 follow up: I find it very important to be a voice for those in the shadows without the courage to be heard. Not everyone can or wants to be in a spotlight but everybody has a story to spotlight. #iHaveTheNerveToBeHeard #WEGOHealthChat |
| Ken Taylor, RPIC @KenRayTaylor A6: Just being heard is a big value i can offer to my community. It can be in many forms. The best is the one that reaches them most. Print, video or in person events are all great ways to bring insight to the community. #iHaveTheNerveToBeHeard #WEGOHealthChat |
| Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A4 yes. #wegohealthchat |
| Julie Croner @justagoodlife RT @scrufton73: |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: A6: A6: Just being heard is a big value i can offer to my community. It can be in many forms. The best is the one that reaches them most. Print, video or in person events are all great ways to bring insight to the community. #iHaveTheNerveToBeHeard #WEGOHealthChat |
| Social Health Network @socialhealthnet That's a wrap on October's #WEGOHealthChat! If you have any closing thoughts, feel free to share them with the group. Thank you again for joining! Mark Nov 13th on your calendar for the next one. https://t.co/ZVFonbNYkG |
| Dr Mary Ann Wilmarth @Back2backPT A5 I tend to share #mystory as well as connecting it with #trends where appropriate. I also may speak more from a #research or #scientific end & then add my subjective portion as appropriate as needed or in Med speak PRN. #wegohealthchat @wegohealth #PatientLeaders @Back2backPT |
| Amanda G @LAlupusLady A6 My passion. I share my journey and story to help the patient community gain understanding that we are not alone. A company should reach out to me because while my experience is unique, the concerns of patients are universal.. Let me help you empathize. #WEGOHealthChat |
| Social Health Network @socialhealthnet Let's keep the discussion going. If you have any follow up thoughts, make sure to throw them over into our Facebook Group! #WEGOHealthChat https://t.co/k79PgLJO5o |
| Maya Northen Augelli @mayanorthen A6: My condition is rare, & I've often had people tell me they couldn't find anyone writing/speaking about my condition until they read my writing about it. If I was better at answering this question, I'd probably be further along as a patient leader. :-) #wegohealthchat |
| Cynthia Covert, The Disabled Diva @TheDisabledDiva @wegohealth A5 follow up #WEGOHealthChat https://t.co/riNxW05mNl |
| Beth Morton @beth_morton A6. I sell my research background even though it isn't a clinical one. I also sell my lived experience. Combined, I've become a pretty savvy #migraine advocate for someone with no medical background. #WEGOHealthChat |
| Beth Morton @beth_morton A6b. And although my social media reach isn't huge, I feel like I have a pretty good read on our community's needs just be being part of a variety of online migraine groups. #WEGOHealthChat |
| Kristen @srvingofspprt RT @TheDisabledDiva: @wegohealth A5 follow up #WEGOHealthChat https://t.co/riNxW05mNl |
| Barby Ingle Official @BarbyIngle Top Influencers of #WEGOHealthChat 👉 10/9/2018 @wegohealth @C_DohertyPaints @KenRayTaylor @BarbyIngle @FatDag @justagoodlife @RareCandace @Chrisa_Hickey @abrewi3010 @mayanorthen https://t.co/KTLYTaHgIq via @symplur |
 | Heather McCullen @H_SalemOaks Missed #WEGOHealthChat, looked like a good topic. I'll try to catch up this afternoon ... and add the next date to my calendar right now |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: Top Influencers of #WEGOHealthChat 👉 10/9/2018 @wegohealth @C_DohertyPaints @KenRayTaylor @BarbyIngle @FatDag @justagoodlife @RareCandace @Chrisa_Hickey @abrewi3010 @mayanorthen https://t.co/KTLYTaHgIq via @symplur |
| Dr Mary Ann Wilmarth @Back2backPT A4 I do> #surveys &online #research lately due 2my #medicalcondition I've done research myself &been in it2. W/30+yrs of #healthcare work & university teaching at doctoral level I know importance of #science #art & #empathy It all works together❣️#WEGOhealthchat @Back2backPT |
| FatDag 🇺🇸 @FatDag @wegohealth Is this chat every Tuesday from 1-2? #WEGOHealthChat |
| Dr Mary Ann Wilmarth @Back2backPT @wegohealth Love it👍💕💕 #wegohealthchat @wegohealth @Back2backPT |
| Amanda G @LAlupusLady @wegohealth Thank you to the @wegohealth team, looking forward to seeing you in Boston for #SPM2018 and #Connect2Health where #PatientsIncluded is embraced. #WEGOHealthChat |
#WEGOHealthChat content from Twitter.