#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 #patientchat |
 | Christina Lizaso @btrfly12 RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients #patientchat |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Guest moderating today's #patientchat is Christina @btrfly12 Please note that Notifications/DMs will be checked and followed up on by @power4patients in the days following the chat. |
| Christina Lizaso @btrfly12 Hi all :) I'm passionate about community engagement and health. I'm often found at #gyncsm #nsgcgenepool #breakthroughcrew #patientchat |
 | Jamie Roger @JamieRoger8 #patientchat Hello everyone, glad to be here (I actually remembered) Jamie from @SalemOaks working to #educate #patients to be #patientscientists and active #stakeholders in #clinicaltrials |
 | Vera Rulon FAHIMA @vrulon Vera here. From NY. Passionate about empowerment & participatory medicine. #patientchat (will multi-tasking... :) ) |
| Patient Chat @patientchat Please continue adding your introductions and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Jamie Roger @JamieRoger8 @btrfly12 How have you been Christine? #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history. #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat Laurie Reed, patient advocate #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 @anthonynotleon why don't you come over and enjoy #patientchat right now. @abrewi3010 are you joining us today? |
 | Tricia Chaney @TRCWriter Tricia here from GA. I'm passionate about patient education and empowerment. I'm a freelance writer, hoping that my work has some impact on health literacy. #patientchat |
| Christina Lizaso @btrfly12 @JamieRoger8 Good thanks. I miss having this chance to chat twice a month with other folks passionate about healthcare and patient empowerment. Always nice when I do get to be back. #patientchat |
 | Alan Brewington @abrewi3010 @JamieRoger8 @anthonynotleon Thanks for the reminder! #patientchat |
| Patient Chat @patientchat Today on #patientchat we offer you, our participants, the "Mic". You are free to ask ?’s, make comments, share your story, etc. |
| Patient Chat @patientchat So for today we won't have our regular labeled Topic Questions (T1: T2: etc.) but will have more of a free flow discussion. #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: Today on #patientchat we offer you, our participants, the "Mic". You are free to ask ?’s, make comments, share your story, etc. |
| Jamie Roger @JamieRoger8 @btrfly12 I agree, I get so annoyed when I forget. Especially if I remember right after it ends. Being involved is the best way to enable change. #discussion #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: Today on #patientchat we offer you, our participants, the "Mic". You are free to ask ?’s, make comments, share your story, etc. |
| Patient Chat @patientchat There are some starter ideas in today's event listing to get your brain train rolling :) https://t.co/GDwe1RmIDD #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey <running in late> HEY! Casey here, loudmouth in service of healthcare system/science progress. Latest personal #epatient news: https://t.co/EfsmndubrR #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 @anthonynotleon No problem, I always forget but I noticed you hadn't said hi yet so I thought I would get you over here. Your opinion is always good to have. #patientchat |
 | Angela Cohen @angelee828 Hey All! 👋🏽 I’m Angela joining in from WI. Happy to be here for today’s #patientchat |
 | Heather McCullen @H_SalemOaks Hi #PatientChat, really interested to hear what everyone has to say on the open mic today, but I have a meeting in 5 minutes so I'll have to check it out tis afternoon. |
| Jamie Roger @JamieRoger8 @MightyCasey Good to see you Casey, I feel like it's been awhile. #myfault #patientchat |
| Patient Chat @patientchat We had this idea submitted earlier this week - thoughts? RT @Crohnoid I’d like to discuss the management of co-morbidities and how to/who should co-ordinate treatment. (“Like” is probably the wrong word and I definitely don’t “like” the term “#comorbidity”) #patientchat |
 | Katie @katie5280 @patientchat Hi! I'm Katie, an eight year breast cancer survivor & t2 diabetic. #patientchat |
| Patient Chat @patientchat So here we go… What is on your mind today? What empowered patient topics would you like to chat about? Jump right in and get us started! :) #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi guys. I'm Shereese. For #openmic I'd like to remind everyone that it's #PancreaticCancerAwarenessMonth. Understanding Pancreatic Cancer Risk Factors – Pancreatic Cancer Action Network https://t.co/k3eEzOA6ui #patientchat https://t.co/49v0uNnqeu |
| Alan Brewington @abrewi3010 @JamieRoger8 @anthonynotleon I have been following the #patientdriven conversation. Today is a good Twitter day. I’m glad we are both here bc I like your ideas and contributions. #patientchat |
| Christina Lizaso @btrfly12 RT @ShereesePubHlth: Hi guys. I'm Shereese. For #openmic I'd like to remind everyone that it's #PancreaticCancerAwarenessMonth. Understanding Pancreatic Cancer Risk Factors – Pancreatic Cancer Action Network https://t.co/k3eEzOA6ui #patientchat https://t.co/49v0uNnqeu |
| Christina Lizaso @btrfly12 RT @MightyCasey: <running in late> HEY! Casey here, loudmouth in service of healthcare system/science progress. Latest personal #epatient news: https://t.co/EfsmndubrR #patientchat |
| Jamie Roger @JamieRoger8 Where does everyone go to find information on their #diagnosis and #treatment #patientchat |
| Jamie Roger @JamieRoger8 RT @ShereesePubHlth: Hi guys. I'm Shereese. For #openmic I'd like to remind everyone that it's #PancreaticCancerAwarenessMonth. Understanding Pancreatic Cancer Risk Factors – Pancreatic Cancer Action Network https://t.co/k3eEzOA6ui #patientchat https://t.co/49v0uNnqeu |
| Christina Lizaso @btrfly12 RT @abrewi3010: @JamieRoger8 @anthonynotleon I have been following the #patientdriven conversation. Today is a good Twitter day. I’m glad we are both here bc I like your ideas and contributions. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat @Crohnoid From my interviews with patients, I've heard that patients are often the ones coordinating care when there are co-morbidities. It is an effort which patients, who may already be compromised, find quite burdensome. #patientchat |
| Alan Brewington @abrewi3010 A1 I wish we would go to a chronic or acute label. Multiple diagnoses means one needs support from different silos. Silos are hard to bust #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JamieRoger8 Oh, I'm always here. Just sometimes busy with stuff that keeps me from being on Twitter 24/7 =) #patientchat |
 | Anthony Leon @anthonynotleon @patientchat I've been talking with a couple of clinical nutritionists and they were telling me me they are seeing more and more patients who are tired of not being listened to. I'm curious if others are going outside traditional Docs to get some answers or have a holistic ear? #patientchat |
 | Kimberly Amelia @fireflyrn84 Hi everyone! Just a little late. Kim from Wisconsin. I'm a #raredisease and #chronicillness advocate and blogger. Looking forward to today's chat! #patientchat |
| Christina Lizaso @btrfly12 @JamieRoger8 I think doctors forget sometimes that for a lot of conditions there are 1 or more nonprofits that have worked hard to collate the best information tailored to that condition. (1/2...) #patientchat |
| Alan Brewington @abrewi3010 RT @JamieRoger8: Where does everyone go to find information on their #diagnosis and #treatment #patientchat |
| Jamie Roger @JamieRoger8 @MightyCasey I limit twitter time primarily to when I have my laptop open. I try to stay present when I'm not working #patientchat Therefor, recovery got in the way of my #twitter ing a bit. |
 | Henry Cruz @RealCruzHenry RT @abrewi3010: @JamieRoger8 @anthonynotleon I have been following the #patientdriven conversation. Today is a good Twitter day. I’m glad we are both here bc I like your ideas and contributions. #patientchat |
| Angela Cohen @angelee828 100% agree! Not considered or discussed enough #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 I start with chats like #patientchat. I understand patient stories, not hard science. |
| Christina Lizaso @btrfly12 @JamieRoger8 Then there are the patient communities which really drive a lot of the "what does this condition mean for me each day" items that patients need plus the emotional support of knowing not alone (2/2...) #patientchat |
| Vera Rulon FAHIMA @vrulon @abrewi3010 Great reply and insight. What can we do collectively to begin busting silos? Perhaps we can discuss which silos to prioritize... #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @Cpnervecenter Hey Becky, good to have you! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @anthonynotleon @patientchat That's why I'm glad for operations like @savvy_coop and @S4PM. They will encourage patient empowerment and spawn real change, I believe #patientchat |
| Kimberly Amelia @fireflyrn84 Treating the whole patient, not just the physical symptoms but also the psychosocial aspects. Those are so important. Also as @Crohnoid mentioned, managing #comorbidities and the appropriate #careteam. #patientchat |
| Christina Lizaso @btrfly12 @JamieRoger8 What I dream of is a platform for finding online patient communities that doctors would actually feel comfortable referring patients to. #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody Hi lovely! #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: @JamieRoger8 I start with chats like #patientchat. I understand patient stories, not hard science. |
| Jamie Roger @JamieRoger8 @abrewi3010 awesome point. It's much easier to discuss with other people who are experiencing symptoms of some sort. #patientchat #support #community |
| Vera Rulon FAHIMA @vrulon @anthonynotleon @patientchat Wouldn't be surprised if that were the case. #patientchat From a personal perspective I am lucky to have a doctor who listens to me - but I'm pretty independent and do my research. Have availed myself of holistic health several times. |
| Christina Lizaso @btrfly12 I've gained so much from the condition-wide chats like #patienchat and others that bring in industry folks too. A lot of value in getting outside your "silo" #patientchat |
| Vera Rulon FAHIMA @vrulon RT @btrfly12: @JamieRoger8 What I dream of is a platform for finding online patient communities that doctors would actually feel comfortable referring patients to. #patientchat |
| Christina Lizaso @btrfly12 RT @fireflyrn84: Treating the whole patient, not just the physical symptoms but also the psychosocial aspects. Those are so important. Also as @Crohnoid mentioned, managing #comorbidities and the appropriate #careteam. #patientchat |
| Christina Lizaso @btrfly12 RT @ShereesePubHlth: @anthonynotleon @patientchat That's why I'm glad for operations like @savvy_coop and @S4PM. They will encourage patient empowerment and spawn real change, I believe #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @Cpnervecenter agreed! Hope you have been well. #patientchat |
| Christina Lizaso @btrfly12 RT @angelee828: 100% agree! Not considered or discussed enough #patientchat |
| Jamie Roger @JamieRoger8 RT @ShereesePubHlth: @anthonynotleon @patientchat That's why I'm glad for operations like @savvy_coop and @S4PM. They will encourage patient empowerment and spawn real change, I believe #patientchat |
| Alan Brewington @abrewi3010 @vrulon I force myself to read/find cancer, diabetes, caregivers, cystic fibrosis, narcolepsy stories. Then I include the when promoting resources. I’m a #chronicpain & #RA patient. #patientchat |
| Christina Lizaso @btrfly12 RT @anthonynotleon: @patientchat I've been talking with a couple of clinical nutritionists and they were telling me me they are seeing more and more patients who are tired of not being listened to. I'm curious if others are going outside traditional Docs to get some answers or have a holistic ear? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey As important as patient communities are, you gotta always be aware of astro-turfing risk. Check out who's paying the bills, sometimes there are unpleasant surprises in the answer to that question: https://t.co/AkqfzEEv8V #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A1 I wish we would go to a chronic or acute label. Multiple diagnoses means one needs support from different silos. Silos are hard to bust #patientchat |
| Kimberly Amelia @fireflyrn84 That is so true! As a patient, I am my own social worker, case manager, patient advocate, nurse, and patient at the same time. I already don't feel good and then all of that is added onto my plate. #patientchat |
| Vera Rulon FAHIMA @vrulon @btrfly12 That's an excellent view point. A multi-disciplinary chat. #patientchat |
| Alan Brewington @abrewi3010 @bbhomebody @fireflyrn84 I thought I was pumpkin? 😜😂 #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 @bbhomebody You can be pumpkin too! Just for today :) #patientchat |
| Christina Lizaso @btrfly12 @LReedsbooks @patientchat @Crohnoid It is a huge burden to be your own care coordinator and to not just need to do that but have to fight the system to do that. #patientchat |
| Alan Brewington @abrewi3010 RT @JamieRoger8: @abrewi3010 awesome point. It's much easier to discuss with other people who are experiencing symptoms of some sort. #patientchat #support #community |
| Alan Brewington @abrewi3010 RT @btrfly12: I've gained so much from the condition-wide chats like #patienchat and others that bring in industry folks too. A lot of value in getting outside your "silo" #patientchat |
| Christina Lizaso @btrfly12 RT @MightyCasey: As important as patient communities are, you gotta always be aware of astro-turfing risk. Check out who's paying the bills, sometimes there are unpleasant surprises in the answer to that question: https://t.co/AkqfzEEv8V #patientchat |
| Laurie Reed @LReedptadvocate @fireflyrn84 @Crohnoid The questions are -- do physicians treat the whole patient? and how well are patients informed of side effects, psychosocial aspects, and comordities OR are these aspects often 'surprises'? #patientchat @patientchat |
| Kimberly Amelia @fireflyrn84 @anthonynotleon @patientchat I think we are looking at alternative therapies. When things aren't working, we always are looking for something that can lessen a symptom or just give us some relief. Not even a cure, just some sort of break. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @Crohnoid I thought it was unfair and unhelpful. How does it in anyway improve the care environment or our understanding of patient woes v. provider burnout? #patientchat |
| Tricia Chaney @TRCWriter @anthonynotleon @patientchat Yes. I've not been listened to often. I've gone to chiropractor, a functional medicine group, and a gym because I feel like my PCPs haven't had good answers when it comes to wellness. #patientchat |
 | Alicia C. Staley @stales RT @MightyCasey: As important as patient communities are, you gotta always be aware of astro-turfing risk. Check out who's paying the bills, sometimes there are unpleasant surprises in the answer to that question: https://t.co/AkqfzEEv8V #patientchat |
| Anthony Leon @anthonynotleon @vrulon @patientchat It's been a 1.5 yr battle of trying to get answers. Basically felt really off, doc guessed thyroid, I asked to check T level, she refused. I fought back, got the test (I was right). Saw Uro, he thought cancer, 2 months of tests, false, saw endo that didn't go well #patientchat |
| Vera Rulon FAHIMA @vrulon @ShereesePubHlth @Crohnoid Couldn't agree more. I hadn't been aware until now and took a quick look. Poor judgment on someone's part. #patientchat |
| Christina Lizaso @btrfly12 @MightyCasey Absolutely. Too many "patient" groups involve little to no actual patients in any real way. I actually tend to think many start-ups are doing it better than the majority of nonprofits when it comes to patient involvement. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: @vrulon I force myself to read/find cancer, diabetes, caregivers, cystic fibrosis, narcolepsy stories. Then I include the when promoting resources. I’m a #chronicpain & #RA patient. #patientchat |
| Angela Cohen @angelee828 @btrfly12 Agreed! There is so much to gain from listening to each other and working together. We all have the same goal (or should). The betterment of all (systems, our health, healthcare, tech, treatments, etc.) and moving forward. #patientchat |
| Jamie Roger @JamieRoger8 @Crohnoid There is also the same # but regarding patients. I think it is just pinning opposite sides against each other for the sake of controversy. #patientchat |
| Kimberly Amelia @fireflyrn84 Some treat the whole patient and others don't. In 15 minutes they are expected to examine the patient, get updates & make changes to the treatment plan. That doesn't leave a lot of time for them to look at the whole patient. I think that patients are often surprised. #patientchat |
| Tricia Chaney @TRCWriter @vrulon @anthonynotleon @patientchat I find I get a little more open answers from doctors when I show that I've done some research and understand the basics. They're more willing to go into details. #patientchat |
| Christina Lizaso @btrfly12 When you have symptoms that fit multiple speciality boxes, you are so on your own. I'm in cancer previvor land and no one knows what to do with me. I have to get assertive and book with multiple specialists. #patientchat |
| Anthony Leon @anthonynotleon @Crohnoid @vrulon @btrfly12 It's called collaborative care, and it really shouldn't be this hard! Get a few great minds together (remove egos) and see if a result or direction can filter through #patientchat |
| Christina Lizaso @btrfly12 RT @TRCWriter: @anthonynotleon @patientchat Yes. I've not been listened to often. I've gone to chiropractor, a functional medicine group, and a gym because I feel like my PCPs haven't had good answers when it comes to wellness. #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @fireflyrn84 @Crohnoid The questions are -- do physicians treat the whole patient? and how well are patients informed of side effects, psychosocial aspects, and comordities OR are these aspects often 'surprises'? #patientchat @patientchat |
| Kimberly Amelia @fireflyrn84 @Crohnoid @abrewi3010 @bbhomebody we're going with cute, kind pumpkins today Nigel :) #patientchat |
| Jamie Roger @JamieRoger8 @anthonynotleon @vrulon @patientchat sending you strength. #patientchat #supporteachother #community #humanity #weareallhuman |
| Alan Brewington @abrewi3010 @bbhomebody @fireflyrn84 Yesssssssssss!!!! Hi 👋 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @btrfly12 @JamieRoger8 That's already happening in some condition areas. Witness @ePatientDave and his experience w/ @DrDannySands prescribing a kidney cancer forum (was ACOR, now @smart_patients) that helped him survive Stage IV dx. #patientchat |
| Laurie Reed @LReedptadvocate Yes -- this extra burden has been confirmed. #patientchat |
| Vera Rulon FAHIMA @vrulon @Crohnoid @btrfly12 Integrate. There are so many impacts even beyond the clinical on our health. What a good idea! Like meetings I'd have with my son & his teachers when he was in school - so we might collectively agree on the path forward in his best interest #patientchat |
| Kimberly Amelia @fireflyrn84 @Crohnoid @LReedsbooks @patientchat The primary disease can change over time. It's whatever is causing the most symptoms and requiring the most treatment. #patientchat |
| Christina Lizaso @btrfly12 @Crohnoid I was going to bring this up too. I know there are stories that need to be told but don't know how effective that tone can be. I liked the #WTHealthcare and #HowNotToDoPatientEngagement tone better. #patientchat |
| Christina Lizaso @btrfly12 RT @fireflyrn84: @Crohnoid @LReedsbooks @patientchat The primary disease can change over time. It's whatever is causing the most symptoms and requiring the most treatment. #patientchat |
| Tricia Chaney @TRCWriter @Crohnoid I think that hashtag is counterproductive and unfair. I've heard enough stories to see how some docs could earn that, but it's not the majority. Most I interview care deeply about their patients and the care they provide. #patientchat |
| Kimberly Amelia @fireflyrn84 @btrfly12 @JamieRoger8 Amen to that! #patientchat |
| Anthony Leon @anthonynotleon @TRCWriter @vrulon @patientchat I often get the flip of that. I will get a "did you learn that on WebMD?" I'll throw in my decade plus of working in healthcare and particular specialties. Ego is a tough wall sometimes #patientchat |
| Christina Lizaso @btrfly12 @MightyCasey @JamieRoger8 @ePatientDave @DrDannySands @smart_patients I think it would take time and a site done and backed just right for your average doctor to "prescribe" peer support and send all patients off to find some. #patientchat |
| Christina Lizaso @btrfly12 RT @anthonynotleon: @Crohnoid @vrulon @btrfly12 It's called collaborative care, and it really shouldn't be this hard! Get a few great minds together (remove egos) and see if a result or direction can filter through #patientchat |
| Christina Lizaso @btrfly12 RT @TRCWriter: @vrulon @anthonynotleon @patientchat I find I get a little more open answers from doctors when I show that I've done some research and understand the basics. They're more willing to go into details. #patientchat |
| Anthony Leon @anthonynotleon @btrfly12 It's why I found a clinical nutrionist / functional medicine individual who was willing to spend the time and look at all of my bloodwork and medical history to see if there is an underlying cause that may be. I'ts been great so far #patientchat |
| Christina Lizaso @btrfly12 RT @angelee828: @btrfly12 Agreed! There is so much to gain from listening to each other and working together. We all have the same goal (or should). The betterment of all (systems, our health, healthcare, tech, treatments, etc.) and moving forward. #patientchat |
| Jamie Roger @JamieRoger8 @Crohnoid I wrote an article about how poorly I was treated by a doctor (I even skimmed over some of the more emotionally distressing stuff) . and I still wouldn't stoop to using that hashtag #patientchat https://t.co/Hr9xlXbhvI |
| Laurie Reed @LReedptadvocate @TRCWriter @btrfly12 @vrulon @anthonynotleon @patientchat That's a good strategy. #patientchat |
| Kimberly Amelia @fireflyrn84 @Crohnoid Wow, I'm feeling a little shocked. I think the hashtag is completely inappropriate. Everyone is entitled to their opinion, but doctors are necessary and are part of the healthcare backbone. Doctor bashing is never a good plan. It won't lead to anywhere productive. #patientchat |
| Henry Cruz @RealCruzHenry RT @btrfly12: @MightyCasey Absolutely. Too many "patient" groups involve little to no actual patients in any real way. I actually tend to think many start-ups are doing it better than the majority of nonprofits when it comes to patient involvement. #patientchat |
| Henry Cruz @RealCruzHenry RT @JamieRoger8: Where does everyone go to find information on their #diagnosis and #treatment #patientchat |
| Henry Cruz @RealCruzHenry RT @btrfly12: @JamieRoger8 Then there are the patient communities which really drive a lot of the "what does this condition mean for me each day" items that patients need plus the emotional support of knowing not alone (2/2...) #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @btrfly12 @JamieRoger8 @ePatientDave @DrDannySands @smart_patients It's never going to be one place. That's like expecting one site to evaluate clinician efficacy/practice/outcome. Ain't no such place. What IS rising is peer-to-peer direction via communities like #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody @Crohnoid Yes, yes, yes! #patientchat |
| Alan Brewington @abrewi3010 @TRCWriter @Crohnoid I think it’s important to remember that twitter exploded with patients bc we were not being heard. We needed a release valve. That hashtag wasn’t advocacy, it was a return to why twitter works for patients #patientchat |
| Laurie Reed @LReedptadvocate Here's another strategy to use in your efforts to get physicians to listen. #patientadvocacy #patientengagement #communication #patientchat #patientexperience @TRCWriter |
| Christina Lizaso @btrfly12 @fireflyrn84 @Crohnoid There is actually a fair amount of patient bashing by healthcare workers so maybe this was backlash to that - but even so - totally agree this isn't going to lead anywhere productive. #patientchat |
| Alan Brewington @abrewi3010 RT @JamieRoger8: @Crohnoid I wrote an article about how poorly I was treated by a doctor (I even skimmed over some of the more emotionally distressing stuff) . and I still wouldn't stoop to using that hashtag #patientchat https://t.co/Hr9xlXbhvI |
| Angela Cohen @angelee828 @JamieRoger8 @Crohnoid IMO I understood what the meaning was, but I agree it was separating the two when we should be working together to try and improve things. I have stories like that too. But I know drs who’ve treated me could say something abt me too when I felt I wasn’t being heard. #patientchat |
| Jamie Roger @JamieRoger8 @ZHeatherChamp @patientchat Look into @SalemOaks Shoot me an email and I can get you started a bit. Also you can join @savvy_coop to be more involved in clinical trials. (and if you become a member you earn money) #patientchat |
| Henry Cruz @RealCruzHenry RT @btrfly12: @Crohnoid I was going to bring this up too. I know there are stories that need to be told but don't know how effective that tone can be. I liked the #WTHealthcare and #HowNotToDoPatientEngagement tone better. #patientchat |
| Henry Cruz @RealCruzHenry RT @fireflyrn84: @Crohnoid Wow, I'm feeling a little shocked. I think the hashtag is completely inappropriate. Everyone is entitled to their opinion, but doctors are necessary and are part of the healthcare backbone. Doctor bashing is never a good plan. It won't lead to anywhere productive. #patientchat |
| Christina Lizaso @btrfly12 RT @anthonynotleon: @btrfly12 It's why I found a clinical nutrionist / functional medicine individual who was willing to spend the time and look at all of my bloodwork and medical history to see if there is an underlying cause that may be. I'ts been great so far #patientchat |
| Henry Cruz @RealCruzHenry RT @abrewi3010: @TRCWriter @Crohnoid I think it’s important to remember that twitter exploded with patients bc we were not being heard. We needed a release valve. That hashtag wasn’t advocacy, it was a return to why twitter works for patients #patientchat |
| Kimberly Amelia @fireflyrn84 @btrfly12 @Crohnoid Very good point. Patient bashing is fairly common. Either way, everyone needs to play nice together in the sandbox. #patientchat |
 | The Original Papa Joe's Restaurant @OakLawnPapaJoes RT @TRCWriter: @vrulon @anthonynotleon @patientchat I find I get a little more open answers from doctors when I show that I've done some research and understand the basics. They're more willing to go into details. #patientchat |
| Christina Lizaso @btrfly12 @ZHeatherChamp @patientchat I really like the webinars that @wegohealth has. @GlobalGenes and @CancerAdvocacy have online learning modules. @power4patients FB group for this chat just launched a resource guide. #patientchat |
| Anthony Leon @anthonynotleon @fireflyrn84 That's the one thing I have come to appreciate on my end. I've sold medi devices to hospitals & small practices as well as health tech software. I understand why I have less of their attention these days. It's why I have to be my own advocate in those few mins #patientchat |
| Kimberly Amelia @fireflyrn84 I agree. We need to share the not so great experiences in order to improve going forward. There needs to be a collaborative space for making the experiences heard and also being able to constructively discuss alternatives or options that could have improved that. #patientchat |
| Christina Lizaso @btrfly12 @MightyCasey @JamieRoger8 @ePatientDave @DrDannySands @smart_patients You don't think something like Angie's List - crowdsourced with actives rising to the top, patient leader moderated - could work? I see tons of obstacles but just seems like otherwise doc's won't risk a referral. #patientchat |
| Christina Lizaso @btrfly12 RT @fireflyrn84: I agree. We need to share the not so great experiences in order to improve going forward. There needs to be a collaborative space for making the experiences heard and also being able to constructively discuss alternatives or options that could have improved that. #patientchat |
| Anthony Leon @anthonynotleon @TRCWriter @vrulon @patientchat So glad to hear that. It really helps! I had an NP at my GPs office that seemed to be super empathic and wanted to take a holistic approach. She went to bat for me with the doc to approve some things. Still massaging that relationship but hopeful. #patientchat |
| Jamie Roger @JamieRoger8 @Crohnoid @LReedsbooks @TRCWriter LOVE THIS. I am so please to hear that you make it about your concerns and don't settle for less. More patients would benefit from this! #patientchat |
| Alan Brewington @abrewi3010 We need more “how might we...?” vs basic name calling. That said, reading the stories using that hashtag was incredibly moving. There is definitely room for human centered solutions #patientchat |
 | Dave deBronkart @ePatientDave #patientchat |
| Christina Lizaso @btrfly12 RT @Crohnoid: |
| Kimberly Amelia @fireflyrn84 @btrfly12 @MightyCasey @JamieRoger8 @ePatientDave @DrDannySands @smart_patients I like that! #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @Crohnoid a bit too much when you compare them. #patientchat #whatisgoingon #rivalry |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ePatientDave @btrfly12 @JamieRoger8 @DrDannySands @smart_patients I will say that for all looking for a place to learn/share in specific condition areas. @smart_patients is a solid play. Started with heavy cancer focus, but now has wide array of condition communities. https://t.co/h22741Phwq #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Patient Retention: 10 Things You Can Do to Keep Existing Patients Happy! https://t.co/DkhVHUWpNc #hospital #patientengagement #healthcare #healthcare4all #patientchat #patientshavepower #marketing https://t.co/4IgpSAM17k https://t.co/ZWNimdOSid |
| Christina Lizaso @btrfly12 RT @abrewi3010: We need more “how might we...?” vs basic name calling. That said, reading the stories using that hashtag was incredibly moving. There is definitely room for human centered solutions #patientchat |
| Tricia Chaney @TRCWriter @fireflyrn84 I've wondered how to share too. I've had many friends facing negative comments from their providers b/c of weight bias. I've wanted to share those stories, but have been told they may not be well received. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @fireflyrn84 @btrfly12 @JamieRoger8 @ePatientDave @DrDannySands @smart_patients Again, I say check out @smart_patients #patientchat |
| Alan Brewington @abrewi3010 With mid terms approaching I’ve been wondering how might we get more chronic patients into politics? #patientchat |
| Jamie Roger @JamieRoger8 RT @MightyCasey: @ePatientDave @btrfly12 @JamieRoger8 @DrDannySands @smart_patients I will say that for all looking for a place to learn/share in specific condition areas. @smart_patients is a solid play. Started with heavy cancer focus, but now has wide array of condition communities. https://t.co/h22741Phwq #patientchat |
| Dave deBronkart @ePatientDave @btrfly12 @MightyCasey @JamieRoger8 @DrDannySands @smart_patients The real bottom line here is that as we all become more sophisticated we realize there are no sure answers so it's wise to explore and be mindful. #patientchat |
 | From the river to the sea @Noetrope RT @abrewi3010: @TRCWriter @Crohnoid I think it’s important to remember that twitter exploded with patients bc we were not being heard. We needed a release valve. That hashtag wasn’t advocacy, it was a return to why twitter works for patients #patientchat |
| Tricia Chaney @TRCWriter @fireflyrn84 Love that idea! #patientchat |
| Christina Lizaso @btrfly12 @MightyCasey @ePatientDave @JamieRoger8 @DrDannySands @smart_patients SP is the community I have found a great group in. clarify - I don't wish for there to be one community - varied needs. I wish for there to be a clearinghouse that doctors feel okay sending people off to find one. #patientchat |
| Jamie Roger @JamieRoger8 @TRCWriter @fireflyrn84 I just put my own story out into the world. It was too painful to keep it to myself in light of the way I was treated by someone who was supposed to help me. #patientchat https://t.co/Hr9xlXbhvI |
| Dave deBronkart @ePatientDave @MightyCasey @btrfly12 @JamieRoger8 @DrDannySands @smart_patients Of course also adding @teaminspire and @patientslikeme #patientchat |
 | Hello_U👋🏼 @MommysCancer RT @btrfly12: Join/Share: Join/Share: "Open Mic" Empowered #patientchat Friday Nov 2, 1pm ET https://t.co/xGcpcRRjy9 https://t.co/N9kClNkEXX |
| Vera Rulon FAHIMA @vrulon @ePatientDave @btrfly12 @MightyCasey @JamieRoger8 @DrDannySands @smart_patients Wise words #patientchat |
| Christina Lizaso @btrfly12 RT @TRCWriter: @fireflyrn84 I've wondered how to share too. I've had many friends facing negative comments from their providers b/c of weight bias. I've wanted to share those stories, but have been told they may not be well received. #patientchat |
| Kimberly Amelia @fireflyrn84 @ePatientDave @MightyCasey @btrfly12 @JamieRoger8 @DrDannySands @smart_patients @teaminspire @patientslikeme You beat me to it! Also for rare diseases, https://t.co/aKjtTxD3vb is a great resource too! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @btrfly12 @ePatientDave @JamieRoger8 @DrDannySands @smart_patients SmartPatients is a good candidate there. #patientchat |
| Tricia Chaney @TRCWriter @fireflyrn84 A space for providers and patients to learn to communicate more productively with each other. Often the conversation fails early simply because of word choice. #patientchat |
| Anthony Leon @anthonynotleon @btrfly12 @JamieRoger8 I had a project with a friend in building something exactly like that. It took a back burner to another project I am currently on outside of healthcare. #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 @TRCWriter Sometimes getting the story out lifts a huge weight off of your shoulders. #patientchat |
| Dave deBronkart @ePatientDave RT @fireflyrn84: @ePatientDave @MightyCasey @btrfly12 @JamieRoger8 @DrDannySands @smart_patients @teaminspire @patientslikeme You beat me to it! Also for rare diseases, https://t.co/aKjtTxD3vb is a great resource too! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @TheRoctor_MD @ePatientDave @btrfly12 @JamieRoger8 @DrDannySands NLM's MedlinePlus doesn't totally suck (for a govt platform): https://t.co/3E9Y11dJcs #patientchat #healthliteracy |
| Alan Brewington @abrewi3010 Does any patient or caregiver need help with voting? I have a degree in political science so I’m happy to help. #patientchat |
| Christina Lizaso @btrfly12 @anthonynotleon @JamieRoger8 I helped pull together a brainstorm about such a while back but same - backburner. #patientchat |
| Jamie Roger @JamieRoger8 @TRCWriter @fireflyrn84 also @HealthStoryCo is a great place for sharing. #patientchat |
| Christina Lizaso @btrfly12 We've just come off Ovarian/GYN cancer month, then breast cancer month, now pancreatic and lung cancer month. What are your thoughts on awareness days/weeks/months? #patientchat |
| Alan Brewington @abrewi3010 RT @JamieRoger8: @TRCWriter @fireflyrn84 also @HealthStoryCo is a great place for sharing. #patientchat |
| Jamie Roger @JamieRoger8 @TRCWriter @fireflyrn84 @salemoaks is working to educate patients on how to be a #valued #stakeholder at the table, sometimes it is just a matter of language that is separating stakeholders. #patientchat |
| Anthony Leon @anthonynotleon @TRCWriter @fireflyrn84 I haven't been comfortable enough to put a lot on medium or others just yet, as I have had some doozies in this past year and a half. I threw one up on LInkedIn about my sister. It's more techy though #patientchat https://t.co/jXVyXqBVs6 |
| Christina Lizaso @btrfly12 #patientchat |
| Dave deBronkart @ePatientDave @btrfly12 @MightyCasey @JamieRoger8 @DrDannySands @smart_patients My whole point is (a) there's no one group best for everyone, (b) those we send there need to know they still need to think for themselves (same as with MD recommendations). Meanwhile (c) the best recommendations may change next week or year, same as for treatments. #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake @anthonynotleon @patientchat You bet! I know many, many who are doing the same. Part of the issue that I hear is not being treated as an individual. You cannot prescribe a one-size-fits-all diet. I just started to write about my own experience. This is Part 1 of 3. https://t.co/PCfvVkK0Uj #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @anthonynotleon: @patientchat I've been talking with a couple of clinical nutritionists and they were telling me me they are seeing more and more patients who are tired of not being listened to. I'm curious if others are going outside traditional Docs to get some answers or have a holistic ear? #patientchat |
| Kimberly Amelia @fireflyrn84 Blogging is my therapy many days. It is calming in the heat of the moment. Soothing when your heart needs the quiet and healing if you've had a bad day. I turn to it often. #patientchat |
| Jamie Roger @JamieRoger8 @TheRoctor_MD @ePatientDave @MightyCasey @btrfly12 @DrDannySands @H_SalemOaks @SalemOaks #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @btrfly12: I've gained so much from the condition-wide chats like #patienchat and others that bring in industry folks too. A lot of value in getting outside your "silo" #patientchat |
| Christina Lizaso @btrfly12 @MightyCasey @TheRoctor_MD @ePatientDave @JamieRoger8 @DrDannySands I'll check it out. Haven't heard of anyone being referred there. Maybe it just needs a push for doctors to let patients know it is there. Do much is driven by whether a doctor bring it up - and they have a lot to cover #patientchat |
| Laurie Reed @LReedptadvocate @btrfly12 I think they have value. They're good reminders. Checklists are helpful of what to do and what to look for because people are dynamic creatures and even if it wasn't relevant 2 months ago, it might be now -- if not for self, for others. #patientchat |
| Christina Lizaso @btrfly12 #patientchat |
| Jamie Roger @JamieRoger8 RT @ePatientDave: @btrfly12 @MightyCasey @JamieRoger8 @DrDannySands @smart_patients My whole point is (a) there's no one group best for everyone, (b) those we send there need to know they still need to think for themselves (same as with MD recommendations). Meanwhile (c) the best recommendations may change next week or year, same as for treatments. #patientchat |
| Christina Lizaso @btrfly12 RT @llake: @anthonynotleon @patientchat You bet! I know many, many who are doing the same. Part of the issue that I hear is not being treated as an individual. You cannot prescribe a one-size-fits-all diet. I just started to write about my own experience. This is Part 1 of 3. https://t.co/PCfvVkK0Uj #patientchat |
| Kimberly Amelia @fireflyrn84 Many organizations have preferred provider lists where patients can recommend doctors be put on a list and also can request that doctors are removed. #patientchat |
| Laurie Reed @LReedptadvocate @Crohnoid Not appropriate. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @vrulon @abrewi3010 As the spouse of a Type 1 diabetic w/multiple health issues, this is on my radar all the time. Diabetes gets the bottom rung. Frankly, I think it's because it's too complicated even though I'm told: "it's not as important". #patientchat |
| Christina Lizaso @btrfly12 @ePatientDave @MightyCasey @JamieRoger8 @DrDannySands @smart_patients Absolutely. But someone might join a facebook group for their condition which is a horrible fit for them and not realize there is a SP, Inspire, etc. group. Where can they find a listing of all the groups and then try them out. :) #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @TRCWriter @fireflyrn84 @HealthStoryCo They had an AWESOME conference at the end of September in #Boston #powerofastory It was a day filled with growth, expression, self-reflection, awareness, and story. Awesome organization. #patientchat |
| Anthony Leon @anthonynotleon @llake @patientchat A friend who was given a fibromyalgia dx didn't want to accept that medicine only and" it is what it is" was her only option. She turned to and became a clinical nutritionist and says changing her diet has made symptoms all but non-existent. I'm hoping the same #patientchat |
| Patient Chat @patientchat Greatly enjoyed our free flow discussion and the stories shared. It's that time to gather and share your Closing Thoughts for today's chat. #patientchat |
| Christina Lizaso @btrfly12 RT @JamieRoger8: @TRCWriter @fireflyrn84 @salemoaks is working to educate patients on how to be a #valued #stakeholder at the table, sometimes it is just a matter of language that is separating stakeholders. #patientchat |
| Christina Lizaso @btrfly12 RT @Crohnoid: |
| Christina Lizaso @btrfly12 RT @llake: @vrulon @abrewi3010 As the spouse of a Type 1 diabetic w/multiple health issues, this is on my radar all the time. Diabetes gets the bottom rung. Frankly, I think it's because it's too complicated even though I'm told: "it's not as important". #patientchat |
| Alan Brewington @abrewi3010 @llake @vrulon I’m in the #arthritis world. We get no respect due to either stigma its “grandmas” disease. That’s why I’m a huge fan of promoting stories outside of my silo. It fights the status quo. #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @btrfly12 I think they have value. They're good reminders. Checklists are helpful of what to do and what to look for because people are dynamic creatures and even if it wasn't relevant 2 months ago, it might be now -- if not for self, for others. #patientchat |
| Kimberly Amelia @fireflyrn84 CT: This style of a chat flowed really well. The conversation naturally evolved. Great ideas and thoughts from everyone as always! Thanks for another awesome chat! #patientchat |
| Christina Lizaso @btrfly12 RT @fireflyrn84: Blogging is my therapy many days. It is calming in the heat of the moment. Soothing when your heart needs the quiet and healing if you've had a bad day. I turn to it often. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @Crohnoid I wouldn't either, but not because it involves doctors. I think the hashtag indicates that someone(s) are especially upset & don't feel heard. I think doctors could do a whole lot more to stand up for patients. They get a free ride. It should be part of patient care. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: @llake @vrulon I’m in the #arthritis world. We get no respect due to either stigma its “grandmas” disease. That’s why I’m a huge fan of promoting stories outside of my silo. It fights the status quo. #patientchat |
| Jamie Roger @JamieRoger8 #patientchat . I really enjoyed not having a specific topic today but instead just having the time to start a free flowing discussion with people actively excited about the same topics. This was a great hour. #dialogue #community |
| Vera Rulon FAHIMA @vrulon @patientchat Oh man that went by fast! Insights galore. One of the ideas that arose which resonated was the multi-disciplinary meetings to collectively share information for better decision making & agreement on path forward. #patientchat |
| Christina Lizaso @btrfly12 #patientchat |
| Christina Lizaso @btrfly12 RT @vrulon: @patientchat Oh man that went by fast! Insights galore. One of the ideas that arose which resonated was the multi-disciplinary meetings to collectively share information for better decision making & agreement on path forward. #patientchat |
| Dave deBronkart @ePatientDave @melissarvh @btrfly12 @MightyCasey @JamieRoger8 @DrDannySands @smart_patients No site should be "politically correct." a HUGE problem is that Facebook has major problems with privacy violations - totally not secure, right @MightyCasey ? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 @vrulon I saw that response and found it intriguing. I'm going to give it more thought. Stories always help - when there's someone who will listen. I'm sorry for the way you are treated. That's very real and doesn't help your health situation. #patientchat |
| Alan Brewington @abrewi3010 CT we have all earned the right to a bad day, week, even month but we still have a right to a great life! Go vote and bring a friend! #patientchat |
| Vera Rulon FAHIMA @vrulon @abrewi3010 @llake time to change that #stigma I met a woman who was diagnosed with #arthritis in her 20s #patientchat |
| Patient Chat @patientchat As we wrap up, feel free to continue sharing links to your blogs or other good sites for what you are passionate about :) #patientchat |
| Kimberly Amelia @fireflyrn84 My blog is https://t.co/fbup4rvlBC #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour. |
| Alan Brewington @abrewi3010 @JamieRoger8 I second Jamie! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @anthonynotleon @patientchat Absolutely! I wish more with that dx would turn to nutrition as an option to healing. As well as meditation, reiki, etc. Do read my post. It may give you courage and insight. #patientchat |
| Anthony Leon @anthonynotleon @btrfly12 I anecdotally haven't seen a ton of value other than marketing for brands, but with that being said, if it gets the word out and people are taking tests, donating, etc then it is absolutely worth it all. Selfishly, any reason not to shave I'm always down for. #patientchat |
| Patient Chat @patientchat Interested in sponsoring an Empowered #patientchat in 2019? Reach out to us here or through @power4patients |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, November 16th at 1pm ET | 10am PT. Hope to see you there! https://t.co/59gUTDQwaN |
| Patient Chat @patientchat Reminder for today’s chat - Notifications/DMs will be checked and followed up on by @power4patients in the coming days #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @vrulon @abrewi3010 Right! And all stigmas for that matter. #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ePatientDave @melissarvh @btrfly12 @JamieRoger8 @DrDannySands @smart_patients I would not join a FB #patient community at this point, given what I now know about their behavior and POV re patient data privacy. If you thought Cambridge Analytica thing was bad, you ain't seen nuthin'. 🙀 #cyberwoke #patientchat |
| Jamie Roger @JamieRoger8 @Noetrope I didn't agree that they were equivalent #'s I do agree that doctors hold the power in this situation. I was just merely stating the fact that both #'s exist. #patientchat #misunderstood |
| Lillian Lake - Host of #SoulNestingChat @llake @Crohnoid @JamieRoger8 Well, it did get a conversation going... Sometimes exageration is needed to get noticed. Before a situation esculates. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @melissarvh @ePatientDave @btrfly12 @JamieRoger8 @DrDannySands @smart_patients As long as you're OK with the fact that all of your members' data was publicly scrape-able until late July '18 ... OK. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: CT we have all earned the right to a bad day, week, even month but we still have a right to a great life! Go vote and bring a friend! #patientchat |
| Alan Brewington @abrewi3010 @vrulon @llake I’ve had both hips replaced, a group of 80 somethings were fascinated by that on my birthday. I was the only one with a hip replaced. #patientchat |
| Vera Rulon FAHIMA @vrulon @llake @abrewi3010 Totally agree. Fight all #stigmas = #ageism #weight #gender #diagnoses etc. etc. #patientchat - we are all different, all things personal |
| Lillian Lake - Host of #SoulNestingChat @llake RT @JamieRoger8: #patientchat . I really enjoyed not having a specific topic today but instead just having the time to start a free flowing discussion with people actively excited about the same topics. This was a great hour. #dialogue #community |
 | Chloé @SpoonieChloe RT @fireflyrn84: Hi everyone! Just a little late. Kim from Wisconsin. I'm a #raredisease and #chronicillness advocate and blogger. Looking forward to today's chat! #patientchat |
| Christina Lizaso @btrfly12 @melissarvh @ePatientDave @MightyCasey @JamieRoger8 @DrDannySands @smart_patients I don't recommend FB groups generally but for my genetic mutation that is all there is - until I decide to start one up elsewhere... And it is where the people are... #patientchat |
 | The Roctor,MD @TheRoctor_MD @MightyCasey @ePatientDave @btrfly12 @JamieRoger8 @DrDannySands ✌️😎 Health literacy is a focus of mine. Hope to create the most awesome platform for it if I can ever find the right folks to help. One that can be used in K-12 and with adults in any setting. (It's currently in my head and in notebooks). #patientchat #healthliteracy |
| Alan Brewington @abrewi3010 RT @vrulon: @llake @abrewi3010 Totally agree. Fight all #stigmas = #ageism #weight #gender #diagnoses etc. etc. #patientchat - we are all different, all things personal |
| Jamie Roger @JamieRoger8 @Crohnoid maybe on the weeks in between the regularly scheduled #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @vrulon: @llake @abrewi3010 Totally agree. Fight all #stigmas = #ageism #weight #gender #diagnoses etc. etc. #patientchat - we are all different, all things personal |
| Christina Lizaso @btrfly12 RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Dave deBronkart @ePatientDave @TheRoctor_MD @MightyCasey @btrfly12 @JamieRoger8 @DrDannySands For years I've refused to discuss health "literacy" without at the same time examining the CLARITY of what they're supposed to read. Post years ago: "Clarity is power." https://t.co/7Gkam15JYg #patientchat |
| Christina Lizaso @btrfly12 CT: Alway love time spent on #patientchat Thanks @power4patients and all who join in and make it great. |
| Christina Lizaso @btrfly12 RT @ePatientDave: @TheRoctor_MD @MightyCasey @btrfly12 @JamieRoger8 @DrDannySands For years I've refused to discuss health "literacy" without at the same time examining the CLARITY of what they're supposed to read. Post years ago: "Clarity is power." https://t.co/7Gkam15JYg #patientchat |
| Jamie Roger @JamieRoger8 @Noetrope How did I frame them as equal by merely stating that they both exist? I never discussed the content in them or the power that they hold. In fact, I PERSONALLY have never used EITHER hashtag, whether in the context of my tweet or ever to describe them. #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp @bbhomebody @patientchat I’m always on SM and have connected w quite a few w #pten mutation. Does that mean I am an advocate?! #Patientchat |
| Heather McCullen @H_SalemOaks @MightyCasey @btrfly12 @JamieRoger8 @ePatientDave @DrDannySands @smart_patients Why? If all we're talking about is a place to find communities, a curated database seems fully possible. Even a place for all the communities to live seems do-able. Reddit exist (it has problems, sure) but "reddit" for patient communities doesn't seem out of reach #patientchat |
| Christina Lizaso @btrfly12 @ZHeatherChamp @bbhomebody @patientchat I definitely consider you an advocate Heather! For yourself and for others! #patientchat |
#patientchat content from Twitter.