#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients #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…
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
ReedsBooks @LReedsbooks
@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
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: Today on #patientchat we offer you, our participants, the "Mic". You are free to ask ?’s, make comments, share your story,…
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,…
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 Casey Quinlan @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
ShereeseM, MS/MBA @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
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. Understandi…
Christina Lizaso @btrfly12
RT @MightyCasey: <running in late> HEY! Casey here, loudmouth in service of healthcare system/science progress. Latest personal #epatient n…
Jamie Roger @JamieRoger8
Where does everyone go to find information on their #diagnosis and #treatment #patientchat
Nigel H @Crohnoid
Good afternoon. Nigel from UK. I'm a #crohns patient but in recent years have developed a number of #comorbidities (what a horrible word!) #patientchat
Jamie Roger @JamieRoger8
RT @ShereesePubHlth: Hi guys. I'm Shereese. For #openmic I'd like to remind everyone that it's #PancreaticCancerAwarenessMonth. Understandi…
Christina Lizaso @btrfly12
RT @abrewi3010: @JamieRoger8 @anthonynotleon I have been following the #patientdriven conversation. Today is a good Twitter day. I’m glad w…
ReedsBooks @LReedsbooks
@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 Casey Quinlan @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 Hartmann @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
Becky Brandt RN @bbhomebody
Hi everyone. I'm Becky from Washington jumping in late. @Cpnervecenter #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 w…
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
Becky Brandt RN @bbhomebody
@fireflyrn84 Hi pumpkin 💖 #patientchat
Jamie Roger @JamieRoger8
@bbhomebody @Cpnervecenter Hey Becky, good to have you! #patientchat
Nigel H @Crohnoid
@LReedsbooks @patientchat Yes, spot on. The definition is the presence of one or more additional diseases or disorders co-occurring with (that is, concomitant or concurrent with) a primary disease or disorder. Is the primary disease the first one experienced or can it change over time? #patientchat
ShereeseM, MS/MBA @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
Kimberly Hartmann @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 Hartmann @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
Becky Brandt RN @bbhomebody
@JamieRoger8 @Cpnervecenter Hi Jamie, long time no see😀🖐 #patientchat
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 comfortabl…
Christina Lizaso @btrfly12
RT @fireflyrn84: Treating the whole patient, not just the physical symptoms but also the psychosocial aspects. Those are so important. Also…
Christina Lizaso @btrfly12
RT @ShereesePubHlth: @anthonynotleon @patientchat That's why I'm glad for operations like @savvy_coop and @S4PM. They will encourage patien…
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 https://t.co/erte6gLl4m
Jamie Roger @JamieRoger8
RT @ShereesePubHlth: @anthonynotleon @patientchat That's why I'm glad for operations like @savvy_coop and @S4PM. They will encourage patien…
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…
Heidi Gardner @heidirgardner
RT @MightyCasey: <running in late> HEY! Casey here, loudmouth in service of healthcare system/science progress. Latest personal #epatient n…
Mighty Casey Quinlan @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 a…
Kimberly Hartmann @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 Hartmann @fireflyrn84
@abrewi3010 @bbhomebody You can be pumpkin too! Just for today :) #patientchat
Nigel H @Crohnoid
I just wonder how people feel about the recent hashtag #doctorsaredickheads. Personally I was uncomfortable with it. #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. #pa
Becky Brandt RN @bbhomebody
@JamieRoger8 Tweet chats definitely deliver great patient content! We all help each other. I also search for info online from good, documented sources. #patientchat
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 valu…
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…
ReedsBooks @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 Hartmann @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
ShereeseM, MS/MBA @ShereesePubHlth
@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…
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
Nigel H @Crohnoid
@vrulon @btrfly12 I would love to be able to have my 3 different specialists in a room and then ask some really simple questions about how the various conditions may have arisen or impact from each other. What would be obvious to them is definitely not obvious to me #patientchat
Becky Brandt RN @bbhomebody
@Crohnoid Oh gosh, my doctor is so great and always helpful! I would rephrase that to say #MyDoctorIsAwesome #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: @vrulon I force myself to read/find cancer, diabetes, caregivers, cystic fibrosis, narcolepsy stories. Then I include the w…
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 Hartmann @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
Nigel H @Crohnoid
@abrewi3010 @bbhomebody @fireflyrn84 Have you seen the series "Killing Eve"?. You wouldn't want to be called #pumpkin if you had #KillingEve #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 @fireflyrn84 Hi Alan! 😀🖐 Of course you are on my pumpkin list too! #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, a…
Christina Lizaso @btrfly12
RT @LReedsbooks: @fireflyrn84 @Crohnoid The questions are -- do physicians treat the whole patient? and how well are patients informed of s…
Kimberly Hartmann @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
Nigel H @Crohnoid
@ShereesePubHlth The word I used was "obnoxious" and then I was accused of "trying to police Twitter"! It reminded me of Trumo's #hatespeak #patientchat
Mighty Casey Quinlan @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
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
ReedsBooks @LReedsbooks
Yes -- this extra burden has been confirmed. #patientchat
Kimberly Hartmann @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 a…
Nigel H @Crohnoid
@JamieRoger8 I saw that. Didn't impress me either #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 Hartmann @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
Becky Brandt RN @bbhomebody
Does anyone here have an emotional support animal? I saw my doctor yesterday and she offered to write a letter to make my dog a certified emotional support animal so I can fly with her. MY DOCTOR IS AWESOME #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
Alan Brewington @abrewi3010
RT @bbhomebody: Does anyone here have an emotional support animal? I saw my doctor yesterday and she offered to write a letter to make my d…
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…
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 re…
Becky Brandt RN @bbhomebody
@ShereesePubHlth @anthonynotleon @patientchat @savvy_coop @S4PM I agree 100%. @savvy_coop and @S4PM are rockstars for patient empowerment. #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…
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
ReedsBooks @LReedsbooks
@TRCWriter @btrfly12 @vrulon @anthonynotleon @patientchat That's a good strategy. #patientchat
Kimberly Hartmann @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 t…
Becky Brandt RN @bbhomebody
@ZHeatherChamp So lucky! I didn't even have to ask! #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 eac…
Mighty Casey Quinlan @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 Hartmann @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
ReedsBooks @LReedsbooks
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…
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 t…
Henry Cruz @RealCruzHenry
RT @fireflyrn84: @Crohnoid Wow, I'm feeling a little shocked. I think the hashtag is completely inappropriate. Everyone is entitled to thei…
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…
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…
Kimberly Hartmann @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 re…
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
Becky Brandt RN @bbhomebody
@ZHeatherChamp @patientchat You can use your patient knowledge to assist other patients who are struggling with similar issues, on social media (like here), in patient co-ops, in person at meetings etc. #patientchat
Nigel H @Crohnoid
@fireflyrn84 I used the word "obnoxious" and was accused of "trying to police Twitter"! It reminded me of #Trump's #HateSpeech #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 Hartmann @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
Becky Brandt RN @bbhomebody
@btrfly12 @JamieRoger8 Right on! @btrfly12 Stellar idea! #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
Nigel H @Crohnoid
@LReedsbooks @TRCWriter I take a list in with me to every appointment. It sets the agenda and lets the consultant know that we aren't finished until we reach the bottom of the list. I have a few more tips - https://t.co/xFG4dqRSxr #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 collaborativ…
Becky Brandt RN @bbhomebody
@JamieRoger8 @Crohnoid Sounds alot like politics these days!🤪 #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
John Chamberlain @misterchambo
RT @anthonynotleon: @btrfly12 It's why I found a clinical nutrionist / functional medicine individual who was willing to spend the time and…
Dave deBronkart @ePatientDave
#patientchat
Christina Lizaso @btrfly12
RT @Crohnoid: @LReedsbooks @TRCWriter I take a list in with me to every appointment. It sets the agenda and lets the consultant know that w…
Nigel H @Crohnoid
@bbhomebody @JamieRoger8 Sorry. Broke my golden rule - no religion; no politics #patientchat
Kimberly Hartmann @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 Casey Quinlan @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
ShereeseM, MS/MBA @ShereesePubHlth
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 mov…
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 Casey Quinlan @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/sh…
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
Complex Cassandra @Noetrope
RT @abrewi3010: @TRCWriter @Crohnoid I think it’s important to remember that twitter exploded with patients bc we were not being heard. We…
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
Mommy's Cancer @MommysCancer
RT @btrfly12: 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 weig…
Kimberly Hartmann @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 Casey Quinlan @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
Becky Brandt RN @bbhomebody
@fireflyrn84 @Crohnoid @abrewi3010 Absolutely! My pumpkins are kind, caring & smart! In fact @Crohnoid, you have all the good pumpkin traits! You're in the club! 😀👍#patientchat
Kimberly Hartmann @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 t…
Mighty Casey Quinlan @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
Nigel H @Crohnoid
@fireflyrn84 @JamieRoger8 @TRCWriter I find blogging is really cathartic. It helps you become objective as you have to think carefully about how to get your story or topic over to others. Would recommend it to anyone #patientchat
Becky Brandt RN @bbhomebody
@Crohnoid @vrulon @btrfly12 A collaboration of doctors would be so great! Even on a video chat if they couldn't all be there in person. #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 @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 @llake
RT @anthonynotleon: @patientchat I've been talking with a couple of clinical nutritionists and they were telling me me they are seeing more…
Kimberly Hartmann @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 @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 valu…
Nigel H @Crohnoid
@bbhomebody @vrulon @btrfly12 Excellent idea. Like having an open #MDM (#MultiDisciplinaryMeeting) #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
ReedsBooks @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
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 eve…
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 treat…
Becky Brandt RN @bbhomebody
@JamieRoger8 @TRCWriter @fireflyrn84 @HealthStoryCo Oh good one @JamieRoger8 How did I not know about them? @HealthStoryCo I'm now a follower! 😀 #patientchat
Kimberly Hartmann @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
ReedsBooks @LReedsbooks
@Crohnoid Not appropriate. #patientchat
lillian lake @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
Nigel H @Crohnoid
@fireflyrn84 ...and drawing diagrams in an attempt to understand linkages between conditions or look for patterns in test results ...and being a nerd! #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
Becky Brandt RN @bbhomebody
@abrewi3010 EVERYONE VOTE!!! We all need to remember that its a huge privilege. #patientchat
Christina Lizaso @btrfly12
RT @JamieRoger8: @TRCWriter @fireflyrn84 @salemoaks is working to educate patients on how to be a #valued #stakeholder at the table, someti…
Christina Lizaso @btrfly12
RT @Crohnoid: @fireflyrn84 @JamieRoger8 @TRCWriter I find blogging is really cathartic. It helps you become objective as you have to think…
ShereeseM, MS/MBA @ShereesePubHlth
RT @bbhomebody: @abrewi3010 EVERYONE VOTE!!! We all need to remember that its a huge privilege. #patientchat
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…
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 becau…
Kimberly Hartmann @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 he…
lillian lake @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…
Becky Brandt RN @bbhomebody
@Crohnoid @fireflyrn84 Nerds are AWESOME! #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
Alan Brewington @abrewi3010
RT @bbhomebody: @abrewi3010 EVERYONE VOTE!!! We all need to remember that its a huge privilege. #patientchat
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…
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 @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
Nigel H @Crohnoid
@btrfly12 @ePatientDave @MightyCasey @JamieRoger8 @DrDannySands @smart_patients I would not recommend many of the FB forums, especially for the newly Dx'd. To me they seem heavily weighted towards the negativ, which is understandable, as patients are looking for support about problems but positive stories are few and far between #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
Alan Brewington @abrewi3010
RT @bbhomebody: @Crohnoid @fireflyrn84 Nerds are AWESOME! #patientchat
Kimberly Hartmann @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 @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
Nigel H @Crohnoid
@llake @JamieRoger8 I believe it was driven by frustration of patients who had been treated badly and then not listened to but I still question whether the end justified the means #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
lillian lake @llake
@vrulon @abrewi3010 Right! And all stigmas for that matter. #patientchat
Mighty Casey Quinlan @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
Nigel H @Crohnoid
Maybe this open mike session could become a regular feature. Very stimulating and wide ranging discussion. Thanks #patientchat
lillian lake @llake
@Crohnoid @JamieRoger8 Well, it did get a conversation going... Sometimes exageration is needed to get noticed. Before a situation esculates. #patientchat
Mighty Casey Quinlan @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…
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 @llake
RT @JamieRoger8: #patientchat . I really enjoyed not having a specific topic today but instead just having the time to start a free flowing…
Fierce Fibro Femme @FemmeFibro
RT @fireflyrn84: Hi everyone! Just a little late. Kim from Wisconsin. I'm a #raredisease and #chronicillness advocate and blogger. Looking…
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 d…
Jamie Roger @JamieRoger8
@Crohnoid maybe on the weeks in between the regularly scheduled #patientchat
lillian lake @llake
RT @vrulon: @llake @abrewi3010 Totally agree. Fight all #stigmas = #ageism #weight #gender #diagnoses etc. etc. #patientchat - we are all d…
Christina Lizaso @btrfly12
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Becky Brandt RN @bbhomebody
CT The more time we spend as patients, the more knowledge we have to offer. Remember, we all started in a similar place. Share your story & your knowledge, because somebody out there needs you! #patientchat @Cpnervecenter
Alan Brewington @abrewi3010
RT @bbhomebody: CT The more time we spend as patients, the more knowledge we have to offer. Remember, we all started in a similar place. S…
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
RT @bbhomebody: CT The more time we spend as patients, the more knowledge we have to offer. Remember, we all started in a similar place. S…
Becky Brandt RN @bbhomebody
@Crohnoid I agree! Todays chat was really fun! #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" witho…
Ronny Allan @RonnyAllan1
@Crohnoid I find it offensive as a patient #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 @JamieRoger8 I second that second....or third that? Whatever! LOL #patientchat
Becky Brandt RN @bbhomebody
RT @fireflyrn84: My blog is https://t.co/fbup4rvlBC #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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Becky Brandt RN @bbhomebody
@emilyt804 What a great name, "Mr. Fluffy". 😃 I think all animals are emotional support! Your backpack idea is perfect! 👍 #patientchat
#patientchat content from Twitter.