#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.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Lisa here from Florida & co-founder of @Cpnervecenter Advocate for #PatientPerspective #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
Lisa Davis Budzinski @lisadbudzinski
@patientchat @power4patients Hi Kara 👋 #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/GjfD3hleMf
ShereeseM, MS/MBA @ShereesePubHlth
Hi all. I'm Shereese, HCV strategist, writer/speaker from Maryland #patientchat https://t.co/QfzFiJI7rc
Christina Lizaso @btrfly12
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Christina Lizaso @btrfly12
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/GjfD3hleMf
Alan Brewington @abrewi3010
Alan here. I’m a #chronicpain #rheum & #mentalhealth storyteller from Boise Idaho. Good morning! #patientchat https://t.co/MDavJb0p9S
Ross @Rossco006
@patientchat Hi everyone! Ross checking in today! #patientchat
Mary MACK @MaryOCMack
Hello, I'm Mary #patientchat
Ross @Rossco006
@patientchat @power4patients Hi Kara! #patientchat
Christina Lizaso @btrfly12
Hi #patientchat - I'm passionate about community engagement and health. You can find me on #gyncsm #patientshavepower #nsgcgenepool :)
Lisa Davis Budzinski @lisadbudzinski
@ShereesePubHlth Hi Shereese! #patientchat https://t.co/OVEfxNa1iP
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/99wmvHtpts #patientchat
Rie Lopez, MPH @RieOfLetters
Happy Friday everyone! Rie is here for another exciting installment of #patientchat! Health educator, patient advocate, delightful patient, and overall splendiferous human! https://t.co/6xdRewEXJu
Rie Lopez, MPH @RieOfLetters
@btrfly12 Great to see you again Christina! #patientchat
Patient Chat @patientchat
Today's #patientchat topic is What to Do When No One Will Listen https://t.co/GjfD3hleMf
HealthSparq @HealthSparq
Good morning #patientchat! A few minutes late, but excited to be here, awesome topic today! This is @annerskg here from @healthsparq & #WTFix!
Lisa Davis Budzinski @lisadbudzinski
@Rossco006 @patientchat Hi Ross 👋 #patientchat
Rie Lopez, MPH @RieOfLetters
@Rossco006 @patientchat Hi Ross!! Happy Friday! :-) #patientchat
Health Scare System @HealthScareSyst
I'm here. I'm a patient advocate dedicated to improving outcomes and solving medical bill and insurance claim problems #patientchat
ChronicallyJess @chronicallyjess
I’m Jess! Crohns patient advocate from New Hampshire. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@lisadbudzinski How was your week? #patientchat https://t.co/MIZ13Lf4ga
Lisa Davis Budzinski @lisadbudzinski
@RieOfLetters Hi Rie!! #patientchat https://t.co/QKnhF1SCHk
Rheumatoid Patient @rheumpatient
Hi. I'm from London, England and have rheumatoid arthritis with a bit of secondary fibromyalgia and Sjogren's Syndrome thrown in. #patientchat
Alan Brewington @abrewi3010
@btrfly12 Thank you 🙏 #patientchat
HealthSparq @HealthSparq
RT @patientchat: Today's #patientchat topic is What to Do When No One Will Listen https://t.co/GjfD3hleMf
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Rie Lopez, MPH @RieOfLetters
@abrewi3010 #patientchat https://t.co/ZYY0fMAo9J
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq @annerskg Hi Anna! #patientchat https://t.co/AaqhWcJOAM
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
Mighty Casey Quinlan @MightyCasey
HAAAAIIII! Casey Q here, the Mighty Mouth, all about #healthliteracy + #opendata + #openscience + #rightcare. Member of #bcsm too. #patientchat
Patient Empowerment @power4patients
Happy Friday everyone! At PEN were passionate about educating and empowering patients to get the best care they deserve. You can learn more here: https://t.co/F8vP463ugn #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Rie Lopez, MPH @RieOfLetters
@lisadbudzinski @Cpnervecenter Hi Lisa! Hope that you are having an wonderful Friday so far. #patientchat https://t.co/dq4LYB08id
Patient Chat @patientchat
T1: Why do you think it is that patients sometimes feel that they’re not being heard by doctors or other health care providers? #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T1: Why do you think it is that patients sometimes feel that they’re not being heard by doctors or other health care provi…
Lisa Davis Budzinski @lisadbudzinski
@ShereesePubHlth Usual, a little of everything thrown into the pot 🤗💕✨ Happy Friday to you!!! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@RieOfLetters @Cpnervecenter You as well! Wonderfully magical ✨ #patientchat
Christina Lizaso @btrfly12
RT @power4patients: Happy Friday everyone! At PEN were passionate about educating and empowering patients to get the best care they deserve…
Health Scare System @HealthScareSyst
T1: doctors are trained to be confident and alpha's. #patientchat
Barby Ingle 📣 @BarbyIngle
T1: Sometimes we just are not. I am a very empowered SelfAdvocate. I know the right words to communicate w my providers, but some take it as I am being rude, an addict (for knowing to much), or trying to be a doctor. I am just trying to get proper and timely care. #patientchat https://t.co/gXmQPfI7iK
Christina Lizaso @btrfly12
RT @patientchat: T1: Why do you think it is that patients sometimes feel that they’re not being heard by doctors or other health care provi…
Alan Brewington @abrewi3010
@RieOfLetters #patientchat https://t.co/yrY1vnG1Lk
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T1: Sometimes we just are not. I am a very empowered SelfAdvocate. I know the right words to communicate w my providers, bu…
Your GPS Doc, LLC @yourgpsdoc
Hi everyone. I’m Nicole Rochester, physician, caregiver, patient advocate, Founder/CEO of #yourgpsdoc #patientchat
Christina Lizaso @btrfly12
#patientchat
Health Scare System @HealthScareSyst
T1: and often doctors don't take the time to explain terminology. it's intimidating to ask a ton of questions. #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T1: Sometimes we just are not. I am a very empowered SelfAdvocate. I know the right words to communicate w my providers, bu…
Barby Ingle 📣 @BarbyIngle
RT @BarbyIngle: T1: Sometimes we just are not. I am a very empowered SelfAdvocate. I know the right words to communicate w my providers, bu…
Rie Lopez, MPH @RieOfLetters
@ChronicallyJess Great to see you Jess! Wishing you a warm Friday from your neighbor in MA #patientchat
Melissa VanHouten @melissarvh
A1 B/c sometimes they're not - or aren't being understood. Discouraging when doc ignores concerns, behaves in dismissive manner #patientchat
Ross @Rossco006
@btrfly12 Hi Christina! Great to see you! #patientchat
Mary MACK @MaryOCMack
I think they feel that way, because they actually are not being listened to. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T1 It's hard to cultivate a relationship 15 minutes at a time. Patients may feel they're being shuffled through a process instead of included in the process of their care.When it comes top care, you must be heard to be seen, not the other way around #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1: Sometimes we just are not. I am a very empowered SelfAdvocate. I know the right words to communicate w my providers, bu…
Patient Empowerment @power4patients
T1: With our healthcare system, doctors are overloaded with patients and stress so sometimes patients can feel rushed #patientchat
Ross @Rossco006
@RieOfLetters @patientchat Hi Rie! Happy Friday right back at ya! #patientchat
Christina Lizaso @btrfly12
T1: I think having to do all your own care coordination leaves you feeling alone and unheard. I think this intensifies for "rare" diseases. #patientchat
Ross @Rossco006
@ChronicallyJess Hi Jess! #patientchat
Alan Brewington @abrewi3010
A1 to often there is a belief that technology can compensate for not actively listening/humanizing my story or quality of life. #patientchat
Mighty Casey Quinlan @MightyCasey
A1: Too many MDs + other clinicians feel like they're on a factory line. So they see us as being on a conveyor belt. What could go wrong? 😱😱😱 #patientchat
Mary MACK @MaryOCMack
T1 I think sometimes judgements are made and all real listening is out the window #patientchat
Your GPS Doc, LLC @yourgpsdoc
Because it’s true! Barriers such as time restraints, EMR, and regulations interfere with the doctor-patient relationship and negatively impact communication. #patientchat https://t.co/FotytnSCOd
Melissa VanHouten @melissarvh
@power4patients And sometimes patients ARE rushed - not simply a feeling. #patientchat
Rie Lopez, MPH @RieOfLetters
T1: This is a loaded question, but I have had HCPs stare at their computer instead of looking at me while I speak, fail to accurately repeat back information I just gave them, or indicate that my symptoms were irrelevant or lacking in importance. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 Dr not listening or saying You look Fine, or But your numbers are right in the norms #patientchat https://t.co/mLJj6qKKbb
Christina Lizaso @btrfly12
RT @ShereesePubHlth: T1 It's hard to cultivate a relationship 15 minutes at a time. Patients may feel they're being shuffled through a proc…
Melissa VanHouten @melissarvh
RT @lisadbudzinski: T1 Dr not listening or saying You look Fine, or But your numbers are right in the norms #patientchat https://t.co/mLJj6…
Health Scare System @HealthScareSyst
T1: if a doctor does not have a transcriber, often they are standing behind a computer making it seem like they aren't listeni #patientchat
Anne Polta @annepolta
T1 The dr often sets the agenda for the encounter and the pt's specific concerns can be secondary and/or unheeded. #patientchat
Anthony Leon @anthonynotleon
@patientchat T1: When I have my patient hat on, I often feel rushed, no prying for more info/clarifying questions, I see doc/nurse behind screen more than in front of me, and then handed a Rx. This makes you feel like a transaction/inconvenience than someone seeking help. #patientchat
The Advocate Is In @TheAdvocateIsIn
Hi. I'm Claire, patient advocate and blogger @TheAdvocateIsIn. Type 1 diabetes, CKD, asthma, anemia. #patientchat
Alan Brewington @abrewi3010
A1 quality of life has been buried in big data and symptom management. I’m not a person anymore, I’m a case. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@EmMorgan27 Plain language is key! #patientchat
Anne Polta @annepolta
The time pressures are huge. https://t.co/3E14WmZRQp
Ross @Rossco006
A1: I think sometimes the physician feels intimidated that you are the expert of your own body! #patientchat https://t.co/XdkY1Us1QH
Mighty Casey Quinlan @MightyCasey
A1: Severe lack of comms-skill training in #meded too, which makes listening ... hard. Training seems to focus on creating "smartest kid in room" feeling for MDs, which leads to inability to hear any voice but their own. #patientchat
Christina Lizaso @btrfly12
T1: I think some docs have a major disconnect with their own staff from the front desk to the financial, etc. I think this intensifies the feeling of patients feeling unheard/unattended to. #patientchat
Rheumatoid Patient @rheumpatient
T1: I find I can't say anything to HPs without it being blamed on my RA or fibromyalgia, even though it is unrelated. I now try to not mention the fibro. #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: A1 to often there is a belief that technology can compensate for not actively listening/humanizing my story or quality of l…
TechnoJeder BigData @technojederbig
RT @abrewi3010: A1 quality of life has been buried in big data and symptom management. I’m not a person anymore, I’m a case. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@anthonynotleon @patientchat I recently told @LeaChatham of visiting a hosp where patients were being called like cattle; numbers being shouted in the waiting room. What patient would feel empowered or heard under these conditions? #patientchat
Mighty Casey Quinlan @MightyCasey
@TheAdvocateIsIn HI!! Too long no see IRL. Hope to fix that soon =) #patientchat
Rie Lopez, MPH @RieOfLetters
@lisadbudzinski Yes, Lisa!! The numbers! This has always been a challenge for me. The numbers are within range, but that doesn't mean they are right for me! #patientchat
Mighty Casey Quinlan @MightyCasey
RT @btrfly12: T1: I think some docs have a major disconnect with their own staff from the front desk to the financial, etc. I think this in…
Melissa VanHouten @melissarvh
A1 Can happen when docs focus on symptoms not important to patient, doesn't seem 2 know med history, forgets important details #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: A1 quality of life has been buried in big data and symptom management. I’m not a person anymore, I’m a case. #patientchat
Annette McKinnon @anetto
RT @rheumpatient: T1: I find I can't say anything to HPs without it being blamed on my RA or fibromyalgia, even though it is unrelated. I n…
Iris Kisch @iriskisch
Myriad of reasons - patients don't take a proactive role in their own care; may not know how to talk to & partner with doc in their own care; docs are overbooked with patients or docs use too many acronyms and medical phrases to be clearly understood. https://t.co/uJ2nDLfjzF
Participatory Med @S4PM
RT @MightyCasey: A1: Severe lack of comms-skill training in #meded too, which makes listening ... hard. Training seems to focus on creating…
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/GjfD3hleMf #patientchat
Rheumatoid Patient @rheumpatient
RT @btrfly12: T1: I think having to do all your own care coordination leaves you feeling alone and unheard. I think this intensifies for "r…
Melissa VanHouten @melissarvh
RT @ShereesePubHlth: @anthonynotleon @patientchat I recently told @LeaChatham of visiting a hosp where patients were being called like catt…
Christina Lizaso @btrfly12
RT @rheumpatient: T1: I find I can't say anything to HPs without it being blamed on my RA or fibromyalgia, even though it is unrelated. I n…
Anne Polta @annepolta
Totally. When I feel I'm not being heard, it undermines my confidence in my ability to communicate and advocate for myself. #patientchat https://t.co/H76JiGSdNK
The Advocate Is In @TheAdvocateIsIn
T1: I think we are conditioned to see our providers as the only authorities, but who knows our bodies better than we do? We forget that our info is just as valuable as theirs. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@btrfly12 So true! My Dr didn’t even know the office girl was making the decisions based on when she thought I needed my eScripts 😳 He was in utter shock reading my notes of having to call in & plea for my meds #patientchat
Anne Polta @annepolta
@ShereesePubHlth @anthonynotleon @patientchat @LeaChatham Appalling. #patientchat
Patient Chat @patientchat
T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientchat
Ross @Rossco006
You had the perfect way of saying this Barby! I think sometimes the providers get a little flustered because we do know a lot. For the most part they are used to the patient being the one who listens. I think they feel taken aback that sometimes they have to listen. #patientchat https://t.co/0EHtw1aokC
Barby Ingle 📣 @BarbyIngle
T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than the words of the patient (subjective). Having someone there to back up they saw you go through xyz makes a difference to the provider. #patientchat https://t.co/oMSAhtOmad
Christina Lizaso @btrfly12
@ShereesePubHlth @anthonynotleon @patientchat @LeaChatham Simply walking over to the person and saying, Ms. Lizaso, wer're ready to see you now would be huge improvement. So simple to give ppl dignity really. #patientchat
The Advocate Is In @TheAdvocateIsIn
.@MightyCasey Good to see you, too! #patientchat
Health Scare System @HealthScareSyst
T2: Advocating for yourself is extremely challenging. I like to think that I do. But illness can affect your perceptions. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@MightyCasey This is exactly why patients, advocates need to be a part of #MedEd #patientchat
Katie @katie5280
@patientchat T1: Could be due to communication issues. If a provider appears to be rushed, a patient may not be as forthcoming. #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than…
Your GPS Doc, LLC @yourgpsdoc
@MightyCasey This is changing with increased use of standardized patients and more emphasis on the art of medicine. #patientchat
Patient Empowerment @power4patients
T2: It’s important to know how to advocate for yourself even if you never need to. Check out this blog by @mightycasey where she shares her tips on how to be your own best healthcare advocate https://t.co/yemBv0KoHl #patientchat
Anthony Leon @anthonynotleon
@ShereesePubHlth @patientchat @LeaChatham I like to think I'm fairly in tune with my body and knowing when something is wrong. I had to argue with my doc to add some items to my blood panel last year because they disagreed with my concern of possible cause. I was right btw. Shouldn't have to fight for it #patientchat
Ross @Rossco006
@btrfly12 Yes well said! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @katie5280: @patientchat T1: Could be due to communication issues. If a provider appears to be rushed, a patient may not be as forthcom…
Rheumatoid Patient @rheumpatient
@MaryOCMack I saw a doc in Urgent Care recently who got all the test results BEFORE taking a history. She said "There is nothing wrong with you but I'll examine you anyway.". Judged before I even walked in the room! #patientchat
Christina Lizaso @btrfly12
RT @AnnePolta: Totally. When I feel I'm not being heard, it undermines my confidence in my ability to communicate and advocate for myself.…
Lea Chatham @LeaChatham
RT @btrfly12: @ShereesePubHlth @anthonynotleon @patientchat @LeaChatham Simply walking over to the person and saying, Ms. Lizaso, wer're re…
Rie Lopez, MPH @RieOfLetters
@EmMorgan27 I feel this so much. I have come a long way, but ...ugh! The self-doubt can really cause havoc. We need to get more quality time to make a meaningful connection on both ends and this will take a lot of work. #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than…
Susan Schulz @suebarryschulz
T1:I sometimes wonder if they are uncomfortable with what they don't know so they simply don't address the symptoms they don't understand. #patientchat
Your GPS Doc, LLC @yourgpsdoc
Agree 100% #patientchat https://t.co/Fa6i1GBu1M
Ross @Rossco006
@HealthSparq @annerskg Glad you could make it! #patientchat
Christina Lizaso @btrfly12
RT @lisadbudzinski: @btrfly12 So true! My Dr didn’t even know the office girl was making the decisions based on when she thought I needed m…
Christina Lizaso @btrfly12
RT @patientchat: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientc
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than…
Melissa VanHouten @melissarvh
A2 Frequently. Have blatantly (but respectfully) stated I object to path doc is taking and have recommended alternatives. #patientchat
Alan Brewington @abrewi3010
A2 I’ve fired 2 rheumatologists. They obviously didnt think I was worth their precious time. Found someone who wants to be my doc. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@rheumpatient @MaryOCMack :-( #patientchat
Christina Lizaso @btrfly12
RT @BarbyIngle: T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than…
Liz Szabo @LizSzabo
RT @patientchat: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientc
Rheumatoid Patient @rheumpatient
RT @lisadbudzinski: T1 Dr not listening or saying You look Fine, or But your numbers are right in the norms #patientchat https://t.co/mLJj6…
Christina Lizaso @btrfly12
RT @katie5280: @patientchat T1: Could be due to communication issues. If a provider appears to be rushed, a patient may not be as forthcom…
Lisa Davis Budzinski @lisadbudzinski
@RieOfLetters Exactly✨ Not to mention that labs use different ranges 😳 #patientchat
Rie Lopez, MPH @RieOfLetters
T2: Traditionally, I always deferred to the health care provider. However, as I have grown in my advocacy for other patients, I am feeling much more confident in advocating for myself. This has made a tremendous difference in my treatment plan and my QOL.#patientchat
Katie @katie5280
@patientchat T2: Yes! I have said things like "you're not listening to me" #patientchat
ChronicallyJess @chronicallyjess
T2: When it felt like doctors were moving in a direction that was not in line with my goals, I had to clearly articulate my most important goal. My most impactful convo made my doc realize that she wasn’t meeting my needs, and she helped my find the doc who could. #patientchat https://t.co/bVB2eVeJdn
Mighty Casey Quinlan @MightyCasey
@yourgpsdoc Yeah, but the Glover Effect is still in ... effect. So YMMV, both in clinic and in med school. Needs standardization, ain't there yet (sadly). #patientchat
Anthony Leon @anthonynotleon
@patientchat T2: I accidentally stated this is my last reply. Absolutely! I had to argue and request extra items on my blood panel 3 times for them to finally allow it. I'm paying for it, why is it a big deal? This drives a wedge in trust. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@btrfly12 @anthonynotleon @patientchat @LeaChatham I couldn't believe what I was witnessing. I told them of my concerns; that what they were doing was demeaning to Pts. They emailed me a month later but they still have the practice as of last week. #patientchat
Ronny Allan @RonnyAllan1
RT @anthonynotleon: @ShereesePubHlth @patientchat @LeaChatham I like to think I'm fairly in tune with my body and knowing when something is…
Ronny Allan @RonnyAllan1
RT @power4patients: T2: It’s important to know how to advocate for yourself even if you never need to. Check out this blog by @mightycasey
Ross @Rossco006
@RieOfLetters Unfortunately I’ve had this happen Rie! #patientchat
Ronny Allan @RonnyAllan1
RT @Rossco006: You had the perfect way of saying this Barby! I think sometimes the providers get a little flustered because we do know a lo…
Your GPS Doc, LLC @yourgpsdoc
T2: When caring for my dad with dementia (among many other chronic illnesses) I had to regularly advocate for him. Even as a doc, it was a challenge! It is why I now help others advocate for themselves. #patientchat https://t.co/02Xp8vRu8q
Alan Brewington @abrewi3010
A2 when I didn’t have health insurance I found a way to have my hospital bill audited. Went thru every charge 1 by 1. Got bill reduced some $4,000.00 #patientchat
ChronicallyJess @chronicallyjess
T1: sometimes it feels like patients and doctors aren’t “speaking the same language”. When that’s the case, and I really don’t feel heard, I try to write my top three concerns down on paper before the appointment, to literally put us on the same page. #patientchat https://t.co/CKibeTbEJl
Lisa Davis Budzinski @lisadbudzinski
T2 Bringing in “peer respected research” to show I do know about my conditions & here are other things that have been tried #patientchat https://t.co/jjBGXYwHhA
Rheumatoid Patient @rheumpatient
@yourgpsdoc @MaryOCMack Seriously, I'd wasted 5 hours of my life sat in Urgent Care waiting for that encounter. I have better things to do than 'pretend' I'm sick. #patientchat
Mighty Casey Quinlan @MightyCasey
I risked assault charge in hospital hallway on my mom's behalf in '95. Then for dad in '96. By the time I got #cancer dx in '07, I was pretty en fuego. #patientchat https://t.co/jW2IHqEJ3h
Mary MACK @MaryOCMack
T2 many, many times-- Learning to strongly advocate was absolutely necessary. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @katie5280: @patientchat T2: Yes! I have said things like "you're not listening to me" #patientchat
Christina Lizaso @btrfly12
RT @ChronicallyJess: T1: sometimes it feels like patients and doctors aren’t “speaking the same language”. When that’s the case, and I rea…
Your GPS Doc, LLC @yourgpsdoc
This is a great way to get your doctor’s attention. #patientchat https://t.co/uzdFaIi8qN
Patient Empowerment @power4patients
@abrewi3010 Wow! 😮 #patientchat
Mary MACK @MaryOCMack
T2. Learning to advocate in a way that does not alienate docs and other healthcare professionals is not easy. #patientchat
Emily Morgan @emmorgan27
Absolutely. As i've learned more about my disease and grown in my advocacy efforts I've learned how important it is to be on the same page. I've noticed that being persistence and being able to articulate my goals & concerns as clearly as possible truly helps. #patientchat
Ronny Allan @RonnyAllan1
RT @lisadbudzinski: T2 Bringing in “peer respected research” to show I do know about my conditions & here are other things that have been t…
Annette McKinnon @anetto
T1 It’s often hard to be reassessed when you have a chronic disease with few changes #patientchat
Patient Empowerment @power4patients
T2: We love sharing stories of empowerment. If you would like to share yours, please email kara@powerfulpatients.org #patientchat
ChronicallyJess @chronicallyjess
@katie5280 @patientchat Sometimes patient dissatisfaction just needs to be clearly stated to the doc. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/GjfD3hleMf #patientchat
Christina Lizaso @btrfly12
RT @MaryOCMack: T2. Learning to advocate in a way that does not alienate docs and other healthcare professionals is not easy. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T2 There is no harsher or expedient education than becoming sick in America. #patientchat https://t.co/N6ha38QgQa
Anne Polta @annepolta
T2 Often. I had to be very very persistent with an issue that wasn't improving. I had to get really blunt w. the dr about how it was affecting my everyday ability to function... and he finally heard me. #patientchat
Rie Lopez, MPH @RieOfLetters
@power4patients @abrewi3010 Now THAT is being empowered and advocating for yourself! Good for you! #patientchat
Patient Chat @patientchat
T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat
Your GPS Doc, LLC @yourgpsdoc
I encourage patients to try to work with their doctors but sometimes you have to part ways. “5 Signs it May Be Time to Dump Your Doctor” https://t.co/hwoEGypi6s #patientchat https://t.co/j5bH3p0eVb
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat
Mighty Casey Quinlan @MightyCasey
A2: My general approach is HAVE YOU MET ME? I also search for youngest female MD in practice when seeking new clinical team members. Winning play, in my experience. Then, there's the tattoo ... 😜😜😜 #patientchat
Melissa VanHouten @melissarvh
A3 Write list of ?s in advance & prioritize so most important are addressed. Consider purpose of visit & keep ?s in line w/that #patientchat
Barby Ingle 📣 @BarbyIngle
T3: I improve communication w my providers with a 1 pager https://t.co/tq9OBXUPKB that I present at every appt. It also saves time on paperwork because I can write 'see attached'. It includes my meds, current & ongoing issues, ?'s for the provider & past procedures #patientchat https://t.co/q3ZwTeMGTv
Alan Brewington @abrewi3010
A2 currently have over 120 EOB’s for dads hospital stays. Won’t pay a penny until I receive all EOBs from insurance/Medicare. #patientchat
Mighty Casey Quinlan @MightyCasey
@ShereesePubHlth Tru dat. On blast. #patientchat
Rie Lopez, MPH @RieOfLetters
RT @power4patients: T2: We love sharing stories of empowerment. If you would like to share yours, please email kara@powerfulpatients.org #p
Rheumatoid Patient @rheumpatient
@melissarvh Went for ultrasound recently and was having a flare up of my RA so struggling to get on and off the exam couch. Doc says "Have you got a bad back?". Clearly not read my med history. I said "I'm having a flare up of my RA". Doc: "Oh you have a bit of rheumatism?". 😡#patientchat
Patient Empowerment @power4patients
T3: Before your appointment, prioritize what you would like to address so you are ready to go when the doctor shows up #patientchat
HealthSparq @HealthSparq
@ShereesePubHlth #Fact. #Patientchat https://t.co/63Gtq2nURW
Christina Lizaso @btrfly12
T2: I definitely think it is hard to keep a calm, cool demeanor in the face of things you have a right to be upset about but that helps your concerns be heard vs. written off as just an angry patient. Not easy #patientchat
Alan Brewington @abrewi3010
RT @yourgpsdoc: I encourage patients to try to work with their doctors but sometimes you have to part ways. “5 Signs it May Be Time to Dump…
Ross @Rossco006
A2: On a few occasions I’ve had to advocate for myself. I’ve had to actually say “I need you to listen to my concerns” not just give me your diagnosis! That I really need you to hear what I’m saying. I actually asked the Dr to repeat back to me! #patientchat https://t.co/pXWbLzcYHL
International Pain Foundation® @powerofpain
RT @BarbyIngle: T3: I improve communication w my providers with a 1 pager https://t.co/tq9OBXUPKB that I present at every appt. It also sav…
Ross @Rossco006
RT @BarbyIngle: T2: As a chronic care pt, I try to always bring a caregiver or advocate w me to appts. They are seen as more objective than…
Alan Brewington @abrewi3010
@RieOfLetters @power4patients Thank you 🙏 My body & money, prove your charges! #patientchat
Rie Lopez, MPH @RieOfLetters
T3: One of the most important things you can do is to make eye contact and speak assertively, confident in your knowledge. This said, do your research! Seek out peer-reviewed papers, bring and take notes, engage them by asking questions. #patientchat
Christina Lizaso @btrfly12
RT @AnnePolta: T2 Often. I had to be very very persistent with an issue that wasn't improving. I had to get really blunt w. the dr about ho…
HealthSparq @HealthSparq
RT @patientchat: T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat
Annette McKinnon @anetto
The way language is used in medicine is different than in regular conversation #patientchat
Mighty Casey Quinlan @MightyCasey
@BarbyIngle I do much the same thing via export PDF from MS HealthVault. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T3 Write down concerns or question prior to an appt, even send your provider an email ahead of time. Be able to site specific studies and/or cases that might reinforce your POV on your issue. #patientchat
The Advocate Is In @TheAdvocateIsIn
T2: I won't go to providers who don't treat me as a peer. Not anymore. #patientchat
Mary MACK @MaryOCMack
T2. In my experience, I found that some docs had to be managed very delicately. All the while fearful and ill. #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T3: I improve communication w my providers with a 1 pager https://t.co/tq9OBXUPKB that I present at every appt. It also sav…
Patient Chat @patientchat
RT @RieOfLetters: T3: One of the most important things you can do is to make eye contact and speak assertively, confident in your knowledge…
Melissa VanHouten @melissarvh
A3 When speaking to doc & staff, be polite but assertive & direct. Ask ?s when you don't understand. No need 2 be embarrassed #patientchat
Ross @Rossco006
RT @RieOfLetters: T2: Traditionally, I always deferred to the health care provider. However, as I have grown in my advocacy for other pati…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T3: I improve communication w my providers with a 1 pager https://t.co/tq9OBXUPKB that I present at every appt. It also sav…
Your GPS Doc, LLC @yourgpsdoc
T3: 1. Come to the visit prepared with questions. 2. Ask the doctor to clarify any language you don’t understand. 3. Make your goals clear. 4. Don’t be afraid of speaking up. #patientchat https://t.co/1r4TcYn16P
Liz Kennerley @LifeAccrdingLiz
A1(a): Most, unfortunately, young women seem to have the hardest time being taken seriously! Personally, I've been labeled as having "conversion disorder" twice and anxiety or life stresses more times than I can count. #patientchat
Liz Kennerley @LifeAccrdingLiz
A1(b): BELIEVE there's a quote somewhere about how my age group is the hardest to diagnose because of life and body changes. Belly pain could either be appendicitis, food poisoning, a slew of gyn issues, etc. #patientchat
Christina Lizaso @btrfly12
RT @melissarvh: A3 Write list of ?s in advance & prioritize so most important are addressed. Consider purpose of visit & keep ?s in line w/…
Angela Cohen @angelee828
@patientchat Hey everyone, Sorry I’m late!! Angela here from Wisconsin. #patientchat
Dr Mary Ann Wilmarth @Back2backPT
Such an important topic! And I'm in the car on the way to #IVIG #infusion - late of course 😱 At gas station now. Will check in later👍 Happy chatting & listening😊 #patientchat @patientchat @Back2backPT Cheers💗 https://t.co/MJekqdMpTN
Alan Brewington @abrewi3010
A3 Healthcare providers are human too, easy to forget that they are not the bloated healthcare system. Humans together can solve system problems #patientchat
Lisa Davis Budzinski @lisadbudzinski
T3 Give respect, get respect. Make sure your HCPs KNOW you. The before you & the now you. Show them you are intelligent, you know your conditions & seeking quality of life ✨#patientchat https://t.co/t8WIYzlBuj
Rie Lopez, MPH @RieOfLetters
RT @yourgpsdoc: T3: 1. Come to the visit prepared with questions. 2. Ask the doctor to clarify any language you don’t understand. 3. Make y…
Mighty Casey Quinlan @MightyCasey
@btrfly12 Why I'm good at very low pitched voice, accompanied by a death stare. Takes less effort, partic when in pain. If you make 'em lean in to hear you ... SUCCESS. #patientchat
Your GPS Doc, LLC @yourgpsdoc
So important! #patientchat https://t.co/cLCzfUWDDu
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@ChronicallyJess There's a perception that everyone wants the "best" outcome without realizing that what is best for one person is not what's best for another. #patientchat
Christina Lizaso @btrfly12
RT @Rossco006: A2: On a few occasions I’ve had to advocate for myself. I’ve had to actually say “I need you to listen to my concerns” not j…
ShereeseM, MS/MBA @ShereesePubHlth
@melissarvh So true. 65% of readmitted patients admitted to not understanding what they were being told by their provider in previous visits. #patientchat
Mary MACK @MaryOCMack
T2. There are great docs out there the hard part is finding them. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @ShereesePubHlth: T3 Write down concerns or question prior to an appt, even send your provider an email ahead of time. Be able to site s…
ChronicallyJess @chronicallyjess
T3:Make a list of the top 3 concerns prior to attending an appointment. Let your doctor know at the beginning of appt. that you would like to leave with answers to your questions/concerns. Write down your docs answers and action steps and read them back to the doc. #patientchat https://t.co/evnhHAvGLY
Ross @Rossco006
@ChronicallyJess Writing things down on paper is important! Sometimes people get nervous or forget what they want to ask! Always! Always write things down. #patientchat
Patient Empowerment @power4patients
T3: Check out @JBBC's 15 Tips to Get the Most from Your Doctor's Visit to become a more empowered and engaged partner in your own health https://t.co/bAmqgUytnS #patientchat
Ronny Allan @RonnyAllan1
This works for me, it's a good approach T3 #patientchat https://t.co/w5K4r9dNi1
Rheumatoid Patient @rheumpatient
@BarbyIngle That's good if you have someone who can come with you. Also, less likely they'd be dismissive of you, though not always. Once I'd lost my voice (not my hearing!) so the rheum doc decided to not talk to me or my Dad for the whole consultation! Plain rude. #patientchat
Annette McKinnon @anetto
T3 Through Twitter and reading I have a good understanding of issues in medicine that makes it easier to talk to anyone in HC. #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@ChronicallyJess @NotesOnNursing talks about this very eloquently when she tells her story about living with Stage IV cancer. #patientchat
Christina Lizaso @btrfly12
RT @ShereesePubHlth: T3 Write down concerns or question prior to an appt, even send your provider an email ahead of time. Be able to site s…
Rie Lopez, MPH @RieOfLetters
Yes! There is work to be done on both sides, and that starts with viewing each other as humans. #patientchat https://t.co/GjrpRQ4LLB
Patient Chat @patientchat
RT @nancy_kusmaul: @ChronicallyJess There's a perception that everyone wants the "best" outcome without realizing that what is best for one…
Your GPS Doc, LLC @yourgpsdoc
This is a great way to refocus your doctor’s attention! #patientchat https://t.co/1VCIhyonrK
Dan Engel @DanEngelPTT
Absolutely, which is why we always need to be advocates. It's also why we should always have another advocate in the room, just in case we aren't hearing everything ourselves. #patientchat https://t.co/qqyuZ1BijJ
Melissa VanHouten @melissarvh
A3 Keep good records of medications & tests results & be prepared to present them. Good organization helps move visit along. #patientchat
Alan Brewington @abrewi3010
A3 tell your entire story, not just the bad. My quality of life is a big picture item, not just a symptom. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T3: Check out @JBBC's 15 Tips to Get the Most from Your Doctor's Visit to become a more empowered and engaged partner i…
Mighty Casey Quinlan @MightyCasey
A3: I always go in as my comedian self (truth: I did standup for years), which is a great icebreaker. I also have notes on current issue(s). Get 'em to like me by being funny. Then they listen. Or they get the dragon. #patientchat
Melissa VanHouten @melissarvh
RT @ShereesePubHlth: @melissarvh So true. 65% of readmitted patients admitted to not understanding what they were being told by their provi…
The Advocate Is In @TheAdvocateIsIn
My mother, who had Crohn's taught me how to advocate for myself, but when she complained of unusual back pain, no one took her seriously until she was at stage 4b of pancreas cancer. It was just back pain and she was already sick. #patientchat
Christina Lizaso @btrfly12
@MaryOCMack it is a lot to ask of us when we are not feeling our best #patientchat
Melissa VanHouten @melissarvh
RT @yourgpsdoc: This is a great way to refocus your doctor’s attention! #patientchat https://t.co/1VCIhyonrK
Martin J @swirlingair
RT @RonnyAllan1: This works for me, it's a good approach T3 #patientchat https://t.co/w5K4r9dNi1
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
Hi Everyone, Nancy here, dropping in late. I'm a social worker and researcher working on person-centered care. #patientchat
Julie Thoren @JulieThoren
@patientchat T1: Appt time constraints are a huge factor. Patients+providers desire to identify the primary concern as quickly as possible. Discussion of diagnosis and treatment is often limited. Educated patients will not "comply" if not listened to or disagree with doc's dx #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/GjfD3hleMf #patientchat
Rheumatoid Patient @rheumpatient
RT @anthonynotleon: @ShereesePubHlth @patientchat @LeaChatham I like to think I'm fairly in tune with my body and knowing when something is…
TinyFrighteningWoman @baba_lilith
Because my RA doctor repeatedly couldn’t remember my name the whole year I saw her? lol “feel” https://t.co/JqfGhCmQoi
ShereeseM, MS/MBA @ShereesePubHlth
T3 How to Advocate for Your Loved One With Dementia Via @yourgpsdoc https://t.co/bfFRLdvgH5 #patientchat
Ronny Allan @RonnyAllan1
RT @melissarvh: A3 Keep good records of medications & tests results & be prepared to present them. Good organization helps move visit along…
Christina Lizaso @btrfly12
RT @abrewi3010: A3 Healthcare providers are human too, easy to forget that they are not the bloated healthcare system. Humans together can…
Anthony Leon @anthonynotleon
@patientchat T2: 1/3 My worst experience was at my ED. I was having gallbladder issues and had a horrible attack at 2 am. I went in and they gave me the GI cocktail. I explained I worked in GI, it's not GERD, my GP thinks it may be gallsludge which I have a GI appt coming up. #patientchat
Alan Brewington @abrewi3010
RT @RieOfLetters: Yes! There is work to be done on both sides, and that starts with viewing each other as humans. #patientchat https://t.c…
Annette McKinnon @anetto
@rheumpatient @BarbyIngle It’s good to have someone with you. The doctor realizes you “have people” and also takes a bit more time. #Patientchat
Martin J @swirlingair
RT @melissarvh: A3 Keep good records of medications & tests results & be prepared to present them. Good organization helps move visit along…
Christina Lizaso @btrfly12
RT @MightyCasey: @btrfly12 Why I'm good at very low pitched voice, accompanied by a death stare. Takes less effort, partic when in pain. If…
Your GPS Doc, LLC @yourgpsdoc
@ShereesePubHlth Thanks Shereese! ❤️ #patientchat
Patient Chat @patientchat
T4: If you feel like your health care provider isn’t listening to you, what can you do? #patientchat
Christina Lizaso @btrfly12
RT @nancy_kusmaul: @ChronicallyJess There's a perception that everyone wants the "best" outcome without realizing that what is best for one…
Christina Lizaso @btrfly12
RT @ShereesePubHlth: @melissarvh So true. 65% of readmitted patients admitted to not understanding what they were being told by their provi…
Angela Cohen @angelee828
@patientchat T1: Sometimes it can be HCPs & Pts have different goals, it can be as simple as miscommunication, a new relationship that needs work, or unfortunately sometimes it does happen where we aren’t heard or HCPs aren’t open to patient participation in their own care. #patientchat
Rie Lopez, MPH @RieOfLetters
@nancy_kusmaul Hi Nancy! #patientchat https://t.co/c2MiSAm8yP
Lisa Davis Budzinski @lisadbudzinski
Sorry y'all, my Twitter is not updating and I'm missing quite a bit. #patientchat
Anne Polta @annepolta
Be prepared to be open-minded. What I thought was a nagging respiratory virus turned out to be lymphoma. These does need to be some mutual respect for each other's perspective. #patientchat
Anthony Leon @anthonynotleon
@patientchat T2 2/3 CT tech was called in and said "you better be hurting because this is costing extra". The ED nurse messed up my blood draw and had blood filling up the tray my arm was resting on. After a few hours, I asked what is going on, they didn't believe pain scale. #patientchat
Patient Empowerment @power4patients
RT @ShereesePubHlth: T3 How to Advocate for Your Loved One With Dementia Via @yourgpsdoc https://t.co/bfFRLdvgH5 #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @angelee828: @patientchat T1: Sometimes it can be HCPs & Pts have different goals, it can be as simple as miscommunication, a new relati…
Anne Polta @annepolta
RT @JulieThoren: @patientchat T1: Appt time constraints are a huge factor. Patients+providers desire to identify the primary concern as q…
Anthony Leon @anthonynotleon
@patientchat T2 3/3 I said it's not GERD. She said she believed I had drug seeking behavior. I said, please look at my Hx. I haven't been to an ED since I was 12. I had wisdom teeth removal 6 years ago, only took 2 vic. I raised a bit of hell after that. Haven't been there since. #patientchat
HealthSparq @HealthSparq
RT @patientchat: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientc
Rie Lopez, MPH @RieOfLetters
@anthonynotleon @patientchat Wishing you luck with your GI appointment coming up, Anthony! #patientchat
Your GPS Doc, LLC @yourgpsdoc
So true! #patientchat https://t.co/JpD0rnl8uU
Christina Lizaso @btrfly12
RT @DanEngelPTT: Absolutely, which is why we always need to be advocates. It's also why we should always have another advocate in the room,…
Barby Ingle 📣 @BarbyIngle
T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge I am going through to get the help I need'. #patientchat https://t.co/pcLRHiVCnh
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@EmMorgan27 @yourgpsdoc Realistic is such a loaded term in health care. Realistic in terms of statistical chances? Realistic in terms of "cure"? Whose reality? You're absolutely right about the myriad of variables that impact goals. #patientchat
HealthSparq @HealthSparq
RT @patientchat: T4: If you feel like your health care provider isn’t listening to you, what can you do? #patientchat
The Advocate Is In @TheAdvocateIsIn
T4: Sometimes going through support staff -- RNs, PAs, others -- can be easier than trying over and over to get the attention of someone who isn't listening. #patientchat
Jim Toms @09ea63
RT @RonnyAllan1: This works for me, it's a good approach T3 #patientchat https://t.co/w5K4r9dNi1
Melissa VanHouten @melissarvh
A4 "My concern is X. I do not feel we have adequately addressed that. Can we please revisit the topic?" #patientchat
Ross @Rossco006
Approach it very much like you would a friendship or partnership. Good listening skills and communication with one another are key. #patientchat https://t.co/ujDMFrdclM
Rie Lopez, MPH @RieOfLetters
@lisadbudzinski It isn't just you Lisa... I think Twitter is back to eating things. #patientchat https://t.co/2Pfdr5lIEn
Mary MACK @MaryOCMack
T3. My tips are don't show any defensiveness, if they are being dismissive. Just very calmly continue to speak and listen. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @anetto: @rheumpatient @BarbyIngle It’s good to have someone with you. The doctor realizes you “have people” and also takes a bit more t…
Alan Brewington @abrewi3010
A4 block the door, ask them about their day-give them a chance to take a breathe, ask them to repeat what your quality of life currently is #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge…
HealthSparq @HealthSparq
RT @abrewi3010: A3 tell your entire story, not just the bad. My quality of life is a big picture item, not just a symptom. #patientchat
CleanDrop @cleandropmobile
RT @ShereesePubHlth: T3 Write down concerns or question prior to an appt, even send your provider an email ahead of time. Be able to site s…
Ross @Rossco006
Great idea! Might just have to try this! #patientchat https://t.co/Is3pTkrO9Y
Christina Lizaso @btrfly12
RT @patientchat: T4: If you feel like your health care provider isn’t listening to you, what can you do? #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@patientchat A4: Getting other members of the health care team on board. Getting a second opinion. Changing physicians. All easier said than done, though. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T4 The quick and dirty; find another provider who will listen. We need to Amazon this issue. Your time and POV has value and providers need to take a collaborative, wholeness approach to your care. #patientchat https://t.co/9IN4YNMK4P
Mighty Casey Quinlan @MightyCasey
@anthonynotleon @patientchat DUUUUUDE. That sux. And it's far too common, in too many EDs across the universe. #patientchat
Patient Chat @patientchat
RT @melissarvh: A4 "My concern is X. I do not feel we have adequately addressed that. Can we please revisit the topic?" #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge…
Heidi Grabenstatter @PatientIntv
T2: If you aren't advocating for yourself, you aren't getting the best care. It requires patience and persistence, but it is required. Is there an option B? #patientchat https://t.co/ESqXLtppsC
Anthony Leon @anthonynotleon
Thank you @RieOfLetters . This was years ago. I ended up getting MRI, CT, Hida scan, etc. They want to do an ERCP but my experience working previously in GI has me shying away from that. Having changed my diet around has helped significantly. #patientchat https://t.co/QtEhuDjdMZ
Patient Empowerment @power4patients
T4: You could try to ask them questions to force their participation in the conversation or if you’re comfortable enough flat out ask them to listen to you. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@RieOfLetters Thank you for letting me know Rie✨ I've changed from phone to iPad to laptop and it's no different #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge…
HealthSparq @HealthSparq
Yes! So well said, Alan! #Patientchat #WTFix https://t.co/7H4hPl6biN
Annette McKinnon @anetto
RT @PatientIntv: T2: If you aren't advocating for yourself, you aren't getting the best care. It requires patience and persistence, but it…
Ross @Rossco006
@angelee828 @patientchat Hi Angela! #patientchat
Ronny Allan @RonnyAllan1
A4 #patientchat the PA has come to my rescue at times and the specialist Nurse on my team "has my 6". Flank them 😊 https://t.co/B5Wj6BKVfU
ChronicallyJess @chronicallyjess
@RieOfLetters Always ask questions! Your questions are valid, important, and ultimately why the doctor or nurse is in that room with you - to make sure that you have a medical care plan, and understand how to carry it out. #patientchat
ChronicallyJess @chronicallyjess
@AnnePolta Such an important point to remember - the open mindedness required to support a mutual relationship in medicine. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@melissarvh Thank you for letting me know that Melissa✨ and its good to see you!! #patientchat
Rie Lopez, MPH @RieOfLetters
T4: If your HCP is not listening to you, and you generally like them, start by talking to them. Communicate that you feel unheard and how it makes you feel. If you're not invested in the relationship for any reason, feel secure enough in yourself to walk away. #patientchat
Christina Lizaso @btrfly12
RT @melissarvh: A4 "My concern is X. I do not feel we have adequately addressed that. Can we please revisit the topic?" #patientchat
Barby Ingle 📣 @BarbyIngle
RT @Rossco006: Great idea! Might just have to try this! #patientchat https://t.co/Is3pTkrO9Y
The Advocate Is In @TheAdvocateIsIn
T3: I once told my (very proactive) doctor that I wouldn't see fellows anymore when I ran into two or three dismissive ones in a row. I don't have time for that. (He was at the clinic of a university med school.) #patientchat
Your GPS Doc, LLC @yourgpsdoc
T4: Restate your concerns in a clear and concise manner. Use qualifying statements like, “I have never had pain this severe before” or “This is different than what I’ve experienced in the past.” If you are concerned about a specific diagnosis, say so. #patientchat https://t.co/5OB1f8yd7m
Ross @Rossco006
@lisadbudzinski This was exactly what I was trying to say! #patientchat
Mary MACK @MaryOCMack
T4. That's a hard one. I had an ordeal of not listening and dismissiveness. I went for other opinions, but they all knew each other and still no one listened. When I almost died, then they listened. That was my experience #patientchat
Alan Brewington @abrewi3010
@HealthSparq Thank you 🙏 #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T4 Sometimes the most effective thing you can say to a non-engaged provider is, "Goodbye". Statistically, a disengaged provider will always be that way. Take a stand, find another provider. #patientchat https://t.co/iVx3Wrt3lf
Melissa VanHouten @melissarvh
A4 Don't be afraid 2 ask for 2nd opinion or referrals when appropriate. Consider new doc if unsatisfied & can't resolve issues #patientchat
Rheumatoid Patient @rheumpatient
RT @MaryOCMack: T2. In my experience, I found that some docs had to be managed very delicately. All the while fearful and ill. #patientchat
Annette McKinnon @anetto
RT @yourgpsdoc: T4: Restate your concerns in a clear and concise manner. Use qualifying statements like, “I have never had pain this severe…
Christina Lizaso @btrfly12
RT @PatientIntv: T2: If you aren't advocating for yourself, you aren't getting the best care. It requires patience and persistence, but it…
Mighty Casey Quinlan @MightyCasey
A4: Tough in US w/narrow networks dictated by payers. *ACTUAL* universal coverage would be super, but ... our Leerless Feeders seem to disagree on that one. #rightcare #healthcarematters #patientchat
Ross @Rossco006
RT @yourgpsdoc: T3: 1. Come to the visit prepared with questions. 2. Ask the doctor to clarify any language you don’t understand. 3. Make y…
Anne Polta @annepolta
RT @RieOfLetters: T4: If your HCP is not listening to you, and you generally like them, start by talking to them. Communicate that you fee…
Mighty Casey Quinlan @MightyCasey
RT @ShereesePubHlth: T4 Sometimes the most effective thing you can say to a non-engaged provider is, "Goodbye". Statistically, a disengaged…
Ross @Rossco006
RT @ChronicallyJess: T3:Make a list of the top 3 concerns prior to attending an appointment. Let your doctor know at the beginning of appt.…
Ronny Allan @RonnyAllan1
Truth. Working with HCPs can be the optimum solution A3 #patientchat https://t.co/naAz91RSRx
Your GPS Doc, LLC @yourgpsdoc
RT @ShereesePubHlth: T4 The quick and dirty; find another provider who will listen. We need to Amazon this issue. Your time and POV has val…
Rie Lopez, MPH @RieOfLetters
@anthonynotleon Ahhh... I wasn't quite sure on the time-table. I am glad that you are seeing a benefit in changing your diet. As always, wishing you the very best! :-) #patientchat
Heidi Grabenstatter @PatientIntv
T3: Health care providers are just people. Don't be intimidated (ever). Taking care of you is their job. Take full advantage of your time with them, go prepared, and ask questions. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T4: https://t.co/DJSaH7IV23 #patientchat
Anthony Leon @anthonynotleon
Having worked with docs, nurses, office staff, etc and now being on the tech side has allowed me to see why many times they are rushed, tired, hands are tied, etc. It's given me the ability to remember patients but to also see what is causing these comm issues. #patientchat https://t.co/QnH4dvG1zT
Melissa VanHouten @melissarvh
RT @yourgpsdoc: T4: Restate your concerns in a clear and concise manner. Use qualifying statements like, “I have never had pain this severe…
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/GjfD3hleMf #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: Topic 5 (T5:) coming up...https://t.co/GjfD3hleMf #patientchat
Alan Brewington @abrewi3010
A4 talk to an office manager or head nurse. Nurses are amazing patient advocates, especially when docs get to busy with system nonsense. #patientchat
Rheumatoid Patient @rheumpatient
@TheAdvocateIsIn Sorry to hear that. #patientchat
Patient Chat @patientchat
T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat
Heidi Grabenstatter @PatientIntv
RT @abrewi3010: A3 Healthcare providers are human too, easy to forget that they are not the bloated healthcare system. Humans together can…
Rheumatoid Patient @rheumpatient
RT @angelee828: @patientchat T1: Sometimes it can be HCPs & Pts have different goals, it can be as simple as miscommunication, a new relati…
ChronicallyJess @chronicallyjess
T2: You don’t need permission or even a breakup with your doc to get a second opinion. Make your notes, ask your questions, and If you know that it’s time to get other medical feedback, you deserve to go down that path. #patientchat https://t.co/i6GDHuP0Z0
Barby Ingle 📣 @BarbyIngle
T5. I have fired many providers. Let them go if the provider doesn't understand your disease and not willing to learn, if they don't offer the treatment option I am comfortable with, or they are not willing to include you on your care decisions. #patientchat https://t.co/8w6mMDa7pi
HealthSparq @HealthSparq
RT @yourgpsdoc: T4: https://t.co/DJSaH7IV23 #patientchat
Mighty Casey Quinlan @MightyCasey
@anthonynotleon Amen to that. The factory/conveyor-belt issue I mentioned in T1 is driven largely by the Click-i-verse now in place thanks to sh*tty EMRs development/implementation. Wotta sh*t show. #healthIT #interop #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat
Alan Brewington @abrewi3010
A5 when the crying starts #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T5. I have fired many providers. Let them go if the provider doesn't understand your disease and not willing to learn, if t…
Rie Lopez, MPH @RieOfLetters
Y'all hear that? #nurses are AMAZING patient advocates! They also make great friends! #patientchat https://t.co/K1sHUPWLwI
Annette McKinnon @anetto
@TheAdvocateIsIn It can be hard to believe the Residents but on the + side we hope they get better. #patientchat Got a 1 minute fibro misdiagnosis recently
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T5. I have fired many providers. Let them go if the provider doesn't understand your disease and not willing to learn, if t…
ChronicallyJess @chronicallyjess
T4: You don’t need permission or even a breakup with your doc to get a second opinion. Make your notes, ask your questions, and If you know that it’s time to get other medical feedback, you deserve to go down that path. #patientchat https://t.co/i6GDHv6BQy
Liz Kennerley @LifeAccrdingLiz
#patientchat
HealthSparq @HealthSparq
RT @patientchat: T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T5. I have fired many providers. Let them go if the provider doesn't understand your disease and not willing to learn, if t…
Patient Empowerment @power4patients
T5: Several signs it’s time to find a new doc – you’re feeling rushed, doc is not focusing on you and trying to multitask, or doc becomes defensive when you ask challenging questions #patientchat
The Advocate Is In @TheAdvocateIsIn
T5; I wish I could have as a kid in a place where my choices were very limited. My first endocrinologist was a jerk. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@abrewi3010 lol. I would hope it doesn't come to this. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T5: If you don’t feel your doctor is listening to you despite several attempts to make the relationship work or if there is not mutual respect and trust, it’s time to move on. #patientchat https://t.co/HOkKP1nxNB
Melissa VanHouten @melissarvh
A5 When blatant incompetency; unwillingness to collaborate re care; dismissive, disbelieving tone; no attempt to resolve issues #patientchat
Alan Brewington @abrewi3010
RT @RieOfLetters: Y'all hear that? #nurses are AMAZING patient advocates! They also make great friends! #patientchat https://t.co/K1sHUPW…
Patient Empowerment @power4patients
RT @ChronicallyJess: T4: You don’t need permission or even a breakup with your doc to get a second opinion. Make your notes, ask your quest…
Anthony Leon @anthonynotleon
@MightyCasey @patientchat Before I raised hell, I told them I understood why they think that way but asked them to remember, people waking up at 2 am doubled over in pain are not going to look amazing coming into the ED. I never once asked for drugs all I'm asking is for help. #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: A4 talk to an office manager or head nurse. Nurses are amazing patient advocates, especially when docs get to busy with sys…
Christina Lizaso @btrfly12
RT @patientchat: T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @ChronicallyJess: T4: You don’t need permission or even a breakup with your doc to get a second opinion. Make your notes, ask your quest…
ShereeseM, MS/MBA @ShereesePubHlth
@TheAdvocateIsIn Fragile egos, those endocrinologists. #patientchat
The Advocate Is In @TheAdvocateIsIn
A5: Any time you think your proviser isn't helping you achieve/maintain the level of health you want. #patientchat
Victoria Harris @_victoriaharris
RT @BarbyIngle: T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge…
Julie Thoren @JulieThoren
@patientchat Absolutely! #patientchat
Ronny Allan @RonnyAllan1
A4 #patientchat - See this a lot (particularly US) - more difficult with rare and less common conditions ...... can be the nuclear option. https://t.co/FTDayDyATb
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
This! https://t.co/Mc4vclgE8D
Alan Brewington @abrewi3010
A5 when your quality of life is less than your office visit bill. #patientchat
Rie Lopez, MPH @RieOfLetters
T5: The number one reason I have walked away from a health care provider, is I felt they were not listening to me and they had no interest in changing. I don’t have the luxury of wasting time or money with a provider that does not value me as a person. #patientchat
The Advocate Is In @TheAdvocateIsIn
Question for the group: I talk to a class of med students every year. They always ask what would make them good doctors. What would you tell them?#patientchat
Christina Lizaso @btrfly12
RT @power4patients: T5: Several signs it’s time to find a new doc – you’re feeling rushed, doc is not focusing on you and trying to multita…
Mary MACK @MaryOCMack
T5. The dismissive docs won't change, so walk away quickly if it's clear they are not taking you seriously. #patientchat
Annette McKinnon @anetto
T5 had an arrogant surgeon but he was reputed to be the best. Empathy can be more desirable than technical skill. #Patientchat
Anthony Leon @anthonynotleon
@MightyCasey I truly believe if we fix the EMR issue, we can solve a lot of the pain points in healthcare and finally make more meaningful progress. #patientchat
Melissa VanHouten @melissarvh
A5 When you've lost trust or feel there is no attempt to progress/improve, or when there's no working relationship, move on. #patientchat
The Advocate Is In @TheAdvocateIsIn
.@ShereesePubHlth Lol. Yes. Plus he was the only pediatric endo in town. #patientchat
Christina Lizaso @btrfly12
RT @RieOfLetters: T5: The number one reason I have walked away from a health care provider, is I felt they were not listening to me and the…
ShereeseM, MS/MBA @ShereesePubHlth
T5 Not to rag on providers, as burnout is a real issue but when communication is not working, concerns are not addressed, & the provider is not accessible when you need, it's time to seek a new partner in care #patientchat https://t.co/GqJArwQsE5
Mighty Casey Quinlan @MightyCasey
@anthonynotleon @patientchat Yeah. And w/ Twitler's announcement today that opioid crisis will only be met with increased law enforcement, not tx, it'll only get worse. I'm betting cops will be arresting people in EDs w/out any consideration of pain vs. "drug-seeking" #patientchat
Rheumatoid Patient @rheumpatient
RT @Rossco006: Approach it very much like you would a friendship or partnership. Good listening skills and communication with one another a…
Your GPS Doc, LLC @yourgpsdoc
@anthonynotleon @MightyCasey The EMR is the devil! (I’m only half joking.) #patientchat
Melissa VanHouten @melissarvh
@RonnyAllan1 Yes, it is a big concern in my community, too. Not enough specialists & inability to travel to existing. #patientchat
Patient Empowerment @power4patients
@TheAdvocateIsIn When they get to know you as a person before a patient #patientchat
Claire @clairehsnyman
T1: Doctors may have a preconceived idea of what is wrong, what the 'patient story' is and therefore patients feel like they are not being heard #patientchat
Rie Lopez, MPH @RieOfLetters
@TheAdvocateIsIn The most important thing I look for and want in a HCP is that they see ME as a person and not just a mess of numbers to solve. They must have #empathy! #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
@TheAdvocateIsIn Humility and respect for patients, colleagues, and members of the interdisciplinary team. #patientchat
Melissa VanHouten @melissarvh
RT @ShereesePubHlth: T5 Not to rag on providers, as burnout is a real issue but when communication is not working, concerns are not address…
Patient Empowerment @power4patients
T5: Bottom line, it’s time to walk away when your doctor doesn’t let you ask questions freely, participate in decision making, or participate in your care #patientchat
ChronicallyJess @chronicallyjess
T5: I will walk away when I know that I have made every effort, but we still aren’t progressing with my medical goals and I’ve started to lose confidence in our direction and focus. I will sit through long waits and busy offices, but I won’t sacrifice my goals. #patientchat https://t.co/bWFt2yb4he
Enlightening Results @GraceCordovano
A5: It becomes clear very quickly: patient needs, values, and preferences aren't being discussed or considered. Feelings of not being heard, valued, or listened to. Little to no eye contact is often a deal breaker. #patientchat https://t.co/Git8pOKn2L
Heidi Grabenstatter @PatientIntv
T4: Expertise or not, you are more familiar with your health history than any practioner. Find a new a health care provider that listens and proactively involves you in treatment decisions. #patientchat
Liz Kennerley @LifeAccrdingLiz
A3 (a): Make lists before appointments and be as a descriptive as possible. Also do some research and see how far that takes you. #SocialMedia can be HUGE too! Might need to go outside your "comfort zone" with posts, but could be worth it in the long run... #patientchat
Liz Kennerley @LifeAccrdingLiz
A3 (b): My #Mito and #POTS #Facebook communities are invaluable! #patientchat
Alan Brewington @abrewi3010
@TheAdvocateIsIn Have them name one thing that makes their patient smile outside of medical world. #patientchat
Mighty Casey Quinlan @MightyCasey
@anthonynotleon Yup. But duplication of services is a big part of the excess annual $1T that flows thru US healthcare's revenue hose. NO ONE wants to give up Dime One, so we'll be stuck on stupid for a while. Because that $1T/yr = LOBBYING CASH. #patientchat
Rheumatoid Patient @rheumpatient
RT @MaryOCMack: T4. That's a hard one. I had an ordeal of not listening and dismissiveness. I went for other opinions, but they all knew ea…
Your GPS Doc, LLC @yourgpsdoc
@power4patients @TheAdvocateIsIn This sounds good and is a wonderful goal, but not realistic in a 15-minute office visit with an obtrusive and user-UNfriendly EMR. Not making excuses, just stating facts. The system must change. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Ross @Rossco006
@angelee828 @patientchat I’m holding my own right now. I’ve been dealing with a lot lately and the pains been bad. How about yourself? #patientchat
Rheumatoid Patient @rheumpatient
@MaryOCMack 😢#patientchat
Anthony Leon @anthonynotleon
@TheAdvocateIsIn Be their very best and open to change will make them great doctors. Remembering patients as people and not transactions will make them great humans. If you can be the one to combine both, a legacy awaits. #patientchat
ChronicallyJess @chronicallyjess
RT @PatientIntv: T4: Expertise or not, you are more familiar with your health history than any practioner. Find a new a health care provid…
Claire @clairehsnyman
T3: Be very clear about what your aim is for your health & treatment and how you can work together to get there #patientchat
Christina Lizaso @btrfly12
RT @RieOfLetters: @TheAdvocateIsIn The most important thing I look for and want in a HCP is that they see ME as a person and not just a mes…
Martin J @swirlingair
RT @RonnyAllan1: A4 #patientchat the PA has come to my rescue at times and the specialist Nurse on my team "has my 6". Flank them 😊 https:…
Your GPS Doc, LLC @yourgpsdoc
“You are more familiar with your health history than any practitioner.” Patients, be empowered! #patientchat https://t.co/WII1RHjdMC
Annette McKinnon @anetto
RT @nancy_kusmaul: @TheAdvocateIsIn Humility and respect for patients, colleagues, and members of the interdisciplinary team. #patientchat
Martin J @swirlingair
RT @RonnyAllan1: Truth. Working with HCPs can be the optimum solution A3 #patientchat https://t.co/naAz91RSRx
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T5: Bottom line, it’s time to walk away when your doctor doesn’t let you ask questions freely, participate in decision…
Martin J @swirlingair
RT @RonnyAllan1: A4 #patientchat - See this a lot (particularly US) - more difficult with rare and less common conditions ...... can be t…
Mary MACK @MaryOCMack
T5. T5. Research what you have. Learn it well. Family history is very important. If your doc won't consider your family history of sudden death, that's a problem. #patientchat
Rie Lopez, MPH @RieOfLetters
@anetto Absolutely, Annette! I have been in this situation also. Of course we want technical skill, but #empathy counts for so much. I don't think we can overstate this point. #patientchat
Melissa VanHouten @melissarvh
@TheAdvocateIsIn Willingness to try as long as I am willing. Never give up on me, even when you do not know answers. You are sometimes my best hope. Don't take that away, even when there are few treatment options. #patientchat
Rie Lopez, MPH @RieOfLetters
RT @yourgpsdoc: “You are more familiar with your health history than any practitioner.” Patients, be empowered! #patientchat https://t.co/W…
ChronicallyJess @chronicallyjess
@TheAdvocateIsIn @ShereesePubHlth I worry that it is the provider who DO work with us who get burned out. 😢 #patientchat
Anne Polta @annepolta
So glad you asked! 1. Recognize that every pt has their own story. 2. Listen to understand. 3. Cultivate empathy. 4. View the encounter as a 2-way street. #patientchat https://t.co/0sirf0josa
Mighty Casey Quinlan @MightyCasey
A5: I had to shut down my #rads onc during tx; didn't fire her, but would barely speak to her after my concern re lymphedema flare kicked off by #rads tx had her telling me I was "disturbed, needed psych consult"- WTAF?! #patientchat
Annette McKinnon @anetto
@TheAdvocateIsIn I tell them that encouragement from HCPs is a key way to improve patient health. #patientchat
Alan Brewington @abrewi3010
CT healthcare is a little easier when we ask “how might we...?” Instead of “what I want...”. Much like Valentines Day, it’s more fun with everyone included! #patientchat
Nancy Kusmaul, PhD, MSW @nancy_kusmaul
CT: This chat always reminds me of the diversity of perspectives in what patients want. How can one "system" meet all of those needs? Yet the needs are not about advanced care, it is about humanity and being listened to. #patientchat
Patient Chat @patientchat
RT @AnnePolta: So glad you asked! 1. Recognize that every pt has their own story. 2. Listen to understand. 3. Cultivate empathy. 4. View th…
Richard Kreis @kreisr1
RT @patientchat: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientc
Ross @Rossco006
Yes! The physician really needs to understand that we as the patient play a role in the whole process! They need to understand that it’s not a one way conversation! #patientchat https://t.co/AYa7YtQJzo
Richard Kreis @kreisr1
RT @patientchat: T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat
Richard Kreis @kreisr1
RT @patientchat: T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat
Julie Thoren @JulieThoren
@patientchat T4: Find a doctor who will listen. I have paid out of pocket to see doctors who do. It seems those with the time/willingness most often have opted out of insurance. #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: A3 Healthcare providers are human too, easy to forget that they are not the bloated healthcare system. Humans together can…
Richard Kreis @kreisr1
RT @btrfly12: T2: I definitely think it is hard to keep a calm, cool demeanor in the face of things you have a right to be upset about but…
Richard Kreis @kreisr1
RT @power4patients: T5: Bottom line, it’s time to walk away when your doctor doesn’t let you ask questions freely, participate in decision…
Rie Lopez, MPH @RieOfLetters
CT: We seem to be raising a lot of the same points. Clearly, if we are to improve the patient experience, we must work on better communication on both sides of the table. #patientchat
Barby Ingle 📣 @BarbyIngle
CT: Chronic Patients have to be come inspired, empowered, do'ers who dont rely on 1 medical provider but use our team as a tool to get the proper and timely care we need. #patientchat #BreakthroughCrew #PatientsHavePower #EmpoweredPatient #CheerleaderofHOPE #teamapproach https://t.co/iQzrsFl0xz
Your GPS Doc, LLC @yourgpsdoc
RT @BarbyIngle: T4: I stop the conversation and say 'what magic word am I missing that you need to hear so you can understand the challenge…
Barby Ingle 📣 @BarbyIngle
RT @Rossco006: Yes! The physician really needs to understand that we as the patient play a role in the whole process! They need to understa…
ShereeseM, MS/MBA @ShereesePubHlth
@TheAdvocateIsIn There are many issues contributing to physician burnout. My point is, I believe the majority of physicians would prefer to collaborate w/ Pts & find the time to spend w/ them. We shouldn't see providers as adversaries, unless they prove to be. #patientchat
Julie Thoren @JulieThoren
RT @AnnePolta: So glad you asked! 1. Recognize that every pt has their own story. 2. Listen to understand. 3. Cultivate empathy. 4. View th…
Alan Brewington @abrewi3010
Though #medx #hcsm #creakychats #rheum #chronicpain #arthritis people? #patientchat https://t.co/5xLK8PLV6i
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: CT: Chronic Patients have to be come inspired, empowered, do'ers who dont rely on 1 medical provider but use our team as a…
Rheumatoid Patient @rheumpatient
RT @anetto: T5 had an arrogant surgeon but he was reputed to be the best. Empathy can be more desirable than technical skill. #Patientchat
Melissa VanHouten @melissarvh
RT @BarbyIngle: CT: Chronic Patients have to be come inspired, empowered, do'ers who dont rely on 1 medical provider but use our team as a…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: CT: Chronic Patients have to be come inspired, empowered, do'ers who dont rely on 1 medical provider but use our team as a…
Alan Brewington @abrewi3010
RT @RieOfLetters: CT: We seem to be raising a lot of the same points. Clearly, if we are to improve the patient experience, we must work o…
ShereeseM, MS/MBA @ShereesePubHlth
@ChronicallyJess @TheAdvocateIsIn I'd agree wholeheartedly #patientchat
Ronny Allan @RonnyAllan1
#patientchat A5. Tough call. The grass isn't always greener etc. https://t.co/NJp6Y1gnEr
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
International Pain Foundation® @powerofpain
RT @BarbyIngle: CT: Chronic Patients have to be come inspired, empowered, do'ers who dont rely on 1 medical provider but use our team as a…
Claire @clairehsnyman
T5: When a second/third opinion is needed, you feel like you are not being heard even after trying different approaches, when you are not being offered additional support as a patient/caregiver - it's a relationship - it can be hard to know when to 'breakup'. #patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
Martin J @swirlingair
RT @RonnyAllan1: #patientchat A5. Tough call. The grass isn't always greener etc. https://t.co/NJp6Y1gnEr
Heidi Grabenstatter @PatientIntv
@yourgpsdoc I have lived every note in that chart (or what they are privy to), while they skimmed it (maybe). . . an expert by default. #patientchat
Katie @katie5280
@patientchat T3: Having a list of questions can help. That way your provider will need to address those items. #patientchat
Angela Cohen @angelee828
@patientchat T2: Multiple times. I try to be as respectful as possible while doing it. Everything is a learning experience. For me and them. #patientchat
💖💄 Aoife ♿💜 @aoiferocksitout
@patientchat When they don't listen,they dismiss you, deny you care, gaslight you because they can't tell you they don't know what is up with you. #patientchat
Liz Kennerley @LifeAccrdingLiz
@melissarvh @patientchat I also request my PCP's very last slot of the day! We have more time to discuss without jeopardizing anyone's patience. More likely to make progress... #patientchat
Christina Lizaso @btrfly12
@ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: https://t.co/OLldceyEA0 #patientchat
Debra Gottsleben @gottsled
RT @MightyCasey: A1: Severe lack of comms-skill training in #meded too, which makes listening ... hard. Training seems to focus on creating…
Mary MACK @MaryOCMack
CT Find the doctors who will listen and care about you. The great ones will be fine with you advocating and fine with you disagreeing. The good communicators like that. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Glad I stopped by. have a great weekend everyone #patientchat https://t.co/u8iyIIdJA1
Melissa VanHouten @melissarvh
Thank you so much for hosting another engaging and informative chat! Looking forward to the next! #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: CT healthcare is a little easier when we ask “how might we...?” Instead of “what I want...”. Much like Valentines Day, it’s…
Annette McKinnon @anetto
RT @btrfly12: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: https://t.…
Patient Chat @patientchat
Mark you calendars for a very special #patientchat Friday, Feb. 23rd at 10amPT | 1pmET as we discuss how to include patients in design
Christina Lizaso @btrfly12
RT @nancy_kusmaul: CT: This chat always reminds me of the diversity of perspectives in what patients want. How can one "system" meet all o…
ChronicallyJess @chronicallyjess
CT: When we talk about patient needs/ways to advocate for ourselves, we must remember that the ultimate goal is a TEAM approach to care, which requires more than just doing what the patient wants, it also involves mutual respect, care, listening, and open mindedness #patientchat https://t.co/y8bu9qmVZv
Rie Lopez, MPH @RieOfLetters
@EmMorgan27 Emily, I suspect that we (at least occasionally) share a brain. You are just far more eloquent! #patientchat
Rie Lopez, MPH @RieOfLetters
RT @patientchat: Mark you calendars for a very special #patientchat Friday, Feb. 23rd at 10amPT | 1pmET as we discuss how to include patien…
Your GPS Doc, LLC @yourgpsdoc
CT: Patients are people, not lab and X-ray results. Doctors are people, not cold-hearted monsters. We must work together within the confines of a broken system. The patient’s concerns need to be at the center of every encounter. #patientchat https://t.co/F4nSvNwaRG
Ross @Rossco006
A5: When you have done everything in your power to work with the healthcare provider and they still don’t listen. #patientchat https://t.co/DAMA8zsgTI
Mighty Casey Quinlan @MightyCasey
RT @btrfly12: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: https://t.…
Anne Polta @annepolta
@ShereesePubHlth @TheAdvocateIsIn Maybe it's my Midwestern upbringing, but I always try to approach this as a partnership and assume the provider sincerely wants to help. If the evidence consistently shows otherwise, then it's time to bail. #patientchat
Patient Chat @patientchat
RT @ChronicallyJess: CT: When we talk about patient needs/ways to advocate for ourselves, we must remember that the ultimate goal is a TEAM…
The Advocate Is In @TheAdvocateIsIn
@ShereesePubHlth Do you think a move toward value-based care will help?#patientchat
Ross @Rossco006
RT @BarbyIngle: T5. I have fired many providers. Let them go if the provider doesn't understand your disease and not willing to learn, if t…
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Christina Lizaso @btrfly12
RT @PatientIntv: @yourgpsdoc I have lived every note in that chart (or what they are privy to), while they skimmed it (maybe). . . an exper…
Mighty Casey Quinlan @MightyCasey
RT @ChronicallyJess: CT: When we talk about patient needs/ways to advocate for ourselves, we must remember that the ultimate goal is a TEAM…
Ross @Rossco006
RT @ChronicallyJess: T4: You don’t need permission or even a breakup with your doc to get a second opinion. Make your notes, ask your quest…
Your GPS Doc, LLC @yourgpsdoc
Thank you @patientchat for another wonderful discussion! #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Katie @katie5280
@patientchat T4: Sometimes it's as simple as stating "I don't think you're listening." If that doesn't work, you can always end the appointment & choose another provider. Inconveient, but it sends a message. #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: Mark you calendars for a very special #patientchat Friday, Feb. 23rd at 10amPT | 1pmET as we discuss how to include patien…
Christina Lizaso @btrfly12
RT @patientchat: Mark you calendars for a very special #patientchat Friday, Feb. 23rd at 10amPT | 1pmET as we discuss how to include patien…
Your GPS Doc, LLC @yourgpsdoc
Great tip! #patientchat https://t.co/1QAl7iYn3n
Christina Lizaso @btrfly12
RT @ChronicallyJess: CT: When we talk about patient needs/ways to advocate for ourselves, we must remember that the ultimate goal is a TEAM…
Anthony Leon @anthonynotleon
@ShereesePubHlth @TheAdvocateIsIn What patients unfortunately don't understand is that the systems that were forced onto the docs (EHR w a dash of MU) are well intentioned but completely inefficent. 50% of doc time is in front of a screen now, they didn't want "care" to be like this (Rads excluded) #patientchat
Ross @Rossco006
It’s been fast! I’ll have to go back through and touch base with everyone later! #Patientchat https://t.co/rUicOJQcak
Angela Cohen @angelee828
@Rossco006 @patientchat About the same. Fatigue has been bad for me too. Hopefully things will improve for both of us soon! #patientchat
Mighty Casey Quinlan @MightyCasey
CT: Have a goal for your time in-clinic f2f with your team. In ED situations, try to have someone w/you who can help you communicate. Keep a hx doc in your phone. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@TheAdvocateIsIn This has been a tricky area for me. While paying providers based on improved outcomes would signal a win for patients, I'm not one who believes in any incentivized care models, as historically/statistically they do not work long-term. #patientchat
Patient Chat @patientchat
@yourgpsdoc Glad you could join in! #patientchat
Ross @Rossco006
This! #patientchat https://t.co/rY80eE1K4b
ChronicallyJess @chronicallyjess
@patientchat Thanks for a great chat! I swear that I refine my thoughts and grow in my opinion of the ways to improve patient/medical team relationships every time this topic is brought up! 😊 #patientchat
Liz Kennerley @LifeAccrdingLiz
A4: Keep at it. Especially for longer-term issues... Also take note of what helps, frequency, timing, etc..Most helpful for intermittent issues, such as dizziness, headaches, pain, nausea... #patientchat
Ross @Rossco006
@RieOfLetters Communication is the key! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @PatientIntv: @yourgpsdoc I have lived every note in that chart (or what they are privy to), while they skimmed it (maybe). . . an exper…
Christina Lizaso @btrfly12
RT @MightyCasey: CT: Have a goal for your time in-clinic f2f with your team. In ED situations, try to have someone w/you who can help you c…
Heidi Grabenstatter @PatientIntv
CT: The empowered patients make their voices heard. How do we encourage the timid, overwhelmed patients that don't realize they don't need to settle for subpar care? #patientchat
Katie @katie5280
@patientchat T5: If you don't feel like your healthcare concern isn't being properly managed for reasons like being Rx'd meds that are out of your budget & not being heard in general, time to move on. #patientchat
Patient Chat @patientchat
Thank you for joining the #patientchat conversation today and sharing your insights! We hope to see you again Feb. 23rd! https://t.co/23sLPUuAkN
The Advocate Is In @TheAdvocateIsIn
@ShereesePubHlth Good to get your POV. I have heard a lot about it, but it seems sometimes like certain parties view it as a panacea. #patientchat
Ross @Rossco006
@patientchat Have to run everyone I have an appointment in 10min! Can I get there!!!!! #patientchat
Angela Cohen @angelee828
@patientchat T3: Come as prepared as possible to appts, ask them to clarify anything you need, go over goals/next steps at end of appt to make sure you’re on the same page. #patientchat
Ross @Rossco006
@angelee828 @patientchat Yes hopefully it will! #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@TheAdvocateIsIn Be willing to say you don’t have the answer rather than blame the patient, try to assign a psychological diagnosis, etc. Consider hard cases your greatest opportunity to learn and be become better doctors. #patientchat
Katie @katie5280
@TheAdvocateIsIn Be truly ready to be a partner in a patient's care, listen, follow up, be open to new treatments & don't be afraid to say "I don't know" but willing to find out an answer if needed. #patientchat
Susan Schulz @suebarryschulz
CT: I am going to make sure to re-read this chat right before my next Dr appointment. Inspired! #patientchat
Angela Cohen @angelee828
@patientchat T5: Trust and communication are big factors for me. If I’m not being heard and I can’t trust the information im being given, its time for me to find a new provider. I’ve had to do this in the past and I am starting to be in that situation unfortunately. #patientchat
Liz Kennerley @LifeAccrdingLiz
A5 (a): Alas, yes... Especially, when they don't dig further beyond blaming meds I've been on for years and the new symptom began just a few months ago. Or, when the same solution is proposed yet again despite following them already. Most frustrating... #patientchat
Liz Kennerley @LifeAccrdingLiz
A5 (b): ...when it's a patient portal and the provider doesn't seem very interested in more of a conversational dialogue to help sort things out. Especially, when you aren't their only #POTS, #Mito #RareDisease patient #patientchat
The Advocate Is In @TheAdvocateIsIn
Thanks for all your great answers to my question! I'll definitely let the new class know. #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌕 @GinaMcGalliard
@patientchat My cousin says that she has a rule that if a doctor wants his questions answered he has to make eye contact. If he just looks at the computer she ignores him and then when he asks if he heard she’s like “Oh I’m sorry, I thought we were having a conversation.” #patientchat
#patientchat content from Twitter.