#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited 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: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/GjfD3hleMf |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 interest to empowered patients. |
| Christina Lizaso @btrfly12 RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: 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 (she/her) @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 (she/her) @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 (she/her) @RieOfLetters @Rossco006 @patientchat Hi Ross!! Happy Friday! :-) #patientchat |
 | Metis Advocacy @MetisAdvocacy 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @lisadbudzinski How was your week? #patientchat https://t.co/MIZ13Lf4ga |
| Lisa Davis Budzinski @lisadbudzinski @RieOfLetters Hi Rie!! #patientchat https://t.co/QKnhF1SCHk |
| 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 (she/her) @RieOfLetters @abrewi3010 #patientchat https://t.co/ZYY0fMAo9J |
| Lisa Davis Budzinski @lisadbudzinski @HealthSparq @annerskg Hi Anna! #patientchat https://t.co/AaqhWcJOAM |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey HAAAAIIII! Casey Q here, the Mighty Mouth, all about #healthliteracy + #opendata + #openscience + #rightcare. Member of #bcsm too. #patientchat |
 | Patient Empowerment Network @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 (she/her) @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T1: 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 |
| 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. You can learn more here: https://t.co/F8vP463ugn #patientchat |
| Metis Advocacy @MetisAdvocacy T1: doctors are trained to be confident and alpha's. #patientchat |
 | Barby Ingle Official @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: 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 |
| Alan Brewington @abrewi3010 @RieOfLetters #patientchat https://t.co/yrY1vnG1Lk |
 | Your GPS Doc, LLC @yourgpsdoc Hi everyone. I’m Nicole Rochester, physician, caregiver, patient advocate, Founder/CEO of #yourgpsdoc #patientchat |
 | Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T1: 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 #patientchat |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T1: 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 |
| Metis Advocacy @MetisAdvocacy T1: and often doctors don't take the time to explain terminology. it's intimidating to ask a ton of questions. #patientchat |
| Barby Ingle Official @BarbyIngle RT @BarbyIngle: T1: 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 |
| Rie Lopez, MPH (she/her) @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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® @iPainOfficial RT @BarbyIngle: T1: 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 |
| Patient Empowerment Network @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 #HeathenSlut Casey🇺🇦🌟 @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 |
| Rie Lopez, MPH (she/her) @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 |
| Melissa VanHouten @melissarvh @power4patients And sometimes patients ARE rushed - not simply a feeling. #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 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 |
| 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/mLJj6qKKbb |
| Metis Advocacy @MetisAdvocacy 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 #HeathenSlut Casey🇺🇦🌟 @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 |
| 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 life. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 #HeathenSlut Casey🇺🇦🌟 @MightyCasey @TheAdvocateIsIn HI!! Too long no see IRL. Hope to fix that soon =) #patientchat |
| Rie Lopez, MPH (she/her) @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 |
| 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: T1: 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 |
| 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: |
 | 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 Medicine @S4PM RT @MightyCasey: A1: 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 |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/GjfD3hleMf #patientchat |
| Melissa VanHouten @melissarvh RT @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 |
| Christina Lizaso @btrfly12 RT @rheumpatient: T1: |
| 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 Official @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 |
| Metis Advocacy @MetisAdvocacy 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® @iPainOfficial RT @BarbyIngle: T2: 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 |
| 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 Network @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: @patientchat T1: Could be due to communication issues. If a provider appears to be rushed, a patient may not be as forthcoming. #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. #patientchat https://t.co/H76JiGSdNK |
| Rie Lopez, MPH (she/her) @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 Foundation Research Projects @iPain_Research RT @BarbyIngle: T2: 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 |
 | Susan Barry-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 my eScripts 😳 He was in utter shock reading my notes of having to call in & plea for my meds #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T2: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientchat |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T2: 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 |
| 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: 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 |
 | Liz Szabo @LizSzabo RT @patientchat: T2: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientchat |
| Christina Lizaso @btrfly12 RT @katie5280: @patientchat T1: @patientchat T1: Could be due to communication issues. If a provider appears to be rushed, a patient may not be as forthcoming. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @RieOfLetters Exactly✨ Not to mention that labs use different ranges 😳 #patientchat |
| Rie Lopez, MPH (she/her) @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 |
| 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 |
| Katie @katie5280 @patientchat T2: Yes! I have said things like "you're not listening to me" #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 |
| Ross @Rossco006 @RieOfLetters Unfortunately I’ve had this happen Rie! #patientchat |
| 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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: @patientchat T2: Yes! I have said things like "you're not listening to me" #patientchat |
| Christina Lizaso @btrfly12 RT @ChronicallyJess: T1: 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 |
| Your GPS Doc, LLC @yourgpsdoc This is a great way to get your doctor’s attention. #patientchat https://t.co/uzdFaIi8qN |
| Patient Empowerment Network @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, MPH, CHES @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 |
| Annette McKinnon @anetto T1 It’s often hard to be reassessed when you have a chronic disease with few changes #patientchat |
| Patient Empowerment Network @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 (she/her) @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T3: T3: What are your tips on how to talk to your health care provider to ensure you are being heard? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 Official @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 #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ShereesePubHlth Tru dat. On blast. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @power4patients: T2: T2: We love sharing stories of empowerment. If you would like to share yours, please email kara@powerfulpatients.org #patientchat |
| Patient Empowerment Network @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 Your Doctor” https://t.co/hwoEGypi6s #patientchat https://t.co/j5bH3p0eVb |
| 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® @iPainOfficial RT @BarbyIngle: T3: 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 |
| Ross @Rossco006 RT @BarbyIngle: T2: 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 |
| Alan Brewington @abrewi3010 @RieOfLetters @power4patients Thank you 🙏 My body & money, prove your charges! #patientchat |
| Rie Lopez, MPH (she/her) @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 how it was affecting my everyday ability to function... and he finally heard me. #patientchat |
| HealthSparq @HealthSparq RT @patientchat: T3: 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: 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 #HeathenSlut Casey🇺🇦🌟 @MightyCasey @BarbyIngle I do much the same thing via export PDF from MS HealthVault. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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, RPIC @KenRayTaylor RT @BarbyIngle: T3: 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 |
| Patient Chat @patientchat RT @RieOfLetters: T3: 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 |
| 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: 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 |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T3: 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 |
| 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 (she/her) #COVIDIsntOver #PBMTReform @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 (she/her) #COVIDIsntOver #PBMTReform @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/that #patientchat |
 | 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 (she/her) @RieOfLetters RT @yourgpsdoc: T3: 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
 | Dr. Nancy Kusmaul @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: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 specific studies and/or cases that might reinforce your POV on your issue. #patientchat |
| 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 Network @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 |
| Dr. Nancy Kusmaul @nancy_kusmaul @ChronicallyJess @NotesOnNursing talks about this very eloquently when she tells her story about living with Stage IV cancer. #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 |
| 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 specific studies and/or cases that might reinforce your POV on your issue. #patientchat |
| Rie Lopez, MPH (she/her) @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 person is not what's best for another. #patientchat |
| 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: 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 provider in previous visits. #patientchat |
| 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 |
 | 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 |
| Dr. Nancy Kusmaul @nancy_kusmaul Hi Everyone, Nancy here, dropping in late. I'm a social worker and researcher working on person-centered care. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/GjfD3hleMf #patientchat |
 | 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 How to Advocate for Your Loved One With Dementia Via @yourgpsdoc https://t.co/bfFRLdvgH5 #patientchat |
| 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 |
| 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 solve system problems #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.co/GjrpRQ4LLB |
| 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 |
| 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 you make 'em lean in to hear you ... SUCCESS. #patientchat |
| 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 person is not what's best for another. #patientchat |
| Christina Lizaso @btrfly12 RT @ShereesePubHlth: @melissarvh So true. 65% of readmitted patients admitted to not understanding what they were being told by their provider in previous visits. #patientchat |
| 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 (she/her) @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 |
| 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 |
| 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 |
| Patient Empowerment Network @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: @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 |
| Anne Polta @AnnePolta RT @JulieThoren: @patientchat T1: @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 |
| 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: T2: Have you ever had to advocate for yourself when felt you weren’t being heard or something didn’t feel right? #patientchat |
| Rie Lopez, MPH (she/her) @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, just in case we aren't hearing everything ourselves. #patientchat https://t.co/qqyuZ1BijJ |
| Barby Ingle Official @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 |
| Dr. Nancy Kusmaul @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: 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 |
| 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 (she/her) @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 time. #Patientchat |
| 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 Foundation Research Projects @iPain_Research RT @BarbyIngle: T4: 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 |
| 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 specific studies and/or cases that might reinforce your POV on your issue. #patientchat |
| Ross @Rossco006 Great idea! Might just have to try this! #patientchat https://t.co/Is3pTkrO9Y |
| Christina Lizaso @btrfly12 RT @patientchat: T4: T4: If you feel like your health care provider isn’t listening to you, what can you do? #patientchat |
| Dr. Nancy Kusmaul @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 #HeathenSlut Casey🇺🇦🌟 @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, RPIC @KenRayTaylor RT @BarbyIngle: T4: 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 |
 | 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 Network @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® @iPainOfficial RT @BarbyIngle: T4: 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 |
| HealthSparq @HealthSparq Yes! So well said, Alan! #Patientchat #WTFix https://t.co/7H4hPl6biN |
| Annette McKinnon @anetto RT @PatientIntv: T2: 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 |
| Ross @Rossco006 @angelee828 @patientchat Hi Angela! #patientchat |
| 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 (she/her) @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 Official @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| Annette McKinnon @anetto RT @yourgpsdoc: T4: 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 |
| Christina Lizaso @btrfly12 RT @PatientIntv: T2: 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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: 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 |
| Anne Polta @AnnePolta RT @RieOfLetters: T4: 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @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 |
| 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. 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 |
| 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 value and providers need to take a collaborative, wholeness approach to your care. #patientchat https://t.co/9IN4YNMK4P |
| Rie Lopez, MPH (she/her) @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: 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 |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/GjfD3hleMf #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 |
| 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 solve system problems #patientchat |
| 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 Official @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: T4: https://t.co/DJSaH7IV23 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T5: 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® @iPainOfficial 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 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 |
| Rie Lopez, MPH (she/her) @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, RPIC @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 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 |
| 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 (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz #patientchat |
| HealthSparq @HealthSparq RT @patientchat: T5: T5: When is it time to walk away and find a new health care provider? Have you ever had to do this? #patientchat |
| iPain Foundation Research Projects @iPain_Research 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 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 |
| Patient Empowerment Network @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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/K1sHUPWLwI |
| Patient Empowerment Network @power4patients RT @ChronicallyJess: T4: 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 |
| 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 system nonsense. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T5: 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: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 MSN RN @_victoriaharris RT @BarbyIngle: T4: 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 |
| Julie Thoren @JulieThoren @patientchat Absolutely! #patientchat |
| Dr. Nancy Kusmaul @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 (she/her) @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: 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 |
| 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 |
| 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 |
| 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 |
| 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: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 #HeathenSlut Casey🇺🇦🌟 @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 |
| 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 Network @power4patients @TheAdvocateIsIn When they get to know you as a person before a patient #patientchat |
 | Claire Snyman @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 (she/her) @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 |
| Dr. Nancy Kusmaul @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 addressed, & the provider is not accessible when you need, it's time to seek a new partner in care #patientchat https://t.co/GqJArwQsE5 |
| Patient Empowerment Network @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 (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A3 (b): My #Mito and #POTS #Facebook communities are invaluable! #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @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 |
| Alan Brewington @abrewi3010 @TheAdvocateIsIn Have them name one thing that makes their patient smile outside of medical world. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
| 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 |
| 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: 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 |
| Claire Snyman @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 mess of numbers to solve. They must have #empathy! #patientchat |
| 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 |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: T5: 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 |
| 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 (she/her) @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 (she/her) @RieOfLetters RT @yourgpsdoc: “You are more familiar with your health history than any practitioner.” Patients, be empowered! #patientchat https://t.co/WII1RHjdMC |
| 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 #HeathenSlut Casey🇺🇦🌟 @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 |
| Dr. Nancy Kusmaul @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 the encounter as a 2-way street. #patientchat https://t.co/0sirf0josa |
 | Richard Kreis @kreisr1 RT @patientchat: T2: 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 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: 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: 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 solve system problems #patientchat |
| Richard Kreis @kreisr1 RT @btrfly12: T2: 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 |
| Richard Kreis @kreisr1 RT @power4patients: T5: 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 |
| Rie Lopez, MPH (she/her) @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 Official @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: 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 |
| Barby Ingle Official @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 understand that it’s not a one way conversation! #patientchat https://t.co/AYa7YtQJzo |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 the encounter as a 2-way street. #patientchat https://t.co/0sirf0josa |
| Alan Brewington @abrewi3010 Though #medx #hcsm #creakychats #rheum #chronicpain #arthritis people? #patientchat https://t.co/5xLK8PLV6i |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: CT: 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 |
| Melissa VanHouten @melissarvh RT @BarbyIngle: CT: 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 |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: CT: 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 |
| Alan Brewington @abrewi3010 RT @RieOfLetters: CT: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @ChronicallyJess @TheAdvocateIsIn I'd agree wholeheartedly #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: CT: 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 |
| Claire Snyman @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 |
| 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 (she/her) #COVIDIsntOver #PBMTReform @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: 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 |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 more fun with everyone included! #patientchat |
| Annette McKinnon @anetto RT @btrfly12: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: https://t.co/OLldceyEA0 #patientchat |
| 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: 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 |
| 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 (she/her) @RieOfLetters @EmMorgan27 Emily, I suspect that we (at least occasionally) share a brain. You are just far more eloquent! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @patientchat: Mark you calendars for a very special #patientchat Friday, Feb. 23rd at 10amPT | 1pmET as we discuss how to include patients in design |
| 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 #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: @ASCO issued guidelines for doctor-patient communication last fall - good framework - now need training to spread: https://t.co/OLldceyEA0 #patientchat |
| 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: 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 |
| 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 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 |
| 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 expert by default. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ChronicallyJess: CT: 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 |
| Ross @Rossco006 RT @ChronicallyJess: T4: 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 |
| 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 patients in design |
| 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 patients in design |
| Your GPS Doc, LLC @yourgpsdoc Great tip! #patientchat https://t.co/1QAl7iYn3n |
| Christina Lizaso @btrfly12 RT @ChronicallyJess: CT: 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 |
| 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 #HeathenSlut Casey🇺🇦🌟 @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @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 (she/her) #COVIDIsntOver #PBMTReform @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 expert by default. #patientchat |
| Christina Lizaso @btrfly12 RT @MightyCasey: CT: 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 |
| 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 |
| 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 Barry-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 (she/her) #COVIDIsntOver #PBMTReform @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 (she/her) #COVIDIsntOver #PBMTReform @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 |
#patientchat content from Twitter.