#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 The Empowered #patientchat is a project of @power4patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Hi #patientchat’ers. I’m Kara from @power4patients and I’ll be moderating today’s chat |
| Patient Chat @patientchat Please continue with intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd David, precision-medicine methodologist with special interest in #DoseIndividualization. Joining to listen today #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/TTGM261YW9 https://t.co/0FV4QCPr2R |
| Patient Chat @patientchat Today's chat is solely informational & not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! My name is Seth and I am the Patient Engagement Manager at @teaminspire and co-founder of @_OurOdyssey_. Always excited to be part of these important discussions! #patientchat |
 | Our Odyssey @_OurOdyssey_ RT @Srotberg15: Hi everyone! My name is Seth and I am the Patient Engagement Manager at @teaminspire and co-founder of @_OurOdyssey_. Always excited to be part of these important discussions! #patientchat |
| Patient Chat @patientchat @TracyBNutrimom @power4patients Hello! #patientchat https://t.co/DX4tVmG0sv |
| Patient Chat @patientchat Today's #patientchat topic is What Does Patient-Centric Care Look Like For You? https://t.co/TTGM261YW9 https://t.co/U3fRhBeFpe |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat Time to start our topic questions. Here comes T1: #patientchat |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @Srotberg15 @teaminspire @_OurOdyssey_ I love your Instagram feed! Good to see you here. #patientchat |
| Patient Chat @patientchat T1: What does care look like to you when it is patient-centered? (for appointments, results, treatment, medical records, etc.) #patientchat https://t.co/96KMoBzUYO |
 | Heather McCullen @H_SalemOaks Hi #patientchat, Heather Joining from outside of Ann Arbor. Taking a break from working on @SalemOaks webpage. |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What does care look like to you when it is patient-centered? (for appointments, results, treatment, medical records, etc.) #patientchat https://t.co/96KMoBzUYO |
 | PROS Foundation @PROS_Foundation Hi All, Happy to be joining #patientchat from sunny San Diego. |
| Seth Rotberg @Srotberg15 RT @patientchat: T1: T1: What does care look like to you when it is patient-centered? (for appointments, results, treatment, medical records, etc.) #patientchat https://t.co/96KMoBzUYO |
 | Melissa VanHouten @melissarvh Viewing me as a whole person w/physical, emotional, mental, & spiritual needs, who is intelligent enough to make my own treatment choices, given appropriate info, & who has specific needs that do not necessarily mesh w/textbook cases or those of other patients. #PatientChat |
| Patient Empowerment Network @power4patients A1: Check out "A Person Centered Approach to the Care of Chronic Illness" by @JBBC https://t.co/KsLpOzK0Tp #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A1: I think we need to focus more on patient activism by providing patients the tools & skills to be engaged and prepared. That would include setting expectations for appointments, keeping track of records, family history, etc. - for starters. #patientchat |
| Seth Rotberg @Srotberg15 T1 patient-centered care needs to start with listening to the patients’ needs and not rushing through the appointment. I saw that the avg appointment lasts less than 12 minutes which is not enough time to get the proper care. #patientchat |
 | JB Ashtin @JBAshtin RT @cvhconsulting: @patientchat A1: @patientchat A1: I think we need to focus more on patient activism by providing patients the tools & skills to be engaged and prepared. That would include setting expectations for appointments, keeping track of records, family history, etc. - for starters. #patientchat |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. Squeezing this in between several other projects. #patientchat |
| JB Ashtin @JBAshtin RT @power4patients: A1: A1: Check out "A Person Centered Approach to the Care of Chronic Illness" by @JBBC https://t.co/KsLpOzK0Tp #patientchat |
| Seth Rotberg @Srotberg15 @PROS_Foundation Glad it’s sunny over there. This is how I feel in Boston. #patientchat https://t.co/GiW84FecJU |
| Patient Chat @patientchat @Zebrafishspoony For everyone to see your replies, please include #patientchat in all your tweets :) |
| Melissa VanHouten @melissarvh RT @power4patients: A1: A1: Check out "A Person Centered Approach to the Care of Chronic Illness" by @JBBC https://t.co/KsLpOzK0Tp #patientchat |
| Heather McCullen @H_SalemOaks T1: Treating a patient like a person and active participant in their own health decisions ... not like a car at the mechanic. #patientchat |
| Patient Chat @patientchat #patientchat |
| Patient Chat @patientchat #patientchat |
| Seth Rotberg @Srotberg15 RT @H_SalemOaks: T1: T1: Treating a patient like a person and active participant in their own health decisions ... not like a car at the mechanic. #patientchat |
 | Ody @OdyO11 @patientchat T1: Having my autonomy and my needs respected. Being believed. Being seen as an expert in my own experiences. Being allowed and enabled to make decisions. Being allowed to access and to ask for corrections of medical reports and to decide who will see them. #patientchat |
| Patient Chat @patientchat @FieryFrancine Hi Francine! Don't forget to include the hashtag #patientchat in all your replies so everyone can see your responses! |
| Patient Chat @patientchat T2 coming up… #patientchat |
| PROS Foundation @PROS_Foundation @patientchat T1: We feel it’s absolutely needed for the physician to ask if the patient’s needs/concerns and questions are being met and answered. #patientchat |
| Our Odyssey @_OurOdyssey_ RT @patientchat: T1: T1: What does care look like to you when it is patient-centered? (for appointments, results, treatment, medical records, etc.) #patientchat https://t.co/96KMoBzUYO |
| Kevin Freiert @K_SalemOaks T!: A very informative article from a doc in this article. https://t.co/ecbelRZIbf #patientchat #S4PM #pinksocks #AskPatients |
| Ody @OdyO11 RT @Srotberg15: T1 patient-centered care needs to start with listening to the patients’ needs and not rushing through the appointment. I saw that the avg appointment lasts less than 12 minutes which is not enough time to get the proper care. #patientchat |
| Heather McCullen @H_SalemOaks RT @OdyO11: @patientchat T1: @patientchat T1: Having my autonomy and my needs respected. Being believed. Being seen as an expert in my own experiences. Being allowed and enabled to make decisions. Being allowed to access and to ask for corrections of medical reports and to decide who will see them. #patientchat |
| JB Ashtin @JBAshtin Patient and physician communication is a crucial aspect of determining a treatment plan. #patientchat |
| Patient Chat @patientchat T2: Have you seen these concepts put into practice? Examples? What has worked well? #patientchat https://t.co/t1q491l0d8 |
| Ody @OdyO11 RT @melissarvh: Viewing me as a whole person w/physical, emotional, mental, & spiritual needs, who is intelligent enough to make my own treatment choices, given appropriate info, & who has specific needs that do not necessarily mesh w/textbook cases or those of other patients. #PatientChat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @davidcnorrismd @patientchat Also: #patientchat https://t.co/26ZIcnOiJz |
| Ody @OdyO11 @melissarvh Yes! Being taken seriously, even if I am an outlier. Not to be blindly pressed into diagnostic and treatment algorithms that don't fit my case. #patientchat |
| Patient Empowerment Network @power4patients @cvhconsulting @patientchat Agreed! We created a set of downloadable guides to help with exactly that in our Newly Diagnosed Toolkits. Here's a link to the AML one which is easily transferrable to any #cancer or chronic illness: https://t.co/jFAcMC3Pe7 #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @TracyBNutrimom #patientchat https://t.co/T78ytSNzdP |
| Patient Empowerment Network @power4patients RT @cvhconsulting: @davidcnorrismd @patientchat Also: @davidcnorrismd @patientchat Also: #patientchat https://t.co/26ZIcnOiJz |
| JB Ashtin @JBAshtin RT @power4patients: @cvhconsulting @patientchat Agreed! We created a set of downloadable guides to help with exactly that in our Newly Diagnosed Toolkits. Here's a link to the AML one which is easily transferrable to any #cancer or chronic illness: https://t.co/jFAcMC3Pe7 #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Have you seen these concepts put into practice? Examples? What has worked well? #patientchat https://t.co/t1q491l0d8 |
| Patient Empowerment Network @power4patients RT @JBAshtin: Patient and physician communication is a crucial aspect of determining a treatment plan. #patientchat |
| Melissa VanHouten @melissarvh GI & PA practice this every visit. They don't make me feel rushed, they hear my concerns, & treat me w/respect. Ex: PA said, "Now, I'm going 2 mention X drug, & you're going 2 look it up & think I've lost my mind, but hear me out, research it, & then decide." Perfect #PatientChat |
| Ody @OdyO11 @patientchat T2: As a patient with complex, little known & incompletely researched disorders, it makes a huge difference whether I find doctors who think scientifically and don't adhere blindly to algorithms. Who are humble and curious. Great TED talk: https://t.co/X0vnSqo5xW #patientchat |
| JB Ashtin @JBAshtin RT @melissarvh: GI & PA practice this every visit. They don't make me feel rushed, they hear my concerns, & treat me w/respect. Ex: GI & PA practice this every visit. They don't make me feel rushed, they hear my concerns, & treat me w/respect. Ex: PA said, "Now, I'm going 2 mention X drug, & you're going 2 look it up & think I've lost my mind, but hear me out, research it, & then decide." Perfect #PatientChat |
| Kevin Freiert @K_SalemOaks T2: My dentist does a great job of this. They clearly have a record of previous discussions. Every time I go in they ask previous visits/complaints, changes in my diet or other health, and even travel plans and hobbies. My doc, not so much. #patientchat #S4PM #pinksocks |
| Patient Empowerment Network @power4patients RT @OdyO11: @patientchat T2: @patientchat T2: As a patient with complex, little known & incompletely researched disorders, it makes a huge difference whether I find doctors who think scientifically and don't adhere blindly to algorithms. Who are humble and curious. Great TED talk: https://t.co/X0vnSqo5xW #patientchat |
| Patient Chat @patientchat T3 coming up… #patientchat |
| Seth Rotberg @Srotberg15 RT @OdyO11: @patientchat T2: @patientchat T2: As a patient with complex, little known & incompletely researched disorders, it makes a huge difference whether I find doctors who think scientifically and don't adhere blindly to algorithms. Who are humble and curious. Great TED talk: https://t.co/X0vnSqo5xW #patientchat |
| Patient Chat @patientchat T3: Would you consider your doctor to be patient-centered? Why or why not? #patientchat https://t.co/DKGtb0nqZD |
 | Lillian Lake - Host of #SoulNestingChat @llake @patientchat T1 It needs to include the personal side. I'd like my provider to know who I am. A means of connecting beyond my disease & symptoms. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A2: What works well? Writing down questions, planning expectations, finding a doctor who will listen and work with you(!), and trusting yourself. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: @Zebrafishspoony For everyone to see your replies, please include #patientchat in all your tweets :) |
| Melissa VanHouten @melissarvh They've built a genuine relationship w/me & understand what I'm like. They value my input & never treat me as if I'm not intelligent. Further, they entertain & truly evaluate my care suggestions/recommendations. It is always, "Let's discuss this." #PatientChat |
| Patient Empowerment Network @power4patients RT @cvhconsulting: @patientchat A2: @patientchat A2: What works well? Writing down questions, planning expectations, finding a doctor who will listen and work with you(!), and trusting yourself. #patientchat |
| JB Ashtin @JBAshtin RT @melissarvh: They've built a genuine relationship w/me & understand what I'm like. They value my input & never treat me as if I'm not intelligent. Further, they entertain & truly evaluate my care suggestions/recommendations. It is always, "Let's discuss this." #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: Would you consider your doctor to be patient-centered? Why or why not? #patientchat https://t.co/DKGtb0nqZD |
| Heather McCullen @H_SalemOaks @K_SalemOaks My cat's vet is REALLY good about patient centricity. I tweet about it basically every time I come home from an appointment (which is often, because I have three senior cats). If only this was the norm for people-doctors. #patientchat |
| JB Ashtin @JBAshtin RT @cvhconsulting: @patientchat A2: @patientchat A2: What works well? Writing down questions, planning expectations, finding a doctor who will listen and work with you(!), and trusting yourself. #patientchat |
| JB Ashtin @JBAshtin RT @patientchat: T3: T3: Would you consider your doctor to be patient-centered? Why or why not? #patientchat https://t.co/DKGtb0nqZD |
| Melissa VanHouten @melissarvh My regular GI (as mentioned) is, but my previous specialist was not. He had no time or desire to hear me & was content to bark out "orders." He denied my symptoms & seemed to think #Gastroparesis was not a serious illness, despite being a specialist in the field. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @power4patients @cvhconsulting @patientchat Devil's advocate - When you have a disease that is consuming you, the last thing you need is "tools" that need to be managed/dissected. Healthcare was better even when we didn't have these tools. Because you knew each other as human beings so conversations happened. #patientchat |
 | Danny Miller - MEPAN Foundation @mepancure @patientchat #patientchat |
 | Stacy Hurt (she/her)🌻 @stacy_hurt If you work with patients fighting for their lives, their dignity, their families, their quality of life, then please read all of this 👇🏻 and #UnblockHealth |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat @power4patients T3 Mine is an ND and totally patient-centered. She knows me as a human being and connects that with my health concerns. My spouse's only knows him by his disease. He nice but does what needs to get done in 15 min. #patientchat |
| Heather McCullen @H_SalemOaks @K_SalemOaks She always explains everything in detail, the vet personally calls with results and will have a long conversation if needed, we talk about options when my cats won't take medications, she treats my cats like individuals not scratchy balls of teeth and claws. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @OdyO11: @patientchat T2: @patientchat T2: As a patient with complex, little known & incompletely researched disorders, it makes a huge difference whether I find doctors who think scientifically and don't adhere blindly to algorithms. Who are humble and curious. Great TED talk: https://t.co/X0vnSqo5xW #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A3: I'm going to respond to this by saying that if you don't have a doc that's patient-centered, it's probably time to move on! Trust yourself and value your care. (I understand this can be challenging for those in rural areas and with rare conditions). #patientchat |
 | Enlightening Results 💡 @GraceCordovano RT @stacy_hurt: If you work with patients fighting for their lives, their dignity, their families, their quality of life, then please read all of this 👇🏻 and #UnblockHealth |
| Ody @OdyO11 @patientchat T3: After an odyssey, I found patient-centered doctors: They take me seriously, we bear the uncertainty together, make decisions together and learn together about my disorders and what that means for me. There is mutual trust and respect. #patientchat |
| Seth Rotberg @Srotberg15 RT @cvhconsulting: @patientchat A3: @patientchat A3: I'm going to respond to this by saying that if you don't have a doc that's patient-centered, it's probably time to move on! Trust yourself and value your care. (I understand this can be challenging for those in rural areas and with rare conditions). #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @OdyO11 @power4patients @patientchat T2 THAT's just what I said in essence to my husband's doctor last Friday. Look outside the box kind of thing. Look beyond what you know or think you know. #patientchat |
| Patient Empowerment Network @power4patients A3: It's a shame to have to ask this question. All Drs should be patient centric by default and most, if not all, of the good ones are. Unfortunately, the system is the antithesis of patient-centered & that's what we all need to work together to change #patientchat #patientchat |
| Melissa VanHouten @melissarvh RT @OdyO11: @melissarvh Yes! Being taken seriously, even if I am an outlier. Not to be blindly pressed into diagnostic and treatment algorithms that don't fit my case. #patientchat |
 | Tracy Bush- Nutrimom @TracyBNutrimom RT @melissarvh: My regular GI (as mentioned) is, but my previous specialist was not. He had no time or desire to hear me & was content to bark out "orders." He denied my symptoms & seemed to think #Gastroparesis was not a serious illness, despite being a specialist in the field. #PatientChat |
| Patient Chat @patientchat T4 coming up… #patientchat |
| Patient Empowerment Network @power4patients @cvhconsulting @patientchat Yes x1000000 #patientchat #PatientEmpowerment |
| PROS Foundation @PROS_Foundation @patientchat T2: @patientchat We have about two out of every three doctors follow-up with a call and that further emphasizes they are putting the patient first #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @H_SalemOaks @davidcnorrismd @K_SalemOaks I had to giggle because I'm envisioning myself as "scratchy balls of teeth and claws" when I'm in an appointment w/my husband. 😅 #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @llake @power4patients @patientchat Absolutely, but we are talking about skills to help patients feel more in control of the situations they're in. "Tools" to help them to ask questions and understand their treatment plans. Diagnostic "tools" are a problem, doctors don't listen. #patientchat |
| Heather McCullen @H_SalemOaks T3: My doctor is pretty patient centered, I got lucky to have a doctor that has the same mentality I do about how patients and doctors should work together. #patientchat |
| JB Ashtin @JBAshtin RT @OdyO11: @patientchat T3: After an odyssey, I found patient-centered doctors: @patientchat T3: After an odyssey, I found patient-centered doctors: They take me seriously, we bear the uncertainty together, make decisions together and learn together about my disorders and what that means for me. There is mutual trust and respect. #patientchat |
| Patient Chat @patientchat T4: What are some of the barriers to a patient-centered approach? #patientchat https://t.co/hFOCRzV8Ou |
| Ody @OdyO11 @patientchat T3: It's not the rule though. I try to avoid seeing new doctors or going to the ER because of the negative experiences I have made. With my disorders, I am in a high risk group for being dismissed and being pushed into boxes that neither fit me nor my case. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are some of the barriers to a patient-centered approach? #patientchat https://t.co/hFOCRzV8Ou |
| Ody @OdyO11 RT @patientchat: T4: T4: What are some of the barriers to a patient-centered approach? #patientchat https://t.co/hFOCRzV8Ou |
| Heather McCullen @H_SalemOaks T4: Training. #patientchat |
| JB Ashtin @JBAshtin RT @patientchat: T4: T4: What are some of the barriers to a patient-centered approach? #patientchat https://t.co/hFOCRzV8Ou |
| Lillian Lake - Host of #SoulNestingChat @llake @power4patients A3 I'm hearing more about doctors getting right in the face of patients & telling (yelling) them that they have ______ - "you have...you're gonna die" & either tell them to do something or go on hospice. It's horrible. That's not working together. #patientchat |
| Ody @OdyO11 @patientchat T4: Disbelief and distrust towards patients. Seeing patients with a bias towards personal deficits and not as reliable witnesses of their own experiences and competent decision-makers about their own lives. #patientchat |
| Melissa VanHouten @melissarvh Lack of communication skills (patient and/or doc); lack of empathy; inadequate time for appointments; insurance restrictions; health illiteracy. #PatientChat |
 | Rajiv Leventhal @RajivLeventhal RT @GraceCordovano: The heated debates on #DataAccess, #Interoperability, #InformationBlocking, & patient rights have been sorely missing the patient perspective. Here's my response: https://t.co/9FOvv3l52O #bcsm #btsm #lcsm #gyncsm #patientchat #chronicillness #disability #raredisease #hcldr https://t.co/3rAnzNpl3v |
| Danny Miller - MEPAN Foundation @mepancure @patientchat Not at the payor level. Certainly more on the drug development front, where patient input/perspective is critical to get something into clinic #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @Srotberg15 @PROS_Foundation Haha! Yep, New England is funny that way. Although, truthfully, we've had a couple of good days. Here comes the weekend!! #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey GAH! I'm SO late! Casey Q here, multitasking really badly - prepping #hdpalooza panel w/buddies on consumer privacy in #healthIT ... and on this chat now #patientchat |
| Melissa VanHouten @melissarvh RT @OdyO11: @patientchat T4: @patientchat T4: Disbelief and distrust towards patients. Seeing patients with a bias towards personal deficits and not as reliable witnesses of their own experiences and competent decision-makers about their own lives. #patientchat |
| JB Ashtin @JBAshtin RT @melissarvh: Lack of communication skills (patient and/or doc); lack of empathy; inadequate time for appointments; insurance restrictions; health illiteracy. #PatientChat |
| Heather McCullen @H_SalemOaks @TracyBNutrimom When is money not the problem? #patientchat |
| Patient Empowerment Network @power4patients A4: There are some barriers but I think we all can agree that the benefits far outweigh them https://t.co/9fN6p8s4b0 #patientchat |
| JB Ashtin @JBAshtin RT @sfcomms: @patientchat Not at the payor level. Certainly more on the drug development front, where patient input/perspective is critical to get something into clinic #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @OdyO11 @patientchat Curiosity is key! I love this point. 🙌 #patientchat |
| Ody @OdyO11 @patientchat T4: Unfortunately, the assumption that physical symptoms are psychogenic often results in this problematic view of patients. #patientchat |
| Patient Empowerment Network @power4patients @H_SalemOaks @TracyBNutrimom Sad but almost always true #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @H_SalemOaks @Srotberg15 @PROS_Foundation Sadly, not quite the best slushies, eh? Crazy weather. #patientchat https://t.co/3PwD7s1COA |
 | Salem Oaks @SalemOaks @sfcomms @patientchat We're happy to hear that this has been your experience. #patientchat |
| Seth Rotberg @Srotberg15 RT @H_SalemOaks: T4: T4: Training. #patientchat |
 | Adeline Boettcher, PhD @adeline_bio RT @GraceCordovano: The heated debates on #DataAccess, #Interoperability, #InformationBlocking, & patient rights have been sorely missing the patient perspective. Here's my response: https://t.co/9FOvv3l52O #bcsm #btsm #lcsm #gyncsm #patientchat #chronicillness #disability #raredisease #hcldr https://t.co/3rAnzNpl3v |
| Danny Miller - MEPAN Foundation @mepancure @patientchat See my answer to T1 - I feel like they at least listen to me. Does that translate into novel, forward-thinking care? Not always, due to formulas and precederures that must be adhered to at an administrative level e.g. - "we don't test for that" #patientchat |
| Ody @OdyO11 @llake @power4patients @patientchat T2: Yes! I wish a scientific mindset would be taught more, both at school and at medical school. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @cvhconsulting @OdyO11 @patientchat Especially juxtaposed with “scientific” and “humble”. All aspects of the same thing? #patientchat |
| Patient Chat @patientchat T5 coming up... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: Patient centered care looks like + Using #opennotes in patient portals (HT @myopennotes) + LISTENING vs EHR in exam room + Appt times outside 9-5 M-F + Resources for people/pts to learn how to manage [whatever condition] - both in person and virtual #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @MightyCasey: A1: A1: Patient centered care looks like + Using #opennotes in patient portals (HT @myopennotes) + LISTENING vs EHR in exam room + Appt times outside 9-5 M-F + Resources for people/pts to learn how to manage [whatever condition] - both in person and virtual #patientchat |
| Patient Chat @patientchat T5: How can a patient-centric approach add value outside of the clinical experience? #patientchat https://t.co/z8Y7q8NFGk |
| Adeline Boettcher, PhD @adeline_bio “The tears stream down my face as I recall the hundreds, thousands, of pleas I have been faced with over the last 20 years... ...These people could not get access to the information they needed for the next step in their, or their loved one’s, care.” |
| Heather McCullen @H_SalemOaks @TracyBNutrimom Even "better" insurance companies have limits to what is covered. (Who are these people who want to "keep their insurance") #patientchat |
| Patient Empowerment Network @power4patients @llake That's absolutely horrible. Most people would never let anyone else treat them with so little respect, why would they allow a Dr to treat them that way. As they say, "Vote with your feet" - definitely time to find a new Dr #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How can a patient-centric approach add value outside of the clinical experience? #patientchat https://t.co/z8Y7q8NFGk |
| Ody @OdyO11 @davidcnorrismd @cvhconsulting @patientchat I think they are. To me, a scientific mindset means a curious and humble mindset. To always allow for the possibility to be wrong and to learn something new from that. In such a context, even patients who are outliers can be seen, not dismissed. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @power4patients A4 As a caregiver and #youngcarer advocate I can vouch for having a family-centered approach. It's essential for everyone's well-being, especially young carers. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: Will say that KaiserP on the east coast has a terrific portal - I'm not their pt, but my sister is, helping her w/recent "adventures in medical care" was well-facilitated by their portal, which was a pleasant surprise! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @OdyO11: @patientchat T4: @patientchat T4: Disbelief and distrust towards patients. Seeing patients with a bias towards personal deficits and not as reliable witnesses of their own experiences and competent decision-makers about their own lives. #patientchat |
| Danny Miller - MEPAN Foundation @mepancure @patientchat Strict adherence to a standard of care that is restrictive (whatever is cheapest, easiest) and often based on science that lags behind what is happening in translational research/medicine in #RareDisease #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @sfcomms: @patientchat Strict adherence to a standard of care that is restrictive (whatever is cheapest, easiest) and often based on science that lags behind what is happening in translational research/medicine in #RareDisease #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: Since my only real med issue RN is age (I'm an official old!), only need PCP, patient centered as I need her to be (ie labs before office visits - let's have data to discuss!) In glide path for TKA, ortho surg has superb prep process, great comms (mostly) #patientchat |
| Ody @OdyO11 @patientchat T5: To be patient-centered means to see, not dismiss, outliers. It's a chance for research to learn that will otherwise be missed. To be patient-centered means to reduce medical traumas and not to inhibit access to care for complex patients. #patientchat |
| Melissa VanHouten @melissarvh @power4patients @llake Unfortunately, that is sometimes easier said than done when specialists are few & far between & when patient's resources (time, ability, funds) are limited. Personally, I'd die in the streets before I'd allow it, but that's often truly the call that must be made. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat @power4patients A5 We know the positive effect of feeling heard & cared for has health impact outside of the clinical visit. I see this in hospice care where there is often a rally once focused care is enacted. #patientchat |
| Ody @OdyO11 @patientchat T5: To be patient-centered might help reduce moral injury in medical professionals. It means to uphold values. It means to care for others the way you would like to be cared for. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: JUDY F'ING FAULKNER'S LETTER TO HHS ABOUT 'PRIVACY' Sorry, was I shouting? That letter is perfect example of paternalistic thinking still too prevalent across healthcare system when it comes to person/pt full participation in their own care. #patientchat |
| Tracy Bush- Nutrimom @TracyBNutrimom RT @sfcomms: @patientchat Strict adherence to a standard of care that is restrictive (whatever is cheapest, easiest) and often based on science that lags behind what is happening in translational research/medicine in #RareDisease #patientchat |
| Danny Miller - MEPAN Foundation @mepancure @patientchat Engaging with informed patients/caregivers can increase a clinician's knowledge of tips, tricks that can help other #raredisease families improve their quality of life - doctors CANNOT know everything - this is where a true dialogue can advance the science #patientchat |
 | kim bellard @kimbbellard 👏 |
| Lillian Lake - Host of #SoulNestingChat @llake @melissarvh @power4patients Exactly! It would be great to be able to do that. In rural areas it's not a likely option. Dependability on carers getting you to appts, lack of strength - yep "resources" are limited. If you're old enough & seriously ill you may not have the strength to fight #patientchat |
| Patient Chat @patientchat Time to share closing thoughts (CT) on what you learned, were reminded of or can implement. You can start your tweet with CT: #patientchat |
| Ody @OdyO11 @patientchat T5: To be patient-centered also means that doctors and patients are on the same side. It's a chance to advocate together for a more humane, better healthcare system instead of a system in which both doctors and patients feel helpless. #patientchat |
| Patient Empowerment Network @power4patients @melissarvh @llake I hear you but I truly believe there's always another option, especially when your dignity (and life!) is at stake, and we've helped many people figure out what their alternative options are #patientchat #telemedicine |
| Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: @melissarvh @llake I hear you but I truly believe there's always another option, especially when your dignity (and life!) is at stake, and we've helped many people figure out what their alternative options are #patientchat #telemedicine |
| Melissa VanHouten @melissarvh RT @OdyO11: @patientchat T5: @patientchat T5: To be patient-centered also means that doctors and patients are on the same side. It's a chance to advocate together for a more humane, better healthcare system instead of a system in which both doctors and patients feel helpless. #patientchat |
| Ody @OdyO11 RT @sfcomms: @patientchat Engaging with informed patients/caregivers can increase a clinician's knowledge of tips, tricks that can help other #raredisease families improve their quality of life - doctors CANNOT know everything - this is where a true dialogue can advance the science #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: patient centered care (the real kind, not the marketing buzz phrase version) means better outcomes. If care is really patient centered, it includes shared decision making based on patient preferences and values, not just "standard of care, NEXT!" 1/2 #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: A5: A5: patient centered care (the real kind, not the marketing buzz phrase version) means better outcomes. If care is really patient centered, it includes shared decision making based on patient preferences and values, not just "standard of care, NEXT!" 1/2 #patientchat |
| Ody @OdyO11 RT @sfcomms: @patientchat Strict adherence to a standard of care that is restrictive (whatever is cheapest, easiest) and often based on science that lags behind what is happening in translational research/medicine in #RareDisease #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @power4patients @melissarvh You do realize there is a dearth of internet connection in the US, yes? Ironically, with all of the other issues that rural America faces, internet connection would help solve many of them #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: with real patient centered care (as above) SDM + #patientpref = better outcomes, with outcome goals shared by person/pt and clinical team. Goal should be best-health for PATIENT, not just a checklist metric. 2/2 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @MightyCasey: A5: A5: patient centered care (the real kind, not the marketing buzz phrase version) means better outcomes. If care is really patient centered, it includes shared decision making based on patient preferences and values, not just "standard of care, NEXT!" 1/2 #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Late to the party, and now I gotta leave! TOO MANY THINGS! Have a great weekend, ever'body 😎 #patientchat |
| JB Ashtin @JBAshtin Completely agree! Medicine needs a #sameteam approach. #patientchat |
| JB Ashtin @JBAshtin RT @sfcomms: @patientchat Engaging with informed patients/caregivers can increase a clinician's knowledge of tips, tricks that can help other #raredisease families improve their quality of life - doctors CANNOT know everything - this is where a true dialogue can advance the science #patientchat |
| Patient Chat @patientchat Join us for the next Friday 1pmET Empowered #patientchat on Feb 7th. https://t.co/NVSLPsTrqf as we talk #disparities with @DHealthhub |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat Some fine engagement today. Have an empowered weekend everyone! #patientchat |
 | Diverse Health Hub @DHealthhub Can’t wait! #patientchat! |
| Diverse Health Hub @DHealthhub RT @patientchat: Join us for the next Friday 1pmET Empowered #patientchat on Feb 7th. https://t.co/NVSLPsTrqf as we talk #disparities with @DHealthhub |
| Melissa VanHouten @melissarvh @power4patients @llake Agree, but sometimes, u must get creative & accept < ideal situations in order 2 walk. That's often difficult 4 desperately ill people. I've seen some search 4 years 4 appropriate care, all the while getting iller. My solution was 2 choose regular GI over specialist. #PatientChat |
| Patient Empowerment Network @power4patients @llake @melissarvh Yes, I was born & raised in a rural area so acutely I'm aware. My Mother was diagnosed w/ an ultra rare disease living in a rural area. What I'm saying is that there are options & people, like us at @power4patients, here to help. This is 2020 & everything is possible #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: @llake @melissarvh Yes, I was born & raised in a rural area so acutely I'm aware. My Mother was diagnosed w/ an ultra rare disease living in a rural area. What I'm saying is that there are options & people, like us at @power4patients, here to help. This is 2020 & everything is possible #patientchat |
| Ody @OdyO11 This will likely result in discrimination against patient groups with uncommon presentations or rare(ly diagnosed) disorders. It's ethically problematic, and it comes at the risk of traumatizing patients and inhibiting scientific progress. (2/2) #patientchat |
| Ody @OdyO11 CT: When healthcare isn't patient-oriented, it will be at risk of only offering care to those who have common presentations of common disorders. To only check for the three most common causes of a symptom. To strictly adhere to algorithms. (1/2) #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Join us for the next Friday 1pmET Empowered #patientchat on Feb 7th. https://t.co/NVSLPsTrqf as we talk #disparities with @DHealthhub |
 | Lygeia Ricciardi @Lygeia A very powerful patient perspective on the #EHR #ipatientaccess #APIs topic from @GraceCordovano: |
| PROS Foundation @PROS_Foundation RT @patientchat: Join us for the next Friday 1pmET Empowered #patientchat on Feb 7th. https://t.co/NVSLPsTrqf as we talk #disparities with @DHealthhub |
| Lillian Lake - Host of #SoulNestingChat @llake @melissarvh @power4patients I agree. It took me 6 years. I made the decision to either die trying or thrive. On the path of thriving now but it took determination and support of family. Which brings up the issue of self-carers. An untalked about topic. That would be great for another week. 😀 #patientchat |
| Ody @OdyO11 RT @MightyCasey: A5: A5: with real patient centered care (as above) SDM + #patientpref = better outcomes, with outcome goals shared by person/pt and clinical team. Goal should be best-health for PATIENT, not just a checklist metric. 2/2 #patientchat |
| Ody @OdyO11 RT @MightyCasey: A5: A5: patient centered care (the real kind, not the marketing buzz phrase version) means better outcomes. If care is really patient centered, it includes shared decision making based on patient preferences and values, not just "standard of care, NEXT!" 1/2 #patientchat |
| Melissa VanHouten @melissarvh @power4patients @llake Absolutely! And with the growth of #telemedicine, I expect a whole new world to open up to patients. In any case, I will continue to fight for better care for my community, and I know you all are helping lead that fight as well! Thanks for all you do. #PatientChat |
#patientchat content from Twitter.