#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 Empowerment Network @power4patients 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/kptqRInfUC |
| Patient Empowerment Network @power4patients RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Patient Chat @patientchat I’m Kara from @power4patients and I'm excited for today's #patientchat |
 | Jamie Holloway, PhD @jamienholloway Saying hello to my friends at #patientchat— won’t be able to stay long. Summer mom duties call. https://t.co/U8UNEAYFvI |
| 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 |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @gratefull080504 checking in from #Chicago President, The Voice of the Patient #patientchat https://t.co/gGyefLIi7d |
 | Your GPS Doc, LLC @yourgpsdoc Hi everyone. I'm Nicole Rochester, a physician, professional health advocate, recent patient (now recovering!) and CEO of Your GPS Doc, LLC. Happy to be here. It's been a while! #patientchat |
 | Mary MACK @MaryOCMack Mary joining-- patient/advocate for the Laminopathies #patientchat |
 | Suzie Siegel @SuzieSiegel I'm a #sarcoma survivor & if any other sarcoma patients are online now, I hope they'll join this #patientchat. DM if you don't know how. |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Your GPS Doc, LLC @yourgpsdoc Forgot to mention former caregiver to my dad. #patientchat |
 | Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @jamienholloway Hello Jamie! Great to be among friends and colleagues! Joining from sunny Austin today. #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Myths and Misconceptions in Healthcare https://t.co/kptqRInfUC |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Today's #patientchat topic is Myths and Misconceptions in Healthcare https://t.co/kptqRInfUC |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat Good afternoon everyone. I am a Patient Advocate/Health Educator currently in Austin. #patientchat #disparities |
 | Jeremy Murphy @jeremypmurphy RT @patientchat: Today's #patientchat topic is Myths and Misconceptions in Healthcare https://t.co/kptqRInfUC |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings - will be a blink'n'u'miss-it cameo from me today. Doing intvu w/@BoltyBoy for my @Hilarious_Is podcast at :30 #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp Hi I’m Heather! Person living with 2 rare brain tumors and genetic condition called Cowden Syndrome. #btsm #pten #patientchat |
| 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 |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @SuzieSiegel So great to hear your perspectives in this realm and many others Suzie! #patientchat #sarcoma |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What myths or misconceptions about health/healthcare persist today? #patientchat https://t.co/MSSPtnbgce |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @MightyCasey @BoltyBoy @Hilarious_Is The gang is all here now! I look forward to learning from this hellraiser! #patientchat #StrongVoice |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What myths or misconceptions about health/healthcare persist today? #patientchat https://t.co/MSSPtnbgce |
 | STTR Cancer @sttrcancer .@STTRCancer will be participating in the Empowered #patientchat today at 10amPT. Make sure to tune in and share your thoughts! #TweetChat #PatientChat #CancerCare |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hello all. Shereese here in Maryland #patientchat https://t.co/4kvNZ1Hf6s |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat T1. A huge myth and misconceptions is the premise that minority populations are not interested in research trials. #patientchat |
| Suzie Siegel @SuzieSiegel T1. It's a myth that all cancer is described by the organ it's in. #Sarcoma subtypes are often named after the cells they most resembe ... and now after genetic mutations or fusions. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T1: Myth # in the US " US has the greatest #healthcare in the world + it is designed for patients" #patientchat https://t.co/YHud0wOzeM |
| Mary MACK @MaryOCMack T1: the myth that patients don't have valuable knowledge and are unable to understand basic science. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @ShereesePubHlth Ola Sista! Great to see you here and always look forward to your knowledge sharing. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T1: One of the biggest misconceptions I see is the feeling that doctors and other healthcare professionals are the experts. We are experts in medicine, but no one knows your story and your condition better than you and those who help care for you. #patientchat https://t.co/4Ugkcqwenq |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T1: T1: What myths or misconceptions about health/healthcare persist today? #patientchat https://t.co/MSSPtnbgce |
 | ElizabethKelly, Ph.D @Elizabe85727641 Hello everyone, Liz Kelly, an experienced health care provider (nurse) as well as patient within the system, awaiting opportunity to listen/learn from others. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @MaryOCMack T1: the myth that patients don't have valuable knowledge and are unable to understand basic science. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T2: Myths: Patients don;t want to be engaged in their #health #patientchat https://t.co/YHud0wOzeM |
| Patient Chat @patientchat RT @yourgpsdoc: T1: T1: One of the biggest misconceptions I see is the feeling that doctors and other healthcare professionals are the experts. We are experts in medicine, but no one knows your story and your condition better than you and those who help care for you. #patientchat https://t.co/4Ugkcqwenq |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 The myth that doctors know everything and patients have nothing to contribute is still persisting, particularly in rural area, strangely #patientchat https://t.co/UWvB5fwO4Z |
| Suzie Siegel @SuzieSiegel T1. It's a myth that a general oncologist is also a #sarcoma specialist. If you have a #RareCancer, you need to see someone who sees a lot of what you have, even just for a consultation. #patientchat |
 | Becky Brandt DegenRN @bbhomebody @ShereesePubHlth Good Mornin my East coast friend! #patientchat https://t.co/BEyfOEfoBx |
| Your GPS Doc, LLC @yourgpsdoc @gratefull080504 Huge myth! #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @ZHeatherChamp @patientchat Now, that is the real truth. Trial designs are not culturally relevant. Minority are excluded. #patientchat |
| Patient Empowerment Network @power4patients T1: I'm glad twitter increased characters to 280 but it's still not nearly enough to do this question justice...most everything about clinical trials, mental health treatment, palliative care, pain management, technology, the list goes on, and on... #patientchat |
| Your GPS Doc, LLC @yourgpsdoc This goes for any rare disease/illness. Completely agree! #patientchat https://t.co/ji7RlzCT0J |
| Jamie Holloway, PhD @jamienholloway T1: myth: there is only one option for a dx. Decisions must be made based on a careful analysis of benefits and harms, and patients need to have the info to feel confident making the decision. #patientchat https://t.co/1y5Ek9okOF |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/9hMBUEZYtH #patientchat |
 | Alan Brewington @abrewi3010 A1 that technology has an answer for every symptom or diagnosis. Tech is just another tool in our story, not the final chapter. #patientchat |
 | Dario Trapani @darioT_ RT @SuzieSiegel: T1. It's a myth that a general oncologist is also a #sarcoma specialist. If you have a #RareCancer, you need to see someone who sees a lot of what you have, even just for a consultation. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @ShereesePubHlth A huge issue as well is that patient self knowledge is not relevant to research outcome. #patientchat #CBPR |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: Biggest one in minds of too many people/patients is that US healthcare is expensive 'cause it's better than other countries. #fail #patientchat |
| Patient Chat @patientchat T2: Do you believe these misconceptions impede progress? #patientchat https://t.co/bZEtif2h3U |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @patientchat T2: Do you believe these misconceptions impede progress? #patientchat https://t.co/ICy10GDF7s |
| Suzie Siegel @SuzieSiegel T1. It's a myth that patient advocates who are not patients themselves know everything that patients know & are interchangeable. True patient advocates encourage patients to speak, instead of trying to speak for them. #patientchat |
| Patient Empowerment Network @power4patients @yourgpsdoc Agree 100% #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T1 Cultural & community myths directly affect health status, consulting Dr. Internet & family members confuses both patient & HC system. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: a misconception on the provider/clinician side = "if you build it, they will come"-itis when it comes to community, and patient, engagement. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 Here's one I heard and still can't believe they said it, "minority women don't care about after-diagnosis cancer therapies" #patientchat https://t.co/iMsDxYhG5U |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T2: T2: Do you believe these misconceptions impede progress? #patientchat https://t.co/bZEtif2h3U |
| Jeremy Murphy @jeremypmurphy RT @patientchat: You're invited! Join the "Myths and Misconceptions in Healthcare" #patientchat Friday 7/13 1pmET | 10amPT https://t.co/F5tEZmcJzB https://t.co/eFpf69Cn0W |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat T2. Misconceptions about special populations greatly reduces possible participation due to biases. #patientchat #CBPR |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: notice that both of my T1 responses are related to American inability to separate $$ from humanity. We suck at humanity, all too often. #patientchat |
| Jamie Holloway, PhD @jamienholloway T2: some myths impede research progress, some cause increased anxiety in decision making, and some actually adversely affect patient outcome. #patientchat https://t.co/xDFKA2Gx1a |
| Your GPS Doc, LLC @yourgpsdoc A2: Yes! When individuals hold on to beliefs (especially when erroneous and misinformed), we cannot move forward. #patientchat https://t.co/wvrrEuSGGi |
| Patient Empowerment Network @power4patients @SuzieSiegel YES!!! We spend a lot of time educating patients and caregivers about this. It's critical to see a specialist in your specific condition #patientchat |
 | Karen Galler @Karenrosegt RT @SuzieSiegel: T1. It's a myth that a general oncologist is also a #sarcoma specialist. If you have a #RareCancer, you need to see someone who sees a lot of what you have, even just for a consultation. #patientchat |
 | Heather McCullen @H_SalemOaks Hi #patientchat, joining a little late. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JeamesSailor @boltyboy @hilarious_is Hey, man - one of these days we need to be geo-same again, even if it's just for a short snort. #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @jamienholloway: T2: T2: some myths impede research progress, some cause increased anxiety in decision making, and some actually adversely affect patient outcome. #patientchat https://t.co/xDFKA2Gx1a |
| Suzie Siegel @SuzieSiegel T2: Yes, I think they impede progress. The lack of people of color in #ClinicalTrials hurts research (in addition to hurting individuals who might benefit). #patientchat |
| Alan Brewington @abrewi3010 A2 the symptoms of misconceptions are frustration and disengagement. Less patient stories mean less progress forward. #patientchat |
| Jamie Holloway, PhD @jamienholloway Later crew— I’m out! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Do you believe these misconceptions impede progress? #patientchat https://t.co/bZEtif2h3U |
| Your GPS Doc, LLC @yourgpsdoc Agree, but I would add that patients and families often do this because of poor/inadequate communication in the exam room, largely due to limited time for the doctor:patient encounter. #patientchat https://t.co/YkAASesbBa |
 | Anthony Leon @anthonynotleon @ShereesePubHlth Recently saw a specialist. She said "I've seen your type a lot in here, who gave you this treatment plan?" My answer "these 2 other docs" Her response "well they are wrong, you should know better" #patientchat https://t.co/zFIPSEcX6B |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T2 Misconceptions cause people to react to communities of patients in ways that impeded progress. From bias to fear, it all translates into reduced quality of care and access. #patientchat https://t.co/y9mTufid3X |
| Your GPS Doc, LLC @yourgpsdoc RT @ShereesePubHlth: T2 Misconceptions cause people to react to communities of patients in ways that impeded progress. From bias to fear, it all translates into reduced quality of care and access. #patientchat https://t.co/y9mTufid3X |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ShereesePubHlth WHAAAAAAT?!? That's just ... insanity. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ShereesePubHlth: T1 Here's one I heard and still can't believe they said it, "minority women don't care about after-diagnosis cancer therapies" #patientchat https://t.co/iMsDxYhG5U |
| Heather McCullen @H_SalemOaks RT @SuzieSiegel: T2: T2: Yes, I think they impede progress. The lack of people of color in #ClinicalTrials hurts research (in addition to hurting individuals who might benefit). #patientchat |
| Mary MACK @MaryOCMack T2 Absolutely myths impede progress. Patients know how they feel. To make assumptions that we don't have meaningful knowledge=misdiagnosis. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @anthonynotleon @ShereesePubHlth "Your type"?? How demeaning. #patientchat |
| Patient Chat @patientchat @jamienholloway Thanks for stopping by! #patientchat |
| Becky Brandt DegenRN @bbhomebody @ShereesePubHlth Well thats just Friggin ridiculous! #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @gratefull080504 I would also add that most physicians do not ask about patient communities. So vital to outcomes. #patientchat #SDOH |
| Your GPS Doc, LLC @yourgpsdoc RT @MaryOCMack: T2 Absolutely myths impede progress. Patients know how they feel. To make assumptions that we don't have meaningful knowledge=misdiagnosis. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up...https://t.co/9hMBUEZYtH #patientchat |
| Patient Chat @patientchat T3: Fact or Myth: Clinical trials are for patients who have run out of options. Discuss. #patientchat https://t.co/dyG1UJ78Iz |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @JeamesSailor: @gratefull080504 I would also add that most physicians do not ask about patient communities. So vital to outcomes. #patientchat #SDOH |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @bbhomebody @ShereesePubHlth Here is a true reality of our healthcare system. Lack of knowledge impedes progress. #patientchat #diversity |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @MightyCasey If I can find the info I saved, I'll post it but basically, from a study, the majority of docts came to this conclusion, thus decided to not offer the info to those patients. #patientchat |
| Heather McCullen @H_SalemOaks T3: Myth! #patientchat |
| Patient Empowerment Network @power4patients T2: DEFINITELY. For example #clinicaltrials and the fact that less than 5% of eligible people participate. We produced a program to help combat these myths and misunderstandings. Check it out: https://t.co/XifXxxOVZY #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: Fact or Myth: T3: Fact or Myth: Clinical trials are for patients who have run out of options. Discuss. #patientchat https://t.co/dyG1UJ78Iz |
| ElizabethKelly, Ph.D @Elizabe85727641 T2 Yes, cultural beliefs about health remain a strong influence, Ex: the anti-baca group’s, sins cause cancer. These myths stop health promotion efforts. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @anthonynotleon Sidebar: what is this scary little creature? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JeamesSailor @gratefull080504 THIS made my week: https://t.co/ukKZbobccT Bonus round = @SusannahFox quoted in story by @aaronecarroll + @afrakt. It's a triple play!! #PatientChat #SDOH #epatient |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat A3. It is a myth that clinical trials are for patients who are out of options. It is more knowledge. #patienchat #patientchat |
| Your GPS Doc, LLC @yourgpsdoc A3: FALSE, FALSE, FALSE! Clinical trials are not just "dead-end" treatments. #patientchat https://t.co/rxbQBTNGry |
| Suzie Siegel @SuzieSiegel T3. #ClinicalTrials are a great way to try a new & exciting drug. Patients need to here all the pros & cons, including that if you do a conventional treatment it may exclude you from a trial. #patientchat |
 | Deb Maskens @DebMaskens RT @SuzieSiegel: T1. It's a myth that a general oncologist is also a #sarcoma specialist. If you have a #RareCancer, you need to see someone who sees a lot of what you have, even just for a consultation. #patientchat |
| STTR Cancer @sttrcancer T3: Myth. Clinical trials are not just for patients who have run out of options. They can be used to examine ways to prevent illness in healthy people, to better detect and diagnose illness & for patients starting initial treatment. #patientchat |
| Alan Brewington @abrewi3010 A3?” Clinical trials are for those with a high level of curiosity who never tire of examining the idea of quality of life. #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: @JeamesSailor @gratefull080504 THIS made my week: @JeamesSailor @gratefull080504 THIS made my week: https://t.co/ukKZbobccT Bonus round = @SusannahFox quoted in story by @aaronecarroll + @afrakt. It's a triple play!! #PatientChat #SDOH #epatient |
 | CascadiaChat @CascadiaChat T1 Myths about healthcare “Patients don’t pay for their care” In fact a typical person pays $5248 in insurance costs, copays and deductibles https://t.co/biUIxYdfdG but only have a few visits a year. They are the only ones in healthcare not paid to be there. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A3: Myth #Clinicaltrials are intended to provided #innovation so that patient lives are improved in quality of life and length of life #patientchat https://t.co/bNLti6c93h |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 False. Clinical trials offer great opportunities to find treatment and hope where it may not exist otherwise. #patientchat https://t.co/kMKW5Na4vC |
| Suzie Siegel @SuzieSiegel T3. We need to do all we can to make it possible for more patients to enroll in #ClinicalTrials. As advocates, we need to help patients find financial resources. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @abrewi3010 I absolutely love this! If I was facile with GIFs like @ShereesePubHlth I would find a wonderful one for this reply. :-) #patientchat |
 | Rev. Dr. Stacey Simpson Duke @revdrduke Absolutely agree with this. My oncologist may be an expert in #sarcoma but *I* am the expert on my own body and my experience of sarcoma. And no one, including my doctor, cares more about the outcome of my treatment than I do. #patientchat https://t.co/18rDwnO3mI |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: I'll keep it short: ah HELL no! Trials are TREATMENTS. Partic in #oncology, but also in a host of other categories. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @jamienholloway always great to hear from you Jamie! Have fun with the real life as a mom!! #family #patientchat |
| Anthony Leon @anthonynotleon @yourgpsdoc @ShereesePubHlth Yes, I was really surprised. I didn't know that many big bearded Japanese Mexican fellas visit an Endocrinologist. First red flag should have been all other Endos in the area had a 3 month wait, these folks had a 1 week. #patientchat |
| Alan Brewington @abrewi3010 @yourgpsdoc @ShereesePubHlth Thank you! 🙏 #patientchat |
 | Dolores Richards @joyfulkira Hi Everyone! Love hearing #patientchat #patientempowerment |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat Have to run |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/9hMBUEZYtH #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Dayum, told you guys it'd be a cameo appearance. Gotta run. 💞💞 #patientchat |
| Jeremy Murphy @jeremypmurphy A3: This is a very tough one. For example~for cancer patients with few remaining options, the clinical trial windows for treatment are so competitive and narrow that it’s disturbing. #patientchat https://t.co/nNYHZfetRg |
| Patient Chat @patientchat T4: Fact or Myth: Access to medical care is the most important factor in determining how healthy anyone is. Discuss. #patientchat https://t.co/xtmtV5GazP |
| Rev. Dr. Stacey Simpson Duke @revdrduke @SuzieSiegel Yes! This is especially true for patients with #rarecancer. When there is no standard of care w/ a predictably good response rate, #ClinicalTrials can sometimes offer the possibility of better response. #patientchat |
 | The Roctor,MD @TheRoctor_MD @MightyCasey Agree. Otherwise we would concentrate on #sdoh n #PopHealth which is the 99% that affects our health, than just "healthcare" which is the 1% (but where the money is). Change focus from "healthcare" to "caring about health." #patientchat |
| Heather McCullen @H_SalemOaks RT @MightyCasey: A3: I'll keep it short: A3: I'll keep it short: ah HELL no! Trials are TREATMENTS. Partic in #oncology, but also in a host of other categories. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat A4. I believe it is a fact that access is important. We still suffer from access & that is real. #patientchat #disparities |
| Rev. Dr. Stacey Simpson Duke @revdrduke @SuzieSiegel For some #sarcoma patients w/ metastatic disease, #ClinicalTrials maybe should even be offered as a first line treatment. #patientchat (am trying to find a recent study I read that actually made this recommendation) |
| Mary MACK @MaryOCMack T4. Having enough money is the determining factor-- good food, housing, education etc. imo. #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T3 Will depend on the type of subjects pre-determined for the research. Researchers also do not appear to include epidemiological data, rather use a subject self-selection process to meet the disease. #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T4: Fact or Myth: T4: Fact or Myth: Access to medical care is the most important factor in determining how healthy anyone is. Discuss. #patientchat https://t.co/xtmtV5GazP |
| Patient Empowerment Network @power4patients RT @revdrduke: @SuzieSiegel Yes! This is especially true for patients with #rarecancer. When there is no standard of care w/ a predictably good response rate, #ClinicalTrials can sometimes offer the possibility of better response. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: Fact or Myth: T4: Fact or Myth: Access to medical care is the most important factor in determining how healthy anyone is. Discuss. #patientchat https://t.co/xtmtV5GazP |
| Alan Brewington @abrewi3010 A4 myth. Literacy determines how healthy we are. Literacy goes for the entire #healthcare system. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @MightyCasey See ya! I love your stick and move strategy! I ain't mad at cha! Got nothing but luv for ya! #patientchat #collaboration |
| Patient Empowerment Network @power4patients RT @MightyCasey: A3: I'll keep it short: A3: I'll keep it short: ah HELL no! Trials are TREATMENTS. Partic in #oncology, but also in a host of other categories. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc A4: I absolutely agree it is VERY important, but I shy away from saying "most important", as there are so many other factors (like #healthliteracy as one example). Getting care is the first step, knowing how to utilize the information and treatment is another. #patientchat https://t.co/o9ccoDIqrq |
| Mary MACK @MaryOCMack T4 access to primary care very important. #patientchat |
| Heather McCullen @H_SalemOaks @jeremypmurphy I’d like to know more about why you feel this way #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4 myth. Literacy determines how healthy we are. Literacy goes for the entire #healthcare system. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @abrewi3010 Wow, we are so on the same wavelength today! #patientchat |
| Suzie Siegel @SuzieSiegel T4 is hard because some people remain very healthy even though they rarely go to a doctor, and people who have all the access in the world still die. But there's no arguing that access helps enormously. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @MaryOCMack T4 access to primary care very important. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @Crohnoid Absolutely correct! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 Myth. The simple & short is, access means different things to different stakeholders. Access doesn't equal equity. Stick "access" on every corner, in every community & quality care will still be elusive for a myriad of reasons, #SDOH, #competency etc #patientchat https://t.co/h6Qt0mvXjK |
| Heather McCullen @H_SalemOaks T4: Very close to fact. There are other variables, but with limited access to healthcare it’s hard to be healthy over a lifetime #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/9hMBUEZYtH #patientchat |
| Patient Chat @patientchat T5: Fact or Myth: Few health decisions are appropriate for Shared Decision-Making (SDM). Discuss. #patientchat https://t.co/oHZhHME5AZ |
 | AzAHQ @az_ahq RT @ShereesePubHlth: T1 The myth that doctors know everything and patients have nothing to contribute is still persisting, particularly in rural area, strangely #patientchat https://t.co/UWvB5fwO4Z |
| Becky Brandt DegenRN @bbhomebody @ShereesePubHlth LOVE the Southpark gif. #patientchat |
| Jeremy Murphy @jeremypmurphy @patientchat A4: Preventive health~and promoting holistic wellness~is still underutilized. We still have access issues too, even for patients with terminal illness. Some travel to other countries (in Europe for example) to get the essential treatment they need. #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T4 HC system is a provider of health & care which the patient brings to the HC system. Health is so much more than disease, it is air, water, diet, etc. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: Fact or Myth: T5: Fact or Myth: Few health decisions are appropriate for Shared Decision-Making (SDM). Discuss. #patientchat https://t.co/oHZhHME5AZ |
| Your GPS Doc, LLC @yourgpsdoc A5: Myth. If the patient is conscious, there is an opportunity for SDM and docs should fully take advantage of it. (If not, use SDM with POA/family, etc.) I really can't think of any other exceptions. #patientchat https://t.co/RjPR4cBEgJ |
| Mary MACK @MaryOCMack T5 myth-- anything regarding treatment, etc. I want to know the reason behind it. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat A5. I believe it to be a MYTH that #SDM is appropriate in decision. Education greatly impacts outcomes. #patientchat #disparity |
| Patient Empowerment Network @power4patients T5: MYTH! MYTH! MYTH! Nothing about me without me is our motto #patientempowerment #patientchat |
| Suzie Siegel @SuzieSiegel @jeremypmurphy @patientchat Yikes, but a number of people pay exorbitant amounts to travel to Europe, Mexico, etc., for unproven and ineffective treatment. #patientchat |
| Dolores Richards @joyfulkira Good to know, where can orgs like @AARPNJ get more info! @AARPBlackCom #patientchat https://t.co/06FGV46uZV |
| ElizabethKelly, Ph.D @Elizabe85727641 T5 All health decisions are shared decisions whether made conscience or unconsciencely. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @Crohnoid: T5: |
| Deb Maskens @DebMaskens Love this: "if the patient is conscious!" Yes to shared decision making, even in the barely conscious... #SDM #patientchat https://t.co/SjF8QUUD7A |
| Heather McCullen @H_SalemOaks RT @power4patients: T5: T5: MYTH! MYTH! MYTH! Nothing about me without me is our motto #patientempowerment #patientchat |
| Alan Brewington @abrewi3010 A5 myth. All knowledgeable & info should be prejudice free. It all has the potential to help in decision making. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: T5: T5: MYTH! MYTH! MYTH! Nothing about me without me is our motto #patientempowerment #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat I meant to say it is a myth and INAPPROPRIATE to assume it is not important. It is very important and appropriate for shared decision making to be part of any discussion. Bad typing #patientchat #PatientEducation |
 | Fiona Ross @fionaross15 RT @SuzieSiegel: T1. It's a myth that a general oncologist is also a #sarcoma specialist. If you have a #RareCancer, you need to see someone who sees a lot of what you have, even just for a consultation. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @Crohnoid T5: Myth. All medical decisions should be subject of #SDM, if the patient wants it #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @Elizabe85727641 T5 All health decisions are shared decisions whether made conscience or unconsciencely. #patientchat |
| Patient Chat @patientchat Topic 6 (T6:) coming up...https://t.co/9hMBUEZYtH #patientchat |
| Patient Chat @patientchat T6: Fact or Myth: Patient engagement is only for chronic disease patients. Discuss. #patientchat https://t.co/zXlPcC5X8k |
| Suzie Siegel @SuzieSiegel T5. I think I've been at peace with my treatment, even though I've suffered from serious #LateEffects, because I've always felt that I shared in the decision-making. I feel like my doctors & I did the best we could with what we knew at the time. #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T6: Fact or Myth: T6: Fact or Myth: Patient engagement is only for chronic disease patients. Discuss. #patientchat https://t.co/zXlPcC5X8k |
| Patient Empowerment Network @power4patients RT @patientchat: T6: Fact or Myth: T6: Fact or Myth: Patient engagement is only for chronic disease patients. Discuss. #patientchat https://t.co/zXlPcC5X8k |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T5: Fact or Myth: T5: Fact or Myth: Few health decisions are appropriate for Shared Decision-Making (SDM). Discuss. #patientchat https://t.co/oHZhHME5AZ |
 | Carolyn Jachens @BarefootBlonde5 RT @ShereesePubHlth: T1 The myth that doctors know everything and patients have nothing to contribute is still persisting, particularly in rural area, strangely #patientchat https://t.co/UWvB5fwO4Z |
| Suzie Siegel @SuzieSiegel T6. All patients should be engaged in their medical care, unless it causes them too much anxiety, and then it helps to have a friend or family member to do research, go to appointments with them, etc. #patientchat |
| Mary MACK @MaryOCMack T6 myth. Very Important for any condition #patientchat |
| Heather McCullen @H_SalemOaks T6: absolutely not. Patient engagement is for everyone, even healthy people #patientchat |
| Dolores Richards @joyfulkira Yes!👏🏽 #patientempowerment #patientchat https://t.co/PGtTqv5Vs7 |
| Patient Empowerment Network @power4patients RT @H_SalemOaks: T6: T6: absolutely not. Patient engagement is for everyone, even healthy people #patientchat |
| Patient Empowerment Network @power4patients RT @SuzieSiegel: T6. All patients should be engaged in their medical care, unless it causes them too much anxiety, and then it helps to have a friend or family member to do research, go to appointments with them, etc. #patientchat |
| Alan Brewington @abrewi3010 A6 myth. I don’t care if my quality of life is raised by someone who has never had a cold. #everyoneincluded is the new base for healthcare. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc A6: Myth. I'm a big fan of engaging patients while they are healthy, even starting in childhood/adolescence. No reason to wait for illness! #patientchat https://t.co/B7L064Qeoz |
| ElizabethKelly, Ph.D @Elizabe85727641 T6 Patient engagement necessary to promote healthy living, practices & keep workforce hearty & health literate. Pt engagement saves money as well. #patientchat |
| Suzie Siegel @SuzieSiegel T5. Doctors should also understand that when most of us talk about #PatientEngagement, we're not saying that patients should treat doctors like adversaries. Ideally, an engaged patient is a "better" patient. #patientchat |
| Patient Empowerment Network @power4patients @H_SalemOaks Yes, yes and yes again #patientchat |
| Deb Maskens @DebMaskens @patientchat T6: So let doctors decide for us for acute conditions? No thank you. In the #kidneycancer community we're working on decision aid tools for every decision including type of surgery, surveillance vs surgery, treatment choices #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat A6.This is a MYTH that patients R useful in only chronic disease. This is HUGE in any health condition. #patientchat #disparity |
| Your GPS Doc, LLC @yourgpsdoc Completely agree! #patientchat https://t.co/g9y0cJiHBV |
| Heather McCullen @H_SalemOaks RT @yourgpsdoc: A6: A6: Myth. I'm a big fan of engaging patients while they are healthy, even starting in childhood/adolescence. No reason to wait for illness! #patientchat https://t.co/B7L064Qeoz |
| Patient Chat @patientchat Topic 7 (T7:) coming up...https://t.co/9hMBUEZYtH #patientchat |
| Patient Empowerment Network @power4patients T6: #patientengagement has just as much to do with wellness and prevention as it has to do with treatment #patientempowerment #patientchat |
| Patient Chat @patientchat T7: In your role, how do you/can you make the biggest impact to debunk these myths or misconceptions? #patientchat https://t.co/Eufa45tHcK |
| Suzie Siegel @SuzieSiegel For example, once I learned that there's often a wait in oncology, I made sure I always brought something enjoyable to read. Then I could let go of my frustration ... although I still noted to professionals how long I waited. #patientchat |
| Deb Maskens @DebMaskens @Elizabe85727641 Very interested in your comment. Is there any published evidence that an engaged/activated patient saves the healthcare system money? Would help us all to point to that research! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T7: T7: In your role, how do you/can you make the biggest impact to debunk these myths or misconceptions? #patientchat https://t.co/Eufa45tHcK |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor Great comment here. Patients are the most important outcome impact for any health condition. Lack of patient engagement is why chronic diseases become chronic. Patient info vital to disease reductions & improved outcomes #patientchat #disparities #CBPR https://t.co/6OoEuOrpgb |
| Alan Brewington @abrewi3010 A7 continue to tell my story in a vulnerable and creative way. #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke T5. *Every* health decision is appropriate for SDM. What happens with my health affects me far more than it affects my medical team - why would I not be included in the decision-making? #patientchat https://t.co/F1QCYw4qfl |
| ElizabethKelly, Ph.D @Elizabe85727641 T7 Listen to others talk about their health, assess clues to further conversation, understand decision-making, offer appropriate resources. & follow-up. #patientchat |
| Suzie Siegel @SuzieSiegel T6. As a former journalist, I'm not intimidated by doctors. But getting to know them as people & understanding the system made a world of difference. #patientchat |
| Patient Empowerment Network @power4patients T7: We're going to keep sharing patient stories and helping to improve health literacy via our advocacy efforts, programs, SoMe platforms & everything else we do https://t.co/SJawpg7Xmf #patientchat |
| Dolores Richards @joyfulkira Access should be coupled with consideration to social determinants, such as, support, transportation, housing, meals #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat A7. Biggest role any patient can play in their outcome is sharing info with healthcare team. #SDOH #patientchat |
| Mary MACK @MaryOCMack T6: patient engagement can also mean occasional disagreements. That should be ok and explored. It should not harm the relationship. #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke T6. MYTH. If my doctors had engaged me more fully when I presented last year with an acute issue (DVT), perhaps I would’ve had more treatment options for my now-chronic issue (#metastatic #sarcoma). #patientchat https://t.co/V22cutdCSI |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T7: T7: In your role, how do you/can you make the biggest impact to debunk these myths or misconceptions? #patientchat https://t.co/Eufa45tHcK |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor A5. Thanks for sharing this perspective. I would hope that healthcare teams & physicians would learn to listen to patients & THEIR perspectives. Meet people where THEY are, not where WE are. #patientchat #CBPR #PatientEngagement #disparities https://t.co/peUVh05LkY |
| Your GPS Doc, LLC @yourgpsdoc A7: I use all of my experiences with the healthcare system (doc, patient, caregiver, educator, administrator) as a health advocate and speaker to educate and empower patients and family caregivers so they can take control of their healthcare. #patientchat https://t.co/ORH0IKsSVW |
| Rev. Dr. Stacey Simpson Duke @revdrduke If patients are engaged around disease prevention and holistic health, as well as when they present with an acute health issue, perhaps the incidence of chronic health problems would decrease. #patientchat |
| Suzie Siegel @SuzieSiegel T7. In addition to Twitter, I'm on the @SarcomaAlliance Facebook page, & I do peer-to-peer volunteering. I use links to reputable resources so that it's not just me saying something (because I'm not a health-care professional.) #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @revdrduke: T6. MYTH. If my doctors had engaged me more fully when I presented last year with an acute issue (DVT), perhaps I would’ve had more treatment options for my now-chronic issue (#metastatic #sarcoma). #patientchat https://t.co/V22cutdCSI |
| 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 |
| Mary MACK @MaryOCMack T7. As a person with a rare disease, I've learned and continue to learn all I can about it. Also if you are a doctor, it's possible that you will encounter a rare disease in your practice. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @MaryOCMack: T6: T6: patient engagement can also mean occasional disagreements. That should be ok and explored. It should not harm the relationship. #patientchat |
 | Upstream @UpstreamAction RT @Jim_TheRocktor: @MightyCasey Agree. Otherwise we would concentrate on #sdoh n #PopHealth which is the 99% that affects our health, than just "healthcare" which is the 1% (but where the money is). Change focus from "healthcare" to "caring about health." #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat My closing thought is the fact we are still NOT as cognizant on role of culture in patient care. Biases are real. #patientchat |
| Suzie Siegel @SuzieSiegel T7. I try to emphasize that patients should check out everything they read online or their friend/neighbor tells them, including anything I say! #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SuzieSiegel And most docs don't want their patients to be intimidated by them. I love that you get to know them as people. That can be difficult in brief interactions. We are all people, after all. 😉 #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 CT Discovering our inner & external resources opens doors to health issues & management we have yet to explore. Appreciate everyone’s thoughts. #patientchat |
| Suzie Siegel @SuzieSiegel CT: I've been so busy tweeting that I have to go back and read other's comments thoughtfully. Thus, the biggest lesson is always to listen with an open mind. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc CT: There are many misperceptions about health and healthcare that limit progress. Maintaining an open dialogue between patients (and family caregivers) and doctors is the first step in the right direction. #patientchat https://t.co/LXxNyMPLrS |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. I will tweet out the transcript about 15 minutes past the hour. |
| Heather McCullen @H_SalemOaks @SuzieSiegel I have to do that for every tweetchat. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Chat @patientchat The next Empowered #patientchat of the summer will be Friday, August 10th at 1pm ET | 10am PT https://t.co/LKgjwgkw6n Hope to see you there! |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor @patientchat So glad to be part of this community. I value the opinions of such great people and contributors to healthcare. #patientchat |
| Patient Empowerment Network @power4patients CT: I'm struck by how powerful open forums like this one are and how we need to continue to work together to overcome the barriers and myths we discussed. Thanks so much to everyone who joined us for this Friday the 13th #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat of the summer will be Friday, August 10th at 1pm ET | 10am PT https://t.co/LKgjwgkw6n Hope to see you there! |
| Mary MACK @MaryOCMack CT: I think the unspoken social rule is still not to question the doctor. And Don't be that "difficult patient" The power differential is still very real and it continues to get in the way. Push through it nicely. #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
 | Sarah DeBord @TheSarahDeBord A3: Myth. I'm in active pursuit of trials myself, though I still have standard therapies available. I've watched too many friends wait until they were out of options, and not healthy enough to meet the criteria/qualify for a trial. #patientchat https://t.co/FJiGJBTH5P |
 | 🌟 Sherry Reynolds ✨ Person-Centered Health @Cascadia T5 Myth - Shared-decision making is a process, a conversation between the clinician and the patient, a way to craft care. Good resource @vmontori #patientchat https://t.co/RvnNnTRJ1t |
| Your GPS Doc, LLC @yourgpsdoc Thanks for an awesome #patientchat @power4patients! |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor I tend to believe Suzie, that our presence here in this realm is a testimony to our willingness to listen and learn from others. I value perspectives from many and all. #patientchat #KNOWLEDGE #disparities https://t.co/Yle1XrQTfE |
| STTR Cancer @sttrcancer @patientchat Thank you @patientchat for hosting such an insightful discussion! #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @yourgpsdoc Thanks for an awesome #patientchat @power4patients! |
| Patient Chat @patientchat @sttrcancer Thank you for joining and sharing your insight! #patientchat |
 | Julie Collier @JuliewithPALs #Alzheimers is a horrible disease where many doctors and care facilities write patients off because they have no voice literally and figuratively. #patientchat #ENDALZ |
| Jeremy Murphy @jeremypmurphy RT @patientchat: The next Empowered #patientchat of the summer will be Friday, August 10th at 1pm ET | 10am PT https://t.co/LKgjwgkw6n Hope to see you there! |
 | Donna wood @donnawood2015 Wow I totally agree So difficult when you have a complicated history dealing with any other doctor other than my own which can't always happen and for other doctors to even try and engage would be a miracle #patientchat https://t.co/W2p1itrgez |
#patientchat content from Twitter.