#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Empowerment @power4patients
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/kptqRInfUC
Patient Empowerment @power4patients
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with ot…
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 @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 @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 @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 Casey Quinlan @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
h e a t h e r z e e 🇺🇸⏳🦋 @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 @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 @JeamesSailor
@MightyCasey @BoltyBoy @Hilarious_Is The gang is all here now! I look forward to learning from this hellraiser! #patientchat #StrongVoice
Patient Empowerment @power4patients
RT @patientchat: 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
Nigel H @Crohnoid
Hello. Nigel from the UK. Will be dipping in and out of today's chat #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. Shereese here in Maryland #patientchat https://t.co/4kvNZ1Hf6s
Sanford Jeames; DHA @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 @gratefull080504
T1: Myth # in the US " US has the greatest #healthcare in the world + it is designed for patients" #patientchat https://t.co/YHud0wOzeM
Becky Brandt RN @bbhomebody
Q1 My least favorite Myth is that There is an "Opioid Crisis". #patientchat https://t.co/hBolQKpKjB
Mary MACK @MaryOCMack
T1: the myth that patients don't have valuable knowledge and are unable to understand basic science. #patientchat
Sanford Jeames; DHA @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: 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 @JeamesSailor
RT @MaryOCMack T1: the myth that patients don't have valuable knowledge and are unable to understand basic science. #patientchat
Kevin J. Fowler @gratefull080504
T2: Myths: Patients don;t want to be engaged in their #health #patientchat https://t.co/YHud0wOzeM
Patient Chat @patientchat
RT @yourgpsdoc: T1: One of the biggest misconceptions I see is the feeling that doctors and other healthcare professionals are the experts.…
ShereeseM, MS/MBA @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
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 RN @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 @JeamesSailor
@ZHeatherChamp @patientchat Now, that is the real truth. Trial designs are not culturally relevant. Minority are excluded. #patientchat
Patient Empowerment @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
Casey Berna, MSW @ChancesOur
RT @ShereesePubHlth: T1 The myth that doctors know everything and patients have nothing to contribute is still persisting, particularly in…
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 someon…
Sanford Jeames; DHA @JeamesSailor
@ShereesePubHlth A huge issue as well is that patient self knowledge is not relevant to research outcome. #patientchat #CBPR
Mighty Casey Quinlan @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 @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 @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 Casey Quinlan @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
ShereeseM, MS/MBA @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
Jeremy Murphy @jeremypmurphy
RT @patientchat: 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/F5t…
Sanford Jeames; DHA @JeamesSailor
@patientchat T2. Misconceptions about special populations greatly reduces possible participation due to biases. #patientchat #CBPR
Mighty Casey Quinlan @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 @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 someon…
Heather McCullen @H_SalemOaks
Hi #patientchat, joining a little late.
Mighty Casey Quinlan @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 Casey Quinlan @MightyCasey
RT @jamienholloway: T2: some myths impede research progress, some cause increased anxiety in decision making, and some actually adversely a…
Becky Brandt RN @bbhomebody
Q2 100% yes! These misconceptions impede progress on so many levels. Pain Patients get weaned off of the only thing that works for them. (Opioids) And the general public believes the hype. Its insulting as a law abiding patient! #patientchat https://t.co/0O4DcTF51p
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 @power4patients
RT @patientchat: 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
ShereeseM, MS/MBA @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
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, i…
Mighty Casey Quinlan @MightyCasey
@ShereesePubHlth WHAAAAAAT?!? That's just ... insanity. #patientchat
Mighty Casey Quinlan @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 th…
Heather McCullen @H_SalemOaks
RT @SuzieSiegel: T2: Yes, I think they impede progress. The lack of people of color in #ClinicalTrials hurts research (in addition to hurti…
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 RN @bbhomebody
@ShereesePubHlth Well thats just Friggin ridiculous! #patientchat
Sanford Jeames; DHA @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 knowled…
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 Casey Quinlan @MightyCasey
RT @JeamesSailor: @gratefull080504 I would also add that most physicians do not ask about patient communities. So vital to outcomes. #patie
Sanford Jeames; DHA @JeamesSailor
@bbhomebody @ShereesePubHlth Here is a true reality of our healthcare system. Lack of knowledge impedes progress. #patientchat #diversity
ShereeseM, MS/MBA @ShereesePubHlth
@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 @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 @power4patients
RT @patientchat: T3: Fact or Myth: Clinical trials are for patients who have run out of options. Discuss. #patientchat https://t.co/dyG1UJ7…
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
ShereeseM, MS/MBA @ShereesePubHlth
@anthonynotleon Sidebar: what is this scary little creature? #patientchat
Mighty Casey Quinlan @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 @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 someon…
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 @power4patients
RT @MightyCasey: @JeamesSailor @gratefull080504 THIS made my week: https://t.co/ukKZbobccT Bonus round = @SusannahFox quoted in story by @a
Kevin J. Fowler @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
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
ShereeseM, MS/MBA @ShereesePubHlth
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
TrendWiki USA @TrendWikiUSA
***New Trend Alert*** 1. Rosenstein 2. Cardinal Stadium 3. #AnxiousTVShows 4. Novichok 5. Organization 1 6. Eric Kaler 7. #patientchat 8. #Venom
Mighty Casey Quinlan @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 @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 @gratefull080504
#patientchat Have to run
Becky Brandt RN @bbhomebody
Q3 Maybe a little of both. If patients are getting good results from typical treatments they have no need to reach out further to clinical trials. Although some patients do, which is Very helpful to trials. #patientchat https://t.co/VwGuUDrwlm
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/9hMBUEZYtH #patientchat
Mighty Casey Quinlan @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
ShereeseM, MS/MBA @ShereesePubHlth
RT @bbhomebody: Q3 Maybe a little of both. If patients are getting good results from typical treatments they have no need to reach out furt…
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: ah HELL no! Trials are TREATMENTS. Partic in #oncology, but also in a host of other categories. #p
Sanford Jeames; DHA @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: Access to medical care is the most important factor in determining how healthy anyone is. Discuss. #pati
Patient Empowerment @power4patients
RT @revdrduke: @SuzieSiegel Yes! This is especially true for patients with #rarecancer. When there is no standard of care w/ a predictably…
Patient Empowerment @power4patients
RT @patientchat: T4: Fact or Myth: Access to medical care is the most important factor in determining how healthy anyone is. Discuss. #pati
Nigel H @Crohnoid
@yourgpsdoc T1: I like to express it as (and sorry if you've seen this many times before) I am the expert in my health My consultant is the expert in my condition #patientchat
Alan Brewington @abrewi3010
A4 myth. Literacy determines how healthy we are. Literacy goes for the entire #healthcare system. #patientchat
Sanford Jeames; DHA @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 @power4patients
RT @MightyCasey: A3: I'll keep it short: ah HELL no! Trials are TREATMENTS. Partic in #oncology, but also in a host of other categories. #p
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 @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
Nigel H @Crohnoid
T1: ...that surgery is the last resort. Sometimes it is a better option than long term drug use #patientchat
Sanford Jeames; DHA @JeamesSailor
RT @MaryOCMack T4 access to primary care very important. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@Crohnoid Absolutely correct! #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
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
Becky Brandt RN @bbhomebody
Q4 Myth. Some Patients who rarely see a doctor are remarkably healthy. However, some who can't afford healthcare due to the expense can fall way behind. #patientchat https://t.co/wBK9Bs0jMt
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…
Becky Brandt RN @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 @power4patients
RT @patientchat: T5: Fact or Myth: Few health decisions are appropriate for Shared Decision-Making (SDM). Discuss. #patientchat https://t.c…
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
Becky Brandt RN @bbhomebody
Q5 HUGE MYTH! Shared decision making should happen at EVERY appointment & for every issue. It's my body and I get the final say about all treatments, PERIOD! #patientchat https://t.co/ZrBWeJdaYD
Sanford Jeames; DHA @JeamesSailor
@patientchat A5. I believe it to be a MYTH that #SDM is appropriate in decision. Education greatly impacts outcomes. #patientchat #disparity
Patient Empowerment @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
Nigel H @Crohnoid
T5: Myth. All medical decisions should be subject of #SDM, if the patient wants it #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @Crohnoid: T5: Myth. All medical decisions should be subject of #SDM, if the patient wants it #patientchat
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: 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: MYTH! MYTH! MYTH! Nothing about me without me is our motto #patientempowerment #patientchat
Sanford Jeames; DHA @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
HB Library LC @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 someon…
Sanford Jeames; DHA @JeamesSailor
RT @Crohnoid T5: Myth. All medical decisions should be subject of #SDM, if the patient wants it #patientchat
Sanford Jeames; DHA @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: Patient engagement is only for chronic disease patients. Discuss. #patientchat https://t.co/zXlPcC5X8k
Patient Empowerment @power4patients
RT @patientchat: 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: Few health decisions are appropriate for Shared Decision-Making (SDM). Discuss. #patientchat https://t.c…
Carolyn Jachens @BarefootBlonde5
RT @ShereesePubHlth: T1 The myth that doctors know everything and patients have nothing to contribute is still persisting, particularly in…
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 @power4patients
RT @H_SalemOaks: T6: absolutely not. Patient engagement is for everyone, even healthy people #patientchat
Patient Empowerment @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 hav…
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 @power4patients
@H_SalemOaks Yes, yes and yes again #patientchat
Nigel H @Crohnoid
T6: All patients should be given the opportunity of engagement. For those with chronic conditions it often requires engagement and co-operation across a number of disciplines. Access to MDM discussions would be great #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
Becky Brandt RN @bbhomebody
Q6 Patient engagement should start from the very first doctor visit and continue to the last! If the patient is unconscious or unable to speak for themselves, a support person should take over the role. #patientchat https://t.co/IHpH3W6HGY
Sanford Jeames; DHA @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: Myth. I'm a big fan of engaging patients while they are healthy, even starting in childhood/adolescence. No reason to w…
Patient Chat @patientchat
Topic 7 (T7:) coming up...https://t.co/9hMBUEZYtH #patientchat
Patient Empowerment @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
Nigel H @Crohnoid
@yourgpsdoc T5: Certainly not adversaries but expert resources that we can use to manage our health and achieve best outcomes #patientchat
Patient Empowerment @power4patients
RT @patientchat: T7: In your role, how do you/can you make the biggest impact to debunk these myths or misconceptions? #patientchat https:/…
Sanford Jeames; DHA @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
Nigel H @Crohnoid
T7: I try and pass on the techniques/attitudes that I have built-up over the last few years to make best use of the health system - https://t.co/xFG4dqRSxr - as it may help others to manage better #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 @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 @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: In your role, how do you/can you make the biggest impact to debunk these myths or misconceptions? #patientchat https:/…
Sanford Jeames; DHA @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 @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 h…
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 @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…
Your GPS Doc, LLC @yourgpsdoc
RT @MaryOCMack: T6: patient engagement can also mean occasional disagreements. That should be ok and explored. It should not harm the relat…
Upstream @UpstreamAction
RT @Jim_TheRocktor: @MightyCasey Agree. Otherwise we would concentrate on #sdoh n #PopHealth which is the 99% that affects our health, than…
Sanford Jeames; DHA @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!
Len Starnes @lenstarnes
@DebMaskens @Elizabe85727641 Deb, Just happened to see #patientchat. Take a look at this brilliant case study from Norway which I had privilege of listening to last week. Breast cancer pt inputs cut waiting times, improved outcomes & cut costs. https://t.co/jVUfQTkGik
Sanford Jeames; DHA @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 @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 @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…
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
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
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 🌟 @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 @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 @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…
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
huvBee @huvbee
#patientchat #Medical #Carts on Sale Here: https://t.co/uYdQMCpdWa https://t.co/MU69uLA1nr
Raúl Juárez @_juarezr
RT @abrewi3010: A4 myth. Literacy determines how healthy we are. Literacy goes for the entire #healthcare system. #patientchat
#patientchat content from Twitter.