#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
RaquelRoschell🌈 @raquelonpurpose
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage w/other…
Mary MACK @MaryOCMack
#patientchat
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s special #patientchat
Chris Sarfaty @ChrisAug89
RT @power4patients: How and why should patients be included in design? Let's discuss Fri 2/23, 1pmET #patientchat https://t.co/fwsy6UHxB6 h…
Patient Chat @patientchat
This week’s #patientchat is a special one because we are trying something new! We want to publish a guide after the chat explaining how health care systems can include patients in the design and implementation of systems and processes
Christina Lizaso @btrfly12
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Richard Kreis @kreisr1
RT @patientchat: This week’s #patientchat is a special one because we are trying something new! We want to publish a guide after the chat e…
Jamie Holloway, PhD @jamienholloway
Hi, I'm Jamie. Breast cancer scientist & patient advocate in the DC area. Clinical research advocate for @Science37x. #patientchat
Barby Ingle 📣 @BarbyIngle
I am @BarbyIngle, Pres of @powerofpain, Amazon best selling author, & Reality Personality sharing my story about life-changing events that forced reflection & sprouted my journey From Wheels to Heals. Glad to be here today with all of you! #patientchat https://t.co/aC9TMUmo0F
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Mighty Casey Quinlan @MightyCasey
RT @GraceCordovano: A call-to-action for #PsychiatricAdvancedDirectives #MentalHealth @StuckonSW @KateLufkin1 #patientchat @savvy_coop @S
Christina Lizaso @btrfly12
Hi all :) I'm passionate about community engagement and health. Find me tweeting at #gyncsm #patientchat #breakthroughcrew #nsgcgenepool
Patient Chat @patientchat
Today's #patientchat is solely informational and not a substitute for speaking with a doctor who's familiar w/your medical needs and history
Christina Lizaso @btrfly12
RT @patientchat: This week’s #patientchat is a special one because we are trying something new! We want to publish a guide after the chat e…
Richard Kreis @kreisr1
Hello, Trifecta Richard here. I care for myself, mom (cardiac) and BIL (Epilepsy). Looking to a great chat. #patientchat
Marcela Musgrove @marcela
RT @GraceCordovano: A call-to-action for #PsychiatricAdvancedDirectives #MentalHealth @StuckonSW @KateLufkin1 #patientchat @savvy_coop @S
Richard Kreis @kreisr1
RT @patientchat: Today's #patientchat is solely informational and not a substitute for speaking with a doctor who's familiar w/your medical…
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat
Mighty Casey Quinlan @MightyCasey
<tap tap tap> IS THIS THING ON? Casey Q here, the Mighty Mouth, all about #healthliteracy + #science + #patientsincluded + #opendata. Loud. #patientchat
Richard Kreis @kreisr1
RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat
Enlightening Results @GraceCordovano
Happy Friday #patientchat! Grace, private cancer patient advocate & #PtExp enhancer, joining from NJ. https://t.co/CAqbISEb0d
Rheumatoid Patient @rheumpatient
Having issues with the feed updating so may be in and out of this one. UK patient with rheumatoid arthritis. #patientchat
Enlightening Results @GraceCordovano
@jamienholloway @Science37x Hey Jaime! Great to see you!#patientchat
Patient Chat @patientchat
Today's #patientchat topic is How to Include Patients in Design https://t.co/orcg0zpcRH
The Advocate Is In @TheAdvocateIsIn
Hi. I'm Claire, patient advocate also in the DC area. #patientchat
Christina Lizaso @btrfly12
Note that the #patientchat in twitter seems off today. You might need to try joining the chat with a tool like https://t.co/PworuvY0vZ
Enlightening Results @GraceCordovano
@btrfly12 @NLMdirector Hi Christina! Great topic today! #patientchat
Mary MACK @MaryOCMack
Hello, my name is Mary. I'm a patient and advocate for laminopathy disorders. #patientchat
Jamie Holloway, PhD @jamienholloway
@TheAdvocateIsIn Hi Claire! Good to see someone local! #patientchat
Richard Kreis @kreisr1
RT @jamienholloway: Hi, I'm Jamie. Breast cancer scientist & patient advocate in the DC area. Clinical research advocate for @Science37x. #…
Alan Brewington @abrewi3010
Hi all. Alan here. I see the world through my #rheum, #ChronicPain, and #mentalhealth eyes. I tell stories. #patientchat
Jamie Holloway, PhD @jamienholloway
@GraceCordovano @Science37x Hi Grace! #patientchat
Richard Kreis @kreisr1
RT @patientchat: Today's #patientchat topic is How to Include Patients in Design https://t.co/orcg0zpcRH
Enlightening Results @GraceCordovano
@MaryOCMack Nice to see you Mary! #patientchat
Mighty Casey Quinlan @MightyCasey
@jamienholloway @Science37x HAAAAIIII!! I forgot to mention @Science37x myself - I also am a #clinicalresearch advocate for them. #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
Richard Kreis @kreisr1
RT @abrewi3010: Hi all. Alan here. I see the world through my #rheum, #ChronicPain, and #mentalhealth eyes. I tell stories. #patientchat
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat topic is How to Include Patients in Design https://t.co/orcg0zpcRH
Richard Kreis @kreisr1
RT @btrfly12: Note that the #patientchat in twitter seems off today. You might need to try joining the chat with a tool like https://t.co/P…
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Marcela Musgrove @marcela
Hi all. I aspire to do UX and am involved with mental health and autism advocacy so am excited about today's topic #patientchat
Patient Critical Co-op @PatientCritical
Hello PJ here for PatientCritical Co-op, Canada's only member-owned advocacy & education organization. #patientchat
Richard Kreis @kreisr1
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
Christina Lizaso @btrfly12
@GraceCordovano @NLMdirector Been nice to be able to catch a few of these chats while I was on a brief break. Will miss it but so glad to make it for today's amazing topic. #patientchat
Richard Kreis @kreisr1
RT @MaryOCMack: Hello, my name is Mary. I'm a patient and advocate for laminopathy disorders. #patientchat
Patient Chat @patientchat
T1: Why should patients and families be included in the process of redesigning health care systems and processes? What additional perspective do they provide? #patientchat
Richard Kreis @kreisr1
RT @patientchat: Time to start our topics. Here comes T1: #patientchat
Kevin J. Fowler @gratefull080504
Hi Kevin checking in from Chicago Patient Advocacy interests: spectrum of #kidneydisease #patientchat
The Advocate Is In @TheAdvocateIsIn
@jamienholloway Hi, Jamie! #patientchat
Christina Lizaso @btrfly12
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/orcg0zpcRH
Richard Kreis @kreisr1
RT @patientchat: T1: Why should patients and families be included in the process of redesigning health care systems and processes? What add…
Richard Zhao @richardzhao
Hello, everybody. Richard is here from Minneapolis. #patientchat
Jamie Holloway, PhD @jamienholloway
T1: Patients know what is important to them and what expectations of the patient are realistic. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: Why should patients and families be included in the process of redesigning health care systems and processes? What add…
Enlightening Results @GraceCordovano
@abrewi3010 Great to see you Alan! #patientchat
The II @Interventional2
We are joining in on the #patientchat to talk with Patient Empowerment @power4patients about including patients in healthcare. #withoutascalpel #FridayMotivation https://t.co/i2aNpymgqp
Christina Lizaso @btrfly12
RT @patientchat T1: Why should patients and families be included in the process of redesigning health care systems and processes? What additional perspective do they provide? #patientchat
Enlightening Results @GraceCordovano
@gratefull080504 Hi Kevin. Hope all is well! #patientchat
Richard Kreis @kreisr1
@patientchat Patients and families now what they need to feel 100% comfortable with the system. They are the missing link to a powerful system. #patientchat
Richard Kreis @kreisr1
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/orcg0zpcRH
Alan Brewington @abrewi3010
@GraceCordovano Good to see you too! #patientchat
Marcela Musgrove @marcela
Seems kind of obvious that as the end-users patients should have a say in the systems that are going to impact them #patientchat
Rheumatoid Patient @rheumpatient
@btrfly12 Thanks. Having probs. Will try that. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hi all, Shereese her in Maryland #Patientchat https://t.co/3aLcdOcDjW
Beth Morton @beth_morton
Hi everyone! Beth, joining from Vermont. Mostly lurking today. But I'm a patient and passionate #migraine advocate. #patientchat
Patient Chat @patientchat
RT @btrfly12: Note that the #patientchat in twitter seems off today. You might need to try joining the chat with a tool like https://t.co/P…
Christina Lizaso @btrfly12
@rheumpatient that isn't catching all tweets either, but catching more - what other chat tools are ppl having luck with today? #patientchat
Jamie Holloway, PhD @jamienholloway
@btrfly12 @rheumpatient I use tweetdeck. seems like it's working ok... #patientchat
Richard Kreis @kreisr1
RT @marcela: Hi all. I aspire to do UX and am involved with mental health and autism advocacy so am excited about today's topic #patientchat
Kevin J. Fowler @gratefull080504
T1: In the US healthcare has never been designed for patients Time to right the ship #patientchat https://t.co/WmyYtHqAIr
Dr Rheum @rheumdoctor
#EULARYoungPARE is looking committee members #patientchat #PatientAdvocate https://t.co/h2yRiZ0Uup
Anthony Leon @anthonynotleon
@EmMorgan27 @patientchat Love your answer Emily. Healthcare exists for the patients. Many times, the family is a big part of their care team. If the patient asks for it, they need to be involved, likewise should always be included in the design and workflow. #patientchat
Mighty Casey Quinlan @MightyCasey
T1: In 2018, to this group, the question sounds like something from Capt. Obvious. However, actual system-side culture still stuck in steampunk mashup with Jetsons mess. IOW, still not 21st cent thinking. #patientchat
Christina Lizaso @btrfly12
RT @gratefull080504: T1: In the US healthcare has never been designed for patients Time to right the ship #patientchat https://t.co/WmyYtHq…
The Advocate Is In @TheAdvocateIsIn
@jamienholloway And we can often see sides of a patient-focused project that a design or management team doesn't see. #patientchat
Barby Ingle 📣 @BarbyIngle
T1. patients & families should be included throughout all processes of redesigning healthcare because we need to have end-user tools that actually help us function better in r daily lives between appts We have to have buy-in to be/stay engaged in someone else's goals #patientchat https://t.co/4sYUKKX7Z1
Anthony Leon @anthonynotleon
@EmMorgan27 @patientchat T1: Love your answer Emily. Healthcare exists for the patients. Many times, the family is a big part of their care team. If the patient asks for it, they need to be involved, likewise should always be included in the design and workflow. #patientchat
Patient Critical Co-op @PatientCritical
T1: is the better question HOW can patients and families be included in redesigning health care systems & processes? #healthcare exists to make us well after all. A byproduct of patient #codesign? It save $ for biz & make system more sustainable for all. #patientchat
Rheumatoid Patient @rheumpatient
@jamienholloway @btrfly12 Will Google that. #patientchat
Mighty Casey Quinlan @MightyCasey
T1: further to previous, the "why" here is ... well, heck, I'll just quote myself, "if medicine isn't patient-centered, what is it even DOING?" #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T1. patients & families should be included throughout all processes of redesigning healthcare because we need to have end-u…
Alan Brewington @abrewi3010
T1 healthcare for people needs to be designed by humans, not the beast of #healthcare. QOL comes from human centered ideas. #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T1. patients & families should be included throughout all processes of redesigning healthcare because we need to have end-u…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1. patients & families should be included throughout all processes of redesigning healthcare because we need to have end-u…
Mary MACK @MaryOCMack
T1 patient input is much needed and too often absent. The culture of medicine needs to change. Real Patient input will help level the playing field. #patientchat
Patient Empowerment @power4patients
@gratefull080504 Agreed. Where do we start? #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/orcg0zpcRH #patientchat
Richard Kreis @kreisr1
RT @patientchat: Topic 2 (T2:) coming up...https://t.co/orcg0zpcRH #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T1 healthcare for people needs to be designed by humans, not the beast of #healthcare. QOL comes from human centered ideas.…
Patient Chat @patientchat
T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what point should they be consulted?, etc. #patientchat
Patient Critical Co-op @PatientCritical
T1: even the apocryphal stories of Henry Ford & Steve Jobs 'telling' people what they want ignore the reality of focus group testing & market research sorely missing from #healthcare ventures today. Reinvent with patients, or be doomed to costly changes later. #patientchat
Alan Brewington @abrewi3010
T1 if everyone is not included in #healthcare reform we will never leave paternalistic medicine. #patientchat
Richard Kreis @kreisr1
RT @patientchat: T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what…
Enlightening Results @GraceCordovano
@ShereesePubHlth Hi Shereese! Nice to see you! #patientchat
Mary MACK @MaryOCMack
RT @abrewi3010: T1 if everyone is not included in #healthcare reform we will never leave paternalistic medicine. #patientchat
Dr Mary Ann Wilmarth @Back2backPT
Hello Everyone - Looking forward to todays #patientchat Attending virtually from @RockportMA I am #DrofPT x35yrs but #patient of multiple #immune #autoimmunediseases now. #Advocate @Back2backPT @power4patients #patients2Bseenandheard :-) https://t.co/XDEVTVEQQU
Melissa VanHouten @melissarvh
T1 Try as they might, non (or sometimes) patients don't always know needs & goals of each illness community or indiv patient #patientchat
Kevin J. Fowler @gratefull080504
T1: #Patientcentered Healthcare policies are the foundation for #patientcentered design #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what…
Richard Kreis @kreisr1
RT @abrewi3010: T1 if everyone is not included in #healthcare reform we will never leave paternalistic medicine. #patientchat
Mighty Casey Quinlan @MightyCasey
T1: Not only does patient/family inclusion in treatment, and #RESEARCH (yaaasss), design improve framing, it also increases participation, adds PROs to outcome tally. Win/win, on fleek. #patientchat
Patient Empowerment @power4patients
@abrewi3010 What's the best way to get everyone involved without causing even more bottlenecks? #patientchat
Richard Kreis @kreisr1
@patientchat I agree with Alan’s comment. #patientchat
The II @Interventional2
What do patients prefer for the engagement process - through patient advocacy groups or direct with healthcare systems? #patientchat https://t.co/LeazEtFX3m
Christina Lizaso @btrfly12
RT @patientchat T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what point should they be consulted?, etc. #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: T1 if everyone is not included in #healthcare reform we will never leave paternalistic medicine. #patientchat
Savvy Co-op | #askpatients @savvy_coop
Hey all! It's Jen from Savvy Coop, we are a patient-owned co-op that helps companies and researchers connect with patients to #codesign new solutions - so this #patientchat is our jam! Sorry to jump in late!
Richard Zhao @richardzhao
RT @BarbyIngle: T1. patients & families should be included throughout all processes of redesigning healthcare because we need to have end-u…
Patient Critical Co-op @PatientCritical
T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what point should they be consulted? From square one, include #patients & #caregivers in every level of design, reform & delivery. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T2: How should patients and families be engaged? For example, how many should be consulted?, where to find them?, at what…
Christina Lizaso @btrfly12
RT @abrewi3010: T1 healthcare for people needs to be designed by humans, not the beast of #healthcare. QOL comes from human centered ideas.…
Jamie Holloway, PhD @jamienholloway
T2: Involve patients EARLY and OFTEN. They're important in the earliest research, trial design, and implementation. #patientchat
Kevin J. Fowler @gratefull080504
Both #patientchat https://t.co/zL5U7iC9qf
Richard Zhao @richardzhao
@BarbyIngle Great ponit! #patientchat
HealthSparq @HealthSparq
Whew! Got sidetracked but here for #patientchat from a stilly snowy #PDX! Hi everyone! https://t.co/CfGZukC4B3
Christina Lizaso @btrfly12
RT @anthonynotleon: @EmMorgan27 @patientchat T1: Love your answer Emily. Healthcare exists for the patients. Many times, the family is a bi…
HealthSparq @HealthSparq
RT @btrfly12: RT @patientchat T2: How should patients and families be engaged? For example, how many should be consulted?, where to find th…
Richard Kreis @kreisr1
RT @power4patients: @abrewi3010 What's the best way to get everyone involved without causing even more bottlenecks? #patientchat
Alan Brewington @abrewi3010
@power4patients Going back to basics. Putting more emphasis on a human connection vs a computer connection. #patientchat
Barby Ingle 📣 @BarbyIngle
T2. Patients & families should be engaged, 1st in their personal care options, understanding their disease, then clinical trials, treatment options, setting up at home time saver tools, learn what meds do, research, All aspects of care are important, learn as you can #patientchat https://t.co/xcNh0wDBRc
Richard Kreis @kreisr1
RT @btrfly12: RT @patientchat T2: How should patients and families be engaged? For example, how many should be consulted?, where to find th…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T2. Patients & families should be engaged, 1st in their personal care options, understanding their disease, then clinical t…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T2. Patients & families should be engaged, 1st in their personal care options, understanding their disease, then clinical t…
Enlightening Results @GraceCordovano
T1: A majority of the #healthcare arena is based on assumptions of what is valuable to patients. Asking & obtaining facts & lived experience needs to become cornerstone. Building on assumptions leads to failure & shortcomings that are too costly to fix #patientchat https://t.co/fJE4lDYUka
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T2. Patients & families should be engaged, 1st in their personal care options, understanding their disease, then clinical t…
The Advocate Is In @TheAdvocateIsIn
@power4patients @abrewi3010 Incorporate patients from start to finish? Like adding them (us) as if we were another coder or program manager, as integral part of the team building the system as anybody else. #patientchat
Christina Lizaso @btrfly12
RT @jamienholloway: T2: Involve patients EARLY and OFTEN. They're important in the earliest research, trial design, and implementation. #pa
Richard Kreis @kreisr1
RT @ShereesePubHlth: Hi all, Shereese her in Maryland #Patientchat https://t.co/3aLcdOcDjW
Mighty Casey Quinlan @MightyCasey
Agree ferociously with @abrewi3010 re patient directed healthcare = only pathway to ending paternalism, and its terrible children "compliance" and "adherence." Only path to nirvana is PARTICIPATION. #patientchat
Kevin J. Fowler @gratefull080504
T2: It starts and ends with policy This is the strategy foundation #patientchat https://t.co/JjX9Bz9UDU
Dr Mary Ann Wilmarth @Back2backPT
Great to see this! Not sure that I qualify with the word "young" in there although I am definitely young at heart <3 ! #patientchat @Back2backPT #EULARYoungPARE #PatientAdvocate :-) https://t.co/RKmPGjTnvX
Richard Kreis @kreisr1
RT @HealthSparq: Whew! Got sidetracked but here for #patientchat from a stilly snowy #PDX! Hi everyone! https://t.co/CfGZukC4B3
Richard Kreis @kreisr1
RT @anthonynotleon: @EmMorgan27 @patientchat T1: Love your answer Emily. Healthcare exists for the patients. Many times, the family is a bi…
Patient Critical Co-op @PatientCritical
T2: How should patients and families be engaged? Include multiple voices to avoid unconscious selection biases. Bake the service user/consumer/patient into the DANA of your offering. Include time, money, resources & education. Hard work, but everyone profits. #patientchat
Mighty Casey Quinlan @MightyCasey
@QuinlanTurner #patientchat https://t.co/TshqJ5tNg5
Mary MACK @MaryOCMack
T2. Make sure patients can attend conferences. Many patients with chronic conditions can't afford travel and lodging. Pharma Companies, etc. can afford to pay for patients to attend. #patientchat
Rheumatoid Patient @rheumpatient
Sorry, going to have to give up on this chat today as I can't see most tweets on any chat platform. Will join you next time. #patientchat
Patient Critical Co-op @PatientCritical
T2: How should patients and families be engaged? Include multiple voices to avoid unconscious selection biases. Bake the service user/consumer/patient into the DNA of your offering. Include time, money, resources & education. Hard work, but everyone profits. #patientchat
Enlightening Results @GraceCordovano
@HealthSparq Welcome! Glad you braved the elements to get here. #dedicated #patientchat
Kevin J. Fowler @gratefull080504
Well said @GraceCordovano #patientchat https://t.co/euiYrK5img
Savvy Co-op | #askpatients @savvy_coop
T1: Patients and caregivers are experts on their experiences, you don't get that insight from a textbook, it comes from lived experiences. When patients/caregivers bring that expertise and work with those in other fields they can create solutions that actually matter #patientchat https://t.co/32tSl4589Q
The II @Interventional2
#patientchat - important to hear the patient perspective on this. https://t.co/U2wBsBX0bs
Patient Empowerment @power4patients
@abrewi3010 Agree in principle but we are living in the "Digital Age" so it's easier said than done. Thoughts? #patientchat
Enlightening Results @GraceCordovano
@savvy_coop Hi Jen!! Need you here! #patientchat
Richard Kreis @kreisr1
Sorry need to run, doctors calling me in early. #patientchat
Jamie Holloway, PhD @jamienholloway
T2: Patients should be engaged as collaborators, not tokens. Their input should be respected, acted on when appropriate, and they should be compensated appropriately. #patientchat
Richard Zhao @richardzhao
T2: Contribute a couple hours of time will help startup like us. We are facing challenges to have more patients or consumers to volunteers 2 hours time only to improve our technology for consumers #patientchat
Patient Empowerment @power4patients
RT @GraceCordovano: T1: A majority of the #healthcare arena is based on assumptions of what is valuable to patients. Asking & obtaining fac…
HealthSparq @HealthSparq
YESSSS!!! #WTFix #PatientChat https://t.co/wvKTXHrADi
Patient Critical Co-op @PatientCritical
Absolutely, but the benefits of considering patients aren't just ethical or kind: businesses make more money, period, when they align their profit with #valuebasedcare #patientchat https://t.co/6h4zu0Pwl4
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/orcg0zpcRH #patientchat
Mighty Casey Quinlan @MightyCasey
T2: Best place to start is in patient/condition communities that are science-based and well-moderated. We are, by the way, legion. #patientchat
Shefali Haldar @shefali_h
RT @GraceCordovano: T1: A majority of the #healthcare arena is based on assumptions of what is valuable to patients. Asking & obtaining fac…
Mighty Casey Quinlan @MightyCasey
RT @jamienholloway: T2: Patients should be engaged as collaborators, not tokens. Their input should be respected, acted on when appropriate…
Melissa VanHouten @melissarvh
T2 From pre-design on. Patients should have input re symptom-focus, treatment goals & hardships, obstacles 2 participation, etc #patientchat
Enlightening Results @GraceCordovano
T2: I would recommend start discussions with patients & care partners first, then add others. Planning a conference: start w/patient speakers/panels 1st. Building an ad board: patients first. They shouldn't be the final hail mary at the end. #patientchat https://t.co/1mWtAYLRwj
Patient Chat @patientchat
T3: What elements must be incorporated to create a successful patient-centered system or process? #patientchat
Amanda @LAlupusLady
RT @HealthSparq: YESSSS!!! #WTFix #PatientChat https://t.co/wvKTXHrADi
Jamie Holloway, PhD @jamienholloway
Anytime anyone asks where to find educated, engaged advocates, I point them straight to twitter! #patientchat https://t.co/GICP3FCC6G
Alan Brewington @abrewi3010
@power4patients Technology only works if everyone has access & it continues basic human centerness. If digital doesn’t mean this bar then it’s bad paternalistic digital. #patientchat
Sandi Oelhaupl @sandioelhaupl
RT @GraceCordovano: T1: A majority of the #healthcare arena is based on assumptions of what is valuable to patients. Asking & obtaining fac…
Patient Empowerment @power4patients
RT @patientchat: T3: What elements must be incorporated to create a successful patient-centered system or process? #patientchat
Quin Turner @QuinlanTurner
@patientchat A2. They need to be aware that they have a say in this process and their input can drive + change. Pts don't always see illness as a source of power but demonstrating that it is can be very effective. Consult as many as possible, as often as possible. Ongoing process #patientchat
Savvy Co-op | #askpatients @savvy_coop
T1: healthcare has notoriously been a B2B model, but with the transition to patient-centricity & #valuebasedcare it is paramount that we work with those affected by health conditions and the system so understand what value means to them. Otherwise what are we doing? #patientchat
Melissa VanHouten @melissarvh
T2 And that input should be meaningful & taken seriously by all involved - not lip service or PR for the players involved #patientchat
Enlightening Results @GraceCordovano
@jamienholloway Agreed. Continuity is key and preferred to a single touchpoint. Update patients & care partners on outcomes from their interactions and contributions at end of initiatives/engagements. #patientchat
HealthSparq @HealthSparq
@btrfly12 Yeah, definitely having some weird connection issues! #PatientChat
The II @Interventional2
The Interventional Initiative is a non-profit with a mission to empower patients with more information about treatment options using Minimally Invasive Image guided procedures. We want patients to tell us what they know and prefer! https://t.co/jzSq2vybPI #patientchat https://t.co/ajkNTFKvYt
Kevin J. Fowler @gratefull080504
Yes #patientchat https://t.co/7WWjLT4Wit
Alan Brewington @abrewi3010
T2 engagement begins when quality of life changes. These 2 must work together. #patientchat
Patient Critical Co-op @PatientCritical
Disagree there is meaningful difference between 'real life' and digital alignment of service offerings with #valuebasedcare. #patientengagement is crucial in both and the tools change but not the strategy or benefits of inclusion #patientchat https://t.co/toiwqdSsSE
Savvy Co-op | #askpatients @savvy_coop
T2: twitter does not give me enough characters for this one #patientchat
Richard Zhao @richardzhao
T2: Take actions is the key for any changes will happen for #Patients #patientchat
FrancieGrace @FrancieGrace
RT @jamienholloway: T2: Patients should be engaged as collaborators, not tokens. Their input should be respected, acted on when appropriate…
Marcela Musgrove @marcela
T2: Patients and their families can be brought in during both formative design process and for usability testing. #patientchat
Christina Lizaso @btrfly12
RT @patientchat T3: What elements must be incorporated to create a successful patient-centered system or process? #patientchat
Marilee Kujat @cinvmak
RT @HealthSparq: YESSSS!!! #WTFix #PatientChat https://t.co/wvKTXHrADi
Your GPS Doc, LLC @yourgpsdoc
Joining late. Hello everyone! Nicole Rochester of Your GPS Doc. #patientchat
FrancieGrace @FrancieGrace
RT @jamienholloway: Anytime anyone asks where to find educated, engaged advocates, I point them straight to twitter! #patientchat https://t…
Christina Lizaso @btrfly12
@kreisr1 Have a good weekend :) #patientchat
Mighty Casey Quinlan @MightyCasey
@jamienholloway And as if she was reading our mail, look what landed this week from @Lygeia https://t.co/oW4OecLNom #FYPM #patientchat
FrancieGrace @FrancieGrace
RT @jamienholloway: T2: Involve patients EARLY and OFTEN. They're important in the earliest research, trial design, and implementation. #pa
Enlightening Results @GraceCordovano
@abrewi3010 @power4patients Tech needs to be utilized to enhance care and engagement methods. But to Alan's point, must be accessible and provided. Otherwise, fostering lack of diversity #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@GraceCordovano @jamienholloway Single touch points are so important and not at all hard to implement policies. Orgs need to get this right, like yesterday #patientchat
FrancieGrace @FrancieGrace
RT @jamienholloway: T1: Patients know what is important to them and what expectations of the patient are realistic. #patientchat
Jamie Holloway, PhD @jamienholloway
T3: Easy answer: incorporate PATIENTS into the process to get it to be patient-centered! #patientchat
Kevin J. Fowler @gratefull080504
Sorry @savvy_coop Define #patientcentricity I think it is a buzz word #patientchat https://t.co/Vo3HAri0Oz
Savvy Co-op | #askpatients @savvy_coop
T2 I want to say that patients should be engaged from preconception of an initiative, but the reality that is not always the case, and so there are places and times for all levels of engagement. #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T2: I would recommend start discussions with patients & care partners first, then add others. Planning a conference: st…
Patient Critical Co-op @PatientCritical
Absolutely. Action destroys the tokenism of rhetoric. Make a change, make a plan, don't wait for a perfect confluence events to begin. #patientchat https://t.co/Wtce16Yah2
Christina Lizaso @btrfly12
RT @savvy_coop: T2 I want to say that patients should be engaged from preconception of an initiative, but the reality that is not always th…
Christina Lizaso @btrfly12
RT @ShereesePubHlth: @GraceCordovano @jamienholloway Single touch points are so important and not at all hard to implement policies. Orgs n…
Mighty Casey Quinlan @MightyCasey
@jamienholloway And do not forget our friends at @symplur and their @healthhashtags !! Helps cut thru the chaff, get straight to the wheat (even for the gluten intolerant!) #patientchat
Richard Zhao @richardzhao
RT @abrewi3010: @power4patients Technology only works if everyone has access & it continues basic human centerness. If digital doesn’t mean…
Savvy Co-op | #askpatients @savvy_coop
T2 we need diverse perspectives, so it can't always be the same patients engaged at every juncture, getting patient insights via surveys, focus groups, interviews, user-testing are also valuable ways to cast a wider net #patientchat
Heather McCullen @H_SalemOaks
RT @jamienholloway: T2: Patients should be engaged as collaborators, not tokens. Their input should be respected, acted on when appropriate…
Kevin J. Fowler @gratefull080504
@btrfly12 1) Patient Centered Policies 2) Patient Voice Strategy not Tactics 3) Senior Leadership Buy In #patientchat https://t.co/RNSgZS0R7k
@MedicineGov 🚑🔬🌐 🇬🇧 @medicinegov
RT @savvy_coop: T1: healthcare has notoriously been a B2B model, but with the transition to patient-centricity & #valuebasedcare it is para…
Christina Lizaso @btrfly12
RT @melissarvh: T2 And that input should be meaningful & taken seriously by all involved - not lip service or PR for the players involved #…
Christina Lizaso @btrfly12
RT @savvy_coop: T1: healthcare has notoriously been a B2B model, but with the transition to patient-centricity & #valuebasedcare it is para…
The II @Interventional2
RT @savvy_coop: T2 we need diverse perspectives, so it can't always be the same patients engaged at every juncture, getting patient insight…
Your GPS Doc, LLC @yourgpsdoc
T3: Involve patients on the front end from the BEGINNING. Put patients on advisory boards and actually listen to what they have to say and incorporate their feedback. #patientchat https://t.co/psAbNJG0Z9
Alan Brewington @abrewi3010
T3 quality of life must be the first metric to judge patient centered care from. Quality of life takes us back to human centered caring first. #patientchat
Enlightening Results @GraceCordovano
@btrfly12 @patientchat Move towards human-centered is stronger. For example, can't just benefit the patient & burnout the physician. We must strive for compassion, kindness, bridging silos, connections w/resources, leverage tech to enhance care. #patientchat
Jamie Holloway, PhD @jamienholloway
I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need to review the science or processes to make sure that they're in line with patient needs. #patientchat https://t.co/VwqaomurNe
Barby Ingle 📣 @BarbyIngle
T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to be the team lead & use their providers as tools not the only resource. Patients - Fill your tool box & have realistic goals w good communication #patientchat https://t.co/BEVt7opdB8
HealthSparq @HealthSparq
RT @btrfly12: RT @patientchat T3: What elements must be incorporated to create a successful patient-centered system or process? #patientchat
Enlightening Results @GraceCordovano
RT @savvy_coop: T2 we need diverse perspectives, so it can't always be the same patients engaged at every juncture, getting patient insight…
HealthSparq @HealthSparq
RT @GraceCordovano: @btrfly12 @patientchat Move towards human-centered is stronger. For example, can't just benefit the patient & burnout t…
Savvy Co-op | #askpatients @savvy_coop
T2 We actually blogged about #patientengagement this week, that it must be continuous, not a one and done thing. Can read thoughts here: https://t.co/2cYyHUEsWo #patientchat https://t.co/FWnSEAtjaK
Melissa VanHouten @melissarvh
T3 Real-life hardships/obstacles patients face (mental, physical, emotional, financial) & discussion of genuine solutions. #patientchat
Richard Zhao @richardzhao
T2: Need more consumers to participate in some form of actions. Only patients advocates' efforts won't be enough to change for patients #patientchat
Patient Empowerment @power4patients
RT @abrewi3010: T3 quality of life must be the first metric to judge patient centered care from. Quality of life takes us back to human cen…
Christina Lizaso @btrfly12
RT @savvy_coop: T1: Patients and caregivers are experts on their experiences, you don't get that insight from a textbook, it comes from liv…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to…
ShereeseM, MS/MBA @ShereesePubHlth
RT @jamienholloway: I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to…
Marcela Musgrove @marcela
RT @yourgpsdoc: T3: Involve patients on the front end from the BEGINNING. Put patients on advisory boards and actually listen to what they…
The Advocate Is In @TheAdvocateIsIn
T3: Of course incorporate patient input, but more than that, we need to feel like we're heard not just in what affects our diseases, but in how our diseases affect our whole lives. #patientchat
Richard Zhao @richardzhao
RT @melissarvh: T2 And that input should be meaningful & taken seriously by all involved - not lip service or PR for the players involved #…
Christina Lizaso @btrfly12
RT @jamienholloway: T2: Patients should be engaged as collaborators, not tokens. Their input should be respected, acted on when appropriate…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to…
Alan Brewington @abrewi3010
T3 healthcare must become a human right, not a checkbook right. #patientchat
Mighty Casey Quinlan @MightyCasey
@gratefull080504 @savvy_coop I also have come to see #valuebasedcare as code for "what can we get away with, price-gouging-wise, 'cause it's evidence-based tx" - srsly, it all boils down to those feverishly holding on to their slice of $3.5T/yr medical $$ pie. #patientchat
Patient Chat @patientchat
RT @BarbyIngle: T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to…
Enlightening Results @GraceCordovano
@gratefull080504 @savvy_coop https://t.co/ajuMpldv0j #patientchat
HealthSparq @HealthSparq
@GraceCordovano @btrfly12 @patientchat Silos still need so much breaking-down, great points @GraceCordovano #PatientChat
Anthony Leon @anthonynotleon
@btrfly12 @patientchat T3 - If you're trying to reach/educate patients, make sure you are doing it where their attention is. If they are glued to their phone/SoMe, be sure to have a way to connect on there for them. #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T1: A majority of the #healthcare arena is based on assumptions of what is valuable to patients. Asking & obtaining fac…
Maureen @netzermo
RT @BarbyIngle: T3. We must have team communication to have successful empowered patients in a patient-centered system. The patient has to…
Marcela Musgrove @marcela
RT @jamienholloway: I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need…
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/orcg0zpcRH #patientchat
Carissa B. Caramanis @carissao
Simplest mantra for #patientengagement - Early & often! #patientchat https://t.co/GMehONlrSI
Alan Brewington @abrewi3010
RT @savvy_coop: T2 We actually blogged about #patientengagement this week, that it must be continuous, not a one and done thing. Can read t…
Christina Lizaso @btrfly12
RT @gratefull080504: @btrfly12 1) Patient Centered Policies 2) Patient Voice Strategy not Tactics 3) Senior Leadership Buy In #patientcha
Mighty Casey Quinlan @MightyCasey
THIS. ALL. DAY. #rightcare #healthcarematters #patientchat https://t.co/x5zXsDdkan
Patient Critical Co-op @PatientCritical
T2: Quality of life must come before a care provider's preference for treatment, or profit models for businesses or even long term #Sustainability of the system. People come before the operation system of #healthcare or they don't materially matter at all #patientchat https://t.co/yyxnhhYwPL
Mary MACK @MaryOCMack
T3. The culture of medicine needs radical change. If it remains unchanged, not much will REALLY change #patientchat
Richard Zhao @richardzhao
RT @PatientCritical: Absolutely. Action destroys the tokenism of rhetoric. Make a change, make a plan, don't wait for a perfect confluence…
Savvy Co-op | #askpatients @savvy_coop
T2 And as to where to find patients for #codesign...well we humbly suggest you check out our fabulous co-op of patients who are at the ready to help companies with just this! And hope you'll join us! https://t.co/6owHnEOcPa #patientchat
Enlightening Results @GraceCordovano
@anthonynotleon @btrfly12 @patientchat Must meet patients & care partners where they are! Silly not to. #patientchat
Quin Turner @QuinlanTurner
@patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts in our disease and our care. It's easy to get intimidated with so many brilliant docs but a sense of equal footing and value created from both sides is crucial #patientchat
Patient Chat @patientchat
T4: Different patients want different things, so how can all pts’ needs be met? Is it possible? If not, what is the compromise? #patientchat
Patient Critical Co-op @PatientCritical
#patientchat We need everyone talking and building together https://t.co/4Q7wNjQ9Te
PatientOrator @PatientOrator
#empathy in health care"My parents are in their 90's, they've had a difficult time, sometimes they R treated insignificantly. There could be a little bit more understanding when it comes to the elderly, theres room for improvement there" Lamar #patientchat https://t.co/jAh7X4ZNg2
Patient Empowerment @power4patients
RT @patientchat: T4: Different patients want different things, so how can all pts’ needs be met? Is it possible? If not, what is the compro…
Christina Lizaso @btrfly12
RT @patientchat T4: Different patients want different things, so how can all pts’ needs be met? Is it possible? If not, what is the compromise? #patientchat
Laurus @LaurusT001
RT @PatientOrator: #empathy in health care"My parents are in their 90's, they've had a difficult time, sometimes they R treated insignifica…
Mighty Casey Quinlan @MightyCasey
T3: Patients on the core team, from the beginning, for everything. Lather/rinse/repeat. #thatisall #patientchat
Patient Empowerment @power4patients
RT @GraceCordovano: @anthonynotleon @btrfly12 @patientchat Must meet patients & care partners where they are! Silly not to. #patientchat
Kevin J. Fowler @gratefull080504
Is this an advertisement ? #patientchat https://t.co/sk2oszHUsK
Heather McCullen @H_SalemOaks
RT @QuinlanTurner: @patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts…
Savvy Co-op | #askpatients @savvy_coop
@MightyCasey @gratefull080504 When it comes to people talking about #valuebasedcare....I always ask them to define value to who? Let's be explicit and transparent about who we think should see value. #patientchat
Savvy Co-op | #askpatients @savvy_coop
RT @jamienholloway: I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need…
Richard Zhao @richardzhao
T3: Patients have to be vocal, even put comments on #socialmedia about experience on clinics, systems or providers will be a good start #patientchat
Christina Lizaso @btrfly12
RT @MightyCasey: T3: Patients on the core team, from the beginning, for everything. Lather/rinse/repeat. #thatisall #patientchat
Dr Mary Ann Wilmarth @Back2backPT
A1 #Patients & # Family should be involved w/ # design from beginning because it completely impacts their lives when #system doesn't work‼️ I am barely living proof of that... Start w/ #EMR Not made 4 MDs pts Rarely correct inclusive @Back2backPT @power4patients #patientchat https://t.co/BjBYqW5Eah
Enlightening Results @GraceCordovano
@QuinlanTurner @patientchat Cultural transformation of medicine from paternalistic to shared decision making as well as recognition of importance of fostering trusting relationships is critical #patientchat
Patient Critical Co-op @PatientCritical
Nothing ever changes unless a core group take a risk... ...and a grassroots movement takes that ball and runs with it, not just the advocates. Public discussion, momentum is crucial. Not just the same voices. #patientchat https://t.co/smh3uXoZsd
Jamie Holloway, PhD @jamienholloway
T4: Incorporating PROs or other steps into protocols that encourage LISTENING to a patient & acting on their feedback are important. My priorities may not be the same as your priorities. #patientchat
Cristy St John @cristystjohn
RT @savvy_coop: T1: healthcare has notoriously been a B2B model, but with the transition to patient-centricity & #valuebasedcare it is para…
The II @Interventional2
We believe it is the responsibility of healthcare professionals & disease specific advocacy groups to present medical information in comprehensible ways so that the public does understand and can fully participate in the process, treatment options and the care plan. #patientchat https://t.co/s88XUU97SQ
HealthSparq @HealthSparq
So well said & so true! #Patients can offer perspectives, skills, and expertise on EVERYTHING in #healthcare because patients are a hugely diverse & skilled group of people. #PatientChat https://t.co/xNuyIB4uVf
Alan Brewington @abrewi3010
A3 we must raise our healthcare literacy rate, comprehension, and language skills. We need better communication between all parties. #patientchat
Mighty Casey Quinlan @MightyCasey
Sorry, guys, gotta bail - meetings and deadlines! Fridays are ALWAY insanity 'round my world 😱😱😱 #patientchat
Marcela Musgrove @marcela
#t4 That's a tough issue in mental health. Some people are well served by medical model/treatment while other identify as psychiatric survivors and disengage from system altogether. Hard to include all voices #patientchat
Savvy Co-op | #askpatients @savvy_coop
@jamienholloway 100%! We NEED diverse opinions, not everyone needs a PhD (says the person with a PhD here), that is not what makes someone an expert on their experiences, and we want to give them a variety of outlets to share. #patientchat
Christina Lizaso @btrfly12
RT @jamienholloway: I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need…
Mighty Casey Quinlan @MightyCasey
RT @jamienholloway: T4: Incorporating PROs or other steps into protocols that encourage LISTENING to a patient & acting on their feedback a…
Richard Zhao @richardzhao
T3: If patients do not bring transparency to the system, nobody will. The more transparent, the less confussion or over-charged bills. #patientchat
Kevin J. Fowler @gratefull080504
T4: My bible is the Institute of Medicine Report: Crossing the Quality Chasm #patientcentered care take into account patient preferences Patients must drive policy #patientchat https://t.co/Q1g5MB4Wdz
Mighty Casey Quinlan @MightyCasey
RT @richardzhao: T3: Patients have to be vocal, even put comments on #socialmedia about experience on clinics, systems or providers will be…
Your GPS Doc, LLC @yourgpsdoc
T4: Great point and this certainly adds to the complexity. Each patient’s perspective is important and should be considered when designing solutions. Ultimately, must work toward being as inclusive as possible. #patientchat https://t.co/89Aq0C31Qr
HealthSparq @HealthSparq
RT @savvy_coop: @jamienholloway 100%! We NEED diverse opinions, not everyone needs a PhD (says the person with a PhD here), that is not wh…
Carly by Nature @SynceNerd_Carli
RT @richardzhao: T3: Patients have to be vocal, even put comments on #socialmedia about experience on clinics, systems or providers will be…
Your GPS Doc, LLC @yourgpsdoc
RT @savvy_coop: T2 And as to where to find patients for #codesign...well we humbly suggest you check out our fabulous co-op of patients who…
Carly by Nature @SynceNerd_Carli
RT @jamienholloway: T4: Incorporating PROs or other steps into protocols that encourage LISTENING to a patient & acting on their feedback a…
Christina Lizaso @btrfly12
RT @QuinlanTurner: @patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts…
Your GPS Doc, LLC @yourgpsdoc
RT @QuinlanTurner: @patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts…
The II @Interventional2
@abrewi3010 agree! Everyone can take part in improved healthcare literacy. #patientchat https://t.co/Hs9fDDte5F
Enlightening Results @GraceCordovano
T4: Prioritize building trust in relationships. Embracing listening. Practicing kinds and compassion. Patients & their families need to feel heard, valued, safe, and supported. #patientchat https://t.co/HofXkTvGu8
Carly by Nature @SynceNerd_Carli
RT @HealthSparq: So well said & so true! #Patients can offer perspectives, skills, and expertise on EVERYTHING in #healthcare because patie…
Patient Critical Co-op @PatientCritical
@GraceCordovano @QuinlanTurner @patientchat Exactly...we need to each of us find a way to build the momentum outside of our silo's. We always cite @MADDOnline for an example of interested parties changing the societal view of an issue. We need to reach people where they live & caregive #patientchat
Quin Turner @QuinlanTurner
@patientchat A4. I think this is why we need to consult as many pts as possible. There will be VERY distinct themes about where change needs to happen first. From there I guarantee many of the less common themes will be related to those primaries making them easier to approach #patientchat
Melissa VanHouten @melissarvh
T4 Likely not possible but can attempt 2 hear various segments. Pt reps can often be voice 4 many. Never perfect representation #patientchat
Kevin J. Fowler @gratefull080504
@richardzhao Yes #patientchat https://t.co/ii58DNCiVg
Savvy Co-op | #askpatients @savvy_coop
T4 I think it's important to step out of our own echo chambers and ask diverse patients what they want, and then work together to provide those opportunities. I think as patient advocates, we can also fall victim to thinking we know the whole community's needs. #patientchat
Mighty Casey Quinlan @MightyCasey
@savvy_coop @gratefull080504 OOOOOO, that's a can o'worms. Attend some guidelines conferences to have a real "tear own face off with rusty cheese grater" party. Guidelines are important, but in era of #PrecisionMedicine ... YMMV. #PatientChat
Christina Lizaso @btrfly12
RT @Interventional2: We believe it is the responsibility of healthcare professionals & disease specific advocacy groups to present medical…
Barby Ingle 📣 @BarbyIngle
T4. Individualized medicine There is never going to be a one size fits all When we move to a patient-centered approach & TX each person as they are then we will see better outcomes The TXs that work for me dont work for all with same diseases due to genetics & enviro #patientchat https://t.co/oE0jBpUSkR
Your GPS Doc, LLC @yourgpsdoc
RT @GraceCordovano: @QuinlanTurner @patientchat Cultural transformation of medicine from paternalistic to shared decision making as well as…
Alan Brewington @abrewi3010
T4 all humans want a higher quality of life. If we treat humans, not symptoms, we can improve everyone’s lives. #patientchat
Christina Lizaso @btrfly12
RT @HealthSparq: So well said & so true! #Patients can offer perspectives, skills, and expertise on EVERYTHING in #healthcare because patie…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T4. Individualized medicine There is never going to be a one size fits all When we move to a patient-centered approach & TX…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T4. Individualized medicine There is never going to be a one size fits all When we move to a patient-centered approach & TX…
Richard Zhao @richardzhao
T3: Even patients start sharing their expereince on a public space, for example #socialmedia , it will bring changes. #PatientSentiment #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T4. Individualized medicine There is never going to be a one size fits all When we move to a patient-centered approach & TX…
ShereeseM, MS/MBA @ShereesePubHlth
@savvy_coop @MightyCasey @gratefull080504 Exactly. If you ask 20 ppl, you'll get 20 answers regarding the definition of healthcare "value" . This speaks to #PrecisionMedicine and the idea that patients be seen as collaborators, not studies #patientchat
HealthSparq @HealthSparq
RT @btrfly12: RT @patientchat T4: Different patients want different things, so how can all pts’ needs be met? Is it possible? If not, what…
Lisa Davis Budzinski @lisadbudzinski
Trying to follow #patientchat & #raredisease while packing to leave in the morning for @RareAdvocates #raredisease week in D.C. where I finally get to meet my colleague/partner @Cpnervecenter @bbhomebody IRL!! https://t.co/HjdtppgDKK
Richard Zhao @richardzhao
RT @gratefull080504: @richardzhao Yes #patientchat https://t.co/ii58DNCiVg
Savvy Co-op | #askpatients @savvy_coop
@MightyCasey @gratefull080504 You're not one to shy away from a can'o'worms convo :) Gotta have the convos. #patientchat
Mary MACK @MaryOCMack
T4 navigating the labyrinth of healthcare is a major challenge It should not be so hard. I think every patient wants that. And Doctors need to talk to each other about their patients in common. #patientchat
Enlightening Results @GraceCordovano
@HealthSparq I always point out: patient is not synonymous with stupid, weak, or helpless. People with a diagnosis have an incredible, sometimes untouchable, set of lifeskills. #patientchat
Patient Critical Co-op @PatientCritical
We need to have a touchstone issue like @MADDOnline found in 'don't drink and drive'. Need a way to strike a nerve that makes people care about #healthcare before they're sick & churning thru the system. Only way to effect policy is activate a majority to care. #patientchat
The II @Interventional2
RT @MaryOCMack: T4 navigating the labyrinth of healthcare is a major challenge It should not be so hard. I think every patient wants that…
Alan Brewington @abrewi3010
T4 healthcare that’s a human right brings down most of the greatest access barriers we have today. #patientchat
Kevin J. Fowler @gratefull080504
Have to run Have a good weekend and thanks for the chance to participate #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @savvy_coop: T4 I think it's important to step out of our own echo chambers and ask diverse patients what they want, and then work toget…
Marcela Musgrove @marcela
RT @savvy_coop: T1: Patients and caregivers are experts on their experiences, you don't get that insight from a textbook, it comes from liv…
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/orcg0zpcRH #patientchat
Melissa VanHouten @melissarvh
T4 Make it easier & more convenient 4 patients to participate - cost barriers & physical limitations must be overcome. #patientchat
HealthSparq @HealthSparq
@QuinlanTurner @patientchat Love it! Breaking things down into digestible issues to tackle by finding the themes that are shared! #PatientChat
Savvy Co-op | #askpatients @savvy_coop
@verylightnosuga This is very very true. Already engaged. But it may be a start. And those who are already activated can work with their communities as well. We must do better, but there will be inherent bias to begin. #patientchat
Jim Myers @kidneystories
RT @gratefull080504: Hi Kevin checking in from Chicago Patient Advocacy interests: spectrum of #kidneydisease #patientchat
Christina Lizaso @btrfly12
re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Richard Zhao @richardzhao
Thanks for the mention! gratefull080504: @richardzhao Yes #patientchat https://t.co/855zoeQtra
Savvy Co-op | #askpatients @savvy_coop
RT @ShereesePubHlth: @savvy_coop @MightyCasey @gratefull080504 Exactly. If you ask 20 ppl, you'll get 20 answers regarding the definition o…
Jim Myers @kidneystories
RT @gratefull080504: T1: In the US healthcare has never been designed for patients Time to right the ship #patientchat https://t.co/WmyYtHq…
Jamie Holloway, PhD @jamienholloway
@ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me, respect my time, listen to me, help me understand. Those work in all situations, & will begin to address the individualized needs. #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A1 #patientchat You can't completely isolate any medical problem from the person who has it nor their environment, their social environment being their families & friends,without them a truly actionable treatment plan shouldn't be made because it would hurt the person not malady. https://t.co/vsOzhndlfO
Patient Chat @patientchat
T5: Is there a specific example of a system or process that was changed or designed because of patients? #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T5: Is there a specific example of a system or process that was changed or designed because of patients? #patientchat
Becky Brandt RN @bbhomebody
@lisadbudzinski @RareAdvocates @Cpnervecenter DITTO what @lisadbudzinski said. I'm on West Coast packing too. Cant wait to meet IRL. 🖒😀 #patientchat
Jim Myers @kidneystories
RT @richardzhao: T3: If patients do not bring transparency to the system, nobody will. The more transparent, the less confussion or over-ch…
ShereeseM, MS/MBA @ShereesePubHlth
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
Alan Brewington @abrewi3010
T4 reduce the paperwork storm in healthcare so patients don’t have to live through the sick experience twice. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: Is there a specific example of a system or process that was changed or designed because of patients? #patientchat
Christina Lizaso @btrfly12
@lisadbudzinski I hope @RareAdvocates goes well - thanks for all you do to advocate for patients :) #patientchat
HealthSparq @HealthSparq
RT @btrfly12: re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: @lisadbudzinski @RareAdvocates @Cpnervecenter DITTO what @lisadbudzinski said. I'm on West Coast packing too. Cant wait to…
Patient Critical Co-op @PatientCritical
T4: Different patients want different things, so how can all pts’ needs be met? This is why we need groups organized around issue specific groups, research specific groups & national issues affecting all patients. And keep communicating between groups. #patientchat
Christina Lizaso @btrfly12
RT @patientchat T5: Is there a specific example of a system or process that was changed or designed because of patients? #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @btrfly12: re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Christina Lizaso @btrfly12
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
Your GPS Doc, LLC @yourgpsdoc
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
Enlightening Results @GraceCordovano
RT @btrfly12: re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Savvy Co-op | #askpatients @savvy_coop
@jamienholloway @ShereesePubHlth @MightyCasey @gratefull080504 You're in my head!!! YES. their individual experiences may differ, but at the end of the day we are all humans who want to be heard, valued and respected. #patientchat
HealthSparq @HealthSparq
RT @btrfly12: RT @patientchat T5: Is there a specific example of a system or process that was changed or designed because of patients? #pat
ShereeseM, MS/MBA @ShereesePubHlth
T5 Preregistration tech was introduced b/c of patients. The innovation is designed to reduce wait times & cut down on transactional inefficiencies #API #patientchat
Lisa Davis Budzinski @lisadbudzinski
@btrfly12 @RareAdvocates Awww thank you for that Christina💕💕💕 Its going to be hard for us as #intractable #pain #patients but it needs to be done✨ #patientchat
M-J Sharp @hipsterlife85
RT @abrewi3010: T1 if everyone is not included in #healthcare reform we will never leave paternalistic medicine. #patientchat
HealthSparq @HealthSparq
@bbhomebody @lisadbudzinski @RareAdvocates @Cpnervecenter I love this. #patientchat
Barby Ingle 📣 @BarbyIngle
T5. Where I have seen specific examples of system changes due to patient involvement is clinical trials, having the patients meet the researchers, & participate from idea through creation, like Movantik (OIC med), to marketing, our voice & experiences mattered #patientchat https://t.co/E6gsHoc1FJ
HealthSparq @HealthSparq
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
Your GPS Doc, LLC @yourgpsdoc
T5: ...thinking...thinking...I wish I could come up with an answer to this! #patientchat https://t.co/Ks376ZyCku
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T5. Where I have seen specific examples of system changes due to patient involvement is clinical trials, having the patient…
Christina Lizaso @btrfly12
RT @abrewi3010: T4 all humans want a higher quality of life. If we treat humans, not symptoms, we can improve everyone’s lives. #patientchat
HealthSparq @HealthSparq
RT @savvy_coop: @jamienholloway @ShereesePubHlth @MightyCasey @gratefull080504 You're in my head!!! YES. their individual experiences may d…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T5. Where I have seen specific examples of system changes due to patient involvement is clinical trials, having the patient…
Shanon McQuitty @shanonmc
RT @PatientCritical: T1: is the better question HOW can patients and families be included in redesigning health care systems & processes?…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A2: #patientchat They should be engaged and sampled in modeling, in treatment plan formation & feedback post treatment for time limited medical problems - based upon diversity, gap in study & lack of resource inclusion. https://t.co/5V3l07pF0P
International Pain Foundation® @powerofpain
RT @BarbyIngle: T5. Where I have seen specific examples of system changes due to patient involvement is clinical trials, having the patient…
The II @Interventional2
We are working with patients like this one to share stories that provide more awareness about treatment options. We would like to hear more from patients. #patientchat #withoutascalpel https://t.co/6q1GPMyo8F
Patient Critical Co-op @PatientCritical
T4: Different patients want different things, so how can all pts’ needs be met? We risk creating more silos, but have to balance that against tackling issues too large it muddies any coherent message. Pick your battles & again, keep communicating between groups. #patientchat
Alan Brewington @abrewi3010
A5 my first rheumatologist never wore a watch. I got his undivided attention without the time stressfulness usually involved in appointments #patientchat
Dr Mary Ann Wilmarth @Back2backPT
A1 It starts w/basic premise of humanity & what used 2B basis of #medical & #PT school when I was @DukeU #compassion #Caring #empathy Listen to your #patients Check out @JeremyHowick 4 evidence. All the high-tech won't take place of👂👀 @Back2backPT #patientchat @power4patients
Enlightening Results @GraceCordovano
T5: Patient-reported outcomes in trials and studies are taking up steam! @US_FDA #PatientChat https://t.co/nu3EYUdgEd
The Advocate Is In @TheAdvocateIsIn
T5: I had the opportunity to give input on a diabetes weight loss program for a major pharma company once. They were backing off on support at the exact moment they should have increased it. #patientchat
FrancieGrace @FrancieGrace
#patientchat "Patient-centered" can be misused meaningless buzz word but for the sincere, here's a definition: the organizing principle that everything that is done or proposed must be relentlessly measured against "How does this help the health and well-being of patients?" https://t.co/nYVlCvEMg1
Vera Rulon FAHIMA @vrulon
@ShereesePubHlth Joining late!! The power of co-design!! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @FrancieGrace: #patientchat "Patient-centered" can be misused meaningless buzz word but for the sincere, here's a definition: the organi…
Patient Critical Co-op @PatientCritical
T5: #patientchat #mpgac https://t.co/hWa03L3NJO
HealthSparq @HealthSparq
@GraceCordovano @US_FDA Any links to share?! #PatientChat
Richard Zhao @richardzhao
T5: We are trying to include patients interpretation into our algorithm. Great patients advocates like @bbhomebody @fireflyrn84 @lisadbudzinski all participated in this process. #patientchat https://t.co/XfBBc4HnSu
Patient Critical Co-op @PatientCritical
RT @PatientCritical: T5: #patientchat #mpgac https://t.co/hWa03L3NJO
Becky Brandt RN @bbhomebody
@HealthSparq @lisadbudzinski @RareAdvocates @Cpnervecenter So excited! We'll be posting as much as possible to share #RareDisease week with our patient friends who can't be there. #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T5: Patient-reported outcomes in trials and studies are taking up steam! @US_FDA #PatientChat https://t.co/nu3EYUdgEd
Savvy Co-op | #askpatients @savvy_coop
@abrewi3010 My current rheum gives me all the time I need (and even kept my whole paper chart because she said I was one she wanted to flip back through history and too complicated with EHR). Connect on a human level, so novel! #patientchat
Jamie Holloway, PhD @jamienholloway
T5: What's that phrase about how to eat an elephant-- one bite at a time? Hard to make a change to the big system without starting small. I've seen great progress in individuals, university settings, pharma. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: @HealthSparq @lisadbudzinski @RareAdvocates @Cpnervecenter So excited! We'll be posting as much as possible to share #RareD
Melissa VanHouten @melissarvh
T5 Not sure I can find specific example, but changes over time are clear. Chats like this & talk re including patients=progress #patientchat
Mary MACK @MaryOCMack
T5 some clinical trial sponsors will pay for costs of patient travel to trial sites. #patientchat
Alan Brewington @abrewi3010
T5 #Medx #Hcsm #patientchat are perfect examples of patients designing #healthcare for the betterment of all.
Christina Lizaso @btrfly12
RT @bbhomebody: @HealthSparq @lisadbudzinski @RareAdvocates @Cpnervecenter So excited! We'll be posting as much as possible to share #RareD
Patient Empowerment @power4patients
@TheAdvocateIsIn Great! Did they change their approach as a result of your input? Did you feel listened to? #patientchat
HealthSparq @HealthSparq
RT @savvy_coop: @abrewi3010 My current rheum gives me all the time I need (and even kept my whole paper chart because she said I was one sh…
The II @Interventional2
RT @FrancieGrace: #patientchat "Patient-centered" can be misused meaningless buzz word but for the sincere, here's a definition: the organi…
Vera Rulon FAHIMA @vrulon
@savvy_coop @jamienholloway @ShereesePubHlth @MightyCasey @gratefull080504 Agree --- 'value to who'?? In my view --- value to people/patients! #patientchat
HealthSparq @HealthSparq
@savvy_coop @abrewi3010 These are the people we need more of in #healthcare! #WTFix #PatientChat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
A3. #patientchat A patient & their close families readily accessible resources, medical problems, how they physically respond to treatments & desired outcomes should all hold leads in such a process & system. https://t.co/1n6ugTQNBV
Lisa Davis Budzinski @lisadbudzinski
@richardzhao @bbhomebody @fireflyrn84 Thank you for the shout out!! Yes, we love helping you✨ #patientchat
Patient Chat @patientchat
Last Topic (T6:) coming up...https://t.co/orcg0zpcRH #patientchat
Patient Critical Co-op @PatientCritical
A perfect example of the Venn diagram of efficiency & care. #patientchat https://t.co/QzhtWlwsqT
RaquelRoschell🌈 @raquelonpurpose
RT @patientchat: T5: Is there a specific example of a system or process that was changed or designed because of patients? #patientchat
Alan Brewington @abrewi3010
RT @savvy_coop: @abrewi3010 My current rheum gives me all the time I need (and even kept my whole paper chart because she said I was one sh…
Richard Zhao @richardzhao
@lisadbudzinski @bbhomebody @fireflyrn84 Love to have you helping us out, even I am so late on some stuff. #patientchat
Richard Zhao @richardzhao
RT @lisadbudzinski: @richardzhao @bbhomebody @fireflyrn84 Thank you for the shout out!! Yes, we love helping you✨ #patientchat
RaquelRoschell🌈 @raquelonpurpose
RT @savvy_coop: T1: Patients and caregivers are experts on their experiences, you don't get that insight from a textbook, it comes from liv…
Jamie Holloway, PhD @jamienholloway
@HealthSparq @GraceCordovano @US_FDA The FDA-- esp. @FDAOncology-- does a phenomenal job of engaging patients and acting on their input: PROs, modernizing eligibility criteria publications, breakthrough designation... #patientchat
couragesings @couragesings
RT @btrfly12: re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Cat Williams @dizzycatdesign
RT @QuinlanTurner: @patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts…
Alan Brewington @abrewi3010
@savvy_coop So cool to hear! #patientchat
Patient Chat @patientchat
T6: Would you be interested in helping @power4patients create a guide explaining how health care systems can include patients and families in design and implementation? #patientchat
Patient Critical Co-op @PatientCritical
T5: Apple adding years-old FHIR tech to iPhones to permit the clients of a dozen silo'd health portals is a first step. It indicates tech Giants now entering #healthcare see value in the health conscious demographic. That's a wedge we can use to expand awareness. #patientchat
Savvy Co-op | #askpatients @savvy_coop
@FrancieGrace Oh yeah it's a total buzzword. And the diagrams of patient-centered care with a patient and people around them is bizarre. Patients want to be partners, not stared at like a zoo animal #patientchat https://t.co/BELuyZtPHO
Vera Rulon FAHIMA @vrulon
@btrfly12 @patientchat Someone already mentioned clinical trials - patient speaking among themselves about their trials via social media change a paradigm - can't blind #patientchat
Quin Turner @QuinlanTurner
@patientchat A5. I work with a group focusing on quality of care improvement and its amazing that some of the most basic ideas have profound results. Ex.a simple card in your wallet lets docs know at ED that they should NOT use steroids/narcotics/scans without consulting your GI. #patientchat
The II @Interventional2
Patients speaking at medical conferences to healthcare professionals are a powerful way to be heard by specific medical disciplines! #patientchat
Savvy Co-op | #askpatients @savvy_coop
@bbhomebody @HealthSparq @lisadbudzinski @RareAdvocates @Cpnervecenter Can't wait to follow you both! #patientchat
Cat Williams @dizzycatdesign
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
Alan Brewington @abrewi3010
@HealthSparq @savvy_coop Yes we do!!!!! #patientchat
Christina Lizaso @btrfly12
RT @patientchat T6: Would you be interested in helping @power4patients create a guide explaining how health care systems can include patients and families in design and implementation? #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @btrfly12: RT @patientchat T6: Would you be interested in helping @power4patients create a guide explaining how health care systems can…
Lisa Davis Budzinski @lisadbudzinski
@richardzhao @bbhomebody @fireflyrn84 We totally understand 😉 It’s how our lives as #patients run any way. So win-win ✨#patientchat
Jamie Holloway, PhD @jamienholloway
Great point, Diana! #patientchat https://t.co/cZDZIwliSV
FrancieGrace @FrancieGrace
RT @Interventional2: Patients speaking at medical conferences to healthcare professionals are a powerful way to be heard by specific medica…
Savvy Co-op | #askpatients @savvy_coop
@vrulon @jamienholloway @ShereesePubHlth @MightyCasey @gratefull080504 That's the goal :) #patientchat
Melissa VanHouten @melissarvh
T6 How soon can I sign up? :) #patientchat
Richard Zhao @richardzhao
T5: Whoever want to participate our annotation, which is to include consumer's interpretation into patient experience, we are willing to take. Follow the footsteps of @lisadbudzinski @fireflyrn84 @bbhomebody @RieOfLetters #patientchat
Christina Lizaso @btrfly12
RT @jamienholloway: @HealthSparq @GraceCordovano @US_FDA The FDA-- esp. @FDAOncology-- does a phenomenal job of engaging patients and actin…
RaquelRoschell🌈 @raquelonpurpose
So many great chats to choose. Making it to this one late. I've read some great tweets so far.. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @richardzhao: T5: Whoever want to participate our annotation, which is to include consumer's interpretation into patient experience, we…
FrancieGrace @FrancieGrace
RT @Interventional2: We believe it is the responsibility of healthcare professionals & disease specific advocacy groups to present medical…
Diana M Merino @d2merino
RT @btrfly12: re: co-design - Don't forget to check out the recent #HowNotToDoPtEngagement #HowToDoPtEngagement threads :) #patientchat
Alan Brewington @abrewi3010
T6 yesssssssss!!!! #patientchat
RaquelRoschell🌈 @raquelonpurpose
RT @jamienholloway: @ShereesePubHlth @savvy_coop @MightyCasey @gratefull080504 Still, I think there are big themes that apply-- respect me,…
🎆Juba🎆 @djuba52
#patientchat
Amanda Haddock @amandahaddock
RT @jamienholloway: I think there's a patient for every level. Sometimes a patient's role is to share their story, but sometimes they need…
HealthSparq @HealthSparq
RT @btrfly12: RT @patientchat T6: Would you be interested in helping @power4patients create a guide explaining how health care systems can…
Savvy Co-op | #askpatients @savvy_coop
@jamienholloway @HealthSparq @GraceCordovano @US_FDA @FDAOncology Great point, #PFDD meetings are a great start, they have many #patientengagement initiatives as well. Although honestly sometimes I am unclear how it translates or if just giving patients a space to speak. But it is movement towards listening to patients. #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T4: Wants & needs are different, all of us have an "ideal" what "we'll accept" & a grey area in between as patients, that's not a problem, nor is their1when different patients want different things for themselves,it's when the Dr wants different from the patient. #patientchat https://t.co/hZJEc6xUiT
Amanda Haddock @amandahaddock
RT @savvy_coop: T1: Patients and caregivers are experts on their experiences, you don't get that insight from a textbook, it comes from liv…
Patient Critical Co-op @PatientCritical
This also helps to evolve the discussions of patient participation beyond 'should they be here' in the first place? #patientchat https://t.co/nTK2rv2zoG
Patient Empowerment @power4patients
Interested in hearing more thoughts about how increasing health literacy creates more meaningful opportunities for patient-centered design. BYW, we agree! #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
The Advocate Is In @TheAdvocateIsIn
T6: I'm in. #patientchat
Quin Turner @QuinlanTurner
@EmMorgan27 @HealthSparq @GraceCordovano @US_FDA @CrohnsColitisFn @ChronicallyJess I've had the pleasure of working with @EmMorgan27 and @ChronicallyJess on this and I can truly say that the potential outcomes from it can have such an impact on #IBD and well beyond. #patientchat
HealthSparq @HealthSparq
T6. YES! #patientchat https://t.co/V1Q6dt0W95
Christina Lizaso @btrfly12
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
Vera Rulon FAHIMA @vrulon
@btrfly12 @patientchat @power4patients There is some great work being done out west (Berkeley) on co-design. I'm mostly aware of in the aging space... but this applies to all!! #patientchat
Richard Zhao @richardzhao
@lisadbudzinski @bbhomebody @fireflyrn84 Yeah. Everybody is trying to juggling several balls at the same time for lifes. #patientchat
Cat Williams @dizzycatdesign
@patientchat hope it's ok to jump into #patientchat. Hard to read/type using @AffloVest +doing nebs for #cysticfibrosis. Good discussion!👏
Espaço Jovem @twjovem
#patientchat Top PopMusic in RadioGlobal! https://t.co/Ti9lBOmIu6
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T6: #patientchat yes & beyond my chronic medical problems, I think my associate's degree in Health & Human Services may help in this realm. https://t.co/w93Q9DISYs
HealthSparq @HealthSparq
Changes to #healthcare don't all have to be huge, a lot fo the time simple, small changes work wonders! Great insight @QuinlanTurner! #PatientChat #WTFix https://t.co/RnEyIgl2YV
Becky Brandt RN @bbhomebody
@richardzhao @lisadbudzinski @fireflyrn84 @RieOfLetters Yes! We love the way @richardzhao is including patients from the ground up. Join us in this great project. #patientchat
Amanda Haddock @amandahaddock
RT @Interventional2: Patients speaking at medical conferences to healthcare professionals are a powerful way to be heard by specific medica…
Becky Brandt RN @bbhomebody
RT @richardzhao: T5: Whoever want to participate our annotation, which is to include consumer's interpretation into patient experience, we…
Jillian Buza @jillianbuza
RT @BarbyIngle: T4. Individualized medicine There is never going to be a one size fits all When we move to a patient-centered approach & TX…
Savvy Co-op | #askpatients @savvy_coop
T6: Quite literally our favorite thing. Totally in! #patientchat https://t.co/pqgzwHNpsm
Amanda Haddock @amandahaddock
RT @vrulon: @btrfly12 @patientchat Someone already mentioned clinical trials - patient speaking among themselves about their trials via soc…
Patient Empowerment @power4patients
RT @patientchat: T6: Would you be interested in helping @power4patients create a guide explaining how health care systems can include patie…
Vera Rulon FAHIMA @vrulon
@power4patients Communication is at the heart of any improvement in the system!! Providers need to adapt their language to help. #patientchat
Alan Brewington @abrewi3010
RT @HealthSparq: T6. YES! #patientchat https://t.co/V1Q6dt0W95
Amanda Haddock @amandahaddock
RT @MaryOCMack: T5 some clinical trial sponsors will pay for costs of patient travel to trial sites. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: @richardzhao @lisadbudzinski @fireflyrn84 @RieOfLetters Yes! We love the way @richardzhao is including patients from the gr…
Barby Ingle 📣 @BarbyIngle
Thank you .@mswizzzard for your service to the chronic community. I have done a lot of trials myself and know it is not easy but it is progress for our futures and our communities future #patientchat https://t.co/g72omVUZN4
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@savvy_coop @FrancieGrace I worry when I hear people say it’s just a buzzword because often times when I hear people say that they often follow it up by scoffing “Medicine already is patient-centered care.” It is?! Yikes! 😱 #patientchat
HealthSparq @HealthSparq
RT @bbhomebody: @richardzhao @lisadbudzinski @fireflyrn84 @RieOfLetters Yes! We love the way @richardzhao is including patients from the gr…
Diana M Merino @d2merino
@PatientCritical There should be some type of educational curricula to more rapidly and effectively enable patients to be able to do this. I have seen patients who perhaps did more harm to the field bc they were not properly trained #patientchat
Jillian Buza @jillianbuza
RT @abrewi3010: T1 healthcare for people needs to be designed by humans, not the beast of #healthcare. QOL comes from human centered ideas.…
Annette McKinnon @anetto
RT @richardzhao: @lisadbudzinski @bbhomebody @fireflyrn84 Yeah. Everybody is trying to juggling several balls at the same time for lifes. #…
Amanda Haddock @amandahaddock
RT @FrancieGrace: #patientchat "Patient-centered" can be misused meaningless buzz word but for the sincere, here's a definition: the organi…
Patient Critical Co-op @PatientCritical
#patientchat If you discuss "why involve patients & caregivers?" with anyone, this illustration says it all. https://t.co/BdgM3tziMx
Christina Lizaso @btrfly12
T5: there is a great #btsm initiative with patients included in the design going on to check out another example leading the way #patientchat
Vera Rulon FAHIMA @vrulon
@dizzycatdesign @patientchat @AffloVest Welcome! #patientchat
Richard Zhao @richardzhao
Great to have somebody like you on the project from the bottom of my heart! True #Leaders take action! #patientchat https://t.co/jmS5qdskNW
Alan Brewington @abrewi3010
CT Failure is just as valuable as success in human centered design. Humans are not perfect, but that doesn’t mean we can’t learn to be. #patientchat
HealthSparq @HealthSparq
RT @jamienholloway: @HealthSparq @GraceCordovano @US_FDA The FDA-- esp. @FDAOncology-- does a phenomenal job of engaging patients and actin…
Annette McKinnon @anetto
RT @power4patients: Interested in hearing more thoughts about how increasing health literacy creates more meaningful opportunities for pati…
Melissa VanHouten @melissarvh
CT Tell your unique story loudly & often & fight for the changes you seek. Patient-centered must be > just a buzzword. #patientchat
Savvy Co-op | #askpatients @savvy_coop
@GinaMcGalliard @FrancieGrace Oh goodness no - if this is as good as it gets, we're in danger. #patientchat https://t.co/TBQ3zcQ0VK
Christina Lizaso @btrfly12
RT @melissarvh: CT Tell your unique story loudly & often & fight for the changes you seek. Patient-centered must be > just a buzzword. #pa
Amanda Haddock @amandahaddock
With #patientchat and #nihchat traffic at the same time, it’s a field day for those looking to improve patient outcomes!
Dr Mary Ann Wilmarth @Back2backPT
A1 Spent entire life #educating myself & my3 children: #DVM #Neuro #Resident #MBA #healthcare #architect #lifelonglearning #advocating & my MDs won't listen & act as if I don't want to go #backtowork I was #CEO at 28yrs-old! HELLO‼️ @Back2backPT #patientchat @power4patients https://t.co/tZGTtlIMt9
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@power4patients Yes!!! #patientchat
Vera Rulon FAHIMA @vrulon
@GinaMcGalliard @savvy_coop @FrancieGrace Oh my.... culture change needed!!! #patientchat
Cat Williams @dizzycatdesign
@vrulon @patientchat @AffloVest Thanks! First time at #patientchat
RaquelRoschell🌈 @raquelonpurpose
Great insight #patientchat https://t.co/cs5qfj9qeD
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@btrfly12 @patientchat @power4patients Sounds great to me! #PatientChat
Christina Lizaso @btrfly12
RT @HealthSparq: Changes to #healthcare don't all have to be huge, a lot fo the time simple, small changes work wonders! Great insight @Qui
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
Jamie Holloway, PhD @jamienholloway
@AmandaHaddock Thanks for the heads up! I'll have to head over and read #nihchat this afternoon-- missed that one! #patientchat
Patient Critical Co-op @PatientCritical
And while we need to move into partnership not blame in #healthcare, this graphic shows the problem of tokenistic patient engagement from the patient perspective: #patientchat https://t.co/z5eT7Cppvb
Annette McKinnon @anetto
RT @savvy_coop: @FrancieGrace Oh yeah it's a total buzzword. And the diagrams of patient-centered care with a patient and people around the…
Patient Chat @patientchat
#patientchat is your community. Thanks for joining in today and if there is any additional you want to included in our guide, please reach out to @power4patients or @patientchat
Kevin J. Fowler @gratefull080504
@FrancieGrace : This is the essence of #patientcentered care #patientchat https://t.co/vCFpdhHhx0
Vera Rulon FAHIMA @vrulon
@abrewi3010 How true! We learn from our failures and then improve... :) #patientchat
Barby Ingle 📣 @BarbyIngle
CT: Always stand up for yourself & get involved in your care and your family members care so that you get the best care possible. The US system is not set up for chronic care needs so we must create our individualized paths & never give up on getting better! #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@savvy_coop @FrancieGrace I couldn’t agree more! #patientchat
Melissa VanHouten @melissarvh
Many thanks to @patientchat & @power4patients for hosting another fabulous discussion! #patientchat
Heather McCullen @H_SalemOaks
RT @savvy_coop: T4 I think it's important to step out of our own echo chambers and ask diverse patients what they want, and then work toget…
FrancieGrace @FrancieGrace
#patientchat Those diagrams are awful. Patients know when they ARE at the center of things if: MD listens, answers Qs, is willing to communicate between appts, adjusts treatment based on patient experience/input, consults others when not sure what's wrong, corrects MedRec errors https://t.co/oK4ny7kwIh
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, March 9th at 10amPT | 1pmPT. Hope to see you there!
@MedicineGov 🚑🔬🌐 🇬🇧 @medicinegov
RT @QuinlanTurner: @patientchat A3. clear msg that just bc pts may not speak the med language like a doc, it doesn't mean we're not experts…
Annette McKinnon @anetto
RT @FrancieGrace: #patientchat "Patient-centered" can be misused meaningless buzz word but for the sincere, here's a definition: the organi…
Jamie Holloway, PhD @jamienholloway
Shameless plug for the #patientchat crew, but I wrote a piece for @Science37x last week on patient centered research. Like the chat, but more characters! https://t.co/zTEnP5SAEP
Savvy Co-op | #askpatients @savvy_coop
RT @FrancieGrace: #patientchat Those diagrams are awful. Patients know when they ARE at the center of things if: MD listens, answers Qs, is…
The II @Interventional2
Studies show that Empowered Patients have better outcomes! #patientchat #FridayMotivation #withoutascalpel https://t.co/hq6Z1z6wms
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Christina Lizaso @btrfly12
RT @BarbyIngle: CT: Always stand up for yourself & get involved in your care and your family members care so that you get the best care pos…
Patient Critical Co-op @PatientCritical
Exactly! #healthliteracy & courage to ask & question are in short supply. We need to make the courage & conviction that it's a patient's right to question commonplace! #patientchat https://t.co/K9IEIoCwBD
@MedicineGov 🚑🔬🌐 🇬🇧 @medicinegov
RT @Interventional2: Studies show that Empowered Patients have better outcomes! #patientchat #FridayMotivation #withoutascalpel https:/…
Richard Zhao @richardzhao
Got go to meeting now. Have a nice weekend everybody! #patientchat
PREFeR_Project @preferproject
Want research on health care topics that matter to you? We want to hear from anyone living in #BC in this 5-10 minute survey: https://t.co/Eh4mxCjkxa #patientchat #PatientOrientedResearch @PatientVoicesBC @DrMroz @dhwanibabla @ChangeDayBC @VancouverCHI @ubcspph @SFUResearch https://t.co/Z8GHG28TCr
Christina Lizaso @btrfly12
RT @patientchat The next Empowered #patientchat will be Friday, March 9th at 10amPT | 1pmPT. Hope to see you there!
Christina Lizaso @btrfly12
RT @patientchat: #patientchat is your community. Thanks for joining in today and if there is any additional you want to included in our gui…
International Pain Foundation® @powerofpain
RT @BarbyIngle: CT: Always stand up for yourself & get involved in your care and your family members care so that you get the best care pos…
FrancieGrace @FrancieGrace
RT @gratefull080504: T4: My bible is the Institute of Medicine Report: Crossing the Quality Chasm #patientcentered care take into account…
Vera Rulon FAHIMA @vrulon
Signing off #patientchat!! Even though I joined late it was a terrific conversation!!
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: CT: Always stand up for yourself & get involved in your care and your family members care so that you get the best care pos…
FrancieGrace @FrancieGrace
RT @gratefull080504: @FrancieGrace : This is the essence of #patientcentered care #patientchat https://t.co/vCFpdhHhx0
Darren Klass @mrakid
RT @Interventional2: Studies show that Empowered Patients have better outcomes! #patientchat #FridayMotivation #withoutascalpel https:/…
Vera Rulon FAHIMA @vrulon
@btrfly12 @patientchat I'll be traveling home from HIMSS18 but will try if not inflight!! #patientchat
HealthSparq @HealthSparq
RT @savvy_coop: @FrancieGrace Oh yeah it's a total buzzword. And the diagrams of patient-centered care with a patient and people around the…
Laura Walters @elcie28
RT @Interventional2: Studies show that Empowered Patients have better outcomes! #patientchat #FridayMotivation #withoutascalpel https:/…
Dr Mary Ann Wilmarth @Back2backPT
A6 I'd absolutely be interested in help 2 create guide! I have many ideas. Just getting started, but my hands are weak, thumbs dislocated (I told previous MD, but was dismissed-only my area of expertise😊) & I'm slow bc in flare🤷‍♀️ @Back2backPT #patientchat @power4patients https://t.co/xZXF0X0igf
HealthSparq @HealthSparq
Amazing #patientchat, as always!! Thank you @btrfly12 @patientchat!
Barby Ingle 📣 @BarbyIngle
Top Influencers of #patientchat 👉 @patientchat @jamienholloway @savvy_coop @btrfly12 @gracecordovano @barbyingle @abrewi3010 @healthsparq @power4patients https://t.co/fdl7XTRr1I via @symplur
Savvy Co-op | #askpatients @savvy_coop
Thanks #patientchat! And if interested in #patientengagement, we'll be talking abt connected patient care at #HIMSS18 with @Lygeia & @HealthData4All and looking to present your thoughts to the crowd (since we believe we can't speak for everyone!) Survey: https://t.co/M3XEKPW4sE https://t.co/PC0Z7zUUeD
Enlightening Results @GraceCordovano
RT @BarbyIngle: Top Influencers of #patientchat 👉 @patientchat @jamienholloway @savvy_coop @btrfly12 @gracecordovano @barbyingle @abrewi301
The II @Interventional2
Enjoyed the #patientchat today! @patientchat @savvy_coop @HealthSparq @power4patients #FridayMotivation #patientchat https://t.co/mqw41LrnQ4
John Lynn @techguy
Those new hashtags are a great idea. #PatientChat https://t.co/cM2zvnYGXW
Patient Critical Co-op @PatientCritical
Thanks for all the good work and sparking so much discussion #patientchat! We'll do our best to carry it into the world, and put the inspiration you help light up into practice in healthcare!
FrancieGrace @FrancieGrace
RT @BarbyIngle: CT: Always stand up for yourself & get involved in your care and your family members care so that you get the best care pos…
John Lynn @techguy
I think we have to be a little careful with this if compensation=money. Once you add money to the equation, then you're an employee and will be treated like an employee. Sometimes it's better not to be financially compensated, but to be "paid" in other ways. #patientchat https://t.co/F3dW2qDABO
Ronny Allan @RonnyAllan1
RT @Interventional2: Patients speaking at medical conferences to healthcare professionals are a powerful way to be heard by specific medica…
Dr Mary Ann Wilmarth @Back2backPT
A4 All #patients want someone to #listen to them; to show some #empathy ; to look them in the #eye at some point during their visit; & want to #getwell That gives a great #platform from which to start with #commonalities @Back2backPT #patientchat @power4patients https://t.co/0WKYuqkyTk
Rebecca K Finley @sossity57
#DumpNRATV #ChangeAWordImproveAFilm #BadTimesToSayCheckPlease The NCAA #patientchat #SSAC18 #FAT2018 #HITsm https://t.co/zCCEhstY4T
HealthSparq @HealthSparq
RT @BarbyIngle: Top Influencers of #patientchat 👉 @patientchat @jamienholloway @savvy_coop @btrfly12 @gracecordovano @barbyingle @abrewi301
janae sharp @CoherenceMed
@techguy What ways? #PatientChat
#patientchat content from Twitter.