#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
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat
Patient Chat @patientchat
Excited to have guest @HealthSparq here, who is dedicated to empowering people to make smarter health care choices, co-hosting today’s #patientchat
Kimberly Hartmann @fireflyrn84
Kim here from Wisconsin. Thrilled to be co-hosting #patientchat with @HealthSparq and fellow #WTFix DAB members. I'm living with multiple #rarediseases and #chronicillnesses. Also a #patientadvocate and #blogger for the healthcare journey and continuum.
Geeky Fox @TechKitsune
Hello! I'm Geeky Fox and I am a HealthIT marketer by background and patient of course. :) #patientchat
Parijat Deshpande @ParijatDesh
RT @ParijatDesh: Who you trust during #infertility , your #highriskpregnancy or when you have a #baby in the #NICU can make or break your…
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/@HealthSparq here: https://t.co/I3De6XRfwC
Inspire @teaminspire
Hello to #patientchat, John Novack here on behalf of healthcare social network Inspire. I'm proud to be a Digital Advisory Board member for the upcoming #WTFix conference.
Vera Rulon FAHIMA @vrulon
#patientchat Vera here... from NY (where it's finally warm :) )
Patient Chat @patientchat
Join @HealthSparq’s #WTFix conference on May 17th for a full day of inspiring stories to change #healthcare. Register here: https://t.co/rJJR4qtDCm #patientchat
Patient Chat @patientchat
You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat
HealthSparq @HealthSparq
So excited to be here w/ @patientchat, hosting #PatientChat with some of our #WTFix Digital Advisory Board members! https://t.co/VHBW8cOIWc
Kimberly Hartmann @fireflyrn84
@TechKitsune So glad that you're joining us! #patientchat #WTFix
HealthSparq @HealthSparq
RT @fireflyrn84: Kim here from Wisconsin. Thrilled to be co-hosting #patientchat with @HealthSparq and fellow #WTFix DAB members. I'm livin…
Max Stroud @MMaxwellStroud
Hi Everyone! Max here! Lead Consultant with @GalenHealthcare working in #HealthIT and occasional speaker at conferences talking about #patientengagement and #patientstories with folks like @iestroud and @LAlupusLady #patientchat
laminopathies support group @laminopathies
Hi I'm Mary, a patient/advocate @Laminopathies #patientchat
Your GPS Doc, LLC @yourgpsdoc
Hi! Nicole Rochester- Physician, former caregiver, health advocate, CEO of Your GPS Doc, LLC. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Kimberly Hartmann @fireflyrn84
@teaminspire Hey John! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
ElizabethKelly, Ph.D @Elizabe85727641
Hello all, Liz Kelly, can this conversation affect change in conference planning? #patientchat
Max Stroud @MMaxwellStroud
RT @HealthSparq: So excited to be here w/ @patientchat, hosting #PatientChat with some of our #WTFix Digital Advisory Board members! https:…
Kevin Freiert @K_SalemOaks
Kevin from Connecticut tweeting in from Western NY #patientchat #Billsfan
Kimberly Hartmann @fireflyrn84
@MMaxwellStroud @GalenHealthcare @iestroud @LAlupusLady Hi Max! #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Patient Critical Co-op @PatientCritical
Hello, my name is PJ Mierau. I'm the Managing Director of Canada's 100% member-patient owned healthcare advocacy & education co-op @PatientCritical. Good to be representing our members for another #patientchat
Kimberly Hartmann @fireflyrn84
#patientchat https://t.co/KZ7jIaXRi2
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: You can find out more about @HealthSparq here: https://t.co/2swNZ8sRRh #patientchat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking w/a doctor who's familiar w/your medical needs & history #patientchat
Alan Brewington @abrewi3010
Alan here. Recovering from my third week of C2-C4 cervical spine injections. My story includes #rheum, #chronicpain, #mentalhealth, #photography, possibly #mountainbiking. #patientchat https://t.co/OeycHm5TgG
Angela Cohen @angelee828
Hey All! Angela joining from Wisconsin. I'm excited to be joining in on this #patientchat today!! 😀👋🏽 https://t.co/k9TLJUyr9r
HealthSparq @HealthSparq
RT @patientchat: Join @HealthSparq’s #WTFix conference on May 17th for a full day of inspiring stories to change #healthcare. Register here…
Stephanie Fischer @RarePOV
Hi, this is Stephanie, a #raredisease patient joining #patientchat from outside of Philadelphia!
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Kimberly Hartmann @fireflyrn84
You don't want to miss #WTFix 2018, last year was amazing, but this year is going to blow your socks off. Let's kick the hell out of healthcare again! #patientchat https://t.co/EXwZ3YICp5
Enlightening Results @GraceCordovano
Happy Friday #patientchat! Grace, private patient advocate & #PtExp enhancer, joining from NJ! Who's counting the days until #WTFix?! https://t.co/q6Umx8jYl8
Patient Chat @patientchat
Today's #patientchat topic is Including Patients and Care Partners: Let's Talk Healthcare Conferences https://t.co/4adf8e9pPh
HealthSparq @HealthSparq
@annerskg here on the HealthSparq handle from #PDX this morning, so excited for today's conversation all about including #patients & #carepartners in #healthcare conferences! #patientchat
Jamie Holloway, PhD @jamienholloway
Happy Friday, #patientchat crew! I'm Jamie, breast cancer scientist, patient, now advocate. Clinical research advocate with @Science37x.
Lisa Davis Budzinski @lisadbudzinski
Hello everyone! Lisa here from Florida. Co-founder @Cpnervecenter with fabulous partner @bbhomebody Advocate for #intractablepain & from #PatientPerspective #patientchat #WTFix
Kimberly Hartmann @fireflyrn84
@RarePOV so glad to have you with us today! #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
Becky Brandt RN @bbhomebody
Hi Everyone. I'm Becky RN, rare disease and #intractablepain patient & advocate, co-founder of @Cpnervecenter with the amazing @lisadbudzinski #patientchat https://t.co/FyyEcd0PEY
Stephanie Fischer @RarePOV
Hoping the #patientincluded warriors will chime in to the #PatientChat starting now on the inclusion of patients in healthcare conferences! Nothing about us without us! https://t.co/izEf9nKOLa
John M. Trumbo @JohnMTrumbo
Happy to be joining #patientchat today
Patient Empowerment @power4patients
@RarePOV Hey Stephanie! Glad you're here! #patientchat
Kimberly Hartmann @fireflyrn84
@abrewi3010 Good to see you Alan! Hope you're feeling better. #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: Today's #patientchat topic is Including Patients and Care Partners: Let's Talk Healthcare Conferences https://t.co/4adf8e9…
Enlightening Results @GraceCordovano
@bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky! Great to see you! #patientchat
Kimberly Hartmann @fireflyrn84
@lisadbudzinski @Cpnervecenter @bbhomebody Hey Lisa! #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Becky Brandt RN @bbhomebody
@lisadbudzinski @Cpnervecenter Mornin Pard! 🖑💖 #PatientChat
Patient Chat @patientchat
T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
burtrosen @burtrosen
burt's here from @HealthSparq and #WTFix excited for today's chat! #PatientChat
Enlightening Results @GraceCordovano
@lisadbudzinski @Cpnervecenter @bbhomebody Hey Lisa! Happy Friday!! #patientchat
Kimberly Hartmann @fireflyrn84
@GraceCordovano @HealthSparq @patientchat @lisadbudzinski @EMRAnswers @LillyStairs @burtrosen @teaminspire @WheezyNurse @MMaxwellStroud Yay! Great to see you Grace! #patientchat
Your GPS Doc, LLC @yourgpsdoc
@abrewi3010 I have been dealing with C5-C7 pain due to bulging discs and bony arthritic changes for 3 weeks. Worst pain ever but it’s finally better just before I was scheduled for injections. Hope you feel better! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@fireflyrn84 @Cpnervecenter @bbhomebody #patientchat https://t.co/z5g4GhgajU
Chuck Webster MD MS AI MS Industrial Engineering @wareFLO
Chuck! #patientchat Here because I started a series of chats in virtual reality, and guess what? A majority of attendees are not HIT professionals, rather, they are patients interested in VR!
HealthSparq @HealthSparq
@JohnMTrumbo Hi John! #patientchat
Enlightening Results @GraceCordovano
@jamienholloway @Science37x Hi Jaime! It's been too long! Been missing my chats at #bcsm. Need to get back asap. Need 1 more week. #patientchat
Becky Brandt RN @bbhomebody
@GraceCordovano @Cpnervecenter @lisadbudzinski Good mornin Grace! Great to see you! 🖑 #PatientChat
Alan Brewington @abrewi3010
@fireflyrn84 Thank you! Good to see you too 🙏 #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Inspire @teaminspire
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Enlightening Results @GraceCordovano
@HealthSparq @annerskg Great to see you Anna! #Patientchat
Lisa Davis Budzinski @lisadbudzinski
@bbhomebody @Cpnervecenter #PatientChat https://t.co/gpFmnWIXyb
Vera Rulon FAHIMA @vrulon
@GraceCordovano Hello @GraceCordovano !! #PatientChat
HealthSparq @HealthSparq
@bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky! Thank you for joining! #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Enlightening Results @GraceCordovano
@RarePOV Great to have you here Stephanie! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Kimberly Hartmann @fireflyrn84
@bbhomebody @Cpnervecenter @lisadbudzinski Hey Becky! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @Cpnervecenter @bbhomebody Hi Grace! #PatientChat https://t.co/ej1FVgrk8h
Jamie Holloway, PhD @jamienholloway
@GraceCordovano @Science37x We've missed you too! But I totally understand, life gets busy and complicated! #patientchat
Enlightening Results @GraceCordovano
@abrewi3010 Hi Alan! Sending healing vibes! Glad you could join us. #patientchat
Kimberly Hartmann @fireflyrn84
@HealthSparq @annerskg Hi Anna! #patientchat
Alan Brewington @abrewi3010
@yourgpsdoc The pain is rough! Good luck to you, fingers crossed for you 🙏 #patientchat
Becky Brandt RN @bbhomebody
@wareFLO Good Morning Chuck of the amazing VR clan🖑 #PatientChat
Enlightening Results @GraceCordovano
@fireflyrn84 Hi Kim! How are you doing today? Been thinking about you. #patientchat
Max Stroud @MMaxwellStroud
Folks with chronic illness are the "superusers" of healthcare systems, they can tell you where the pain-points are in the healthcare delivery system and give you valuable insights you can't see from the inside. #patientchat
Kevin Freiert @K_SalemOaks
T1. Adds value to the conference by creating a place for #pharma to bump into #patients and have #realconversations. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@wareFLO Yes! #PatientChat https://t.co/0u5qwQzH7V
Geeky Fox @TechKitsune
T1: Education, they get to see what is out there! They get to experience panels that educate and inspire new ideas. They get to see how #healthcare works. #patientchat
Enlightening Results @GraceCordovano
@K_SalemOaks Great to see you Kevin. How is your mother-in-law? #patientchat
HealthSparq @HealthSparq
In case you haven't met our #WTFix Digital Advisory Board, get to know a little more about them & what we're up to at: https://t.co/oFfnAxZlhu #patientchat
Enlightening Results @GraceCordovano
@patientchat @power4patients Great to see you Kara! Hope all is well #patientchat
Dr. Kelly Shanahan @stage4kelly
Hi everyone! Kelly, former ob/gyn current metastatic breast cancer patient & advocate, joining from beautiful Lake Tahoe #patientchat
Christina Lizaso @btrfly12
Waving "Hi" to #patientchat and sorry I can't stay. If you are around Twitter, jump right in for a great discussion on patient/carepartner participation in conferences. #patientsincluded
Becky Brandt RN @bbhomebody
@fireflyrn84 @Cpnervecenter @lisadbudzinski Hi my lil Kim 💖🖑 #Patientchat
Alan Brewington @abrewi3010
T1 Conferences can finally claim to have #everyoneincluded #medx #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @HealthSparq: In case you haven't met our #WTFix Digital Advisory Board, get to know a little more about them & what we're up to at: htt…
Kimberly Hartmann @fireflyrn84
@burtrosen @HealthSparq Long time no see, Burt! #patientchat
Vote November 6th @JECallender
@patientchat T1: Conferences tend to emphasize existing solutions when I'm not sure we understand the problem. Inclusion of caregivers and patients could help shift dynamic to understanding the problem first. #patientchat
Jamie Holloway, PhD @jamienholloway
@stage4kelly Hi Kelly! #PatientChat
Enlightening Results @GraceCordovano
@MMaxwellStroud @GalenHealthcare @iestroud @LAlupusLady HI Max! Happy Friday! #patientchat
Patient Chat @patientchat
RT @K_SalemOaks: T1. Adds value to the conference by creating a place for #pharma to bump into #patients and have #realconversations. #pati
Christina Lizaso @btrfly12
RT @patientchat: Today's #patientchat topic is Including Patients and Care Partners: Let's Talk Healthcare Conferences https://t.co/4adf8e9…
Vera Rulon FAHIMA @vrulon
T1: Benefits - listening and acting on #patient #caregiver concerns, ideas - making them partners in healthcare (not dictate, patronize) - only way for meaning change #PatientChat
laminopathies support group @laminopathies
T1. Not involving them makes no sense. Daily living with the disease, everyone at conference needs to learn what that takes #PatientChat
Patient Empowerment @power4patients
T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat
Christina Lizaso @btrfly12
RT @patientchat: Join @HealthSparq’s #WTFix conference on May 17th for a full day of inspiring stories to change #healthcare. Register here…
Becky Brandt RN @bbhomebody
@HealthSparq @Cpnervecenter @lisadbudzinski Thanks! ALWAYS A PLEASURE TO BE HERE😀 #PatientChat
Patient Critical Co-op @PatientCritical
T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Kimberly Hartmann @fireflyrn84
RT @HealthSparq: In case you haven't met our #WTFix Digital Advisory Board, get to know a little more about them & what we're up to at: htt…
Max Stroud @MMaxwellStroud
RT @HealthSparq: In case you haven't met our #WTFix Digital Advisory Board, get to know a little more about them & what we're up to at: htt…
Flareuphope @flareuphope
#patientchat Hi all! Jacklyn here. I have Ulcerative Colitis. Sorry I'm late to the party!
Enlightening Results @GraceCordovano
#Patients WANT to know more about digital health & tech!! #patientchat https://t.co/bz51nKoGDX
Your GPS Doc, LLC @yourgpsdoc
T1: Including patients and care partners in conferences provides opportunities to represent well-rounded, inclusive perspectives. Extremely valuable for HCP, patients, and care partners. #patientchat https://t.co/irGWfSWrQM
lillian lake @llake
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
HealthSparq @HealthSparq
👇 #WTFix #PatientChat https://t.co/9MCo5VCSZD
Enlightening Results @GraceCordovano
@wareFLO Great to see you Chuck! #patientchat
Jamie Holloway, PhD @jamienholloway
T1: Patients at conferences build new collaborations, challenge new ideas, bring a sense of urgency and reality to a more abstract concept of science and healthcare #PatientChat
Max Stroud @MMaxwellStroud
RT @JECallender: @patientchat T1: Conferences tend to emphasize existing solutions when I'm not sure we understand the problem. Inclusion…
Your GPS Doc, LLC @yourgpsdoc
@abrewi3010 Thank you! Same to you! #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 By engaging the end user in the conversation will bring about more insight as recognized by: https://t.co/s69HoEGUJZ BMJ Patient Involvement #patientchat
Chuck Webster MD MS AI MS Industrial Engineering @wareFLO
@lisadbudzinski Lisa & @bbhomebody were the very first folks to take the plunge #patientchat
Inspire @teaminspire
RT @JECallender: @patientchat T1: Conferences tend to emphasize existing solutions when I'm not sure we understand the problem. Inclusion…
Enlightening Results @GraceCordovano
@burtrosen @HealthSparq Hi Burt! Great to see you! Pumped for today's chat. #patientchat #wtfix
Dr. Kelly Shanahan @stage4kelly
T1. Patients are the ultimate stakeholders. we will work harder than anyone to drive research, report outcomes, figure out solutions #patientchat
Max Stroud @MMaxwellStroud
RT @power4patients: T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @wareFLO: @lisadbudzinski Lisa & @bbhomebody were the very first folks to take the plunge #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hello community. I'm Shereese, fierce advocate, writer, and healthcare tech strategist in Maryland #patientchat https://t.co/aoJwTGttW9
Kimberly Hartmann @fireflyrn84
@GraceCordovano Totally wiped out, I'm awake for the chat and then am going back down for the day. The first round of neuro dosing #IVIg royally kicked my butt. Horrible body aches, nausea and shakes. Got out of ICU yesterday...one day at a time #patientchat
Vera Rulon FAHIMA @vrulon
@yourgpsdoc "Nothing about us without us" #PatientChat
Melissa VanHouten @melissarvh
A1 Relationship-building & knowledge of the patient perspective (which, I assume, matters to most organizing and attending). #patientchat
HealthSparq @HealthSparq
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
lillian lake @llake
Hello! I'm a well-seasoned #caregiver / #youngcarer advocate as well as a caregiver presently. #patientchat
Alan Brewington @abrewi3010
T1 my patient story is the basis behind the care in #healthcare. Without patients at conferences it’s just academics. #patientchat
HealthSparq @HealthSparq
#patientchat
Max Stroud @MMaxwellStroud
RT @jamienholloway: T1: Patients at conferences build new collaborations, challenge new ideas, bring a sense of urgency and reality to a mo…
lillian lake @llake
RT @patientchat: I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Stephanie Fischer @RarePOV
T1 It is unrealistic to expect meaningful dialogue about how to improve healthcare w/o inclusion of multiple patients - not just a token patient but variety of viewpoints & experiences. #patientchat #patientsincluded
Alan Brewington @abrewi3010
RT @power4patients: T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat
Stephanie Fischer @RarePOV
RT @jamienholloway: T1: Patients at conferences build new collaborations, challenge new ideas, bring a sense of urgency and reality to a mo…
Lisa Davis Budzinski @lisadbudzinski
@burtrosen @HealthSparq Hi Mr Burt! #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T1 Benefits to including HC patients& other include increasing health literacy, trust between provider/others, develop listening/responding skills within a neutral setting, begin to develop new best practices. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat
Geeky Fox @TechKitsune
RT @stage4kelly: T1. Patients are the ultimate stakeholders. we will work harder than anyone to drive research, report outcomes, figure out…
Dr. Kelly Shanahan @stage4kelly
And there's a difference between patients attending conferences and being included in conferences. I go to a lot of conferences were patients attend but very few were patients are truly partners #patientchat https://t.co/ktKUkvAk0A
HealthSparq @HealthSparq
T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspectives. They are critical stakeholders in every #healthcare conversation & they have to be included. #patientchat #WTFix
Patient Empowerment @power4patients
@vrulon @yourgpsdoc AMEN #patientchat
Annette McKinnon @anetto
T1 Often see patients and family are very enthusiastic about passing on what they learn through tweets, blogs.,real life #patientchat
HealthSparq @HealthSparq
RT @RarePOV: T1 It is unrealistic to expect meaningful dialogue about how to improve healthcare w/o inclusion of multiple patients - not ju…
Patient Empowerment @power4patients
RT @RarePOV: T1 It is unrealistic to expect meaningful dialogue about how to improve healthcare w/o inclusion of multiple patients - not ju…
Kimberly Hartmann @fireflyrn84
T1: There is more of a whole view instead of what can be presented from just the #HCP or organization side. #patients & #carepartners have so much added value for everything in health care. It's us that are the reason everybody is in business #patientchat
Inspire @teaminspire
@jamienholloway T1: That latter point--the reality--is so important. I've had conference organizers thank me for helping steer patients/caregivers to them, because prior events "never had those perspectives even mentioned." -John N. #PatientChat
HealthSparq @HealthSparq
@llake Hi Lillian! Thanks for joining the chat! #patientchat #WTFix
Vera Rulon FAHIMA @vrulon
@abrewi3010 So true. Especially some of the pharma conferences. We're seeing more #patient attendance - yet still not enough #PatientChat
Annette McKinnon @anetto
Hi, Annette here in Toronto. The sun has come out from the fog. #patientchat
Karen Knops, MD @KMKnops
RT @lisadbudzinski: T1 By engaging the end user in the conversation will bring about more insight as recognized by: https://t.co/s69HoEGUJZ…
Kimberly Hartmann @fireflyrn84
@flareuphope Never late for this party! #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/4adf8e9pPh #patientchat
MD Connect @MDConnectInc
RT @power4patients: T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat
Lisa Davis Budzinski @lisadbudzinski
“Involving patients can spark collaborations with patients in healthcare design, education, research, and clinical care improvements” BMJ article #patientchat
Max Stroud @MMaxwellStroud
RT @stage4kelly: And there's a difference between patients attending conferences and being included in conferences. I go to a lot of confer…
lillian lake @llake
@patientchat A1 During the planning it's important to include a "non-academic" approach if you are expecting a broad audience, also it offers in general a different perspective. During the conference it engages all to have actual stories shared. #patientchat
Kimberly Hartmann @fireflyrn84
Totally agree! #patientchat https://t.co/5C1WpE6Zfa
Becky Brandt RN @bbhomebody
T1 Patients offer a direct account of what works & what doesn't work. We are highly educated in our diseases/illnesses and can save companies time & money with our healthcare knowledge. #PatientChat https://t.co/49VGkDgxNU
Dr. Kelly Shanahan @stage4kelly
Truth #patientchat https://t.co/t0JWtcvRcB
lillian lake @llake
RT @K_SalemOaks: T1. Adds value to the conference by creating a place for #pharma to bump into #patients and have #realconversations. #pati
Max Stroud @MMaxwellStroud
RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec…
Patient Empowerment @power4patients
@stage4kelly Excellent point, thanks for clarifying. #patientchat
Vera Rulon FAHIMA @vrulon
@Elizabe85727641 #Trust & #HealthLiteracy - these are key!! #PatientChat
Patient Critical Co-op @PatientCritical
T1: "For conference organizers, what’s the benefit in involving patients & care partners?" Foster cooperation/#innovation/#outcomes. Avoid creating things patients don't need. Deepen the level of discourse. Efficiently use of time & avoid costly assumptions. #patientchat https://t.co/FVXSgH1rnd
Whitney Petit @CfEpilepsy
Well hello #patientchat. It's been a long time for me!
lillian lake @llake
RT @JECallender: @patientchat T1: Conferences tend to emphasize existing solutions when I'm not sure we understand the problem. Inclusion…
Your GPS Doc, LLC @yourgpsdoc
@fireflyrn84 @GraceCordovano So sorry Kimberly! Praying you feel better soon! #patientchat
Patient Chat @patientchat
T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat
Becky Brandt RN @bbhomebody
RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec…
Alan Brewington @abrewi3010
T1 the question is are patients just being invited or are we included in conferences. We must be included. #medx #patientchat
Chronic Pain Network @cpn_rdc
RT @lisadbudzinski: “Involving patients can spark collaborations with patients in healthcare design, education, research, and clinical care…
Enlightening Results @GraceCordovano
I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #healthcare ✔️opportunity to learn ✔️potential to bridge silos ✔️get away from doing things "the way they've always been done" #patientchat https://t.co/1UIq80ZU8L
Kevin Freiert @K_SalemOaks
RT @stage4kelly: Truth #patientchat https://t.co/t0JWtcvRcB
Lisa Davis Budzinski @lisadbudzinski
Involve the patients & caregivers who are the boots on the ground perspective #patientchat
lillian lake @llake
@JECallender @patientchat Yes and I'm sure there are commonalities. Commonalities of problems can lead to commonalities of solutions. #patientchat
Patient Critical Co-op @PatientCritical
What a nice metaphor for patients beginning to be recognized at conferences :) #patientchat https://t.co/50O0wAkO7W
Stephanie Fischer @RarePOV
T1 I was at a #raredisease conference last week that had a panel on patient engagement - with NO patients. Including a patient w/ experience working w/ biopharma companies who could share what worked & what didn't would have really added value. #PatientsIncluded. #PatientChat https://t.co/jNcXdHnfXe
Kimberly Hartmann @fireflyrn84
@yourgpsdoc @GraceCordovano Thank you! Me too, my body has been through the wringer later #patientchat
Tattered Edge @tatterededge
RT @jamienholloway: T1: Patients at conferences build new collaborations, challenge new ideas, bring a sense of urgency and reality to a mo…
Patient Chat @patientchat
RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he
Kimberly Hartmann @fireflyrn84
Spot on, Grace! #patientchat https://t.co/RLodHkedgq
ElizabethKelly, Ph.D @Elizabe85727641
@anetto Has spring come to you yet? #patientchat
Vera Rulon FAHIMA @vrulon
T2: I ask that a patient or caregiver speak with me often - such as with @HealthHats at a recent @MGMA conference - was doing this for many years @ pharma conf even when it wasn't a very popular notion #PatientChat
HealthSparq @HealthSparq
RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he
Melissa VanHouten @melissarvh
T2 Spoke @ AGMD (@gimotility) conference 2 medical pros & others re daily struggles of patients in my #Gastroparesis community #patientchat
Max Stroud @MMaxwellStroud
Patient voices are mission critical at #healthcare conferences, because it is through stories that we develop empathy, understanding and insights. #WTFix #patientchat
Whitney Petit @CfEpilepsy
RT @HealthSparq: 👇 #WTFix #PatientChat https://t.co/9MCo5VCSZD
Patient Chat @patientchat
RT @PatientCritical: T1: "For conference organizers, what’s the benefit in involving patients & care partners?" Foster cooperation/#innova
HealthSparq @HealthSparq
T2! #PatientChat #WTFix https://t.co/kFoNLR5VF5
Lenny @lltaylor88
Hi! Lori just joined. I have an immune deficiency called CVID #patientchat
Angela Cohen @angelee828
T1: IMO It gives Pts, Drs, scientists, caregivers, etc., a chance to see a different perspective, have an open & perhaps longer dialogue than they could in a clinic/research setting. Ppl meeting/for a mutual goal/mutual interest who might not have met otherwise. #patientchat
Inspire @teaminspire
@abrewi3010 T1: Agreed. If it feels that the conference organizer is seeking a patient/caregiver speaker as window dressing, it usually is window dressing. When I'm approached to help conference programmers, I ask, "What is the patient expected to DO?" --John N. #patientchat
Alan Brewington @abrewi3010
Patients are amazing designers and highly educated in clinical trials. We add value. #patientchat https://t.co/MaNSDTidVL
Lisa Davis Budzinski @lisadbudzinski
@power4patients Thank you! #PatientChat
Candace @RareCandace
Jumping in late- Hi everyone! Candace here- I'm a rare disease patient, health policy consultant and a lawyer (hooray!) #patientchat
Enlightening Results @GraceCordovano
@MMaxwellStroud Nailed it. No MBA, PhD, MD, or any degree will give you the value of those perspectives. Engaging & welcoming patients & carepartners is smart business sense. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he
Stephanie Fischer @RarePOV
RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec…
Annette McKinnon @anetto
@Elizabe85727641 Thanks Yes, we have tulips, daffodils, crocuses and starting to see leaves on the trees #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat
Vera Rulon FAHIMA @vrulon
On point!! #patientchat https://t.co/1rPgTWypQG
Alan Brewington @abrewi3010
RT @bbhomebody: T1 Patients offer a direct account of what works & what doesn't work. We are highly educated in our diseases/illnesses and…
Stephanie Fischer @RarePOV
RT @stage4kelly: And there's a difference between patients attending conferences and being included in conferences. I go to a lot of confer…
ShereeseM, MS/MBA @ShereesePubHlth
T1 Involving patients furthers the notion of transparency, consideration of the patient POV, & furthering the ideals of true collaborative strategies #patientchat https://t.co/lTIhlgv58R
Geeky Fox @TechKitsune
T2: I'll be honest I haven't been to too many just yet. Though the ones i did go to, I found making someone's day was as simple as conversations. Went to dinner with someone I didn't know because we were both alone. Best conversation in a while. #PatientChat
Kimberly Hartmann @fireflyrn84
T2: I can say that this year's #WTFix conference has truly taken a lot of feedback from us, their Digital Advisory Board. We really are making a difference. Hopefully it's something that everyone will recognize in a couple of weeks! #patientchat
Kevin Freiert @K_SalemOaks
RT @teaminspire: @abrewi3010 T1: Agreed. If it feels that the conference organizer is seeking a patient/caregiver speaker as window dressin…
Whitney Petit @CfEpilepsy
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Kimberly Hartmann @fireflyrn84
Exactly, always included! #patientchat https://t.co/xgcjQCx0KN
Chuck Webster MD MS AI MS Industrial Engineering @wareFLO
@GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Health in Social Virtual Reality: Personal, Respectful, Insightful https://t.co/kS62mrGecQ #Patientchat As a result I changed the focus of the series (but still evolving) https://t.co/ByUvyeyTYj
John M. Trumbo @JohnMTrumbo
RT @PatientCritical: T1: "For conference organizers, what’s the benefit in involving patients & care partners?" Foster cooperation/#innova
Patient Empowerment @power4patients
RT @HealthSparq: T2! #PatientChat #WTFix https://t.co/kFoNLR5VF5
ShereeseM, MS/MBA @ShereesePubHlth
RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt…
Melissa VanHouten @melissarvh
T2 Helped promote understanding of not just physical but mental/emotional aspects of digestive disorders patients; advocacy #patientchat
laminopathies support group @laminopathies
T2. I'm not sure if I made a real difference, but I shined a light on ridiculous rare disease drug pricing and unfair practices that stem from bizarre medical culture. #patientchat
Patty Keiler @pkeiler
RT @MMaxwellStroud: Patient voices are mission critical at #healthcare conferences, because it is through stories that we develop empathy,…
Your GPS Doc, LLC @yourgpsdoc
RT @MMaxwellStroud: Patient voices are mission critical at #healthcare conferences, because it is through stories that we develop empathy,…
Whitney Petit @CfEpilepsy
RT @JECallender: @patientchat T1: Conferences tend to emphasize existing solutions when I'm not sure we understand the problem. Inclusion…
Kimberly Hartmann @fireflyrn84
@K_SalemOaks Great point! Always good to have patients have opportunities with #pharma, but good overall! #patientchat
Max Stroud @MMaxwellStroud
When I first presented at @himss with my sister, the experience was incredible and the feedback fantastic. My favorite email after the presentation read "I am a software developer and because of your talk I am changing my approach" #wtfix #patientchat https://t.co/UEs47xcwKL
Vera Rulon FAHIMA @vrulon
@TechKitsune I love that! Making a difference one person at a time. #PatientChat
Flareuphope @flareuphope
T2: I participate in a Patient Advisory Board with Pfizer and have felt very much appreciated and heard. I'm excited to see what improvements they will be bringing forward soon to improve patient barriers for those of us with IBD. #patientchat
IFFGD @IFFGD
RT @melissarvh: T2 Helped promote understanding of not just physical but mental/emotional aspects of digestive disorders patients; advocacy…
Inspire @teaminspire
RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt…
Max Stroud @MMaxwellStroud
RT @GraceCordovano: @MMaxwellStroud Nailed it. No MBA, PhD, MD, or any degree will give you the value of those perspectives. Engaging & wel…
HealthSparq @HealthSparq
@RareCandace Hi Candace! Thanks for joining! #WTFix #patientchat
Melissa VanHouten @melissarvh
RT @laminopathies: T2. I'm not sure if I made a real difference, but I shined a light on ridiculous rare disease drug pricing and unfair pr…
Enlightening Results @GraceCordovano
@RarePOV So typical. I cringe when I see all the big name healthcare conferences hosting panels & discussions on solving various aspects of healthcare without a patient in sight. #patientchat https://t.co/lhXXrzyOW0
Lisa Davis Budzinski @lisadbudzinski
RT @GraceCordovano: @MMaxwellStroud Nailed it. No MBA, PhD, MD, or any degree will give you the value of those perspectives. Engaging & wel…
HealthSparq @HealthSparq
RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt…
Melissa VanHouten @melissarvh
RT @ShereesePubHlth: T1 Involving patients furthers the notion of transparency, consideration of the patient POV, & furthering the ideals o…
Kimberly Hartmann @fireflyrn84
@bbhomebody Patients are the "experts" in their own conditions. Why not include us for everything? #patientchat
Flareuphope @flareuphope
#patientchat https://t.co/8N5SxB3a08
Enlightening Results @GraceCordovano
@vrulon @HealthHats @MGMA Love this! More of this please! #patientchat
Alan Brewington @abrewi3010
T2 #Medx has been an incredible experience & growing experience for me. Meeting @nickdawson @danamlewis @RemRunner @emilykg1 @terriwingham & so many others helped me find my voice. #patientchat
Vera Rulon FAHIMA @vrulon
@laminopathies I'm sure you did. Raising issues is step one... now we need ensure that #healthcare acts on them!! #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @MMaxwellStroud Thank you both very much for saying that!! Most of us are experts by experience #PatientChat
Whitney Petit @CfEpilepsy
RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec…
Inspire @teaminspire
@fireflyrn84 T1: If the speaker invitation to patients/caregivers comes early, and there's invitations to shape the session and more, that's a good sign. If it's days before the event? Not so good. #patientchat
HealthSparq @HealthSparq
@flareuphope Do they have a specific conference (or events) that you participate in & help shape? #WTFix #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T2 working with a group of other community based nurses we met at different locations where the community members shared planning meeting, attended all meetings as panel members, offered their experiences. Terrific experience! #patientchat
Flareuphope @flareuphope
RT @GraceCordovano: @MMaxwellStroud Nailed it. No MBA, PhD, MD, or any degree will give you the value of those perspectives. Engaging & wel…
Lisa Davis Budzinski @lisadbudzinski
RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt…
Annette McKinnon @anetto
FYI #PatientChat: Share your experiences as patient or caregiver at a healthcare conference. Take this @patientadvisors survey https://t.co/Blhr47IDze Beyond #PatientsIncluded How can conferences be improved?
Kimberly Hartmann @fireflyrn84
That is making a difference no matter what. No matter how big or small, we make a difference! #patientchat https://t.co/cpokiYUgTU
Candace @RareCandace
T2: I spoke at World Congress' Patient Advocacy Summit on working with Congress- received a lot of positive feedback #patientchat
Your GPS Doc, LLC @yourgpsdoc
@MMaxwellStroud @HIMSS That is so awesome! #patientchat
Patient Chat @patientchat
RT @MMaxwellStroud: Folks with chronic illness are the "superusers" of healthcare systems, they can tell you where the pain-points are in t…
Lisa Davis Budzinski @lisadbudzinski
@wareFLO @GraceCordovano You're doing a great job Dr. Webster! #PatientChat
Vera Rulon FAHIMA @vrulon
@flareuphope My old alma mater!! @Roslyndoc is doing great work in #patient inclusion there! #PatientChat
Alan Brewington @abrewi3010
This X 10000000. No more window dressing, let’s get to work. #patientchat https://t.co/pKat7TC0hb
Stephanie Fischer @RarePOV
T2 Patients & care partners need biopharma companies & suppliers to ask how conferences include patients before agreeing to sponsor, exhibit or speak. @michelerhee recently had conference organizer contact me to discuss how to include more patients. #patientchat #PatientsIncluded
HealthSparq @HealthSparq
RT @GraceCordovano: @RarePOV So typical. I cringe when I see all the big name healthcare conferences hosting panels & discussions on solvin…
Becky Brandt RN @bbhomebody
T2 We @Cpnervecenter attended #raredc2018 . We shared our personal rare disease stories with legislators. Many were deeply moved and will no doubt remember what patients like us need when voting for healthcare issues. #patientchat
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @RarePOV: T2 Patients & care partners need biopharma companies & suppliers to ask how conferences include patients before agreeing to sp…
Patient Critical Co-op @PatientCritical
T2: I've consulted to a few conferences to ensure patient perspective represented in a way that would allow patients to feel welcomed AND involved in meaningful ways--where patients have equal value, no power differential, & life experience means as much as degrees. #patientchat
Kimberly Hartmann @fireflyrn84
@teaminspire Great point, John! We want the invites early. It shows that there is definitely an interest and that it wasn't casually thrown out and an afterthought. #patientchat
HealthSparq @HealthSparq
@MMaxwellStroud @HIMSS That is AMAZING!!! #WTFix #PatientChat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/4adf8e9pPh #patientchat
Enlightening Results @GraceCordovano
@MMaxwellStroud @HIMSS That is so awesome! Its so true. Words matter. Stories are powerful. All we need to do is include them and listen. #patientchat
lillian lake @llake
RT @GraceCordovano: @RarePOV So typical. I cringe when I see all the big name healthcare conferences hosting panels & discussions on solvin…
Lisa Davis Budzinski @lisadbudzinski
@melissarvh This very s huge! Emotional health is a huge aspect of #chronicillness#PatientChat
Tattered Edge @tatterededge
RT @stage4kelly: And there's a difference between patients attending conferences and being included in conferences. I go to a lot of confer…
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T2 We @Cpnervecenter attended #raredc2018 . We shared our personal rare disease stories with legislators. Many were deeply…
Dr. Kelly Shanahan @stage4kelly
RT @RarePOV: T2 Patients & care partners need biopharma companies & suppliers to ask how conferences include patients before agreeing to sp…
Becky Brandt RN @bbhomebody
@fireflyrn84 PREACH IT GIRL! #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @RarePOV: T2 Patients & care partners need biopharma companies & suppliers to ask how conferences include patients before agreeing to sp…
Annette McKinnon @anetto
T2 I'll be on a panel and was also on organizing committee for #eHealth2018. Their first year as #patientsincluded #patientchat
Patient Chat @patientchat
T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
Melissa VanHouten @melissarvh
RT @lisadbudzinski: @melissarvh This very s huge! Emotional health is a huge aspect of #chronicillness#PatientChat
Enlightening Results @GraceCordovano
@fireflyrn84 @teaminspire So true! And patients & carepartners know that that is a "check the box" tokenism move. Not a great start to any relationship. #patientchat
HealthSparq @HealthSparq
#Patient stories are so key to changing perspectives! #patientchat https://t.co/Ps0qdEudlA
HealthSparq @HealthSparq
RT @patientchat: Topic 3 (T3:) coming up...https://t.co/4adf8e9pPh #patientchat
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T2 I'll be on a panel and was also on organizing committee for #eHealth2018. Their first year as #patientsincluded #patientchat
Enlightening Results @GraceCordovano
@bbhomebody @Cpnervecenter You guys rock! #patientchat
Vera Rulon FAHIMA @vrulon
T3: Unique - real life stories - those that raise the shortcoming of #healthcare - also bring in those aspects of health that are "beyond the pill" or surgery or etc. #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@melissarvh Yikes! I need more coffee😀 I hope you were able to decipher the above✨ #PatientChat
HealthSparq @HealthSparq
RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
Kimberly Hartmann @fireflyrn84
RT @bbhomebody: @fireflyrn84 PREACH IT GIRL! #PatientChat
Enlightening Results @GraceCordovano
RT @RarePOV: T2 Patients & care partners need biopharma companies & suppliers to ask how conferences include patients before agreeing to sp…
Max Stroud @MMaxwellStroud
RT @GraceCordovano: @MMaxwellStroud @HIMSS That is so awesome! Its so true. Words matter. Stories are powerful. All we need to do is includ…
Patient Critical Co-op @PatientCritical
A2: Patients at established conferences make some others takeholders nervous, or resentful. Just as some dr's don't want feedback or to #codesign care, some events resist change or patient input in priorities. It's a struggle.We can't lash out, & can't back down. #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
Patient Empowerment @power4patients
RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
Melissa VanHouten @melissarvh
T3 Know hidden daily struggles (mine & group members'), major symptoms/burdens, & QoL issues of #Gastroparesis #FGID patients. #patientchat
Linda Stotsky @EMRAnswers
RT @vrulon: T3: Unique - real life stories - those that raise the shortcoming of #healthcare - also bring in those aspects of health that a…
Candace @RareCandace
T3: In addition to being a patient, I am also an attorney, I have my healthcare compliance certification & political experience #patientchat
Annette McKinnon @anetto
T2 Just as a tip for other Canadian engaged patients @CMA_Docs is supporting up to 20 patients to their Winnipeg #CMASummit #patientchat
Lisa Davis Budzinski @lisadbudzinski
@anetto Annette this is great!! 👏👏👏👏 #PatientChat
Vera Rulon FAHIMA @vrulon
@GraceCordovano @fireflyrn84 @teaminspire Yes!! #nomoreboxchecking #PatientChat
Dr. Kelly Shanahan @stage4kelly
T3. I'm a patient AND a doctor, so I get the hurdles of regulations and how time consuming science can be, but as a patient I understand the urgency. I know we can think outside the box to make change happen. #PatientChat
Alan Brewington @abrewi3010
T3 I only speak chronic patient. This language is unique to fellow patients & are #caregivers. It’s not included in med school enough. Need common language for active communication #patientchat
Candace @RareCandace
T3: I can bring in a very unique perspective from all levels of the policy front- local to national. State & Federal. #patientchat
Geeky Fox @TechKitsune
T3: I work on the digital side of marketing. And I have told other technical chats that websites and social media use is subpar in healthcare. It could be better with what digital patients expect to see! Proper internet etiquette if you will? #patientchat
laminopathies support group @laminopathies
T3 natural history of the disease. #patientchat
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T2 Just as a tip for other Canadian engaged patients @CMA_Docs is supporting up to 20 patients to their Winnipeg #CMASummit #pa
Flareuphope @flareuphope
#patientchat T3: As a patient who has had to fight for all aspects of health to be part of her treatment plan, I'm extremely passionate about making sure all patient voices be heard and that patients receive clear direction and support at initial diagnosis.
Whitney Petit @CfEpilepsy
RT @patientchat: T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat
Whitney Petit @CfEpilepsy
RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
Lisa Davis Budzinski @lisadbudzinski
T3 I am a patient and caregiver with 30+ years of experience. Living with my conditions on a daily basis gives me more insight. Daily exposure whether being a patient or caregiver, brings a lot of knowledge that is missing from the conversation #PatientChat https://t.co/lRRhsJCQfC
Enlightening Results @GraceCordovano
@teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how things could have been done better, where did things fall short? Ask for their insights! Don't cut them off on stage to share the marvels of your treatment/expertise #patientchat
HealthSparq @HealthSparq
RT @flareuphope: #patientchat T3: As a patient who has had to fight for all aspects of health to be part of her treatment plan, I'm extreme…
Melissa VanHouten @melissarvh
@lisadbudzinski I got it just fine, Ms. Lisa! And, boy, do I ever understand the coffee need! Cup in hand right now. #PatientChat
Max Stroud @MMaxwellStroud
RT @stage4kelly: T3. I'm a patient AND a doctor, so I get the hurdles of regulations and how time consuming science can be, but as a patien…
Inspire @teaminspire
T2: I myself had zero to do with it, but the Sheridans' session at #HIMSS18 was fantastic--one of the best I've seen lately: https://t.co/cwNw01e1n7. Smart, practical, warm, solutions-oriented. HT @K_Sheridan1 #patientchat
Candace @RareCandace
I'm also speaking in June at the Rare Disease Innovation Summit, I'm excited to share my knowledge https://t.co/sE4Afn9ALd #patientchat
Kimberly Hartmann @fireflyrn84
T3: No patient has a story that is the same. We bring uniqueness just by showing up. Our stories and journeys have led us all on different paths. You aren't going to get the same answer from any patient. We ALL have a million things that are unique to contribute #patientchat
Patient Critical Co-op @PatientCritical
A2: Have to mention that #healthliteracy isn't just teaching patients how to advocate for the best care... it's aslo teaching advocates how to interact with partner stakeholders. It's our job to create fertile ground for cooperation, cautions not to widen divides. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@melissarvh #PatientChat https://t.co/2Vl3QvaM3v
Kevin Freiert @K_SalemOaks
T3. I have always been a translator. I speak fluent pharm-ese and can rephrase in plain language. #patientchat #WTFix
Kimberly Hartmann @fireflyrn84
RT @lisadbudzinski: @melissarvh This very s huge! Emotional health is a huge aspect of #chronicillness#PatientChat
Manishree Bhattacharya @ManishreeBhatt1
@patientchat Involving patients and caregivers in conferences will bring out real world stories, pain-points, evidences and help industry stakeholders identify the real challenges they need to solve, or get real-time feedback. #patientchat
HealthSparq @HealthSparq
RT @teaminspire: T2: I myself had zero to do with it, but the Sheridans' session at #HIMSS18 was fantastic--one of the best I've seen latel…
Melissa VanHouten @melissarvh
RT @fireflyrn84: T3: No patient has a story that is the same. We bring uniqueness just by showing up. Our stories and journeys have led us…
Vera Rulon FAHIMA @vrulon
@stage4kelly Thank you!! The culture of #healthcare must change. Can't be addressed if we silo each perspective. #Collaborate #Simplify #PatientChat
Max Stroud @MMaxwellStroud
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
Enlightening Results @GraceCordovano
@stage4kelly Missing all of my #bcsm friends! SO happy to see you here. Yes, understanding that urgency first hand can move mountains and then some. Loving the @bonniejaddario story on the #ROS1nders. #patientchat
HealthSparq @HealthSparq
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
lillian lake @llake
@patientchat A2 Caregivers conference open to the public. Doctors and "professionals" presented, geared to credits, rather than the public. The two should have been separate. It turned to "burnout" only in regard to nurses I spoke for the caregivers which lead to more sharing. #patientchat
Melissa VanHouten @melissarvh
RT @lisadbudzinski: T3 I am a patient and caregiver with 30+ years of experience. Living with my conditions on a daily basis gives me more…
Angela Cohen @angelee828
T2: I will be co-moderating a conference for my first time on May 12th. I was flattered and humbled that I was even asked. But also, we were asked for imput from the start. The doctor putting it together ensured that there were #patientsincluded the whole way. #patientchat
Max Stroud @MMaxwellStroud
RT @teaminspire: T2: I myself had zero to do with it, but the Sheridans' session at #HIMSS18 was fantastic--one of the best I've seen latel…
Melissa VanHouten @melissarvh
RT @flareuphope: #patientchat T3: As a patient who has had to fight for all aspects of health to be part of her treatment plan, I'm extreme…
HealthSparq @HealthSparq
@GraceCordovano @teaminspire @abrewi3010 Real people, real stories, true experiences! #WTFix #patientchat
Annette McKinnon @anetto
T3 I spent 20 years as a market researcher, using over 5500 questionnaires, often in medical areas. Useful background. #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T3 Health & illness perspective after 40 years working in HC, + community health development education/program development, & recipient of several years of miss dx. #patientchat
Patient Critical Co-op @PatientCritical
If you're inviting a patient as a token, a proof of your enlightened results (sorry :) you've already lost. Conferences discuss what the empowered decide to discuss. Patients need to have a voice in setting the agenda, or their voices get cut off at the pass. #patientchat https://t.co/DWKEAqSmlH
Kevin Freiert @K_SalemOaks
RT @PatientCritical: A2: Have to mention that #healthliteracy isn't just teaching patients how to advocate for the best care... it's aslo t…
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T3 I spent 20 years as a market researcher, using over 5500 questionnaires, often in medical areas. Useful background. #patien
Stephanie Fischer @RarePOV
T3 Each patient experience is unique but we may share concerns & agree on changes needed. I think of opportunities to participate in events such as #RareDC2018 as a responsibility to represent many #raredisease patients who can't be there due to health, finances, etc #patientchat
Enlightening Results @GraceCordovano
RT @anetto: T2 Just as a tip for other Canadian engaged patients @CMA_Docs is supporting up to 20 patients to their Winnipeg #CMASummit #pa
Dr Javeed Sukhera @javeedsukhera
RT @PatientCritical: If you're inviting a patient as a token, a proof of your enlightened results (sorry :) you've already lost. Conferenc…
Your GPS Doc, LLC @yourgpsdoc
T3: Nothing compares to hearing about a disease from a patient’s perspective. As a doc, this has truly enriched my conference experience. #patientchat https://t.co/M5hA1wUmfa
Kimberly Hartmann @fireflyrn84
@angelee828 that's awesome! Congrats!! #patientchat
HealthSparq @HealthSparq
@angelee828 That is awesome! Congrats! Which conference?? #PatientChat #WTFix
Laurus @LaurusT001
RT @anetto: T3 I spent 20 years as a market researcher, using over 5500 questionnaires, often in medical areas. Useful background. #patien
Alan Brewington @abrewi3010
Also, ask patients what they did right? Give patients the opportunity to break what does work to see what growth can happen. If it’s not broke, break it. #patientchat https://t.co/er0KnqZ3ii
Flareuphope @flareuphope
RT @yourgpsdoc: T3: Nothing compares to hearing about a disease from a patient’s perspective. As a doc, this has truly enriched my conferen…
John M. Trumbo @JohnMTrumbo
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
Linda Stotsky @EMRAnswers
@patientchat T3: Living the paradox of #carecoordination, #medicationreconciliation, #ptsafety adverse events, Cancer tx & #SDOH, allow me to bring unique perspectives of the HC system, from 1st person perspectives. #Transparency #WTFix #Patientchat
burtrosen @burtrosen
T3: we can bring the human being side and the needs perspective which is something events don't take into account enough #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @bbhomebody @Cpnervecenter That means a lot to us, thank you✨#PatientChat https://t.co/0IOxAt3nDo
lillian lake @llake
RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he
Kimberly Hartmann @fireflyrn84
@GraceCordovano @teaminspire @abrewi3010 Great point, Grace! #patientchat
Alan Brewington @abrewi3010
RT @fireflyrn84: T3: No patient has a story that is the same. We bring uniqueness just by showing up. Our stories and journeys have led us…
lillian lake @llake
RT @RarePOV: T1 It is unrealistic to expect meaningful dialogue about how to improve healthcare w/o inclusion of multiple patients - not ju…
Stephanie Fischer @RarePOV
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
HealthSparq @HealthSparq
🙌🏼#WTFix #PatientChat #patientsincluded🙌🏼 https://t.co/28tORBsffG
Kimberly Hartmann @fireflyrn84
RT @yourgpsdoc: T3: Nothing compares to hearing about a disease from a patient’s perspective. As a doc, this has truly enriched my conferen…
Annette McKinnon @anetto
T3 The experience of being a member of patient groups since pre-google has informed my insights. I know what patients say. #patientchat
Linda Stotsky @EMRAnswers
RT @HealthSparq: @GraceCordovano @teaminspire @abrewi3010 Real people, real stories, true experiences! #WTFix #patientchat
D Flood @myglobalpac
RT @teaminspire: @abrewi3010 T1: Agreed. If it feels that the conference organizer is seeking a patient/caregiver speaker as window dressin…
Linda Stotsky @EMRAnswers
RT @K_SalemOaks: T3. I have always been a translator. I speak fluent pharm-ese and can rephrase in plain language. #patientchat #WTFix
Enlightening Results @GraceCordovano
T3: Many practicing doctors enjoy hearing patients & carepartners speak from the stage or at a conference. They say they don't have the opportunity or time to hear such powerful accounts. #BeTheChange #Patientchat https://t.co/AbFhlrOoku
D Flood @myglobalpac
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/4adf8e9pPh #patientchat
John Lynn @techguy
If the conference is organized properly, then there are plenty of engagement opportunities for patients voices to be heard. I think the impact patients can have on a conference is often through the individual engagements as much or more than the overall agenda. #patientchat https://t.co/sjTVqTTrL4
Dr. Kelly Shanahan @stage4kelly
@K_SalemOaks I have a similar skill in translating medicalese (doctor speak) into plain English. #PatientChat
Alan Brewington @abrewi3010
RT @HealthSparq: @GraceCordovano @teaminspire @abrewi3010 Real people, real stories, true experiences! #WTFix #patientchat
Becky Brandt RN @bbhomebody
T3 As a nurse, patient & advocate, my perspectives are multifaceted. #intractablepain (and all diseases) require incredible Patience, Knowledge, Resilience, and EMPATHY. What I learn as a patient, I share as a nurse & advocate. I can offer several points of view. #PatientChat https://t.co/CfWxtx433U
Max Stroud @MMaxwellStroud
So often in #healthcare people want answers, and embracing #patientstories means also embracing questions, problems, frustrations. Conference organizers benefit when they are able to embrace the discomfort that some patient stories can bring. #wtfix #patientchat
Whitney Petit @CfEpilepsy
T3: As a patient, I have one of the best perspectives. Why not have real-time, human, personable feedback to go off of than data only backed research to help advance the studies of MY care. #patientchat
Denise Silber @health20Paris
RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt…
Lisa Davis Budzinski @lisadbudzinski
@EMRAnswers @patientchat Hi Linda!! #PatientChat This chat is going so fast, I didn't want to miss you ✨
Lisa Davis Budzinski @lisadbudzinski
RT @GraceCordovano: T3: Many practicing doctors enjoy hearing patients & carepartners speak from the stage or at a conference. They say the…
HealthSparq @HealthSparq
@GraceCordovano Couldn't a practicing doctor ask their patients for this kind of story/input/experience directly? #WTFix #PatientChat
Annette McKinnon @anetto
@K_SalemOaks Good skill. When I retired my ambition was to learn to speak 'medical' (without acronyms) #patientchat
Patient Chat @patientchat
T4: If you could tell conference organizers one thing, what would it be and why? #patientchat
D Flood @myglobalpac
RT @jamienholloway: T1: Patients at conferences build new collaborations, challenge new ideas, bring a sense of urgency and reality to a mo…
HealthSparq @HealthSparq
RT @MMaxwellStroud: So often in #healthcare people want answers, and embracing #patientstories means also embracing questions, problems, fr…
Kimberly Hartmann @fireflyrn84
Ditto! #patientchat https://t.co/CuLMGCcQ2O
Erin Moriarty Wade @EMoriartyWade
@patientchat T1 It also helps researchers to remember why they are doing this...for patients...these are the people whose lives and quality of lives is at stake. #patientchat
Enlightening Results @GraceCordovano
T3: Bringing awareness to the unmet needs, the barriers, the grief, the joy, the financial toxicities, the challenges people face daily in the midst of a diagnosis. #patientchat https://t.co/AbFhlrOoku
HealthSparq @HealthSparq
T4! #patientchat #WTFix https://t.co/16udNdS7KI
Linda Stotsky @EMRAnswers
@HealthSparq T2: (Catching up). #HIMSS in 2015. I shared mine and my Mothers story- it was cathartic and rewarding, as if I was bringing my Mom with me,carrying her flag, and sharing with 46k friends. #patientchat #WTFix
Vera Rulon FAHIMA @vrulon
T4: One thing (well maybe 2 or 3 or 4) - treat #patients as you would any experts - invite, listen, act on, reimburse #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @ManishreeBhatt1: @patientchat Involving patients and caregivers in conferences will bring out real world stories, pain-points, evidence…
Patient Critical Co-op @PatientCritical
A3: Patients and those speaking for them bring a perspective historically absent from #healthcare. One way is to tell stories to share understanding & #empathy, to hold a mirror to every other stakeholder. People see things in a mirror they didn't notice before. #patientchat https://t.co/XNU1ZomGyH
Inspire @teaminspire
@flareuphope @GraceCordovano @abrewi3010 T1: This raises the point of patients/caregivers feeling good about the moderator. I recall helping get a man with stage IV lung cancer on a panel & a fellow panelist turning it into an advertorial about his solution. The moderator, to his credit, cut the guy off. #patientchat
HealthSparq @HealthSparq
@lisadbudzinski @EMRAnswers @patientchat It REALLY is going so fast! Hi to both of you :) #WTFix #patientchat
John M. Trumbo @JohnMTrumbo
T3: innovative #healthIT solutions can be powerful tools but only if they work together and advance the #PatientExperience #PatientChat
Becky Brandt RN @bbhomebody
@GraceCordovano @Cpnervecenter Grace we Love you! Thanks so much! And you are EXTRAORDINARY at what you do! Patients are lucky when they find you! #PatientChat
HealthSparq @HealthSparq
RT @GraceCordovano: T3: Bringing awareness to the unmet needs, the barriers, the grief, the joy, the financial toxicities, the challenges p…
Patient Empowerment @power4patients
RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat
Hello Vera Juice @JuliaTugwell
RT @GraceCordovano: T3: Many practicing doctors enjoy hearing patients & carepartners speak from the stage or at a conference. They say the…
Enlightening Results @GraceCordovano
T4: Read & embrace #PatientsIncluded now! 🚀🎯 #patientchat https://t.co/iRTmoEWmPE
nobism @nobismhealth
RT @JohnMTrumbo: T3: innovative #healthIT solutions can be powerful tools but only if they work together and advance the #PatientExperience
lillian lake @llake
@JECallender @patientchat I was saying that by including all sides commonalities can be found. And both sides need to do the inviting. And sometimes as caregivers, we can't and shouldn't wait for an invite, we have to invite ourselves. #patientchat
HealthSparq @HealthSparq
@EMoriartyWade @patientchat Yes! Giving a face to the research! #WTFix #PatientChat
Vera Rulon FAHIMA @vrulon
@anetto @K_SalemOaks A sorely needed skill #patientchat
Lisa Davis Budzinski @lisadbudzinski
@angelee828 Awww yay!!! 👏👏👏👏✨💕 #Patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @HealthSparq: @GraceCordovano @teaminspire @abrewi3010 Real people, real stories, true experiences! #WTFix #patientchat
lillian lake @llake
RT @GraceCordovano: T3: Bringing awareness to the unmet needs, the barriers, the grief, the joy, the financial toxicities, the challenges p…
HealthSparq @HealthSparq
RT @vrulon: T4: One thing (well maybe 2 or 3 or 4) - treat #patients as you would any experts - invite, listen, act on, reimburse #PatientC
Linda Stotsky @EMRAnswers
@HealthSparq @GraceCordovano Physicians are so overworked and trying hard to keep up with rules and regs. Its always great when they listen to issues, yet our HC is still reactive, not proactive, so "ahead of time" convos dont take place. #patientchat #WTFIx
Candace @RareCandace
T4: Vet patients very carefully, especially if they're speaking on legal issues. I've seen ethical lines crossed by "advocates" #patientchat
HealthSparq @HealthSparq
RT @EMRAnswers: @HealthSparq T2: (Catching up). #HIMSS in 2015. I shared mine and my Mothers story- it was cathartic and rewarding, as if I…
Flareuphope @flareuphope
RT @GraceCordovano: T3: Bringing awareness to the unmet needs, the barriers, the grief, the joy, the financial toxicities, the challenges p…
Annette McKinnon @anetto
T4 I would talk to them about the valuable perspectives patients bring, and their skill at spreading what they learn. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq @EMRAnswers @patientchat Hi Anna!!! #PatientChat
Patient Empowerment @power4patients
T4: If nothing else works, show them this: https://t.co/Jx9Y3yPpSq the ultimate WIIFM for conf organizers #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat
Alan Brewington @abrewi3010
T4 Access is how beneficial conversation happens. This means free live streaming, thought out hashtags, Patient scholarships, pay patients for their expertise #patientchat
Vera Rulon FAHIMA @vrulon
@bbhomebody @GraceCordovano @Cpnervecenter I couldn't agree more about Grace!!! #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @Elizabe85727641: T3 Health & illness perspective after 40 years working in HC, + community health development education/program develop…
Patient Critical Co-op @PatientCritical
You're so right John, individual engagements matter. But many opportunities only happen when conferences are designed to put different pairs together to allow surprise discoveries & connections. That only happens when patients are part of planning beforehand. #patientchat https://t.co/0thaDwhPst
Enlightening Results @GraceCordovano
@HealthSparq Not all patients are comfortable engaging with their doctors. Many attending conferences and speaking from the stage have a voice that doctors are not used to seeing in their daily clinic. #patientchat
Jamie Holloway, PhD @jamienholloway
I think it's important to consider the main conference audience. The patient role will be different when talking to regulators, doctors, nurses, scientists... #PatientChat
Melissa VanHouten @melissarvh
T4 We are educated, passionate, capable people who wish to be involved in our own care. You can speak to us. It will be okay. #patientchat
Dr. Kelly Shanahan @stage4kelly
T4. Have patients as equal partners on the planning committee - involve us from day one for a richer, more meaningful conference for everyone #PatientChat
HealthSparq @HealthSparq
#patientsincluded 👉 https://t.co/sufhy8M7DF #patientchat #WTFix https://t.co/PMNK0TsMSp
Jamie Holloway, PhD @jamienholloway
RT @stage4kelly: T4. Have patients as equal partners on the planning committee - involve us from day one for a richer, more meaningful conf…
Patient Chat @patientchat
RT @EMoriartyWade: @patientchat T1 It also helps researchers to remember why they are doing this...for patients...these are the people whos…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat
laminopathies support group @laminopathies
T4. I would tell them there should be no conference too elite to disallow patients to attend. Ahem, Heart Rhythm Societ. HRS. #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat
Vote November 6th @JECallender
@patientchat A customer-product paradigm model that would provide the backbone to a very patient-centric experience in pharma and healthcare. #patientchat
Geeky Fox @TechKitsune
T4: Create a world where patients can come, be heard, explore, learn, and meet all that healthcare has to offer. They will want to come back if that can be done. I know I want to go back to places I enjoyed. #PatientChat
HealthSparq @HealthSparq
RT @power4patients: T4: If nothing else works, show them this: https://t.co/Jx9Y3yPpSq the ultimate WIIFM for conf organizers #patientchat
Kimberly Hartmann @fireflyrn84
As RN, we can share from numerous perspectives and the roles that we have been forced to take on, including: patient, nurse, case manager, utilization review, pharmacist, and social worker. The skills to go with each are overwhelming. I just want to be a patient! #patientchat https://t.co/Ve8tv0fSA7
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat
Angela Cohen @angelee828
@HealthSparq Thank you! It’s an IBD Conference for patients and providers to come and learn together. My co-moderator (and the other patient who gave input), is Megan from @TheGreatBM who is awesome, not to mention very experienced, so I know it will be fantastic! #PatientChat #WTFix
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Today's #patientchat topic is Including Patients and Care Partners: Let's Talk Healthcare Conferences https://t.co/4adf8e9…
lillian lake @llake
@patientchat A3 I have not only caregiving experience, but as an advocate for all ages can bring a variety of voices to the table, as well as compassionate knowledge which is often left out. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @yourgpsdoc: T3: Nothing compares to hearing about a disease from a patient’s perspective. As a doc, this has truly enriched my conferen…
Flareuphope @flareuphope
T4: Make sure the conference has plenty of water, restroom access, and where a break can be taken. #patientchat
Enlightening Results @GraceCordovano
@HealthSparq @lisadbudzinski @EMRAnswers @patientchat My phone just made an ungodly sound. I think #patientchat is melting it. https://t.co/T503cA11IY
Annette McKinnon @anetto
T3 We can bring the perspective of the patient citizen, who ultimately pays for the whole health care edifice. #patientchat
Candace @RareCandace
RT @flareuphope: T4: Make sure the conference has plenty of water, restroom access, and where a break can be taken. #patientchat
Enlightening Results @GraceCordovano
RT @stage4kelly: T4. Have patients as equal partners on the planning committee - involve us from day one for a richer, more meaningful conf…
Inspire @teaminspire
T4: Problems usually result if conference organizers aren't sure whether they're seeking a patient/caregiver as an inspiring storyteller, or as someone to speak, as a subject matter expert, directly to a single topic--clinical trials recruitment, for example. #patientchat
Vera Rulon FAHIMA @vrulon
@GraceCordovano @HealthSparq This goes back to #trust and changing #culture - your health is such a personal thing - it's sad that some #patients aren't comfortable #PatientChat
ElizabethKelly, Ph.D @Elizabe85727641
T4 ? Whom have you included in the planning, level of competence of presenters and their diversity, variety of presentation methods & ways to increase active evaluation? #patientchat
Lisa Davis Budzinski @lisadbudzinski
Very high praise right here👇✨ #PatientChat https://t.co/T5MehPuj64
Linda Stotsky @EMRAnswers
Agree! Many voices from many generations! #WTFIx #Patientchat https://t.co/7K2Uib0gdF
D Flood @myglobalpac
RT @GraceCordovano: @HealthSparq Not all patients are comfortable engaging with their doctors. Many attending conferences and speaking from…
Whitney Petit @CfEpilepsy
RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat
Linda Stotsky @EMRAnswers
RT @anetto: T3 We can bring the perspective of the patient citizen, who ultimately pays for the whole health care edifice. #patientchat
Becky Brandt RN @bbhomebody
T4 Patient stories matter! Used correctly, our direct knowledge could save you money and improve the status/ratings/reviews of a business. Invite us PLEASE! And offer a stipend😀 #PatientChat https://t.co/sqjR6a58ef
Whitney Petit @CfEpilepsy
RT @power4patients: T4: If nothing else works, show them this: https://t.co/Jx9Y3yPpSq the ultimate WIIFM for conf organizers #patientchat
Candace @RareCandace
I appreciate conferences where there are mixers- I like to network with other people in the industry #patientchat
Dr. Kelly Shanahan @stage4kelly
This!! Free streaming of conferences for patients who cannot physically attend. I applaud @LivingBeyondBC for doing this #patientchat https://t.co/WzUsgEihbN
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano @HealthSparq @EMRAnswers @patientchat You got that right! 😀 #PatientChat
Alan Brewington @abrewi3010
T4 Ask @nickdawson @dennisjboyle @joyclee @danamlewis to give presentations/workshops on #designthinking. How might we...? #patientchat
Linda Stotsky @EMRAnswers
RT @burtrosen: T3: we can bring the human being side and the needs perspective which is something events don't take into account enough #P
lillian lake @llake
RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how…
Stephanie Fischer @RarePOV
T4 I'd like to see more conferences providing travel stipends to patients & care partners. Cost is a big barrier to our participation in conferences. I'd ask them to honor the spirit of #patientsincluded: https://t.co/pwNi00dL7R #patientchat
Patient Critical Co-op @PatientCritical
T4: *Involve #patients from day one of planning *Invite DIFFERENT patients to planning committees every couple years *Don't just have 1 patient 'track' *Pay patients in advance (or risk ignoring those without means) *Open & close event with patient participation #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @abrewi3010: Also, ask patients what they did right? Give patients the opportunity to break what does work to see what growth can happen…
Kimberly Hartmann @fireflyrn84
The patient role will be different, but also the same. Everyone needs to hear what it's like to be a patient and face the struggles, how we've overcome things and what resources would have helped. We can frame things differently, but why isn't pt routinely involved? #patientchat https://t.co/cCPLQl3ge8
Lisa Davis Budzinski @lisadbudzinski
RT @EMRAnswers: @patientchat T3: Living the paradox of #carecoordination, #medicationreconciliation, #ptsafety adverse events, Cancer tx &…
HealthSparq @HealthSparq
@stage4kelly @LivingBeyondBC This is what we're doing at #WTFix as well! Hope you can join us! #PatientChat
laminopathies support group @laminopathies
T4. I would tell them there should be no conference too elite for patients to attend. Ahem, Heart Rhythm Society HRS. #Patientchat
Alan Brewington @abrewi3010
RT @teaminspire: T4: Problems usually result if conference organizers aren't sure whether they're seeking a patient/caregiver as an inspiri…
Becky Brandt RN @bbhomebody
@flareuphope GREAT POINT! Access to patients needs is crucial! #Patientchat
Alan Brewington @abrewi3010
RT @bbhomebody: T4 Patient stories matter! Used correctly, our direct knowledge could save you money and improve the status/ratings/reviews…
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/4adf8e9pPh #patientchat
Linda Stotsky @EMRAnswers
Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspectives, but to share a personal journey is to connect with PEOPLE. #Patientchat #WTFix
Lisa Davis Budzinski @lisadbudzinski
This is what’s needed at conferences! 👇 #PatientChat https://t.co/6fx2aVIrBx
Your GPS Doc, LLC @yourgpsdoc
T4: Include patients from the beginning AND have a way for people to attend virtually. #patientchat https://t.co/b1CZjagrxG
Dr. Kelly Shanahan @stage4kelly
Yes! 👇🏻👇🏻#PatientChat https://t.co/sZBUwHVrUh
Kimberly Hartmann @fireflyrn84
T4: I might be just a "patient" to you, but to me I'm an entire army of people. I don't get paid to do all the jobs that I'm forced to do. Ask me anything, chances are that I've probably dealt with it. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @melissarvh: T4 We are educated, passionate, capable people who wish to be involved in our own care. You can speak to us. It will be oka…
lillian lake @llake
@patientchat A3 Also, patients and caregivers are each in unique situations doing unique observations and solutions. We have much to offer beyond the lab and text books. So really, it's all unique. #PatientChat
Enlightening Results @GraceCordovano
@flareuphope @teaminspire @abrewi3010 It happens often, too often. That’s why I’ve added “trophy patient” as my describer for this particular situation. #patientchat
Becky Brandt RN @bbhomebody
You hit the nail on the head Stephanie! #PatientChat https://t.co/rtPmjSw2ll
HealthSparq @HealthSparq
RT @EMRAnswers: Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspecti…
Patient Chat @patientchat
T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example? #patientchat
Inspire @teaminspire
RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?…
HealthSparq @HealthSparq
RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?…
Vera Rulon FAHIMA @vrulon
T5: True #patient #caregiver involvement means including in content planning, as speakers, as audience participants, commentators, bloggers, etc. Need to think of examples.... #PatientChat
Stephanie Fischer @RarePOV
T4 Making a conference available by webcast is SO helpful for patients & care partners who may not be able to attend due to finances, health or lack of alternate caregiver for patient. We can be part of dialogue & sometimes even make connections to others remotely #patientchat
Lisa Davis Budzinski @lisadbudzinski
T4 If you aren’t involving patients; you are missing the most important voices in #healthcare #patientchat
Kimberly Hartmann @fireflyrn84
Bingo! Stipends, scholarships...help us get there, we don't have the extra funds laying around for travel. We WANT to be there and participate! #patientchat https://t.co/bZmp8K2sua
Patient Advisors @PatientAdvisors
RT @anetto: FYI #PatientChat: Share your experiences as patient or caregiver at a healthcare conference. Take this @patientadvisors survey…
laminopathies support group @laminopathies
T4 Patients at conferences also democratizes interactions. And I think that results in better outcomes down the line. #Patientchat
Vote November 6th @JECallender
@llake @patientchat Conferences seem to just be warming up to being receptive. But it also means that conference organizers may have to adjust mindset and behaviors toward patient inclusion. Put patients on the stage would be one mindset shift. #patientchat
couragesings @couragesings
RT @RarePOV: T4 I'd like to see more conferences providing travel stipends to patients & care partners. Cost is a big barrier to our partic…
Max Stroud @MMaxwellStroud
RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?…
Linda Stotsky @EMRAnswers
RT @lisadbudzinski: T4 If you aren’t involving patients; you are missing the most important voices in #healthcare #patientchat
Candace @RareCandace
T5: Patient & caregiver involvement depends on the conference. HC Compliance is not a patient-friendly event. #patientchat
Linda Stotsky @EMRAnswers
RT @vrulon: T5: True #patient #caregiver involvement means including in content planning, as speakers, as audience participants, commentato…
lillian lake @llake
RT @PatientCritical: You're so right John, individual engagements matter. But many opportunities only happen when conferences are designed…
Vera Rulon FAHIMA @vrulon
Ooops... a little ahead of myself and of #patientchat (sorry)
Stephanie Fischer @RarePOV
RT @PatientCritical: T4: *Involve #patients from day one of planning *Invite DIFFERENT patients to planning committees every couple years…
Linda Stotsky @EMRAnswers
@patientchat Everything Vera said! #patientchat #WTFix
Lisa Davis Budzinski @lisadbudzinski
T5 #MedX https://t.co/L132pHe1oS by @susannafox but like she states, “Only if you are lucky enought to attend”. #patientchat
Whitney Petit @CfEpilepsy
RT @PatientCritical: You're so right John, individual engagements matter. But many opportunities only happen when conferences are designed…
Angela Davis @DavisAngesdavis
RT @ShereesePubHlth: T1 Involving patients furthers the notion of transparency, consideration of the patient POV, & furthering the ideals o…
Whitney Petit @CfEpilepsy
RT @HealthSparq: #patientsincluded 👉 https://t.co/sufhy8M7DF #patientchat #WTFix https://t.co/PMNK0TsMSp
Becky Brandt RN @bbhomebody
@lisadbudzinski @RarePOV @Cpnervecenter And we loved every exhausting moment and can't wait to go back! #PatientChat
lillian lake @llake
RT @melissarvh: T4 We are educated, passionate, capable people who wish to be involved in our own care. You can speak to us. It will be oka…
Jamie Holloway, PhD @jamienholloway
T4: Patient perspective included on most panels. Patient education programs with scholarships. @AAADVWorkshop and @AACR do an excellent job for cancer advocates! #PatientChat
Patient Critical Co-op @PatientCritical
A5: The best standard for true involvement of #patients & other #healthcare stakeholders so far is the evolving one at #patientsincluded https://t.co/H9WeKI2NbJ Key for me: reimburse in advance, incl patients from beginning of plan, stream event to patients outside. #patientchat https://t.co/vpSFwtqoBe
Whitney Petit @CfEpilepsy
RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?…
Kimberly Hartmann @fireflyrn84
T5: True involvement is having a patient and care partner involved in each conference. Have them on each panel, each discussion. All conferences have numerous sessions. Integrate patients into every session. There is a lot to be learned. #patientchat
Ataxia and Me #TeamAtaxia @Ataxia_and_Me
RT @RarePOV: T4 I'd like to see more conferences providing travel stipends to patients & care partners. Cost is a big barrier to our partic…
lillian lake @llake
RT @lisadbudzinski: T4 If you aren’t involving patients; you are missing the most important voices in #healthcare #patientchat
Vote November 6th @JECallender
@patientchat T5: Patients on the stage. Industry in the audience. Breakout sessions by patient group or indication. Exhibit space is problems, not solutions. #patientchat
Erin Moriarty Wade @EMoriartyWade
@llake @patientchat A3 I agree @llake, as a caregiver, I often feel left out of the patient-provider equation. But my daughter’s #RareDisease has changed my life dramatically. #patientchat
Alan Brewington @abrewi3010
T5 Regardless of topic, everyone included must be the starting point of all conferences. #patients & #caregivers are equals. #patientchat
Melissa VanHouten @melissarvh
T5 Patients aren't simply audience members but are invited to speak, engage in discussions/panels; contribute in meaningful way #patientchat
Linda Stotsky @EMRAnswers
I believe we've turned a monumental corner in this. Im recognizing each day how many conferences have #PatientsIncluded - free of charge, with travel stipends. #patientchat #WTFix https://t.co/yKOQgJkxWD
lillian lake @llake
RT @abrewi3010: Also, ask patients what they did right? Give patients the opportunity to break what does work to see what growth can happen…
Annette McKinnon @anetto
RT @lisadbudzinski: T5 #MedX https://t.co/L132pHe1oS by @susannafox but like she states, “Only if you are lucky enought to attend”. #pati
Vera Rulon FAHIMA @vrulon
@EMRAnswers @patientchat Thank you! It's unfortunate that I cannot come up with an example of #patientinclusion @ #healthcare conferences being done right!! #patientchat Can anyone?
Natalie 🦓 @_Nataliea
This! I realized that taking vacation days to go to conferences left me with... no vacation. Because that was work, too. Livestreams are a great resource. #patientchat https://t.co/UISY1MxcfC
Geeky Fox @TechKitsune
T5: Patient advocates and patient presenters on stage answering questions and giving answers. Patients in the audience mixed in to ask what they may have been afraid to ask. A mingling of voices being heard! #PatientChat
John M. Trumbo @JohnMTrumbo
RT @EMRAnswers: Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspecti…
Ataxia and Me #TeamAtaxia @Ataxia_and_Me
@RarePOV #Patientchat https://t.co/8WLUdL1Wlb
ElizabethKelly, Ph.D @Elizabe85727641
T5 Creative poster spaces or listening posts where attendees gather to write, speak, share questions with others, leave thoughts, experiences in both verbal/written/creative ways. #patientchat
Vera Rulon FAHIMA @vrulon
@EMRAnswers That is GREAT news. I'll need to research more!! #patientchat
Candace @RareCandace
T5: I've been in many situations where I am the only patient at a conference, usually for legal-based meetings. #patientchat
Vote November 6th @JECallender
@patientchat Digital Health providers approaching patient or problem booths. #patientchat
Linda Stotsky @EMRAnswers
RT @Elizabe85727641: T5 Creative poster spaces or listening posts where attendees gather to write, speak, share questions with others, leav…
Init4Health @Init4Health
@GraceCordovano T3 #patientchat ..this is v. important in the field of #rarediseases. #RareDisease patients often face a diagnostic odyssey, typically waiting yrs for a diagnosis & receiving multiple misdiagnoses along the way; their stories are NB to raise awareness of lesser known conditions
lillian lake @llake
@EMoriartyWade @patientchat A3 Trauma has a way of redirecting us. I wish you extended courage and strength on your journey. #carechat is Tuesdays at 1pmET if you want to stop by. Everyone is a caregiver in the chat. All ages and stages. #patientchat
Kimberly Hartmann @fireflyrn84
RT @lisadbudzinski: This is what’s needed at conferences! 👇 #PatientChat https://t.co/6fx2aVIrBx
Melissa VanHouten @melissarvh
RT @lisadbudzinski: T4 If you aren’t involving patients; you are missing the most important voices in #healthcare #patientchat
Flareuphope @flareuphope
T4: Whatever it is, it should have an open, safe environment that encourages listening in order to understand, not just talking in order to be heard. #patientchat
Alan Brewington @abrewi3010
T5 What @larrychu & @StanfordMedX have accomplished is amazing and refreshing. #patientchat https://t.co/ElIbyhm1iY
Your GPS Doc, LLC @yourgpsdoc
RT @bbhomebody: T4 Patient stories matter! Used correctly, our direct knowledge could save you money and improve the status/ratings/reviews…
John M. Trumbo @JohnMTrumbo
RT @lisadbudzinski: T4 If you aren’t involving patients; you are missing the most important voices in #healthcare #patientchat
Erin Moriarty Wade @EMoriartyWade
Exactly! There are so many conferences I’d love to attend but my situation is pretty complicated...#patientchat https://t.co/7osS9EbtLy
Flareuphope @flareuphope
Woops. T5. #patientchat https://t.co/F43h1F56GH
lillian lake @llake
Yes! Yes you can. I think we all continue to be amazed. #patientchat https://t.co/mxVDECmfQJ
Linda Stotsky @EMRAnswers
RT @abrewi3010: T5 What @larrychu & @StanfordMedX have accomplished is amazing and refreshing. #patientchat https://t.co/ElIbyhm1iY
Annette McKinnon @anetto
T4 Including patients from the beginning and in the budget is a good start. Most patients can't afford to attend on their own. #patientchat
Alan Brewington @abrewi3010
RT @_Nataliea: This! I realized that taking vacation days to go to conferences left me with... no vacation. Because that was work, too. Liv…
Linda Stotsky @EMRAnswers
RT @llake: @EMoriartyWade @patientchat A3 Trauma has a way of redirecting us. I wish you extended courage and strength on your journey. #ca
Kimberly Hartmann @fireflyrn84
Exactly! There is a difference between the latest drug that is on the market and a patient talking about their journey. I'd prefer to hear something that actually gives me a takeaway. Anything with a personal aspect is a win! #WTFix #patientchat https://t.co/79mXmahwxx
Vera Rulon FAHIMA @vrulon
@ataxiaandme @RarePOV Yes! I spoke at one of their #patient conference a few year back (with a #patient, of course) #patientchat
Melissa VanHouten @melissarvh
RT @anetto: T4 Including patients from the beginning and in the budget is a good start. Most patients can't afford to attend on their own.…
HealthSparq @HealthSparq
@flareuphope Such a critical distinction, well put! #WTFix #patientchat
Candace @RareCandace
RT @anetto: T4 Including patients from the beginning and in the budget is a good start. Most patients can't afford to attend on their own.…
Patient Critical Co-op @PatientCritical
A5: True involvement means getting RESULTS. In every industry people revolt when a new party is given a seat at the table. We have a right to be angry about #healthcare... but we can't afford to indulge in anger. Use it! Channel it. Convince others, defuse anger. #patientchat https://t.co/anjzXq3uJ6
Annette McKinnon @anetto
RT @vrulon: @EMRAnswers @patientchat Thank you! It's unfortunate that I cannot come up with an example of #patientinclusion @ #healthcare c…
lillian lake @llake
@power4patients Yes! #patientchat https://t.co/6iLIkHRntT
Your GPS Doc, LLC @yourgpsdoc
@EMoriartyWade @llake @patientchat I ❤️ caregivers! They are a vital part of the healthcare team and should be included always. #patientchat
HealthSparq @HealthSparq
@EMoriartyWade We really do believe the online component is critical to conferences & are excited to try some new things this year at #WTFix to make the experience even better! #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @anetto: T4 Including patients from the beginning and in the budget is a good start. Most patients can't afford to attend on their own.…
Becky Brandt RN @bbhomebody
T5 Along with a stipend to attend, we want to hear more about Patient/Caregiver perspectives.The answers are in their stories, you just need to actively listen to find them. Examples: #WTFix #RareDC2018 #Medx #PatientChat https://t.co/GlJHNk8WWB
lillian lake @llake
RT @yourgpsdoc: @EMoriartyWade @llake @patientchat I ❤️ caregivers! They are a vital part of the healthcare team and should be included alw…
Vera Rulon FAHIMA @vrulon
RT @PatientCritical: A5: True involvement means getting RESULTS. In every industry people revolt when a new party is given a seat at the t…
Stephanie Fischer @RarePOV
T5 Patients should be treated as equals as far as value of our perspectives. I was asked not to ask questions at microphone during a conference because the organizer said biopharma reps needed to be able to ask their questions. I could ask my Qs during coffee breaks #PatientChat https://t.co/XZGGun8qML
ShereeseM, MS/MBA @ShereesePubHlth
@CitizenHealthio @lisadbudzinski @BenMaisano @GraceCordovano @burtrosen @MI_turnaround @clayforsberg @Underpaidnurse @misterchambo @DutchRojas @EMRAnswers Honored & humbled by the recognition #patientchat #FF https://t.co/TJgR1V7zZG
Kimberly Hartmann @fireflyrn84
@GraceCordovano @HealthSparq @lisadbudzinski @EMRAnswers @patientchat 10 min left, come on phone!!! #patientchat
lillian lake @llake
@yourgpsdoc @EMoriartyWade @patientchat #patientchat https://t.co/m9dO4tfIuv
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T4 I would talk to them about the valuable perspectives patients bring, and their skill at spreading what they learn. #patientc
Melissa VanHouten @melissarvh
RT @techguy: If the conference is organized properly, then there are plenty of engagement opportunities for patients voices to be heard. I…
Dr. Kelly Shanahan @stage4kelly
.@AACR scientist<->survivor program has patients/advocates present posters during regular poster session #patientchat https://t.co/NGb0C0m6bD
laminopathies support group @laminopathies
T5. I don't have an example, but I think a conference with break- out sessions that include panels of patients with different disorders present to answer doctor's and researcher's questions would be great. #patientchat
Leigh Anne Naas @lanaasindy
T4: I have begun to ask my colleagues in pharma: if we don't include patients in the conversation, what won't we learn? #patientchat https://t.co/OO3qPCVu2m
Patient Critical Co-op @PatientCritical
RT @RarePOV: T5 Patients should be treated as equals as far as value of our perspectives. I was asked not to ask questions at microphone du…
Lisa Davis Budzinski @lisadbudzinski
RT @HealthSparq: @EMoriartyWade We really do believe the online component is critical to conferences & are excited to try some new things t…
Alan Brewington @abrewi3010
T5 any conference that asks “how might we...?” Is on the right track towards engagement of everyone. #patientchat
Linda Stotsky @EMRAnswers
@fireflyrn84 I actually credit @ReginaHolliday with placing an impetus on the "Story". Whether depicted through art, content or blogs, a story bring to light that which previously lived in the darkness. #patientchat #WTFix. As a writer since age 12, I believe in the power of #storytelling
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
HealthSparq @HealthSparq
RT @lanaasindy: T4: I have begun to ask my colleagues in pharma: if we don't include patients in the conversation, what won't we learn? #pa
Candace @RareCandace
I think it's worth noting that patients should do research before conferences, especially if unfamiliar with certain topics #patientchat
Veronica Waks MD,ND. @doctorveronica
RT @stage4kelly: And there's a difference between patients attending conferences and being included in conferences. I go to a lot of confer…
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T5 Along with a stipend to attend, we want to hear more about Patient/Caregiver perspectives.The answers are in their stor…
Your GPS Doc, LLC @yourgpsdoc
T5: Involving patients beginning with the planning stages, valuing their perspectives, incorporating their ideas, and including them as presenters. #patientchat https://t.co/7WA1PLP41Z
Vera Rulon FAHIMA @vrulon
@RarePOV That's awful. So wrong.... #patientchat
HealthSparq @HealthSparq
Whew, can't believe it's already #CT time! So much to still digest from today's chat as we prep for #WTFix in less than 2 weeks! #patientchat https://t.co/Dylfkrv1bj
HealthSparq @HealthSparq
RT @EMRAnswers: @fireflyrn84 I actually credit @ReginaHolliday with placing an impetus on the "Story". Whether depicted through art, conten…
Lisa Davis Budzinski @lisadbudzinski
@RareCandace Always! Never attend any meeting without being truly prepared ✨#PatientChat
Dr. Kelly Shanahan @stage4kelly
RT @lanaasindy: T4: I have begun to ask my colleagues in pharma: if we don't include patients in the conversation, what won't we learn? #pa
Angela Cohen @angelee828
RT @abrewi3010: T5 any conference that asks “how might we...?” Is on the right track towards engagement of everyone. #patientchat
Sunil Malhotra @SunilMalhotra
@GraceCordovano @llake Empathy matters most. Followed by compassion. #patientchat
Kimberly Hartmann @fireflyrn84
@RarePOV Totally inappropriate and rude! This is what needs to change, no I take that back! MUST change! #patientchat
Your GPS Doc, LLC @yourgpsdoc
@lanaasindy I love this! #patientchat
Annette McKinnon @anetto
T4 Ability of patients to learn from many, in various venues can often provide insights that focused professionals don't see #patientchat
Melissa VanHouten @melissarvh
@RarePOV Oh, my. How condescending. Speaks volumes about the low value they placed on your perspective. #PatientChat
Max Stroud @MMaxwellStroud
I really loved "listening" today. Thanks everyone for so much great feedback and for the time you take to make the space better for the next patient who encounters the same things as you. #patientchat #WTFix
Patient Chat @patientchat
RT @lanaasindy: T4: I have begun to ask my colleagues in pharma: if we don't include patients in the conversation, what won't we learn? #pa
lillian lake @llake
I LOVE this! Spot on. Yes, active listening not to ask questions and fix (that can come later) but to listen with intent to hear the story. Wow! #patientchat https://t.co/Jw2cvW1dVv
ElizabethKelly, Ph.D @Elizabe85727641
T5 Wondering If we could think in terms of a health conference that is not limited to illness or biology related? What about a topic like healthy living and the community? #patientchat
Alan Brewington @abrewi3010
CT Healthcare needs to revolve around the idea of everyone included. Paternalistic medicine is failing bc it doesn’t support everyone. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @Elizabe85727641: T5 Wondering If we could think in terms of a health conference that is not limited to illness or biology related? Wha…
laminopathies support group @laminopathies
CT. Patients will teach doctors and researchers what is important to them, if you let them. #patientchat
Init4Health @Init4Health
@EMRAnswers @fireflyrn84 @ReginaHolliday #patientchat ... totally agree - Regina and her walking gallery is soooo powerful https://t.co/2YnZWfAjtN each patient story/journey is personal & these jackets ignite interest, are great conversation starters & cannot be ignored.
Jamie Holloway, PhD @jamienholloway
CT: One of the most valuable parts of going to conferences is relationship building. Talk to people at posters, sit next to strangers at meals or coffee breaks. Start a conversation at every opportunity. #patientchat
Vera Rulon FAHIMA @vrulon
CT: Great chat. Thank you for the learnings: #patients as part of the inner circle when it comes to conferences - contribute to content, as speakers - the need to change #culture - not only at conferences but in #healthcare in general, build #trust (address #costs) #patientchat
Holly Kirkland-Walsh @KirklandWalsh
RT @vrulon: T5: True #patient #caregiver involvement means including in content planning, as speakers, as audience participants, commentato…
HealthSparq @HealthSparq
RT @MMaxwellStroud: I really loved "listening" today. Thanks everyone for so much great feedback and for the time you take to make the sp…
Lisa Davis Budzinski @lisadbudzinski
@HealthSparq Closing thoughts?! I'm still trying to read the tweets : ) #PatientChat
lillian lake @llake
@RarePOV A4 Yes, and allow me to take the opportunity to include respite care/ respite reimbursement So many "barriers to entry" that we face. Thank you! #patientchat
Linda Stotsky @EMRAnswers
RT @Init4Health: @EMRAnswers @fireflyrn84 @ReginaHolliday #patientchat ... totally agree - Regina and her walking gallery is soooo powerful…
HealthSparq @HealthSparq
@jamienholloway And do the same things if you are attending online!!! #WTFix #patientchat
Patient Chat @patientchat
RT @laminopathies: CT. Patients will teach doctors and researchers what is important to them, if you let them. #patientchat
Kimberly Hartmann @fireflyrn84
CT: Industry needs to change so that patients are included in every aspect of planning. Live-stream conferences so that people can participate. #WTFix 2018 will be doing just that in a couple weeks. Looking forward to that. Thanks for another great chat today! #patientchat
Linda Stotsky @EMRAnswers
@Init4Health @fireflyrn84 @ReginaHolliday Shes amazing and has brought us back to #storytelling. #patientchat #myfriend #loveher #WTFix
Stephanie Fischer @RarePOV
RT @llake: @RarePOV A4 Yes, and allow me to take the opportunity to include respite care/ respite reimbursement So many "barriers to entry"…
Dr. Kelly Shanahan @stage4kelly
Got so engrossed in this #PatientChat that my French press coffee has been steeping forever! Oh well, I'll froth some almond milk and turn it into a latte! ☕️
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Your GPS Doc, LLC @yourgpsdoc
CT: patients and care partners offer a valuable perspective and should be included in all health conferences. #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
CT Let’s start with the goal of healthy living for all, illness is a part of health but not the whole picture. No one has referenced mental health. Are we just following the current $$ stream? #patientchat
Angela Cohen @angelee828
@lisadbudzinski @HealthSparq Phew, it's not just me! :) #PatientChat
lillian lake @llake
RT @angelee828: T2: I will be co-moderating a conference for my first time on May 12th. I was flattered and humbled that I was even asked.…
Patient Chat @patientchat
Thank you so much to @HealthSparq for sharing your insights and being our guest on today’s #patientchat
Patient Critical Co-op @PatientCritical
CT: #patients, #providers, #policymakers, #businesses all should be accorded equal respect, equal access. No one can heal, innovate, profit or reduce costs in #healthcare until all partners WORK together. Model respect, accomplish change in #healthcare. #patientchat https://t.co/CyBVf3Bohf
Vera Rulon FAHIMA @vrulon
@Elizabe85727641 I like it. #PatientChat
Jamie Holloway, PhD @jamienholloway
CT Also, have coffee with people... There is so much value in the connections made at conferences. Often more important than the sessions attended. #patientchat
lillian lake @llake
RT @PatientCritical: T4: *Involve #patients from day one of planning *Invite DIFFERENT patients to planning committees every couple years…
Lisa Davis Budzinski @lisadbudzinski
CR: #healthcare please listen to your main stakeholders, your end users, from beginning to end & everything in between. Treasure troves of info to help direct change for the better✨ #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: Thank you so much to @HealthSparq for sharing your insights and being our guest on today’s #patientchat
Patient Chat @patientchat
Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
Erin Moriarty Wade @EMoriartyWade
RT @PatientCritical: T4: *Involve #patients from day one of planning *Invite DIFFERENT patients to planning committees every couple years…
HealthSparq @HealthSparq
RT @PatientCritical: CT: #patients, #providers, #policymakers, #businesses all should be accorded equal respect, equal access. No one can…
Melissa VanHouten @melissarvh
RT @PatientCritical: CT: #patients, #providers, #policymakers, #businesses all should be accorded equal respect, equal access. No one can…
Patient Critical Co-op @PatientCritical
@vrulon #grassroots! #patientchat
Stephanie Fischer @RarePOV
RT @lisadbudzinski: CR: #healthcare please listen to your main stakeholders, your end users, from beginning to end & everything in between.…
Your GPS Doc, LLC @yourgpsdoc
RT @lisadbudzinski: CR: #healthcare please listen to your main stakeholders, your end users, from beginning to end & everything in between.…
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
Max Stroud @MMaxwellStroud
RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, May 18th https://t.co/BDMRaoH5zt Hope to see you there!
burtrosen @burtrosen
So sorry that i was so in and out today #PatientChat is hands down one of my fave chats and i wish i could've been more active today. It looks like i missed a lot of great thoughts! i will catch up.
Lisa Davis Budzinski @lisadbudzinski
Oh good gravy! CT not CR #patientchat
lillian lake @llake
@PatientCritical @RarePOV I really love the last suggestion. They're all great suggestions. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
lillian lake @llake
RT @RarePOV: T4 Making a conference available by webcast is SO helpful for patients & care partners who may not be able to attend due to fi…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?…
Citizen Health @CitizenHealthio
RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he
Richard Kreis @kreisr1
RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
Flareuphope @flareuphope
RT @fireflyrn84: CT: Industry needs to change so that patients are included in every aspect of planning. Live-stream conferences so that pe…
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with the hashtag #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: The next Empowered #patientchat will be Friday, May 18th https://t.co/BDMRaoH5zt Hope to see you there!
HealthSparq @HealthSparq
We hope you all can join us at #WTFix! Special thanks to our Digital Advisory Board for co-hosting today's chat with us & to #patientchat for driving this amazing conversation! https://t.co/rB4o4e2QGf
Your GPS Doc, LLC @yourgpsdoc
@lisadbudzinski 😂😂 We knew what you meant. #patientchat
lillian lake @llake
RT @laminopathies: CT. Patients will teach doctors and researchers what is important to them, if you let them. #patientchat
Linda Stotsky @EMRAnswers
RT @burtrosen: So sorry that i was so in and out today #PatientChat is hands down one of my fave chats and i wish i could've been more acti…
Soren Kierkegaard @sorkierkegardy
The moon is preserved, the music expresses, the unknown land and nisses and compelling, and at the music. #patientchat
Laurus @LaurusT001
RT @burtrosen: So sorry that i was so in and out today #PatientChat is hands down one of my fave chats and i wish i could've been more acti…
lillian lake @llake
I picked up some important tips I had forgotten in planning a local conference, plus some ideas I hadn't even considered. Love it! Thank you all! #patientchat https://t.co/Gb8iQZoGcK
Leigh Anne Naas @lanaasindy
CT: What do you all think of the #MedX model of expecting patient participants tweet/blog their experience at the conference so others who can't attend can learn about it online? #patientchat https://t.co/n2JLJ28G2Z
lillian lake @llake
RT @PatientCritical: CT: #patients, #providers, #policymakers, #businesses all should be accorded equal respect, equal access. No one can…
Becky Brandt RN @bbhomebody
CT The #Patientperspective is a huge piece of the puzzle when it comes to healthcare satisfaction. Set aside $$$ for patient attendance, really listen to our stories and you'll reap the benefits. #patientchat
Angela Cohen @angelee828
CT: I think things are slowing improving but there is a long way to go. We still need to work together to build awareness, sharing resources, and being supportive of each other, so the progress can continue. :) #patientchat
Lisa Davis Budzinski @lisadbudzinski
@llake That’s wonderful! 👏👏👏👏 #patientchat
lillian lake @llake
@EMRAnswers @fireflyrn84 @ReginaHolliday Regina is the bomb when it comes to shedding light on Patient stories. #patientchat
Sam Falsetti @DrFalsetti
RT @RarePOV: T4 Making a conference available by webcast is SO helpful for patients & care partners who may not be able to attend due to fi…
lillian lake @llake
RT @Init4Health: @EMRAnswers @fireflyrn84 @ReginaHolliday #patientchat ... totally agree - Regina and her walking gallery is soooo powerful…
Lisa Davis Budzinski @lisadbudzinski
@lanaasindy It’s always great to have social media ambassadors ✨ #patientchat
Becky Brandt RN @bbhomebody
Thanks everyone for your awesome insights. Happy Friday. #patientchat https://t.co/vsuiRi2Hha
Laura Schons @legalLMSW
RT @patientchat: The next Empowered #patientchat will be Friday, May 18th https://t.co/BDMRaoH5zt Hope to see you there!
Angela Cohen @angelee828
Thanks so much for such a fun and insightful chat. That hour zipped by. I'm going to have to go through and see what I missed. I'm looking forward to #WTFix even MORE if that was possible!!! #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: Thanks everyone for your awesome insights. Happy Friday. #patientchat https://t.co/vsuiRi2Hha
Espaço Jovem @twjovem
#patientchat RadioGlobal top5. Play! https://t.co/86eD9ag4mK
💎 @gotthebandstho
Learn how to get more interaction and #followers . 🎁 https://t.co/5FFjqxm8RA 🎁 #AustinBarnes #MertonCount #patientchat @RandolphMlny @clutchinghalsey
Becky Brandt RN @bbhomebody
@PatientCritical Great handshake image! 👍#Patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@bbhomebody Yeah, let's all get out of here.Have a great weekend everyone #patientchat https://t.co/ePvwzvnrOR
Jamie Holloway, PhD @jamienholloway
@lanaasindy You know I do that all the time! I think it's really valuable for patients to be able to follow along when they can't attend in person! #patientchat
Stephanie Fischer @RarePOV
RT @angelee828: CT: I think things are slowing improving but there is a long way to go. We still need to work together to build awareness,…
Becky Brandt RN @bbhomebody
@Elizabe85727641 Great point! That deserves another full hour tweetchat #PatientChat
Lynn Howie @LynnHowie1
RT @PatientCritical: T4: *Involve #patients from day one of planning *Invite DIFFERENT patients to planning committees every couple years…
Jandis Price @jandis_price
RT @EMRAnswers: Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspecti…
Citizen Health @CitizenHealthio
RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat
Becky Brandt RN @bbhomebody
@llake Awwww Thanks Lillian! Happy Spring Friday to you. 😎 #PatientChat
HealthSparq @HealthSparq
@lisadbudzinski YES!!! We are so happy to have you all!!! #WTFix #PatientChat
Manishree Bhattacharya @ManishreeBhatt1
RT @ManishreeBhatt1: @patientchat Involving patients and caregivers in conferences will bring out real world stories, pain-points, evidence…
Erin Moriarty Wade @EMoriartyWade
@lanaasindy I love this!! I can’t always take a break from the daily grind to watch an entire webcast, but I can always find a few minutes here and there to read and learn something new on Twitter! #patientchat,#patientsincluded
#patientchat content from Twitter.