#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
Profile | Tweet |
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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 |
@ 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 |
![]() | Inspire @InspireIsHealth 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 |
@ @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… |
@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 |
@ @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 |
@MMaxwellStroud RT @HealthSparq: So excited to be here w/ @patientchat, hosting #PatientChat with some of our #WTFix Digital Advisory Board members! https:… | |
@K_SalemOaks Kevin from Connecticut tweeting in from Western NY #patientchat #Billsfan | |
@ @MMaxwellStroud @GalenHealthcare @iestroud @LAlupusLady Hi Max! #patientchat | |
![]() | Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
@ #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… |
![]() | Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
@ 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. |
@ @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 |
![]() | John M. Trumbo 🌈 @JohnMTrumbo Happy to be joining #patientchat today |
![]() | Enlightening Results 💡 @GraceCordovano @HealthSparq @patientchat [REDACTED USER] @EMRAnswers @LillyStairs @burtrosen @teaminspire @fireflyrn84 @WheezyNurse @MMaxwellStroud I'm here!!!! #WTFix https://t.co/7eXebY62eQ |
![]() | Patient Empowerment Network @power4patients @RarePOV Hey Stephanie! Glad you're here! #patientchat |
@ @abrewi3010 Good to see you Alan! Hope you're feeling better. #patientchat | |
@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 [REDACTED USER] Hi Becky! Great to see you! #patientchat |
@ [REDACTED USER] @Cpnervecenter @bbhomebody Hey Lisa! #patientchat | |
![]() | Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
![]() | Patient Chat @patientchat T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat |
@burtrosen burt's here from @HealthSparq and #WTFix excited for today's chat! #PatientChat | |
![]() | Enlightening Results 💡 @GraceCordovano [REDACTED USER] @Cpnervecenter @bbhomebody Hey Lisa! Happy Friday!! #patientchat |
@ @GraceCordovano @HealthSparq @patientchat [REDACTED USER] @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 |
![]() | Chuck Webster MD, MS AI, MS Systems 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 |
![]() | Alan Brewington @abrewi3010 @fireflyrn84 Thank you! Good to see you too 🙏 #patientchat |
![]() | Inspire @InspireIsHealth 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 |
![]() | Vera Rulon FAHIMA @vrulon @GraceCordovano Hello @GraceCordovano !! #PatientChat |
![]() | HealthSparq @HealthSparq @bbhomebody @Cpnervecenter [REDACTED USER] 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 Network @power4patients RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat |
@ @bbhomebody @Cpnervecenter [REDACTED USER] Hey Becky! #patientchat | |
![]() | 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 |
@ @HealthSparq @annerskg Hi Anna! #patientchat | |
![]() | Alan Brewington @abrewi3010 @yourgpsdoc The pain is rough! Good luck to you, fingers crossed for you 🙏 #patientchat |
![]() | Enlightening Results 💡 @GraceCordovano @fireflyrn84 Hi Kim! How are you doing today? Been thinking about you. #patientchat |
@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 | |
@K_SalemOaks T1. Adds value to the conference by creating a place for #pharma to bump into #patients and have #realconversations. #patientchat | |
![]() | 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 |
![]() | Alan Brewington @abrewi3010 T1 Conferences can finally claim to have #everyoneincluded #medx #patientchat |
@ @burtrosen @HealthSparq Long time no see, Burt! #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… |
![]() | 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 Network @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… |
![]() | 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 - Host of #SoulNestingChat @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 |
![]() | Your GPS Doc, LLC @yourgpsdoc @abrewi3010 Thank you! Same to you! #patientchat |
![]() | Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO [REDACTED USER] Lisa & @bbhomebody were the very first folks to take the plunge #patientchat |
![]() | 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 |
@MMaxwellStroud RT @power4patients: T1: Can I just say that it still shocks & amazes me that patients aren't ALWAYS included in conferences? #patientchat | |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba Hello community. I'm Shereese, fierce advocate, writer, and healthcare tech strategist in Maryland #patientchat https://t.co/aoJwTGttW9 |
@ @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 - Host of #SoulNestingChat @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 |
@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 - Host of #SoulNestingChat @llake RT @patientchat: I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
![]() | 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 |
![]() | 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 Network @power4patients @vrulon @yourgpsdoc AMEN #patientchat |
@ 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 @InspireIsHealth @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 |
@ @flareuphope Never late for this party! #patientchat | |
![]() | Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/4adf8e9pPh #patientchat |
@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 - Host of #SoulNestingChat @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 |
@ Totally agree! #patientchat https://t.co/5C1WpE6Zfa | |
![]() | Dr. Kelly Shanahan @stage4kelly Truth #patientchat https://t.co/t0JWtcvRcB |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @K_SalemOaks: T1. Adds value to the conference by creating a place for #pharma to bump into #patients and have #realconversations. #pati… |
@MMaxwellStroud RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec… | |
![]() | Patient Empowerment Network @power4patients @stage4kelly Excellent point, thanks for clarifying. #patientchat |
![]() | Vera Rulon FAHIMA @vrulon @Elizabe85727641 #Trust & #HealthLiteracy - these are key!! #PatientChat |
@CfEpilepsy Well hello #patientchat. It's been a long time for me! | |
![]() | Your GPS Doc, LLC @yourgpsdoc @fireflyrn84 @GraceCordovano So sorry Kimberly! Praying you feel better soon! #patientchat |
![]() | HealthSparq @HealthSparq @ShereesePubHlth Hi Shereese! |
![]() | Patient Chat @patientchat T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat |
![]() | Alan Brewington @abrewi3010 T1 the question is are patients just being invited or are we included in conferences. We must be included. #medx #patientchat |
![]() | 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 |
@K_SalemOaks RT @stage4kelly: Truth #patientchat https://t.co/t0JWtcvRcB | |
![]() | Lillian Lake - Host of #SoulNestingChat @llake @JECallender @patientchat Yes and I'm sure there are commonalities. Commonalities of problems can lead to commonalities of solutions. #patientchat |
@ @yourgpsdoc @GraceCordovano Thank you! Me too, my body has been through the wringer later #patientchat | |
![]() | Patient Chat @patientchat RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he… |
@ Spot on, Grace! #patientchat https://t.co/RLodHkedgq | |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 [REDACTED USER] 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 |
@MMaxwellStroud Patient voices are mission critical at #healthcare conferences, because it is through stories that we develop empathy, understanding and insights. #WTFix #patientchat | |
@CfEpilepsy RT @HealthSparq: 👇 #WTFix #PatientChat https://t.co/9MCo5VCSZD | |
![]() | 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 @InspireIsHealth @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 |
![]() | 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 |
![]() | Vera Rulon FAHIMA @vrulon On point!! #patientchat https://t.co/1rPgTWypQG |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba 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 |
@ 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 | |
@K_SalemOaks RT @teaminspire: @abrewi3010 T1: Agreed. If it feels that the conference organizer is seeking a patient/caregiver speaker as window dressin… | |
@CfEpilepsy RT @patientchat: T1: For conference organizers, what’s the benefit in involving patients and care partners? #patientchat | |
@ Exactly, always included! #patientchat https://t.co/xgcjQCx0KN | |
![]() | Chuck Webster MD, MS AI, MS Systems 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 |
![]() | Patient Empowerment Network @power4patients RT @HealthSparq: T2! #PatientChat #WTFix https://t.co/kFoNLR5VF5 |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba 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,… |
@ @K_SalemOaks Great point! Always good to have patients have opportunities with #pharma, but good overall! #patientchat | |
@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 |
![]() | IFFGD @IFFGD RT @melissarvh: T2 Helped promote understanding of not just physical but mental/emotional aspects of digestive disorders patients; advocacy… |
![]() | Inspire @InspireIsHealth RT @wareFLO: @GraceCordovano Wrote a blog post about my experience, kind like a group therapy session, in virtual reality: Behavioral Healt… |
@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 |
![]() | Melissa VanHouten @melissarvh RT @ShereesePubHlth: T1 Involving patients furthers the notion of transparency, consideration of the patient POV, & furthering the ideals o… |
@ @bbhomebody Patients are the "experts" in their own conditions. Why not include us for everything? #patientchat | |
![]() | 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 |
@CfEpilepsy RT @HealthSparq: T1. The benefits of including #patients & #caregivers in conferences are innumerable, esp. their unique insights & perspec… | |
![]() | Inspire @InspireIsHealth @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 |
@ That is making a difference no matter what. No matter how big or small, we make a difference! #patientchat https://t.co/cpokiYUgTU | |
![]() | Your GPS Doc, LLC @yourgpsdoc @MMaxwellStroud @HIMSS That is so awesome! #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 |
![]() | HealthSparq @HealthSparq RT @GraceCordovano: @RarePOV So typical. I cringe when I see all the big name healthcare conferences hosting panels & discussions on solvin… |
@ @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 - Host of #SoulNestingChat @llake RT @GraceCordovano: @RarePOV So typical. I cringe when I see all the big name healthcare conferences hosting panels & discussions on solvin… |
![]() | Patient Chat @patientchat T3: What’s unique about the perspectives that you can bring to healthcare conferences? #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 |
![]() | 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 |
![]() | HealthSparq @HealthSparq RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat |
@MMaxwellStroud RT @GraceCordovano: @MMaxwellStroud @HIMSS That is so awesome! Its so true. Words matter. Stories are powerful. All we need to do is includ… | |
@MMaxwellStroud RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat | |
![]() | Patient Empowerment Network @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 |
![]() | 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 |
![]() | 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 |
@CfEpilepsy RT @patientchat: T2: Can you point to a conference that you were involved in where you made a difference? How? #patientchat | |
@CfEpilepsy RT @patientchat: T3: What’s unique about the perspectives that you can bring to healthcare conferences? #patientchat | |
![]() | 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 |
![]() | Melissa VanHouten @melissarvh [REDACTED USER] I got it just fine, Ms. Lisa! And, boy, do I ever understand the coffee need! Cup in hand right now. #PatientChat |
@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 @InspireIsHealth 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 |
@ 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 | |
@K_SalemOaks T3. I have always been a translator. I speak fluent pharm-ese and can rephrase in plain language. #patientchat #WTFix | |
![]() | 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 |
@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 - Host of #SoulNestingChat @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 |
![]() | 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 |
![]() | HealthSparq @HealthSparq @GraceCordovano @teaminspire @abrewi3010 Real people, real stories, true experiences! #WTFix #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 |
![]() | 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 |
@ @angelee828 that's awesome! Congrats!! #patientchat | |
![]() | HealthSparq @HealthSparq @angelee828 That is awesome! Congrats! Which conference?? #PatientChat #WTFix |
![]() | 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 |
![]() | 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… |
@burtrosen T3: we can bring the human being side and the needs perspective which is something events don't take into account enough #PatientChat | |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @GraceCordovano: I need more characters but: ✔️refreshing perspectives & humanity ✔️authentic insights into what's truly valuable in #he… |
@ @GraceCordovano @teaminspire @abrewi3010 Great point, Grace! #patientchat | |
![]() | HealthSparq @HealthSparq 🙌🏼#WTFix #PatientChat #patientsincluded🙌🏼 https://t.co/28tORBsffG |
![]() | 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 |
![]() | 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 |
@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 | |
@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 | |
![]() | HealthSparq @HealthSparq @GraceCordovano Couldn't a practicing doctor ask their patients for this kind of story/input/experience directly? #WTFix #PatientChat |
![]() | Patient Chat @patientchat T4: If you could tell conference organizers one thing, what would it be and why? #patientchat |
![]() | HealthSparq @HealthSparq RT @MMaxwellStroud: So often in #healthcare people want answers, and embracing #patientstories means also embracing questions, problems, fr… |
@ 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 |
![]() | 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 |
![]() | Inspire @InspireIsHealth @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 [REDACTED USER] @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 |
![]() | 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 Network @power4patients RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat |
![]() | 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 - Host of #SoulNestingChat @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 [REDACTED USER] @K_SalemOaks A sorely needed skill #patientchat |
![]() | Lillian Lake - Host of #SoulNestingChat @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… |
![]() | Patient Empowerment Network @power4patients T4: If nothing else works, show them this: https://t.co/Jx9Y3yPpSq the ultimate WIIFM for conf organizers #patientchat |
@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 |
![]() | 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 |
![]() | 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 |
@ 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 | |
![]() | 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 |
![]() | Lillian Lake - Host of #SoulNestingChat @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 |
![]() | Enlightening Results 💡 @GraceCordovano @HealthSparq [REDACTED USER] @EMRAnswers @patientchat My phone just made an ungodly sound. I think #patientchat is melting it. https://t.co/T503cA11IY |
![]() | 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 @InspireIsHealth 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 |
@CfEpilepsy RT @patientchat: T4: If you could tell conference organizers one thing, what would it be and why? #patientchat | |
@CfEpilepsy RT @power4patients: T4: If nothing else works, show them this: https://t.co/Jx9Y3yPpSq the ultimate WIIFM for conf organizers #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 |
![]() | Alan Brewington @abrewi3010 T4 Ask @nickdawson @dennisjboyle @joyclee @danamlewis to give presentations/workshops on #designthinking. How might we...? #patientchat |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @GraceCordovano: @teaminspire @abrewi3010 Please don't only invite patients as your success story (AKA the trophy patient). Ask them how… |
@ 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 | |
![]() | 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… |
![]() | Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/4adf8e9pPh #patientchat |
![]() | 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 |
@ 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 - Host of #SoulNestingChat @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 |
![]() | 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 @InspireIsHealth 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 |
@ 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 | |
![]() | laminopathies support group @laminopathies T4 Patients at conferences also democratizes interactions. And I think that results in better outcomes down the line. #Patientchat |
@MMaxwellStroud 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 Ooops... a little ahead of myself and of #patientchat (sorry) |
@CfEpilepsy RT @HealthSparq: #patientsincluded 👉 https://t.co/sufhy8M7DF #patientchat #WTFix https://t.co/PMNK0TsMSp | |
![]() | Lillian Lake - Host of #SoulNestingChat @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 |
@CfEpilepsy RT @patientchat: T5: What does true involvement of patients and care partners in healthcare conferences look like? Is there a good example?… | |
@ 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 | |
![]() | 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 |
![]() | Lillian Lake - Host of #SoulNestingChat @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… |
![]() | 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? |
![]() | 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 |
![]() | 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 |
![]() | Init4Health #CaithClúdachAghaidhe #SábháilBeathaí. @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 - Host of #SoulNestingChat @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 |
![]() | Alan Brewington @abrewi3010 T5 What @larrychu & @StanfordMedX have accomplished is amazing and refreshing. #patientchat https://t.co/ElIbyhm1iY |
![]() | 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 |
![]() | Lillian Lake - Host of #SoulNestingChat @llake Yes! Yes you can. I think we all continue to be amazed. #patientchat https://t.co/mxVDECmfQJ |
@ 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 |
![]() | HealthSparq @HealthSparq @flareuphope Such a critical distinction, well put! #WTFix #patientchat |
![]() | Lillian Lake - Host of #SoulNestingChat @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 |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @yourgpsdoc: @EMoriartyWade @llake @patientchat I ❤️ caregivers! They are a vital part of the healthcare team and should be included alw… |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba @CitizenHealthio [REDACTED USER] @BenMaisano @GraceCordovano @burtrosen @MI_turnaround @clayforsberg @Underpaidnurse @misterchambo @DutchRojas @EMRAnswers Honored & humbled by the recognition #patientchat #FF https://t.co/TJgR1V7zZG |
@ @GraceCordovano @HealthSparq [REDACTED USER] @EMRAnswers @patientchat 10 min left, come on phone!!! #patientchat | |
![]() | Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc @EMoriartyWade @patientchat #patientchat https://t.co/m9dO4tfIuv |
![]() | 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 |
![]() | Alan Brewington @abrewi3010 T5 any conference that asks “how might we...?” Is on the right track towards engagement of everyone. #patientchat |
![]() | Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
![]() | 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… |
![]() | 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… |
![]() | 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 |
![]() | Angela Cohen @angelee828 RT @abrewi3010: T5 any conference that asks “how might we...?” Is on the right track towards engagement of everyone. #patientchat |
@ @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 |
![]() | Melissa VanHouten @melissarvh @RarePOV Oh, my. How condescending. Speaks volumes about the low value they placed on your perspective. #PatientChat |
@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 - Host of #SoulNestingChat @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 |
![]() | laminopathies support group @laminopathies CT. Patients will teach doctors and researchers what is important to them, if you let them. #patientchat |
![]() | Init4Health #CaithClúdachAghaidhe #SábháilBeathaí. @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… |
![]() | Lillian Lake - Host of #SoulNestingChat @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 |
![]() | 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 |
@ 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 | |
![]() | 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 [REDACTED USER] @HealthSparq Phew, it's not just me! :) #PatientChat |
![]() | Citizen Health @CitizenHealthio @ShereesePubHlth [REDACTED USER] @BenMaisano @GraceCordovano @burtrosen @MI_turnaround @clayforsberg @Underpaidnurse @misterchambo @DutchRojas @EMRAnswers Thank you!!! #payitforward |
![]() | Lillian Lake - Host of #SoulNestingChat @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 |
![]() | 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 |
![]() | 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 |
![]() | 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 |
@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 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. | |
![]() | Lillian Lake - Host of #SoulNestingChat @llake [REDACTED USER] @RarePOV I really love the last suggestion. They're all great suggestions. #patientchat |
![]() | 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 |
![]() | Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with the hashtag #patientchat |
![]() | 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 [REDACTED USER] 😂😂 We knew what you meant. #patientchat |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @laminopathies: CT. Patients will teach doctors and researchers what is important to them, if you let them. #patientchat |
![]() | 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 - Host of #SoulNestingChat @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 |
![]() | 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 |
![]() | Lillian Lake - Host of #SoulNestingChat @llake @EMRAnswers @fireflyrn84 @ReginaHolliday Regina is the bomb when it comes to shedding light on Patient stories. #patientchat |
![]() | Lillian Lake - Host of #SoulNestingChat @llake RT @Init4Health: @EMRAnswers @fireflyrn84 @ReginaHolliday #patientchat ... totally agree - Regina and her walking gallery is soooo powerful… |
![]() | 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 |
![]() | Shereese Maynard, MS; MBA @ShereeseMayMba @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 |
![]() | Citizen Health @CitizenHealthio RT @patientchat: Don’t forget to to register for @HealthSparq’s free, virtual #WTFix conference today! https://t.co/rJJR4qtDCm #patientchat |
![]() | HealthSparq @HealthSparq [REDACTED USER] YES!!! We are so happy to have you all!!! #WTFix #PatientChat |
![]() | 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 |
