#hcsmca transcript

Healthcare Social Media Transcript

From: Wed Feb 03 10:00:00 PST 2016
To: Wed Feb 03 11:15:00 PST 2016

What is #hcsmca? Who were the influencers during this time period? #hcsmca analytics


Healthcare Conference  - Healthcare Tweet Chats  -  Healthcare Analytics

hcsmca
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Welcome everyone to #hcsmca, a discussion about health care and social media in Canada. (@blumencasey moderating)
hcsmca
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#hcsmca c'est parti! Le discours se présente principalement en anglais. Mais les tweets en français sont les bien bienvenues !
jbbc
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@pamressler @blumencasey @Colleen_Young you had me at stories ;-) #hcsmca
mjboyce
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RT @Stroketattler: Why the #hcsmca Symposium is Patients Included https://t.co/Z3cUai1RLG via @colleen_young
mjboyce
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The #hcsmca is happening now! https://t.co/OxbrKXC9uW
pamressler
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RT @JBBC: @pamressler @blumencasey @Colleen_Young you had me at stories ;-) #hcsmca
hcsmca
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Let's start with intro’s. Please take a moment to introduce yourself. #hcsmca
hcsmca
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Keep the intros coming as the housekeeping tweets are posted. #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
#hcsmca c'est parti! Le discours se présente principalement en anglais. Mais les tweets en français sont les bien bienvenues!!
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
Warm welcome to everyone joining #hcsmca, a discussion about health care and social media in Canada & beyond. (@blumencasey moderating)
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @hcsmca: Welcome everyone to #hcsmca, a discussion about health care and social media in Canada. (@blumencasey moderating)
seastarbatita
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About to start #hcsmca tweetchat on #raredisease and pt stories. Hope some of my tweeps will be joining in! https://t.co/ZlZ34bHJ2A
hcsmca
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We assume all tweets during the #hcsmca chat hour are your own & not those of your employers (unless specifically declared).
pamressler
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RT @hcsmca: Welcome everyone to #hcsmca, a discussion about health care and social media in Canada. (@blumencasey moderating)
hcsmca
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If you prefer to listen-only mode, that’s okay. But please add #hcsmca when you join just to let us know you are here.
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @colleen_young: New to tweetchats? See great chat tips from #gyncsm @btrfly12 https://t.co/frYXdkDzzA & #npmc https://t.co/Nfy1chtemx #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
We assume all tweets during the #hcsmca chat hour are your own & not those of your employers (unless specifically declared).
hcsmca
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If you change someone’s tweet, pls use MT (modify tweet) #hcsmca
bithealth
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Announcing the National #hcsmca Symposium’s Scholarship Winners https://t.co/d3Ph1BJhYu #hcsm
seastarbatita
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Hi all! Isabel here from Canada's west coast. Parent to 2 kids, 1 w/ #undiagnosed #raredisease. Chair at @rarediseasefdn #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca #lyfebulb here started with #diabetes but focus on all #chronicillness
lisadbudzinski
https://pbs.twimg.com/profile_images/828016287552937985/ixbZICpC_normal.jpg
RT @blumencasey: Preparing for #RareDiseaseDay: Do stories change anything? #hcsmca Twitter Chat | Feb 3 https://t.co/Q9HtrFgkGZ https://t.co/14GRj6L9X8
trishpaton
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Trish here, from #yeg. Working as evaluator/researcher in health, and hey! Stories & evaluation?? I'm in. #hcsmca
stroketattler
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@JBBC @pamressler @blumencasey @Colleen_Young Hi, Sharon in YEG. yes the stories, but also the collaboration on rare conditions. #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
If you prefer to listen only during the chat, we'd love for you to add #hcsmca when you join just to let us know you are here.
hcsmca
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Labelling your answers at T1, T2, T3 etc helps make the transcript easier to follow #hcsmca
patientscanada
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RT @btrfly12: Fab topic for #hcsmca today 2/3, 1pmET: Do stories change anything? #hcnarrative #ptexp @pamressler @lisagualtieri https://t.co/mBc8ynwlpU
mjboyce
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@blumencasey I am here, and looking forward to it :) #hcsmca
thechangefdn
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.@TheChangeFdn is here! Mostly listening in today. Looking forward to seeing what you all have to say! #hcsmca
gratefull080504
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@gratefull080504 #Consultant #patientengagement #patientvoice #publicspeaker #kidneytransplant #hcsmca https://t.co/HXVLE22Bd0
blumencasey
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@trishpaton Welcome Trish! #hcsmca
rarediseasefdn
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Join in #raredisease community. Tweetchat on #raredisease and storytelling going on NOW! #hcsmca https://t.co/7Jt6fDPhlW
karencopeland3
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Hi #hcsmca We just did a panel in our community that relied on stories. Read about it here: https://t.co/n3gphhWCoX
pamressler
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This is my kind of topic! Sorry I can't join in right now but will in in about 30 min for the end of the chat #hcsmca
colleen_young
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@LyfeBulb Welcome to #hcsmca I believe this is your first time.
martin_lemieux
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Hey all. 1st-timer here. Martin from Hamilton, Ontario. Patient advocate. Patient #FactorV (Clotting) and #LivedoidVaculopathy - #hcsmca
blumencasey
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Let's start with introductions. Who's here today? #hcsmca
colleen_young
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Welcome @BitHealth and thx for your RT support. Will you join the #hcsmca chat today?
lyfebulb
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RT @colleen_young: @LyfeBulb Welcome to #hcsmca I believe this is your first time.
blumencasey
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I’m Emma, a Rare Disease Patient/Advocate and I love stories. I'm moderating today's chat from Germany. Who else is here? #hcsmca
karencopeland3
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#hcsmca sorry to drop a link and run, but it's a busy morning for me...
drpauldempsey
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#patientstories #hcsmca
stroketattler
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@martin_lemieux Hi Martin. So glad to meet you. #hcsmca
zelandroid009
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RT @KarenCopeland3: Hi #hcsmca We just did a panel in our community that relied on stories. Read about it here: https://t.co/n3gphhWCoX
mjboyce
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Hello #hcsmca — Michael here in Vancouver Canada - interested in #mhealth #dhealth & online communities.
jbbc
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Dvořák - Song to the Moon playing in the background as I tune into #hcsmca chat
rarepov
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RT @seastarbatita: About to start #hcsmca tweetchat on #raredisease and pt stories. Hope some of my tweeps will be joining in! https://t.co/ZlZ34bHJ2A
lyfebulb
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@colleen_young #hcsmca yes but @annmarieg4 is part of our team and tweeting for the group
colleen_young
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@Stroketattler @JBBC @pamressler @blumencasey Welcome all to #hcsmca
blumencasey
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@mjboyce Hi Michael - great you can join us. #hcsmca
martin_lemieux
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Hey @Stroketattler - same here, nice to meet you! #hcsmca
gratefull080504
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@blumencasey I introduced myself earlier #hcsmca
trishpaton
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I'm also having a go at building a network map for today (not just the chat) that I'll hand on to @colleen_young b/c Pictures! #hcsmca
btrfly12
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Waving and trying to get my internet back up. Community builder and Believer in the power of story. #hcsmca
rarepov
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Crashing #hcsmca tweetchat on importance of storytelling in #raredisease w/ @blumencasey . Join if you are available https://t.co/DCKfK0bLNI
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @blumencasey: I’m Emma, a Rare Disease Patient/Advocate and I love stories. I'm moderating today's chat from Germany. Who else is here? #hcsmca
colleen_young
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Fantastic. Welcome both @annmarieg4 and @lyfebulb. Don't forget the hashtag #hcsmca :) https://t.co/YRIPIMaqAP
blumencasey
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@JBBC Welcome! We really have a global chat happening today. #hcsmca
anetto
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Hi all. Annette here in Toronto. Patient and blogger. Not rare disease,Know lack of awareness a problem for so many #hcsmca
blumencasey
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@RarePOV welcome. Exciting to see the #RareDisease community chatting. #hcsmca
ctoneloto
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Hi! I´m Carolina, from Brazil,rare disease patient and PhD student in Collective Health #hcsmca
colleen_young
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LOL @KarenCopeland3 Don't drop a stitch. Good resources always welcome. #hcsmca
seastarbatita
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@RarePOV @blumencasey Hi Stephanie! #hcsmca
blumencasey
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Who's here today? Introduce yourself #hcsmca
patientscanada
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Christina here /w @PatientsCanada, really appreciate today's topic! #raredisease #hcsmca
jbbc
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@blumencasey looking forward to this - big fan of your work - and of course #hcsmca
caretothepeople
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Melody here. We're a pay-it-foward initiative of @ConsumerMedical that helps connect patients to each. Licensed social worker. #hcsmca
seastarbatita
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@btrfly12 Oh good luck! Hope your intrawebz are working! #hcsmca
e_bradt
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Elise here, Communications Specialist @CAHOhospitals and #onHWS, a platform we use to tell stories about impact of health research. #hcsmca
blumencasey
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@CToneloto Hello Carolina! Welcome to #hcsmca
drpauldempsey
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Crying baby, noises of a pediatric clinic in my background! #hcsmca https://t.co/VVqX09he02
colleen_young
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. @mjboyce @drpauldempsey Hi #hcsmca friends. Please also welcome my new friend @martin_lemieux #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
@anetto Hi Annette. As you point out, similar problems require collaboration, rather than silos #hcsmca
blumencasey
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@PatientsCanada welcome. Great to have patient perspectives. #hcsmca
colleen_young
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Crashing allowed @RarePOV Welcome to #hcsmca @blumencasey
martin_lemieux
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Same here @PatientsCanada! #hcsmca
seastarbatita
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Exciting to see both familiar and new faces here! ::waving:: to all #hcsmca
blumencasey
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This is so exciting! Let's get this starte #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @Stroketattler: @anetto Hi Annette. As you point out, similar problems require collaboration, rather than silos #hcsmca
hcsmca
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T1 coming up #hcsmca
blumencasey
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Keep the introductions coming, as we move to Topic 1. #hcsmca
hcsmca
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T1. How do patient stories impact the rare disease community? #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
February 29 we celebrate #RareDiseaseDay 2016! This year’s theme is Patient Voice. #hcsmca https://t.co/3mEq5vXwRR
anetto
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@drpauldempsey @jbbc Hate to say listening to whine of hung computer #hcsmca
seastarbatita
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T1 Patients stories unite our #raredisease community. They help us feel not alone and break our isolation. #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
26 days until #RareDiseaseDay. Tonight’s chat will help prepare us to use #stories. #hcsmca
martin_lemieux
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T1 - I find strength in other people's stories. Their obstacles make mine seem small and easy to overcome. #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @hcsmca: T1. How do patient stories impact the rare disease community? #hcsmca
blumencasey
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T1. How do patient stories impact the rare disease community? #hcsmca
btrfly12
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@RarePOV glad you are here - was trying to tag you when my internet froze #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T1 Patient stories help us find clues to research our own diseases for better care. Patient stories contain DATA #hcsmca
rarepov
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@blumencasey @blumencasey #RareDisease research & policy in 1 country affect patients worldwide so global connections are important! #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @hcsmca: T1. How do patient stories impact the rare disease community? #hcsmca
ctoneloto
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@blumencasey Hi, Emma! Let's have a good time together!;-) #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @blumencasey: February 29 we celebrate #RareDiseaseDay 2016! This year’s theme is Patient Voice. #hcsmca https://t.co/3mEq5vXwRR
colleen_young
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@anetto You don't mean @colin_hung right? LOL #oneHandedTypingProblems @drpauldempsey @jbbc #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: #patientvoice has tremendous impact but need to ensure policies have been developed first US experience #hcsmca https://t.co/POwIhCzEgx
mjboyce
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@colleen_young @drpauldempsey @martin_lemieux Welcome indeed - I'm glad to be back to this always a deeply engaged chat. #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
T1 they share their stories and shows others they are not alone connecting to make an #impact #hcsmca
stroketattler
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T1 Patient stories can be used to improve services https://t.co/2k7prC86xw #hcsmca
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
A1. Those with #raredisease can spend years chasing a diagnosis. Stories help make sense of the experience. #hcsmca
rarepov
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RT @seastarbatita: T1 Patient stories help us find clues to research our own diseases for better care. Patient stories contain DATA #hcsmca
seastarbatita
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T1 Patient stories let HC providers know that our stories are not unique. That what we say may represent a greater truth. #hcsmca
emilyggb29
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Back and forth between a couple of conversations but I'm Emily from Toronto and I've worn all hats (patient, caregiver, profession) #hcsmca
martin_lemieux
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Finding stories online has helped me to find like-minded people I never thought possible! Thanks @colleen_young for that :) #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca YES this is so true https://t.co/VcR3V6bN8r
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @seastarbatita: T1 Patient stories help us find clues to research our own diseases for better care. Patient stories contain DATA #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
RT @seastarbatita: T1 Patient stories help us find clues to research our own diseases for better care. Patient stories contain DATA #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @Stroketattler: T1 Patient stories can be used to improve services https://t.co/2k7prC86xw #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @caretothepeople: A1. Those with #raredisease can spend years chasing a diagnosis. Stories help make sense of the experience. #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
T1 we connect to one another and find healing in sharing your story #hcsmca https://t.co/bUjV2y5Mvl
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
RT @martin_lemieux: Finding stories online has helped me to find like-minded people I never thought possible! Thanks @colleen_young for that :) #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
RT @seastarbatita: T1 Patients stories unite our #raredisease community. They help us feel not alone and break our isolation. #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
RT @seastarbatita: T1 Patient stories help us find clues to research our own diseases for better care. Patient stories contain DATA #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
T1 Patient stories can compliment quantitative research-- Make the numbers real. #hcsmca
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
Patient stories can be a valuable decision-making tool. #hcsmca https://t.co/trQqCXW8dI
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: In US, #patientvoice has served as centerpiece for #collaboration with various stakeholders #hcsmca https://t.co/POwIhCzEgx
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
I'm going to play Devil's Advocate. #DontShootMe - Patients know stories matter. Does the system? #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
RT @seastarbatita: T1 Patient stories let HC providers know that our stories are not unique. That what we say may represent a greater truth. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T1 Patient stories let us connect to others to let us share our hilarious, dark, humour to get through the tough times. #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
What’s the role of stories for #RareDiseaseDay? #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
.RT @btrfly12: RT @blumencasey: February 29 we celebrate #RareDiseaseDay 2016! This year’s theme is Patient Voice. #hcsmca
emilyggb29
https://pbs.twimg.com/profile_images/415279189529341952/lIop1tGm_normal.jpeg
@seastarbatita they bring awareness to diseases that the general population may otherwise not know about #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
RT @martin_lemieux: Finding stories online has helped me to find like-minded people I never thought possible! Thanks @colleen_young for that :) #hcsmca
myidealptexp
https://pbs.twimg.com/profile_images/669609245919215616/w3Dl5FlF_normal.jpg
.RT @btrfly12: RT @blumencasey: February 29 we celebrate #RareDiseaseDay 2016! This year’s theme is Patient Voice. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@colleen_young Some in the system are beginning to know. Some researchers are beginning to find data w/in the stories. #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
#hcsmca https://t.co/akEHlB5zZH
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
T1: patient stories help HCPs figure out what they might be missing in the dx process. #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@hcsmca In my excitement I missed T1 #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @Stroketattler: T1 Patient stories can compliment quantitative research-- Make the numbers real. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Welcome @EmilyGGB29 - multiple hat wearer and convo hopper. #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
T1 when we share our stories we make connections with others for our healing and theirs #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
@martin_lemieux @colleen_young T1 Great comment-- stories help to find like-minded people online. #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
A1 I hope that they're taken as a serious resource for research. For both physical & psychological health #hcsmca https://t.co/0KaqVXq1US
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
@martin_lemieux in the #raredisease community online sharing may be the only way to find someone with a similar experience #hcsmca
hsfcsr
https://pbs.twimg.com/profile_images/378800000600285227/700d6d1329f931ef5ff5b8413487cb01_normal.png
RT @Stroketattler: T1 Patient stories can compliment quantitative research-- Make the numbers real. #hcsmca
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
T1 #raredisease patient stories critical to illustrate difficulty in obtaining diagnosis or accessing care for policymakers #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca for some this is the only way to get through https://t.co/xDeHy8AHrI
emilyggb29
https://pbs.twimg.com/profile_images/415279189529341952/lIop1tGm_normal.jpeg
@blumencasey in other cases it may expediate diagnosis because patient stories identity symptoms which people can take to their MD #hcsmca
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
.@colleen_young Would argue, yes, to those that embrace narrative medicine, empathy, and patient centered care. #hcsmca
trishpaton
https://pbs.twimg.com/profile_images/742167435663409152/4X9F1C32_normal.jpg
T1 Following on last week, HCPs can be leery of sharing pt stories (privacy). How to help overcome? #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
t1 sometimes patients story allows access to treatment for some with rare disease #hcsmca
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @tatterededge: T1: patient stories help HCPs figure out what they might be missing in the dx process. #hcsmca
martin_lemieux
https://pbs.twimg.com/profile_images/718066116317339648/pG6ECbCM_normal.jpg
RT @colleen_young: I'm going to play Devil's Advocate. #DontShootMe - Patients know stories matter. Does the system? #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@mjboyce the #itdoesnthavetohurt initiative is a great example of using pt stories to illustrate research & to guide rsrch #hcsmca
thechangefdn
https://pbs.twimg.com/profile_images/684597180766797824/8eODQ7sd_normal.jpg
Good question @colleen_young. With more pt. advisory councils, and pt. engagement more of a focus across health care, it's starting. #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @LyfeBulb: #hcsmca YES this is so true https://t.co/VcR3V6bN8r
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
@mjboyce for sure we will discuss how stories should be used to change things not just for the sake of sharing #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: Ideally there is balance between the #patientvoice and #policy that serves as the bedrock #hcsmca They can work together #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
@mjboyce T1 Increasing, research is recognizing the benefits of mixed methods and qualitative research using narrative #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
A1 People find understanding and connection that they sometimes cannot find offline #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@caretothepeople Absolutely. They can help guide direction for research. #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
Well said! — Data is made human and meaningful by stories. #hcsmca https://t.co/bXPXbSYgAn
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
Yes! Stories can enhance clinical practice. #hcsmca https://t.co/hGxt4eVCgm
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
T1 #Raredisease can be isolating. Stories share learning & experience, and help build communities. #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
RT @RarePOV: T1 #raredisease patient stories critical to illustrate difficulty in obtaining diagnosis or accessing care for policymakers #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
RT @mjboyce: Well said! — Data is made human and meaningful by stories. #hcsmca https://t.co/bXPXbSYgAn
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
T1: @caretothepeople How do we translate this to those who don't (yet) embrace narrative medicine, empathy, & patient centered care? #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
RT @EmilyGGB29: @seastarbatita they bring awareness to diseases that the general population may otherwise not know about #hcsmca
patientscanada
https://pbs.twimg.com/profile_images/378800000482884133/3d5dae194a367de492146e188902daa1_normal.jpeg
RT @TheChangeFdn: Good question @colleen_young. With more pt. advisory councils, and pt. engagement more of a focus across health care, it's starting. #hcsmca
vwillebrandd
https://pbs.twimg.com/profile_images/690769511428022272/h8PvAZ6B_normal.jpg
RT @RarePOV: T1 #raredisease patient stories critical to illustrate difficulty in obtaining diagnosis or accessing care for policymakers #hcsmca
getsocialhealth
https://pbs.twimg.com/profile_images/738745019809431552/0AjVqyY1_normal.jpg
Congratulations @KathyKastner! Such exciting news! #HCSMCA https://t.co/yM8Ba98SI4
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: I think the #patientvoice can be powerful in developing policy #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
RT @caretothepeople: Yes! Stories can enhance clinical practice. #hcsmca https://t.co/hGxt4eVCgm
martin_lemieux
https://pbs.twimg.com/profile_images/718066116317339648/pG6ECbCM_normal.jpg
The hardest challenge having multiple rare conditions is advocating for a patient, having health care professionals collaborating. #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
RT @GetSocialHealth: Congratulations @KathyKastner! Such exciting news! #HCSMCA https://t.co/yM8Ba98SI4
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Great question @trishpaton #hcsmca https://t.co/F1hakdB8xQ
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
RT @blumencasey: @martin_lemieux in the #raredisease community online sharing may be the only way to find someone with a similar experience #hcsmca
sanfordcords
https://pbs.twimg.com/profile_images/627117371384205312/q5pHRGSz_normal.jpg
Greetings! This is @Austin_Letcher and I'm the Sr. Research Associate of CoRDS #hcsmca
sara_shear
https://pbs.twimg.com/profile_images/2752900624/ae9f6ff9d41b4b750a220adb2a27e1fa_normal.jpeg
@TheChangeFdn #caregiver scholarship winners #hcsmca symposium Feb 24 https://t.co/T12mc1tWGM
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
@seastarbatita @mjboyce Ohh would you mind sharing more info on #itdoesnthavetohurt? #hcsmca
e_bradt
https://pbs.twimg.com/profile_images/657909132331081728/vxxhWV49_normal.jpg
T1. Our recent story about rare disease research aims to inform people on current work & demonstrate the need to advance research #hcsmca
emilyggb29
https://pbs.twimg.com/profile_images/415279189529341952/lIop1tGm_normal.jpeg
@hcsmca it assists with connecting us to others. Sometimes online connections are the only connection to people with the condition #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
@colleen_young @caretothepeople storytellers sometimes need support to tell their stories to reach new audiences #hcsmca
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @seastarbatita: @colleen_young Some in the system are beginning to know. Some researchers are beginning to find data w/in the stories. #hcsmca
williamslaura
https://pbs.twimg.com/profile_images/614247454347653120/7Rhtruyd_normal.jpg
RT @colleen_young: T1: @caretothepeople How do we translate this to those who don't (yet) embrace narrative medicine, empathy, & patient centered care? #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
@seastarbatita That's a great resource - thanks! #hcsmca
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
RT @e_bradt: T1. Our recent story about rare disease research aims to inform people on current work & demonstrate the need to advance research #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca each story impacts someone whether patient or caregiver, no one wants to go through this alone https://t.co/zOu5GUnt27
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Good example of stories making a difference @e_bradt #hcsmca https://t.co/BqmHpsqbc1
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @gratefull080504: T1: In US, #patientvoice has served as centerpiece for #collaboration with various stakeholders #hcsmca https://t.co/POwIhCzEgx
rarediseaseke
https://pbs.twimg.com/profile_images/818744598407286784/4zI2djh9_normal.jpg
Joining in from Nairobi, Kenya #hcsmca #RareDiseaseKE https://t.co/tv8G81f2Do
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@colleen_young great question - I wonder if the answer lies in somehow connecting THROUGH a story? #hcsmca
ctoneloto
https://pbs.twimg.com/profile_images/701868530095026176/EaZM_Ape_normal.jpg
T1.When I share my story of illness other people can identify with it, and your health care can be improved. #hcsmca
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
RT @RarePOV: T1 #Raredisease can be isolating. Stories share learning & experience, and help build communities. #hcsmca
trishpaton
https://pbs.twimg.com/profile_images/742167435663409152/4X9F1C32_normal.jpg
@colleen_young Researchers are used to Qual work, HCP not as much. How to get them >comfortable, >involved? #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: Hold firm to the truth and your convictions. Strive for dialogue and engagement #hcsmca https://t.co/v39rYVLi9P
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @gratefull080504: T1: I think the #patientvoice can be powerful in developing policy #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@mjboyce NP. Great example of researcher working w/ patients/caregivers to guide research goals. #hcsmca
martin_lemieux
https://pbs.twimg.com/profile_images/718066116317339648/pG6ECbCM_normal.jpg
I shared my #RareDiseaseDay story years ago after volunteering for @VasculitisFound of Canada. Made a great impact on others. #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @RarePOV: T1 #Raredisease can be isolating. Stories share learning & experience, and help build communities. #hcsmca
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @caretothepeople: Yes! Stories can enhance clinical practice. #hcsmca https://t.co/hGxt4eVCgm
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca need all aspects and info to best treat https://t.co/0Lm5ONP8mT
stroketattler
https://pbs.twimg.com/profile_images/456416423682646016/-HFYU06r_normal.jpeg
RT @trishpaton: @colleen_young Researchers are used to Qual work, HCP not as much. How to get them >comfortable, >involved? #hcsmca
rarepov
https://pbs.twimg.com/profile_images/830604382093848576/09cxYGdv_normal.jpg
RT @mjboyce: Well said! — Data is made human and meaningful by stories. #hcsmca https://t.co/bXPXbSYgAn
hcitexpert
https://pbs.twimg.com/profile_images/653678755261513728/F2lnsJzh_normal.jpg
RT @JBBC: A1 People find understanding and connection that they sometimes cannot find offline #hcsmca
xubex
https://pbs.twimg.com/profile_images/261382246/xubextwitt_normal.png
gratefull080504 #Consultant #patientengagement #patientvoice #publicspeaker #kidneytransplant #hcsmca https://t.co/xhDBgE7GgE
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
@CToneloto it helps when healthcare providers see us as beyond our disease and stories helps this happen #hcsmca
emilyggb29
https://pbs.twimg.com/profile_images/415279189529341952/lIop1tGm_normal.jpeg
@blumencasey @colleen_young @caretothepeople that's a big benefit, we reach people we wouldn't necessarily reach otherwise! #hcsmca
rarediseaseke
https://pbs.twimg.com/profile_images/818744598407286784/4zI2djh9_normal.jpg
RT @blumencasey: February 29 we celebrate #RareDiseaseDay 2016! This year’s theme is Patient Voice. #hcsmca https://t.co/3mEq5vXwRR
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@blumencasey @caretothepeople Agree 100%. What part of my story precipitates change? Whole med history not always necessary. #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
Moving to T2 shortly. Final thoughts for T1 #hcsmca
tatterededge
https://pbs.twimg.com/profile_images/803730874587955200/hysY8D0w_normal.jpg
@colleen_young #ubc interprofessional health mentors does! 200 students learning from 50 mentors. Changing the future ofhealth care #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
T1: Policy and the #patientvoice are intertwined #hcsmca
lyfebulb
https://pbs.twimg.com/profile_images/765931665436844034/YeDIzspU_normal.jpg
#hcsmca The YES you are me connection! https://t.co/e3zOFSXw8q
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
A great corresponding communal effort by #itdoesnthavetohurt — c/o @seastarbatita #hcsmca https://t.co/DJRmjJPjsd
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@LyfeBulb Agree 100% #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
This is beautiful. Resonates w/ my life. #raredisease #hcsmca https://t.co/I4JV6K3RBK
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
@colleen_young Research show patient stories influence positive health outcomes = hard ROI to sway the skeptical. #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @blumencasey: @colleen_young @caretothepeople storytellers sometimes need support to tell their stories to reach new audiences #hcsmca
e_bradt
https://pbs.twimg.com/profile_images/657909132331081728/vxxhWV49_normal.jpg
T1. Here is the story I mentioned on rare disease research @CHEOHospital @C4RCanada: https://t.co/mCB0o8R5wd #onHWS #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@colleen_young it's about finding that point of connection between HCP and patient - sometimes story can be the entry point #hcsmca
btrfly12
https://pbs.twimg.com/profile_images/482193872156905472/3xMtd71T_normal.jpeg
RT @blumencasey: @CToneloto it helps when healthcare providers see us as beyond our disease and stories helps this happen #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @rarediseasefdn: Join in #raredisease community. Tweetchat on #raredisease and storytelling going on NOW! #hcsmca https://t.co/7Jt6fDPhlW
ctoneloto
https://pbs.twimg.com/profile_images/701868530095026176/EaZM_Ape_normal.jpg
RT @blumencasey: @CToneloto it helps when healthcare providers see us as beyond our disease and stories helps this happen #hcsmca
stepstoneske
https://pbs.twimg.com/profile_images/808980536714756096/i9uSmjZa_normal.jpg
#RareDiseaseKE #hcsmca https://t.co/7gh4zEKJpo
debmaskenskcc
https://pbs.twimg.com/profile_images/797441987423006721/1sKe9GvE_normal.jpg
@colleen_young Individual stories are just that, one-offs. Think we need aggregates to change policy #hcsmca
gratefull080504
https://pbs.twimg.com/profile_images/492657676061376514/-UZiUS8o_normal.jpeg
#hcsmca https://t.co/waNKxTQOid
caretothepeople
https://pbs.twimg.com/profile_images/735847069185757186/Sd9GYkb__normal.jpg
.@trishpaton @colleen_young More med & nursing schools are adding qual training. Can we do more? #hcsmca
blumencasey
https://pbs.twimg.com/profile_images/796376025508749313/PPh8KoXu_normal.jpg
@mjboyce @seastarbatita great to see stories targeted at new audiences like parents and children #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@tatterededge Have you got a link describing this program? Sounds amazing. Want to model for @MayoClinic Connect. #hcsmca
mjboyce
https://pbs.twimg.com/profile_images/704427029727305729/h6hFgNjf_normal.jpg
@blumencasey Right? Sharing is important, too. But it's critical to get the patient perspective as valid part of the process. #hcsmca
caretothepeople
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RT @seastarbatita: This is beautiful. Resonates w/ my life. #raredisease #hcsmca https://t.co/I4JV6K3RBK
blumencasey
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T2. How can we better value patient stories and respond to the insights shared? #hcsmca
hcsmca
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T2. How can we better value patient stories and respond to the insights shared? #hcsmca
tatterededge
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@colleen_young @trishpaton whenever possible, invite the pt. to share it themselves. #hcsmca
trishpaton
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@RareDiseaseKE So glad you're here! What amazing reach today. #hcsmca
btrfly12
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RT @e_bradt: T1. Here is the story I mentioned on rare disease research @CHEOHospital @C4RCanada: https://t.co/mCB0o8R5wd #onHWS #hcsmca
emilyggb29
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@blumencasey @CToneloto patients are people who have lives beyond the diagnosis on paper. At least that's my general philosophy #hcsmca
anetto
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RT @tatterededge: @colleen_young #ubc interprofessional health mentors does! 200 students learning from 50 mentors. Changing the future ofhealth care #hcsmca
rarepov
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FREE toolkit from @GlobalGenes on Using Storytelling to Raise Awareness of Your #RareDisease: https://t.co/leXkehsp1c #hcsmca
seastarbatita
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@caretothepeople @mjboyce check out itdoesnthavetohurt.ca for some more info cc @DrCChambers #hcsmca
stroketattler
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@caretothepeople @colleen_young Really like what @trishgreenhalgh is doing with qualitative research. #hcsmca
ilovepigenetics
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RT @RarePOV: T1 #Raredisease can be isolating. Stories share learning & experience, and help build communities. #hcsmca
stroketattler
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RT @seastarbatita: @caretothepeople @mjboyce check out itdoesnthavetohurt.ca for some more info cc @DrCChambers #hcsmca
jbbc
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@blumencasey T2 I think we need to embed respect for and understanding of stories in medical education #hcsmca
btrfly12
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RT @hcsmca: T2. How can we better value patient stories and respond to the insights shared? #hcsmca
mjboyce
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@Stroketattler It's great - And I think it's happening partly because of the activities of communities like this one #hcsmca
gratefull080504
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T1: In my opinion, #raredisease community has built something special #bigpharma needs to understand how to engage differently #hcsmca
btrfly12
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RT @RarePOV: FREE toolkit from @GlobalGenes on Using Storytelling to Raise Awareness of Your #RareDisease: https://t.co/leXkehsp1c #hcsmca
blumencasey
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RT @gratefull080504: T1: In my opinion, #raredisease community has built something special #bigpharma needs to understand how to engage differently #hcsmca
tatterededge
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@colleen_young @MayoClinic here you go! Tell them I sent you! 😉 https://t.co/TuWr1xVPc9 #hcsmca
seastarbatita
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@blumencasey @mjboyce It resonated for me b/c pain such a big issue in #raredisease community - big overlap #hcsmca Storytelling helps
ctoneloto
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@EmilyGGB29 @blumencasey I completely agree! #hcsmca
lyfebulb
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T2 do not compare the stories they are part of a bigger book together everyone handles and reacts different #hcsmca https://t.co/4yyLbGlGqo
btrfly12
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RT @JBBC: @blumencasey T2 I think we need to embed respect for and understanding of stories in medical education #hcsmca
rarepov
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RT @gratefull080504: T1: In my opinion, #raredisease community has built something special #bigpharma needs to understand how to engage differently #hcsmca
anetto
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@tatterededge @colleen_young Yes. It works well. A program for this in Toronto also#hcsmca
verylightnosuga
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RT @JBBC: @colleen_young it's about finding that point of connection between HCP and patient - sometimes story can be the entry point #hcsmca
martin_lemieux
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T2 - Help to get the word out. Exposure is key to successful connections. Connecting stories together is so powerful. #hcsmca
tatterededge
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RT @colleen_young: @tatterededge Have you got a link describing this program? Sounds amazing. Want to model for @MayoClinic Connect. #hcsmca
tatterededge
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RT @anetto: @tatterededge @colleen_young Yes. It works well. A program for this in Toronto also#hcsmca
caretothepeople
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RT @RarePOV: FREE toolkit from @GlobalGenes on Using Storytelling to Raise Awareness of Your #RareDisease: https://t.co/leXkehsp1c #hcsmca
mjboyce
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@seastarbatita Do you know of any published results that cite that fact too? #hcsmca
lyfebulb
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Power in numbers more stories more info #hcsmca https://t.co/RNFAzKxr4Z
sanfordcords
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Thanks for this great resource! @RarePOV #hcsmca https://t.co/aVbFq7B42b
thechangefdn
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T2: Committing to a feedback loop is an initial and easy way to show you value patient insight. Show what you did or didn't do. #hcsmca
anetto
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RT @Stroketattler: @caretothepeople @colleen_young Really like what @trishgreenhalgh is doing with qualitative research. #hcsmca
colleen_young
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T1 agree @gratefull080504 #rarediseases have propel the sonic boom of online connectivity and the power of story. #hcsmca
seastarbatita
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@hcsmca I think multiply stories. Having only 1 story (ie at conference) puts pts on 'pedestal'. Having many shows diversity of exp #hcsmca
gratefull080504
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T2: It can serve as a lesson in #patientengagement to the #HITsm . #hcsmca https://t.co/RuYVtcs6Ly
stroketattler
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@mjboyce T2 Yes because of activities of SoMe communities, but also because of great narrative research e.g. Arthur Frank #hcsmca
lyfebulb
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Some #bigpharma are adding patient advocates to their team VOICES heard! #hcsmca https://t.co/4kU2UuQ1c4
jjschipper
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RT @TheChangeFdn: Good question @colleen_young. With more pt. advisory councils, and pt. engagement more of a focus across health care, it's starting. #hcsmca
tatterededge
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@colleen_young @MayoClinic #ubc 's@program was studied by the UK health authority about a year & a half ago. We are leaders! #hcsmca
mjboyce
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@trishpaton @caretothepeople @seastarbatita @DrCChambers Thanks ! #hcsmca
jbbc
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Story is like gravity: a field of force that surrounds us But, like gravity, we are hardly aware of how it shapes our lives #hcsmca
colleen_young
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T2: @TheChangeFdn Touché - the feedback loop. Critical and The Change Fdn does this incredibly well. AND shares their models. #hcsmca
blumencasey
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Great past tweet "Patients want 2 be more than catalysts & story tellers. What we know has value for the health system."-@anetto #hcsmca
caretothepeople
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@LyfeBulb How do We get past the objection though that stories represent an n of 1? #hcsmca
btrfly12
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RT @TheChangeFdn: T2: Committing to a feedback loop is an initial and easy way to show you value patient insight. Show what you did or didn't do. #hcsmca
rarepov
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@gratefull080504 True but keep @US_FDA restrictions in mind. Unclear guidelines understandably make biopharmas nervous #hcsmca
colleen_young
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@tatterededge thank you. I will #hcsmca
blumencasey
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T2. How can we better value patient stories and respond to the insights shared? #hcsmca