#hcsmca transcript

Healthcare Social Media Transcript

From: Wed Aug 06 10:00:00 PDT 2014
To: Wed Aug 06 11:15:00 PDT 2014

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


Healthcare Conference  - Healthcare Tweet Chats  -  Healthcare Analytics

hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
RT @seastarbatita: About to start #hcsmca chat. Communicating the experience of illness in the digital age. http://t.co/Bc5VFFYB4d
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
RT @seastarbatita: About to start #hcsmca chat. Communicating the experience of illness in the digital age. http://t.co/Bc5VFFYB4d
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
#hcsmca c'est parti! Le discours se présente principalement en anglais. Mais les tweets en français sont les bien bienvenues!!
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. (@colleen_young moderating)
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. I'll be moderating today.
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
RT @hcsmca #hcsmca c'est parti! Le discours se présente principalement en anglais. Mais les tweets en français sont les bien bienvenues!!
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
RT @hcsmca: Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. (@colleen_young moderating)
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
#hcsmca c'est parti! Le discours se présente principalement en anglais. Mais les tweets en français sont les bien bienvenues!!
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
Let's start with introductions. Who's here today? #hcsmca
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
Please join me in welcoming today's special guests @SusannahFox @pamressler @MeredithGould my fellow panelists at #medx #hcsmca
drmikesevilla
https://pbs.twimg.com/profile_images/701037990609608704/Oan-nJs5_normal.jpg
RT @hcsmca: Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. (@colleen_young moderating)
drmikesevilla
https://pbs.twimg.com/profile_images/701037990609608704/Oan-nJs5_normal.jpg
RT @colleen_young: Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. I'll be moderating today.
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
RT @colleen_young Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. I'll be moderating today.
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Hi all. Let's start with introductions. Who's here today? #hcsmca
brentanthony01
https://pbs.twimg.com/profile_images/2285390413/206x3pm0m7432wqryhqu_normal.jpeg
#hcsmca chats about communicating the experience of illness in the digital age http://t.co/YBpohqYYH4 #PatientExperience today
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
Moi! Ici! #hcsmca
drmikesevilla
https://pbs.twimg.com/profile_images/701037990609608704/Oan-nJs5_normal.jpg
RT @hcsmca: Please join me in welcoming today's special guests @SusannahFox @pamressler @MeredithGould my fellow panelists at #medx #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
MT @colleen_young #hcsmca c'est parti! Le discours se présente principalement en anglais>les tweets en français sont les bien bienvenues!!
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
Hello #hcsmca! I'm Rachel, ePatient from Alberta. I plan on lurking and I'll participate if I can! #hcsmca
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
Participating in #hcsmca from Stockholm
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@brentanthony01 Welcome to #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Hello all, Bernadette Keefe MD joining you from Chapel Hill NC ~ so delighted to be here for this important chat ~ #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
RT @brentanthony01: #hcsmca chats about communicating the experience of illness in the digital age http://t.co/YBpohqYYH4 #PatientExperience today
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
Annette here in Toronto. Health blogger and ePatient delegate to #MedX this year to see #MedXsm panel #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
Good morning from Canada's sunny west coast. I'm chair @rarediseasefdn and mom to a #raredisease child. Looking fwd to today! #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@anetto ::waving:: hi Annette! #hcsmca
medicalidcards
https://pbs.twimg.com/profile_images/748543294515388416/JwSA45Em_normal.jpg
RT @rachelcrooks_: Hello #hcsmca! I'm Rachel, ePatient from Alberta. I plan on lurking and I'll participate if I can! #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RT @hcsmca: Please join me in welcoming today's special guests @SusannahFox @pamressler @MeredithGould my fellow panelists at #medx #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@nxtstop1 Hi Bernadette. #hcsmca
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@colleen_young <waving from Washington, DC> Susannah Fox here #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
Hi everyone :) I'm Jenn, mom to 3- one with special needs. #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
Stoping in during my lunch hour, from Texas. I'm a pt. exp manager and a POP (parent of patient) #hcsmca
amydewinter1
https://pbs.twimg.com/profile_images/750078514838274049/DLkhuxgk_normal.jpg
RT @brentanthony01: #hcsmca chats about communicating the experience of illness in the digital age http://t.co/YBpohqYYH4 #PatientExperience today
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Hi Coleen, Annette, Isabel, Susannah, Brent Rob,Sarah, Rachel,Meredith ~ so wonderful to be here with you all~ #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
#hcsmca Waving from a Dutch Evening (rain) ;-) Curious for the chat!
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @hcsmca: Welcome everyone to #hcsmca, a discussion abt health care and social media in Canada. (@colleen_young moderating)
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @hcsmca: Please join me in welcoming today's special guests @SusannahFox @pamressler @MeredithGould my fellow panelists at #medx #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
@hcsmca Good to see @SusannahFox @Pamressler @meredithGould and @colleen_Young today #hcsmca
providence_hlth
https://pbs.twimg.com/profile_images/3532045028/5d48ae667cdc27e9f66cad7e3c2d2b53_normal.jpeg
RT @brentanthony01: #hcsmca chats about communicating the exp of illness in the digital age http://t.co/QqA7hFrAHi #PatientExperience today
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Hello all -- Pam Ressler in Boston MA Thrilled to be moderating the panel w these fab women at #Medx #medxsm #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
#hcsmca Hi all! Sara here, director of digital media and communications at Quinte Pediatrics and Adolescent Medicine!
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
Hi all, Natrice retired Psw/caregiver listening in from Ontario :) #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Fantastic from Texas to Stockholm, Toronto to NC, Holland to Alberta, Boston to BC. We're officially international today. #hcsmca.
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Same~ a pleasure RT @anetto @hcsmca Good to see @SusannahFox @Pamressler @meredithGould and @colleen_Young today #hcsmca
chibbie
https://pbs.twimg.com/profile_images/384766455/joanna_twitter_normal.JPG
Hi #hcsmca - joining discussion today from the UK.
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
Joining in from Baltimore, MD, USA, sociologist, author, digital strategist, epatient delegate to #MedX, #MCCSM Platinum Fellow! #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@chibbie Thanks for sticking around. #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
Also eating watermelon while typing. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Keep the intros coming as we move to T1 - lots to cover today. #hcsmca
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
Keep the intros coming as we move to T1 - lots to cover today. #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@pamressler Hi Pam ~ Nice to see you~ #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@MeredithGould Sounds potentially messy! #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
@nxtstop1 Great to see you too, Bernadette! #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@colleen_young Hi Colleen ~ finally I make it back to your chat~ :) #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@colleen_young Too cool :) #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
Will be leaving right at 11 today - have to take 3 kids to soccer camp. #summertimemom #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@NatriceR Hi Natrice ~ lovely to see you #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
MT @colleen_young From Texas to Stockholm, Toronto to NC, the Netherlands to Alberta, Boston to BC. International today. #hcsmca #hcsmeu
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
@seastarbatita I like a challenge. At least the cat isn't walking across the keyboard. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
We're flipping our #medX panel. Today's discussion will bring the discussion to a new level. #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@anetto Hi there Anette ~ so good to see you~ #hcsmca
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
T1: How do you decide whether to disclose your health status via social media? #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
RT @hcsmca T1: How do you decide whether to disclose your health status via social media? #hcsmca
grandviewkids
https://pbs.twimg.com/profile_images/378800000280980723/aca4ac27a42574c581fe045e9ddc29a3_normal.jpeg
#hcsmca Lisa Wilson, Community & Media Relations Coordinator for Grandview Children's Centre & Foundation. I'll be lurking (reading) today.
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
RT @hcsmca T1: How do you decide whether to disclose your health status via social media? #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
T1: How do you decide whether to disclose your health status via social media? #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
RT @colleen_young We're flipping our #medX panel. Today's discussion will bring the discussion to a new level. #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
RT @hcsmca: T1: How do you decide whether to disclose your health status via social media? #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
RT @hcsmca T1: How do you decide whether to disclose your health status via social media? #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @rohal: MT @colleen_young From Texas to Stockholm, Toronto to NC, the Netherlands to Alberta, Boston to BC. International today. #hcsmca #hcsmeu
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T1 Was tough decision for me. Wasn't my health status. Was my son's. How much of his privacy to reveal? But I needed to gather info #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @mindthecompany: RT @hcsmca T1: How do you decide whether to disclose your health status via social media? #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@SusannahFox @pamressler @MeredithGould Can you share any insights on your observations of motivations for sharing? #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
Hi, all! Cancer patient and caregiver looking in from Florida #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
RT @hcsmca: T1: How do you decide whether to disclose your health status via social media? #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @seastarbatita: T1 Was tough decision for me. Wasn't my health status. Was my son's. How much of his privacy to reveal? But I needed to gather info #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T1 If disclosing might benefit someone else experiencing similar issue. Looked for blog myself for info before wrist surgery #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
@seastarbatita was your son old enough to be aware of your online presence on his behalf? If so, how did he react? #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@seastarbatita T1: How has this changed as he ages? #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
T1 Urgency of issue + trust (of platform and other individuals) #hcsmca
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@seastarbatita T1: Same for me. I shared my son's situation in order to bring my network up to the next level. #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RE @seastarbatista ’s https://t.co/cu745jQ4Wh Guess you had a good convo with y’r son? #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
#Hcsmca phew! Just made it in time!
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
T1 People tend to balance personal needs (e.g., for privacy) with realization that sharing could help another. #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
T1: I always shared on a blog because I wanted the support from my disease community. #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @anetto: T1 If disclosing might benefit someone else experiencing similar issue. Looked for blog myself for info before wrist surgery #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
@hcsmca T1- for us, it was important to share- search for others like us. #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @cmaer: T1 Urgency of issue + trust (of platform and other individuals) #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
T1: I started sharing more widely once I realized that other people might benefit from what I had to share. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@anetto T1: do you disclose to help others? or first motivated by looking for help? #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
A1 No-brainer w/my own dx; I gather info & fight isolation. Am more circumspect as caregiver re privacy #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Would Agree MT @MeredithGould T1 People tend to balance personal needs (e.g., for privacy)w/ realization>sharing could help another. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@pamressler Initially he was toddler so no. As he got older, I/we check in w/ him what is ok. #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RT @MeredithGould: T1 People tend to balance personal needs (e.g., for privacy) with realization that sharing could help another. #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
@seastarbatita was the same for me! I was very reluctant to share his info with the world...would people judge me?! #hcsmca #hcsmca
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@cmaer T1: yes, in my fieldwork w/communities of rare disease people say they had little choice but to share #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@JBBC Glad you could make it. #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @colleen_young: @anetto T1: do you disclose to help others? or first motivated by looking for help? #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
@colleen_young It works both ways. I hope to help others and they help me too #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
T1 Need for information often propels one to online communities -- scared, fear and need info that one is not receiving from hcp #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
T1 In my own case, I opted out of self-disclosure b/c of possible negative impact on employability. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Welcome RT @Elissa_Malcohn: Hi, all! Cancer patient and caregiver looking in from Florida #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
RT @pamressler: T1 Need for information often propels one to online communities -- scared, fear and need info that one is not receiving from hcp #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
Michael Martineau joining in a little late #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
Such a valuable way to connect RT @mindthecompany T1- for us, it was important to share - search for others like us. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@colleen_young I now talk more about what my needs are as caregiver. When I talk about him I check w/ him what’s ok. he’s almost 13 #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
Joining a little late. Good day everyone. Shirley here.... #hcsmca
petradmd
https://pbs.twimg.com/profile_images/3652955383/58a8dc74c4b65f698d64b6dffadb014d_normal.jpeg
Wise words from a #medstudent on Wellness and Professionalism. Worth the read! #hcldr #feMed #hcsmca #hcsm https://t.co/0Daq89nFAf
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Impt for many RT @MeredithGould T1 In my own case, I opted out of self-disclosure b/c of possible negative impact on employability. #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RT @SusannahFox: @cmaer T1: yes, in my fieldwork w/communities of rare disease people say they had little choice but to share #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@colleen_young For instance I told him about today. Checked what was ok to say. #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
t1 #hcsmca i started off behind mask of anonymity..took me a year to "reveal" myself
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
RT @SusannahFox: @seastarbatita T1: Same for me. I shared my son's situation in order to bring my network up to the next level. #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
T1 General observation: Introverts in person tend to feel more comfortable sharing online. Strange but true! #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
RT @MeredithGould T1 General observation: Introverts in person tend to feel more comfortable sharing online. Strange but true! #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@colleen_young @anetto We've seen people & families disclose for both reasons (personally I've done both as well) #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@rachelcrooks_ My observation has been that migrating from seeking help to offering support is the common trajectory. #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
@JBBC What changed Marie? #hcsmca
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@anetto @colleen_young Whoosh, that resonates. Hearing from people that I helped them by sharing? Gold to me. #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @JBBC: t1 #hcsmca i started off behind mask of anonymity..took me a year to "reveal" myself
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
HI! Good to see you .. Tweet u lol! RT @JBBC t1 #hcsmca i started off behind mask of anonymity..took me a year to "reveal" myself
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
.@MeredithGould I'm an introvert, I have a much easier time sharing online! Internet was a logical place for me to find support #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
MT @colleen_young @rachelcrooks_ My observation has been that migrating from seeking help to offering support is common trajectory. #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@MeredithGould in the beginning was same for me..working in public relations..all about image #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
#hcsmca all in all, seeing your responses to T1, disclosure in sharing your health status is a good rethink up front;then decide how and why
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
RT @colleen_young: @rachelcrooks_ My observation has been that migrating from seeking help to offering support is the common trajectory. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@JBBC What propelled you to "reveal" yourself? Self motivated or more accepting environment? #hcsmca
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
T1: when I choose to work to help others to help myself and vice versa, blogging about PD seemed to make sense #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
@seastarbatita my kiddo just turned 10 and I think he is becoming more aware his health and his differences #hcsmca #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T1 My son wants to share. He has lived his life knowing sharing=greater chance at better care & greater chance at helping others #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
T1: Usually seeking others with similar experience for sharing and support #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
@JBBC Also, in the USA (before ACA) I couldn't risk publicizing a pre-existing condition, esp when I was buying my own insurance #hcsmca
kevin4quality
https://pbs.twimg.com/profile_images/708399027520274432/ju5ltbhQ_normal.jpg
This is a very interesting #hcsmca chat. Thanks everyone for sharing so much.
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@rohal T1 And yet. I also meet people w rare disease who do NOT share online. Their voices aren't here. #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@JBBC What made you decide to reveal our identity? #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T1 @jbbc I started off anonymous too but with experience grew more comfortable. Never affected employability for me in Canada #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
I think my willingness to share depends on medical condition. More likely to share cardiac issues than mental health issues. #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
Just noticing the female predominance in this chat - chance? subject matter? statement on nature of #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
RT @eHealthMusings: I think my willingness to share depends on medical condition. More likely to share cardiac issues than mental health issues. #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
@colleen_young @rachelcrooks_ I've tended to do both simultaneously; already had experience 2 share when became active in soc media #hcsmca
royal_college
https://pbs.twimg.com/profile_images/458920227745443840/Q5B5OEY__normal.jpeg
Managing evolving scopes of practice of #cdnhealth professionals - read our statement http://t.co/081pC6Ntp2 #hcsmca http://t.co/ecG7UtwsDo
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Most e-patients R womenRT @cmaer Just noticing the female predominance in this chat - chance? subject matter? statement on nature of #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@QuintePediatric saw how courageously others shared their story..gave me courage to own my story #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
@SusannahFox Yes, Susan, I think first is the person’s own motivation, then the need of the community? #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@PoPculture_px my son’s willingness to share has fluctuated & will fluctuate I think. & that’s ok. Have to follow HIS lead #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @SusannahFox: @rohal T1 And yet. I also meet people w rare disease who do NOT share online. Their voices aren't here. #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
Just noticing the female predominance in this chat - chance? subject matter? profound statement on wo shares health info? #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
By that mean on #SoMe RT @cmaer Just noticing the female predominance in this chat - chance? subject matter? statement on nature of #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
RT @cmaer Just noticing the female predominance in this chat - chance? subject matter? profound statement on wo shares health info? #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@SusannahFox @rohal Because they don't want to share or because they don't know about the opportunity? Probably both & more #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
#hcsmca For the parents/caregivers in this chat: How do you draw the line between what you will & will not share about you kids/fam?
susannahfox
https://pbs.twimg.com/profile_images/653672709784780803/h0oDGkIQ_normal.jpg
@rohal Yes. Higher need, lower threshold for sharing. Unless it's a child. Complicated. #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@JBBC Nice :) #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
T1 Pat, you hit the nail on the head. Most men wouldn't be caught dead sharing health info online~ nature of SoMe too (more women) #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
IMPT -->MT @cmaer noticing female predominance in chat - chance? subject matter? profound statement on wo shares health info? #hcsmca
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
T1: I mostly write in English bc the community and interest are larger #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
This moves nicely into T2. Coming up.... #hcsmca
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
This moves nicely into T2. Coming up.... #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T1 Once saw situation where mom had revealed too much. Child was outraged by loss of privacy. Big effect on family #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
@seastarbatita great advice!! This is a prime example of why sharing through SoMe is important #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
@nxtstop1 And yet I'm beginning to view age cohort as a more significant predictor of sharing than sex/gender. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@cmaer Same thing happens in IRL groups - at leas those for @rarediseasefdn. Not exclusively moms but predom moms. #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
@nxtstop1 I must introduce you to @YoniFreedhoff who live-tweeted his own vasectomy. But then he is by no means the norm #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
@QuintePediatric That is an ongoing dilemma. Currently separating his story from "our" journey. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
T2: What factors prevent you from disclosing your health status via social media? #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@cmaer interesting observation! Is it more acceptable for women to share their vulnerability online? #hcsmca
hcsmca
https://pbs.twimg.com/profile_images/1132550367/hcsmCA_c1b_90__2__normal.jpg
T2: What factors prevent you from disclosing your health status via social media? #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
T1 Many of the health communities online are frequented by women because of the diagnosis involved? #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
T1 Hey MY mother sold a story about my childhood health trauma to Good Housekeeping as "My Problem and How I Solved It." Truth! #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
RT @hcsmca: T2: What factors prevent you from disclosing your health status via social media? #hcsmca
mbastaw
https://pbs.twimg.com/profile_images/487674814417489920/6MJ31OlX_normal.jpeg
Hi all! Joining late. Marina here from UofT. PhD student studying #caregivers and peer support. #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
RT @hcsmca T2: What factors prevent you from disclosing your health status via social media? #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
Also why men eschew healtcareMT @cmaer notice female predominance in chat:chance?subject matter?statement on who shares health info? #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
@nxtstop1 do you have any stats / studies to back up your assertion re: men and #SoMe? #hcsmca
mbastaw
https://pbs.twimg.com/profile_images/487674814417489920/6MJ31OlX_normal.jpeg
RT @hcsmca T2: What factors prevent you from disclosing your health status via social media? #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @colleen_young: T2: What factors prevent you from disclosing your health status via social media? #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@MeredithGould which age cohort shares more? #hcsmca @nxtstop1
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
@JBBC I'd say that cultural bias still exists about men not wanting to appear vulnerable and/or not comfortable sharing health info #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
@SusannahFox @colleen_young I compare how choices of clinics for treatment are made: is the condition worse, more effort gets spent #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
RT @MeredithGould RT @hcsmca: T2: What factors prevent you from disclosing your health status via social media? #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
T2: Mostly, some things I am just uncomfortable sharing. Some justified, some not. Hard to overcome even if I want to share #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@MeredithGould @nxtstop1 age cohort? #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
T2: most significant factor is social stigma associated with condition. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@SusannahFox @rohal in my bricks & mortar #raredisease group ppl come to get resources: move to supporting role as well. empowering #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
@QuintePediatric I try 2b sensitive to caree's perspective; differs from my own due to brain damage. We see reality differently #hcsmca
healthworksbc
https://pbs.twimg.com/profile_images/816698907325448192/wvCM6_GF_normal.jpg
RT @hcsmca: T2: What factors prevent you from disclosing your health status via social media? #hcsmca
rachelgranatino
https://pbs.twimg.com/profile_images/436614534036332544/6fUge8c3_normal.jpeg
T2) Privacy is always the main concern; however, if the community is based on a shared condition that can alleviate discomfort. #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@colleen_young fears of being judged and labelled #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
@colleen_young Millennials and Gen Z seem to have a more expansive definition of appropriate self-disclosure than Boomers #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@JBBC @cmaer T1 More acceptable for women to show vulnerability anywhere.The Culture Thing.Poor men who suffer w/disease in silence #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
MT @eHealthMusings willingness to share depends on medical condition. More likely to share cardiac issues than mental health issues. #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
Agreed RT @JBBC @colleen_young fears of being judged and labelled #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
@MeredithGould people always ask me why I haven't written a book about my kiddo and our pt. exp...#hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@eHealthMusings Different conditions definitely carry different amt of stigma. #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
T2: Also worry about repercussions of sharing online. I always feel like I have to be careful about what I say. #hcsmca
ehealthmusings
https://pbs.twimg.com/profile_images/537314697104457728/1AH8QnYs_normal.jpeg
Exactly! RT @seastarbatita @eHealthMusings Different conditions definitely carry different amt of stigma. #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@mindthecompany I've seen many family bloggers go through this transition, esp as their children age. Definitely not easy. #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@hcsmca T2 effects on future employment prospects is a big fear #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
@seastarbatita @SusannahFox Sure the benefits for ppl in hearing but one should have the inclination to do so - it’s not obligatory #hcsmca
mh_ccac
https://pbs.twimg.com/profile_images/821742218721558533/KbVlEgSo_normal.jpg
Tuning into #hcsmca with @colleen_young to hear about #patient disclosure of illnesses on #socialmedia
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T2 Not comfortable using personal relationships, even from online communities on Social Media without permission (RTs excepted) #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
MT @seastarbatita @SusannahFox @rohal #raredisease group ppl come to get resources: move to supporting role. empowering #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@eHealthMusings True. @PaulLikeMe articulates this well in his comment on blog http://t.co/nSWabxmbSK #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
T2: Potential insurance implications #hcsmca
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @MH_CCAC: Tuning into #hcsmca with @colleen_young to hear about #patient disclosure of illnesses on #socialmedia
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@MH_CCAC Welcome #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@Elissa_Malcohn Thoughtful reply. Has making the distinction become easier over time? Does the caree share input with you? #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
@QuintePediatric we're still very open, but we are careful about how we present things. #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@rohal @SusannahFox Yes. But seems to happen naturally for so many. #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
T2 Major fear of data being used against you by insurance companies, gov't etc (big data is always unencodable) #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
T2: For me, I am sometimes reluctant to share on SoMe because I work in healthcare. Hard to not bite the hand that feeds me #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@SaraRiggare T2 That is a real favor to all~ #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
RT @mindthecompany @QuintePediatric we're still very open, but we are careful about how we present things. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@PoPculture_px Is print different from sharing online? #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
T2 Taking on the illness/disease/condition as a primary identity is distressing for some; others seem to love it. ;-) #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @SaraRiggare: T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@nxtstop1 @cmaer yes agree with you..and that's why voices like @abrewi3010 @mjseres @T2DRemission so important #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @PoPculture_px: T2: For me, I am sometimes reluctant to share on SoMe because I work in healthcare. Hard to not bite the hand that feeds me #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
RT @NatriceR RT @SaraRiggare: T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
@PoPculture_px I want to go into healthcare and I worry about this too #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
@williampearl Great point, in the US where health insurance is often connected to one's employment, may be detrimental to employment #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@cmaer I'm inclined to say yes but I've seen plenty of people hold back for all kinds of reasons too. Each case is unique I suppose. #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
So True~Gems! RT @JBBC @nxtstop1 @cmaer yes agree with you..and why voices like @abrewi3010 @mjseres @T2DRemission so important #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
Info as important as support RT @SaraRiggare: T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
Indeed MT @pamressler in the US where health insurance is often connected to one's employment, may be detrimental to employment #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T2 I won't sharing anything that will embarrass my son later. & I caution him against same. Hv to balance disclosure against privacy #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
A2 I share pretty openly, e.g., via blog on Cancer Survivors Network and at @WhatNext_Cancer #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@nxtstop1 @cmaer definitely a topic we should come back. To in a future chat! #hcsmca
chibbie
https://pbs.twimg.com/profile_images/384766455/joanna_twitter_normal.JPG
RT @MeredithGould: T2 Taking on the illness/disease/condition as a primary identity is distressing for some; others seem to love it. ;-) #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
T2 If you are very active in SM and share your health condition it may start to overly define who you are in SM community #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@PoPculture_px that I understand! #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
RT @JBBC: @nxtstop1 @cmaer definitely a topic we should come back. To in a future chat! #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
RT @mindthecompany: @QuintePediatric That is an ongoing dilemma. Currently separating his story from "our" journey. #hcsmca
meredithgould
https://pbs.twimg.com/profile_images/589625219943399424/rCd2b3eL_normal.jpg
Similar for RA pts RT @SaraRiggare T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
#hcsmca T2 when ppl withhold relevant information from their sharing - can advices from the community work?
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
RT @seastarbatita RT @mindthecompany: @QuintePediatric That is an ongoing dilemma. Currently separating his story from "our" journey #hcsmca
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
@cmaer very true! Tricky balance… #hcsmca
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
#hcsmca we share our stories to know we are not alone
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
@JBBC @cmaer Definitely #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T2 Good reason: Build awareness of disease if less known or chactacterized inaccurately #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@seastarbatita Important to model good online behaviour for young ones. #hcsmca
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
+1 RT @JBBC #hcsmca we share our stories to know we are not alone
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
RT @MeredithGould: Similar for RA pts RT @SaraRiggare T1: Also wanted to “tell the world” that all people with Parkinson are not old #hcsmca
aureliacotta
https://pbs.twimg.com/profile_images/1476350800/AureliaCotta_Avatar_twitter_normal.jpg
@colleen_young T2: disclosing under my own name? Basically, stigma, shame, knowing that people will judge and reject. #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
T2 'x' or 'y' is much more than a patient who had/has breast cancer for example but that's how the SM world may judge you, no? #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@mindthecompany Curious: Do you have a plan for introducing your child to their digital history? Have you decided on when you will? #hcsmca
rachelcrooks_
https://pbs.twimg.com/profile_images/588171361710813184/TIuwg4TB_normal.jpg
+1 RT @anetto: T2 Good reason: Build awareness of disease if less known or chactacterized inaccurately #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RT @seastarbatita: MT @eHealthMusings willingness to share depends on medical condition. .,.. #hcsmca
cancergeek
https://pbs.twimg.com/profile_images/800438414789214208/1uIr0nif_normal.jpg
RT @SusannahFox: @cmaer :) If we are all-stars of anything, it's listening. Hopeful for great chat. @pamressler @colleen_young @MeredithGould #hcsmca #medxsm
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
RT @AureliaCotta: @colleen_young T2: disclosing under my own name? Basically, stigma, shame, knowing that people will judge and reject. #hcsmca
nursenerdy
https://pbs.twimg.com/profile_images/699596962601967618/aqB9nib1_normal.jpg
I've been lurking a bit - joining late #hcsmca discussion re: online communities - from Vancouver BC!
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@seastarbatita That's probably an interesting stage to be at. How receptive to it are they? #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @JBBC: #hcsmca we share our stories to know we are not alone
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@Elissa_Malcohn Do online discussion forums such as @WhatNext_Cancer @VirtualHospice etc allow for more open sharing than Tx/Fb etc? #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
T2: patients and caregivers are hungry for information. Seeking solns and how to live with a health challenge. Sharing becomes impt #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
T2 Am very wary of sharing anything of FB. full stop. Prefer to share on @rarediseasefdn site where I know we're not data mining #hcsmca
nxtstop1
https://pbs.twimg.com/profile_images/680901717995589632/RtsSLcY-_normal.jpg
T2 Also was reading that Anette had mentioned "why waste all the valuable information she had learned re RA & coping" ~ makes sense! #hcsmca
elissa_malcohn
https://pbs.twimg.com/profile_images/2189266156/patchworkmajoritybuttonhand2_normal.jpg
@QuintePediatric It's tricky. Caree has better insight after years of complete anosognosia, but also has obsessions/delusions. #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
RT @hcsmca: T2: What factors prevent you from disclosing your health status via social media? #hcsmca
rohal
https://pbs.twimg.com/profile_images/589452426/rob_halkes1_normal.jpg
RT @cmaer: T2 Major fear of data being used against you by insurance companies, gov't etc (big data is always unencodable) #hcsmca
nursenerdy
https://pbs.twimg.com/profile_images/699596962601967618/aqB9nib1_normal.jpg
@aureliacotta @colleen_young #hcsmca I wondered about the same thing - I wonder if things like forums that enable anonymity are used more?
sarariggare
https://pbs.twimg.com/profile_images/783907944911998976/1Hr96TDC_normal.jpg
Actually also about knowing how your case is different from others with same diagnosis… Finding YOUR context #hcsmca
mindthecompany
https://pbs.twimg.com/profile_images/565554844782825475/h3YUqGbS_normal.png
@QuintePediatric Excellent question. He's read the blog since we started. Likes to go back now and then to see what we've done. #hcsmca
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@cmaer This comment leads well into T3. Coming soon.... #hcsmca
anetto
https://pbs.twimg.com/profile_images/745352997685858304/PZQteVmi_normal.jpg
T2 In a closed private and supportive group I disclose more day to day struggles and worries. #hcsmca
natricer
https://pbs.twimg.com/profile_images/842519517439901696/vsw6ffng_normal.jpg
RT @nxtstop1: T2 Also was reading that Anette had mentioned "why waste all the valuable information she had learned re RA & coping" ~ makes sense! #hcsmca
pat_health
https://pbs.twimg.com/profile_images/797809136406822913/wOhH0YRt_normal.jpg
What to share raises whole issue of #stigma. Is it more acceptable to have cancer than alcoholism when sharing your health issues? #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
@anetto That is my fear! #hcsmca
popculture_px
https://pbs.twimg.com/profile_images/825422857333141504/aelRL9hE_normal.jpg
#hcsmca We've all read seen the stories where someone is punished at work for SoMe activity...free speech exists but there are consequences
colleen_young
https://pbs.twimg.com/profile_images/534118819749306368/pwv05PjT_normal.png
@NurseNerdy @aureliacotta Anonymity still has a place. #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
#hcsmca A2: I've heard reasons such as fear of discrimination later in life, stigma, wanting some element of privacy etc.
cicarca
https://pbs.twimg.com/profile_images/618551549762105344/y_3bkaEB_normal.jpg
RT @rohal: RT @seastarbatita: MT @eHealthMusings willingness to share depends on medical condition. .,.. #hcsmca
williampearl
https://pbs.twimg.com/profile_images/830045743884992513/dtq_mBgc_normal.jpg
T2: The option to share online fills a void for many ie loneliness, insecurity, lack of experience, support etc #hcsmca
quintepediatric
https://pbs.twimg.com/profile_images/2209071066/qp_logo_webavatar_rgb_200px_normal.jpg
@mindthecompany Love that he's already a part of it! #hcsmca
seastarbatita
https://pbs.twimg.com/profile_images/705533125237932032/ukbRerb-_normal.jpg
MT @williampearl T2: patients and caregivers hungry for info. Seeking solns & how to live w/ health challenge. Sharing becomes impt #hcsmca
colleen_young