Katherine K. Leon, @katherinekleon, & Laura Haywood-Cory, @ncscadsurvivor, joined us as the first guests of the health communication, health literacy and social sciences #hchlitss chat. They provided a "how-to" for patients who are interested in having more research done on "rare" disorders and on disorders that patients feel are not being fully addressed.
Below is a transcript of the event. Read from the bottom to the top.
rv_rikard Oh YES @kdhoffman2! Until next week!!! #hchlitss -9:02 PM Oct 27th, 2011
kdhoffman2 @katherinekleon & @ncscadsurvivor Thank you I have learned SO MUCH! #hchlitss -9:01 PM Oct 27th, 2011
kdhoffman2 Until next week? Am I right @rv_rickard? #hchlitss -9:00 PM Oct 27th, 2011
chemobrainfog @joltdude absolutely, obscure (ignored) cognitive issues, hence my name, i appreciate info #hchlitss -9:00 PM Oct 27th, 2011
kdhoffman2 RT @rv_rikard: Copy of this discussion will be made available on http://t.co/TSr5WeLB @kdhoffman2 and @rv_rikard #hchlitss -9:00 PM Oct 27th, 2011
katherinekleon Thrilled to be your guest. You made it easy and gratifying - thx! #hchlitss -8:59 PM Oct 27th, 2011
kdhoffman2 You sure have set the bar high! #hchlitss -8:59 PM Oct 27th, 2011
kdhoffman2 @katherinekleon & @ncscadsurvivor Thank you I have learned SO MUCH! #hchlitss -9:01 PM Oct 27th, 2011
kdhoffman2 Until next week? Am I right @rv_rickard? #hchlitss -9:00 PM Oct 27th, 2011
chemobrainfog @joltdude absolutely, obscure (ignored) cognitive issues, hence my name, i appreciate info #hchlitss -9:00 PM Oct 27th, 2011
kdhoffman2 RT @rv_rikard: Copy of this discussion will be made available on http://t.co/TSr5WeLB @kdhoffman2 and @rv_rikard #hchlitss -9:00 PM Oct 27th, 2011
katherinekleon Thrilled to be your guest. You made it easy and gratifying - thx! #hchlitss -8:59 PM Oct 27th, 2011
kdhoffman2 You sure have set the bar high! #hchlitss -8:59 PM Oct 27th, 2011
KathyKastner Thank you for the welcome :) and for co-host.@rv_rikard #hchlitss -8:59 PM Oct 27th, 2011
ncscadsurvivor What @katherinekleon said - always happy to talk w/ others. #hchlitss -8:59 PM Oct 27th, 2011
teaminspire Thx 2 @katherinekleon & @ncscadsurvivor & @kdhoffman2 for inaugural #hchlitss. You've set the bar high. -8:58 PM Oct 27th, 2011
joltdude I only mean obscure in that it takes that much more effort and determination to get someone to notice and reasearch your illness.. #hchlitss -8:58 PM Oct 27th, 2011
rv_rikard Copy of this discussion will be made available on http://t.co/eGh4ceKU @kdhoffman2 and @rv_rikard thank you for coming!! #hchlitss -8:58 PM Oct 27th, 2011
kdhoffman2 Well, here's another NC jperson #hchlitss -8:58 PM Oct 27th, 2011
kdhoffman2 thank you RV for co-hosting...and thank you @ncscadsurvivor and @katherinekleon for being wonderful first guests #hchlitss -8:58 PM Oct 27th, 2011
KathyKastner #hchlitss thank you all so much. Wonderful to learn from you. Kudos @kdhoffman2 ! -8:58 PM Oct 27th, 2011
KathyKastner #hchlitss thank you all so much. Wonderful to learn from you. Kudos @kdhoffman2 ! -8:58 PM Oct 27th, 2011
joltdude Mebby patients and empowered people can get the #fda out of its shell...#hchlitss -8:58 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper Neat! Always good to meet another NC person. :) #hchlitss -8:57 PM Oct 27th, 2011
katherinekleon Make that "has" ... Thank you @kdhoffman2, @rvrikard, and @ncscadsurvivor as always. Always willing to talk more, try to help #hchlitss -8:57 PM Oct 27th, 2011
FMDGirl @AfternoonNapper Thank you for telling me about this chat! Glad I did not miss it- TY SCAD girls you rock! #hchlitss -8:57 PM Oct 27th, 2011
chemobrainfog TY for sharing. "obscure med mysteries" .. yes, some ideas on how to put a lot of women like me in ONE place #hchlitss -8:57 PM Oct 27th, 2011
kdhoffman2 @joltdude so true #hchlitss -8:57 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor @rv_rikard FYI - I'm in NC too... on the tall end of the state. :) #hchlitss -8:56 PM Oct 27th, 2011
ncscadsurvivor Thank you for inviting us. I hope we've given some help to other pt groups who want to organize. #hchlitss -8:56 PM Oct 27th, 2011
FMDGirl @katherinekleon agree! :) #hchlitss -8:56 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper Neat! Always good to meet another NC person. :) #hchlitss -8:57 PM Oct 27th, 2011
katherinekleon Make that "has" ... Thank you @kdhoffman2, @rvrikard, and @ncscadsurvivor as always. Always willing to talk more, try to help #hchlitss -8:57 PM Oct 27th, 2011
FMDGirl @AfternoonNapper Thank you for telling me about this chat! Glad I did not miss it- TY SCAD girls you rock! #hchlitss -8:57 PM Oct 27th, 2011
chemobrainfog TY for sharing. "obscure med mysteries" .. yes, some ideas on how to put a lot of women like me in ONE place #hchlitss -8:57 PM Oct 27th, 2011
kdhoffman2 @joltdude so true #hchlitss -8:57 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor @rv_rikard FYI - I'm in NC too... on the tall end of the state. :) #hchlitss -8:56 PM Oct 27th, 2011
ncscadsurvivor Thank you for inviting us. I hope we've given some help to other pt groups who want to organize. #hchlitss -8:56 PM Oct 27th, 2011
FMDGirl @katherinekleon agree! :) #hchlitss -8:56 PM Oct 27th, 2011
KathyKastner RT @rv_rikard: I also want to thank @kdhoffman2 for leading the cause to 2 organize the 1st #hchlitss chat! #hchlitss -8:56 PM Oct 27th, 2011
kdhoffman2 What can we take away from this discussion? Any closing thoughts? #hchlitss -8:56 PM Oct 27th, 2011
joltdude But it shows that pts and people with enough drive and ambition, can get people working on even more obscure medical mysteries #hchlitss -8:56 PM Oct 27th, 2011
katherinekleon Who had red wine! I need a glass. This was wonderful. I hope it was helpful to you all. #hchlitss -8:55 PM Oct 27th, 2011
rv_rikard I also want to thank @kdhoffman2 for leading the cause to 2 organize the 1st #hchlitss chat! #hchlitss -8:55 PM Oct 27th, 2011
AfternoonNapper So wonderful to hear about your contributions! Thank you for sharing. #hchlitss -8:55 PM Oct 27th, 2011
joltdude Its one thing to read a PDF and hear about you.. Its another to see actual patients telling how it went down #hchlitss -8:55 PM Oct 27th, 2011
kdhoffman2 Yes, thank you so much for sharing all of this with us. #hchlitss -8:55 PM Oct 27th, 2011
rv_rikard We are nearing 5 min til 9pm. B4 we end many thanks to our guests @katherinekleon & @ncscadsurvivor for sharing this evening! #hchlitss -8:54 PM Oct 27th, 2011
rv_rikard We are nearing 5 min til 9pm. B4 we end many thanks to our guests @katherinekleon & @ncscadsurvivor for sharing this evening! #hchlitss -8:54 PM Oct 27th, 2011
katherinekleon Also important to not dilute online resource of patients. Keep centralized, like our WH/Inspire community #hchlitss -8:54 PM Oct 27th, 2011
katherinekleon Knew mass campaign wouldn't work. Needed org geared to women. Big institution. Research focus. Mayo Clinic/WH partnership KEY. #hchlitss -8:53 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 Interestingly, think I'm the only SCAD on patientslikeme; people seem to gravitate 2 different sites, depending on dx. #hchlitss -8:53 PM Oct 27th, 2011
kdhoffman2 @katherinekleon I think that you must have spent a lot of time in that planning to make this happen--determination #hchlitss -8:52 PM Oct 27th, 2011
ncscadsurvivor @katherinekleon Yes, research the researchers; find 1s who are interested in your condition & make them interested in you. #hchlitss -8:51 PM Oct 27th, 2011
FMDGirl Researchers/ doctors need to hear from multiple voices to buy in. One organization can't do it alone w/ #raredisease #hchlitss -8:51 PM Oct 27th, 2011
kdhoffman2 Maybe with EHR there will be more sharing by patients...I'm thinking of patientslikeme. #hchlitss -8:51 PM Oct 27th, 2011
katherinekleon Planning stage is important. Find organizations already connected or that would be good collaborators. #hchlitss -8:50 PM Oct 27th, 2011
FMDGirl @ncscadsurvivor thanks for clarifying that point! #hchlitss -8:49 PM Oct 27th, 2011
katherinekleon yes, over time. Your goal may align with org you don't know yet. Research potential orgs to understand how your goals might mesh. #hchlitss -8:49 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 They're starting; @EdBennett has good list of hospital participation in SM over the past few years. It's growing. #hchlitss -8:49 PM Oct 27th, 2011
kdhoffman2 or maybe I should be asking how can we get more Medical centers to be interested in this? #hchlitss -8:49 PM Oct 27th, 2011
katherinekleon yes, over time. Your goal may align with org you don't know yet. Research potential orgs to understand how your goals might mesh. #hchlitss -8:49 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 They're starting; @EdBennett has good list of hospital participation in SM over the past few years. It's growing. #hchlitss -8:49 PM Oct 27th, 2011
kdhoffman2 or maybe I should be asking how can we get more Medical centers to be interested in this? #hchlitss -8:49 PM Oct 27th, 2011
AfternoonNapper The National Cancer Institute is pretty adept with SoMe. I think they would be open to such a partnership. #hchlitss -8:49 PM Oct 27th, 2011
FMDGirl @kdhoffman2 I believe others will follow. Mayo is a leader and they always have been #hchlitss -8:48 PM Oct 27th, 2011
katherinekleon Advice = Think like consumer marketer. Product to sell. Researchers want diagnosed bodies to study. Total package! #hchlitss -8:48 PM Oct 27th, 2011
kdhoffman2 I wonder do you all think other research centers are going to be like Mayo, interested in social media? and research like this? #hchlitss -8:47 PM Oct 27th, 2011
FMDGirl @kdhoffman2 I believe others will follow. Mayo is a leader and they always have been #hchlitss -8:48 PM Oct 27th, 2011
katherinekleon Advice = Think like consumer marketer. Product to sell. Researchers want diagnosed bodies to study. Total package! #hchlitss -8:48 PM Oct 27th, 2011
kdhoffman2 I wonder do you all think other research centers are going to be like Mayo, interested in social media? and research like this? #hchlitss -8:47 PM Oct 27th, 2011
ncscadsurvivor WomenHeart def. brought all of the pieces together-Katherine, Dr. Hayes, chance to make the case 4 research in person. #hchlitss -8:47 PM Oct 27th, 2011
katherinekleon Q4 Yes gave edge. Participant data from WH online forum. Familiar to Dr. Hayes. Valid group to reach. Easy to promote Mayo/WH link #hchlitss -8:47 PM Oct 27th, 2011
FMDGirl @katherinekleon You said the KEY word! TRUST if the community does not trust it will not participate #FMDChat #hchlitss -8:46 PM Oct 27th, 2011
FMDGirl @ncscadsurvivor well said! #hchlitss -8:46 PM Oct 27th, 2011
katherinekleon Yes. Worked both ways. WH helped "sell" study to Mayo. Mayo helped sell the study to WH SCAD community. They had to trust to join. #hchlitss -8:45 PM Oct 27th, 2011
rv_rikard RT @kdhoffman2: Q4: Mayos event Women Hrt Symp. seems to have given you an edge being visible. Do you agree? Advice for others? #hchlitss -8:45 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper For the future. I'm fixed, not cured. But maybe my niece + nephew + their kids will never hear "We don't know." #hchlitss -8:45 PM Oct 27th, 2011
FMDGirl @katherinekleon Yes! Genetics- when we were at the mayo summit talked at length to @westr- what a great resource he is! #hchlitss -8:45 PM Oct 27th, 2011
KathyKastner Not necessarily: I feel more knowledgeable ;)RT @kdhoffman2: @KathyKastner Bad experiences would keep you from doing that again #hchlitss -8:44 PM Oct 27th, 2011
kdhoffman2 Q4: Mayo's event Women Hrt Symp. seems to have given you an edge being visible. Do you agree? Advice for others? #hchlitss -8:44 PM Oct 27th, 2011
ncscadsurvivor @katherinekleon @FMDGirl - metaphorically growing a pair, yes. Hard 2 talk back 2 person in white coat. #hchlitss -8:43 PM Oct 27th, 2011
katherinekleon @afternoonnapper - wanted to prove wasn't rare, could recur. Genetics? worried about kids. others on the msg board. They are loves #hchlitss -8:43 PM Oct 27th, 2011
kdhoffman2 @KathyKastner Bad experiences would keep you from doing that again #hchlitss -8:43 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 It is, sometimes. Esp. w/ some of the meds typically given to heart pts, whether r not we need em. BBs cause fatigue. #hchlitss -8:42 PM Oct 27th, 2011
katherinekleon @FMDGirl - that is key, speaking up whether doc likes it or not. he'll still take the copay no doubt! #hchlitss -8:42 PM Oct 27th, 2011
KathyKastner #hchlitss My clinical trial experience has made me more knowledgeable, should I ever participate in another. :) -8:42 PM Oct 27th, 2011
FMDGirl Sorry about the double tweet and typo! #hchlitss -8:42 PM Oct 27th, 2011
AfternoonNapper Was your motivation for the study finding a possible cure for yourselves or trying to help others in the future or both? #hchlitss -8:42 PM Oct 27th, 2011
FMDGirl I have found that people who can speak up will. We advocate for each other. + outcomes with community/ team approach #hchlitss -8:41 PM Oct 27th, 2011
FMDGirl I have found that people who can speak up will. We advocate for each other. + oucomes with community/ team approach #hchlitss -8:41 PM Oct 27th, 2011
kdhoffman2 Exhaustion must have been part of your journey, @katherinekleon & ncscadsurvivor #hchlitss -8:41 PM Oct 27th, 2011
KathyKastner Got shorter and shorter of breath. (in my AD = do not want to suffocate) RT @kdhoffman2: @kathykastner what happened? #hchlitss -8:41 PM Oct 27th, 2011
katherinekleon @FMDGirl, @ncscadsurvivor - SCAD girls sounds much better than ladies! #hchlitss -8:40 PM Oct 27th, 2011
kdhoffman2 @kathykastner what happened? #hchlitss -8:39 PM Oct 27th, 2011
teaminspire RT @ncscadsurvivor: @chemobrainfog Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We don't know" pushed us. #hchlitss -8:39 PM Oct 27th, 2011
katherinekleon The 60-70 were active SCAD screen names on the msg board; as anonymous screen names, totally their call to step up #hchlitss -8:39 PM Oct 27th, 2011
FMDGirl @kdhoffman2 yes- trying to do that now for our rare disease, not an easy task #hchlitss -8:39 PM Oct 27th, 2011
PinkRibbonBlues RT @kdhoffman2: @pinkribbonblues BC Mets, w/ caveat of being fatigued, ill, etc. Illness as barrier to disease research #hchlitss -8:39 PM Oct 27th, 2011
KathyKastner #hchlitss I had a scary clin trial experience. -8:39 PM Oct 27th, 2011
FMDGirl I have to say how grateful I am to the SCAD girls and mayo clinic for taking a step towards participatory medicine #mayosmr #hchlitss -8:38 PM Oct 27th, 2011
katherinekleon @FMDGirl - that is my hope! @afternoonnapper ... the IRB approved 12 cases, I got 25 women to agree, 18 followed thru. #hchlitss -8:38 PM Oct 27th, 2011
kdhoffman2 RT @AfternoonNapper: @katherinekleon Explain the 18 cases vs. 60-70 willing to be studied please. Whats the difference? #hchlitss -8:38 PM Oct 27th, 2011
kdhoffman2 It seems in order to sell this to the MD-researchers you have to think "I'm going to make this as easy as possible for them" #hchlitss -8:38 PM Oct 27th, 2011
ncscadsurvivor Barriers: if organized online, people w/o Internet are excluded. #hchlitss -8:38 PM Oct 27th, 2011
KathyKastner #hchlitss My clinical trial experience has made me more knowledgeable, should I ever participate in another. :) -8:42 PM Oct 27th, 2011
FMDGirl Sorry about the double tweet and typo! #hchlitss -8:42 PM Oct 27th, 2011
AfternoonNapper Was your motivation for the study finding a possible cure for yourselves or trying to help others in the future or both? #hchlitss -8:42 PM Oct 27th, 2011
FMDGirl I have found that people who can speak up will. We advocate for each other. + outcomes with community/ team approach #hchlitss -8:41 PM Oct 27th, 2011
FMDGirl I have found that people who can speak up will. We advocate for each other. + oucomes with community/ team approach #hchlitss -8:41 PM Oct 27th, 2011
kdhoffman2 Exhaustion must have been part of your journey, @katherinekleon & ncscadsurvivor #hchlitss -8:41 PM Oct 27th, 2011
KathyKastner Got shorter and shorter of breath. (in my AD = do not want to suffocate) RT @kdhoffman2: @kathykastner what happened? #hchlitss -8:41 PM Oct 27th, 2011
katherinekleon @FMDGirl, @ncscadsurvivor - SCAD girls sounds much better than ladies! #hchlitss -8:40 PM Oct 27th, 2011
kdhoffman2 @kathykastner what happened? #hchlitss -8:39 PM Oct 27th, 2011
teaminspire RT @ncscadsurvivor: @chemobrainfog Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We don't know" pushed us. #hchlitss -8:39 PM Oct 27th, 2011
katherinekleon The 60-70 were active SCAD screen names on the msg board; as anonymous screen names, totally their call to step up #hchlitss -8:39 PM Oct 27th, 2011
FMDGirl @kdhoffman2 yes- trying to do that now for our rare disease, not an easy task #hchlitss -8:39 PM Oct 27th, 2011
PinkRibbonBlues RT @kdhoffman2: @pinkribbonblues BC Mets, w/ caveat of being fatigued, ill, etc. Illness as barrier to disease research #hchlitss -8:39 PM Oct 27th, 2011
KathyKastner #hchlitss I had a scary clin trial experience. -8:39 PM Oct 27th, 2011
FMDGirl I have to say how grateful I am to the SCAD girls and mayo clinic for taking a step towards participatory medicine #mayosmr #hchlitss -8:38 PM Oct 27th, 2011
katherinekleon @FMDGirl - that is my hope! @afternoonnapper ... the IRB approved 12 cases, I got 25 women to agree, 18 followed thru. #hchlitss -8:38 PM Oct 27th, 2011
kdhoffman2 RT @AfternoonNapper: @katherinekleon Explain the 18 cases vs. 60-70 willing to be studied please. Whats the difference? #hchlitss -8:38 PM Oct 27th, 2011
kdhoffman2 It seems in order to sell this to the MD-researchers you have to think "I'm going to make this as easy as possible for them" #hchlitss -8:38 PM Oct 27th, 2011
ncscadsurvivor Barriers: if organized online, people w/o Internet are excluded. #hchlitss -8:38 PM Oct 27th, 2011
katherinekleon other benefits include greater involvement. #hchlitss -8:37 PM Oct 27th, 2011
AfternoonNapper @katherinekleon Explain the 18 cases vs. 60-70 willing to be studied please. What's the difference? #hchlitss -8:37 PM Oct 27th, 2011
FMDGirl @katherinekleon That is really good though- just think about how many you will help now! Plus you have impacted FMD! #hchlitss -8:37 PM Oct 27th, 2011
ncscadsurvivor @KathyKastner Welcome! I have, for Plavix non-responders - turns out I'm normal, so it was short participation. #hchlitss -8:37 PM Oct 27th, 2011
rv_rikard RT @kdhoffman2: Q3: What are the potential benefits of patient initiated research? What are barriers? #hchlitss -8:36 PM Oct 27th, 2011
kdhoffman2 Welcome @KathyKastner and @Pinkribbonblues #hchlitss -8:36 PM Oct 27th, 2011
PinkRibbonBlues RT @katherinekleon: Self interest in advancing research. partnering with researchers #hchlitss -8:36 PM Oct 27th, 2011
FMDGirl MT Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We dont know" pushed us. #hchlitss -8:36 PM Oct 27th, 2011
kdhoffman2 @pinkribbonblues I think the women who have metastatic breast cancer might be interested in this doing pt-initiated research #hchlitss -8:36 PM Oct 27th, 2011
rv_rikard Welcome @KathyKastner #hchlitss -8:36 PM Oct 27th, 2011
katherinekleon Barriers, if rare disease, how to get valid pool of participants. For pilot of 12, I promised Dr. Hayes 25, delivered 18 cases. #hchlitss -8:36 PM Oct 27th, 2011
ncscadsurvivor @chemobrainfog Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We don't know" pushed us. #hchlitss -8:35 PM Oct 27th, 2011
KathyKastner #hchlitss Sry to jump in late. Health blogger, pt ed vid producer and.. clinical trial participant. Anyone else particiapted? -8:35 PM Oct 27th, 2011
PinkRibbonBlues RT @ncscadsurvivor: @AfternoonNapper Could be a lot for 1 person. Some folks just arent in a mental space of being researched #hchlitss -8:35 PM Oct 27th, 2011
katherinekleon @chemobrainfog - that's what kept me going! lots of poor treatment along the way. determined to make it right for others. #hchlitss -8:35 PM Oct 27th, 2011
FMDGirl RT @katherinekleon: Self interest in advancing research. partnering with researchers Agree #hchlitss -8:35 PM Oct 27th, 2011
FMDGirl Q3- barriers - hmmmm none! Seriously, I see it in FMD not enough being done- not enough pt input #hchlitss -8:34 PM Oct 27th, 2011
ncscadsurvivor So we walk a line btwn making sure every1 is aware of studies, w/o being pushy about them. I hope. #hchlitss -8:34 PM Oct 27th, 2011
katherinekleon Self interest in advancing research. partnering with researchers #hchlitss -8:34 PM Oct 27th, 2011
chemobrainfog Q3 have to believe pt knows their own body best, too many pt-s feel "dismissed" by docs #hchlitss -8:34 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor LOL - that's only half of it. :) #hchlitss -8:34 PM Oct 27th, 2011
kdhoffman2 @katherinekleon having that consent and bodies must have made a huge
AfternoonNapper @katherinekleon Explain the 18 cases vs. 60-70 willing to be studied please. What's the difference? #hchlitss -8:37 PM Oct 27th, 2011
FMDGirl @katherinekleon That is really good though- just think about how many you will help now! Plus you have impacted FMD! #hchlitss -8:37 PM Oct 27th, 2011
ncscadsurvivor @KathyKastner Welcome! I have, for Plavix non-responders - turns out I'm normal, so it was short participation. #hchlitss -8:37 PM Oct 27th, 2011
rv_rikard RT @kdhoffman2: Q3: What are the potential benefits of patient initiated research? What are barriers? #hchlitss -8:36 PM Oct 27th, 2011
kdhoffman2 Welcome @KathyKastner and @Pinkribbonblues #hchlitss -8:36 PM Oct 27th, 2011
PinkRibbonBlues RT @katherinekleon: Self interest in advancing research. partnering with researchers #hchlitss -8:36 PM Oct 27th, 2011
FMDGirl MT Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We dont know" pushed us. #hchlitss -8:36 PM Oct 27th, 2011
kdhoffman2 @pinkribbonblues I think the women who have metastatic breast cancer might be interested in this doing pt-initiated research #hchlitss -8:36 PM Oct 27th, 2011
rv_rikard Welcome @KathyKastner #hchlitss -8:36 PM Oct 27th, 2011
katherinekleon Barriers, if rare disease, how to get valid pool of participants. For pilot of 12, I promised Dr. Hayes 25, delivered 18 cases. #hchlitss -8:36 PM Oct 27th, 2011
ncscadsurvivor @chemobrainfog Esp w/ a rare dx, patient often knows more than the doc, which can be discouraging. "We don't know" pushed us. #hchlitss -8:35 PM Oct 27th, 2011
KathyKastner #hchlitss Sry to jump in late. Health blogger, pt ed vid producer and.. clinical trial participant. Anyone else particiapted? -8:35 PM Oct 27th, 2011
PinkRibbonBlues RT @ncscadsurvivor: @AfternoonNapper Could be a lot for 1 person. Some folks just arent in a mental space of being researched #hchlitss -8:35 PM Oct 27th, 2011
katherinekleon @chemobrainfog - that's what kept me going! lots of poor treatment along the way. determined to make it right for others. #hchlitss -8:35 PM Oct 27th, 2011
FMDGirl RT @katherinekleon: Self interest in advancing research. partnering with researchers Agree #hchlitss -8:35 PM Oct 27th, 2011
FMDGirl Q3- barriers - hmmmm none! Seriously, I see it in FMD not enough being done- not enough pt input #hchlitss -8:34 PM Oct 27th, 2011
ncscadsurvivor So we walk a line btwn making sure every1 is aware of studies, w/o being pushy about them. I hope. #hchlitss -8:34 PM Oct 27th, 2011
katherinekleon Self interest in advancing research. partnering with researchers #hchlitss -8:34 PM Oct 27th, 2011
chemobrainfog Q3 have to believe pt knows their own body best, too many pt-s feel "dismissed" by docs #hchlitss -8:34 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor LOL - that's only half of it. :) #hchlitss -8:34 PM Oct 27th, 2011
kdhoffman2 @katherinekleon having that consent and bodies must have made a huge
ncscadsurvivor @AfternoonNapper yowza, that's a lot for 1 person. Some folks just aren't in a mental space 2 go 2 next level, of being researched #hchlitss -8:33 PM Oct 27th, 2011
AfternoonNapper @FMDGirl Hi! #hchlitss -8:33 PM Oct 27th, 2011
FMDGirl Benefits- input from a variety of sources #hchlitss -8:32 PM Oct 27th, 2011
katherinekleon Benefits = bodies to study. Self identified, willing and eager. No two-year start up just to get consent. #hchlitss -8:32 PM Oct 27th, 2011
katherinekleon @FMDGirl - back atcha! #hchlitss -8:32 PM Oct 27th, 2011
FMDGirl Q3- research should be pt driven, we are the ones who are experiencing the disease #hchlitss -8:32 PM Oct 27th, 2011
ncscadsurvivor @FMDGirl Glad you're here! Welcome! #hchlitss -8:32 PM Oct 27th, 2011
rv_rikard RT @kdhoffman2: Q3: What are the potential benefits of patient initiated research? What are barriers #hchlitss -8:32 PM Oct 27th, 2011
rv_rikard Welcome @FMDGirl #hchlitss -8:32 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor Had my own share of issues inc. gastric rupture, stroke and triple bypass. Dx of intimal fibromuscular dysplasia. #hchlitss -8:31 PM Oct 27th, 2011
FMDGirl Hi! Just joining - Kari love the SCAD girls :) #hchlitss -8:31 PM Oct 27th, 2011
kdhoffman2 Q3: What are the potential benefits of patient initiated research? What are barriers #hchlitss -8:31 PM Oct 27th, 2011
katherinekleon Marketed to the right org. Social media angle helped our cause. Easy access to patient pool sealed the deal. #hchlitss -8:30 PM Oct 27th, 2011
katherinekleon another + for us, Dr. Sharonne Hayes the "right" cardiologist. Interested, open, compassionate. Mayo already social media atuned. #hchlitss -8:30 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper having a AMI + SCAD is pretty traumatic, we're told how rare it is + lucky to survive. Some still too traumatized #hchlitss -8:29 PM Oct 27th, 2011
katherinekleon at first the pilot was for 12 ... we hope (and think they are) all participating from the WH message board #hchlitss -8:29 PM Oct 27th, 2011
AfternoonNapper Why wouldn't every patient want to be studied? #hchlitss -8:28 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 Yes, the fact that K could point to a group of 60-70 patients gave doc a ready-made database. #hchlitss -8:27 PM Oct 27th, 2011
katherinekleon @kdhoffman2, yes and researchers want diagnosed bodies to study. Total package! #hchlitss -8:27 PM Oct 27th, 2011
kdhoffman2 @ncscadsurvivor having the list of names was important? #hchlitss -8:26 PM Oct 27th, 2011
katherinekleon another + for us, Dr. Sharonne Hayes the "right" cardiologist. Interested, open, compassionate. Mayo already social media atuned. #hchlitss -8:30 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper having a AMI + SCAD is pretty traumatic, we're told how rare it is + lucky to survive. Some still too traumatized #hchlitss -8:29 PM Oct 27th, 2011
katherinekleon at first the pilot was for 12 ... we hope (and think they are) all participating from the WH message board #hchlitss -8:29 PM Oct 27th, 2011
AfternoonNapper Why wouldn't every patient want to be studied? #hchlitss -8:28 PM Oct 27th, 2011
ncscadsurvivor @kdhoffman2 Yes, the fact that K could point to a group of 60-70 patients gave doc a ready-made database. #hchlitss -8:27 PM Oct 27th, 2011
katherinekleon @kdhoffman2, yes and researchers want diagnosed bodies to study. Total package! #hchlitss -8:27 PM Oct 27th, 2011
kdhoffman2 @ncscadsurvivor having the list of names was important? #hchlitss -8:26 PM Oct 27th, 2011
IIIGifts compelling methodology, especially for rare dz; pt recruitment already done, overcome some of the lack of funding issues #hchlitss -8:26 PM Oct 27th, 2011
katherinekleon Mass campaign wouldn't work. Needed org geared to women. Big institution. Research focus. Mayo Clinic/WomenHeart partnership KEY. #hchlitss -8:24 PM Oct 27th, 2011
kdhoffman2 patients collecting the data aren't hindered by HIPAA or IRB regs. #hchlitss -8:24 PM Oct 27th, 2011
ncscadsurvivor K had a list of patients ready and willing to be studied when we went to talk to Dr. Hayes @ Mayo. #hchlitss -8:24 PM Oct 27th, 2011
kdhoffman2 Maybe getting pt-prioritized research agenda 2 potential busy clinician- investigators will convince them 2 commit 2 new research #hchlitss -8:23 PM Oct 27th, 2011
katherinekleon Mass campaign wouldn't work. Needed org geared to women. Big institution. Research focus. Mayo Clinic/WomenHeart partnership KEY. #hchlitss -8:24 PM Oct 27th, 2011
kdhoffman2 patients collecting the data aren't hindered by HIPAA or IRB regs. #hchlitss -8:24 PM Oct 27th, 2011
ncscadsurvivor K had a list of patients ready and willing to be studied when we went to talk to Dr. Hayes @ Mayo. #hchlitss -8:24 PM Oct 27th, 2011
kdhoffman2 Maybe getting pt-prioritized research agenda 2 potential busy clinician- investigators will convince them 2 commit 2 new research #hchlitss -8:23 PM Oct 27th, 2011
katherinekleon Not just "we want to be researched." Why? Why you? How can you help researcher? Digging deep leads to ways to get job done. #hchlitss -8:22 PM Oct 27th, 2011
ncscadsurvivor @IIIGifts We're a trusting bunch; w/ a rare dx, we tend to doubt someone would join the online comm just to troll us. #hchlitss -8:22 PM Oct 27th, 2011
katherinekleon Q2 Research yourself, research your objective, research target audience. Identify why you're the "one to buy." What is your "hook" #hchlitss -8:22 PM Oct 27th, 2011
rv_rikard @kdhoffman2 -- whopps! Sorry for jumping the gun.... #hchlitss -8:21 PM Oct 27th, 2011
kdhoffman2 oops, sorry rv #hchlitss -8:21 PM Oct 27th, 2011
kdhoffman2 Q2: What are your recommendations for others who are interested in getting attention? #hchlitss -8:21 PM Oct 27th, 2011
katherinekleon @IIIGifts yes, to clarify. All screen names used. When individual submitted to Mayo, then they used actual name and contact info #hchlitss -8:20 PM Oct 27th, 2011
ncscadsurvivor @chemobrainfog Noone ever expressed any. Msgboard lets you choose to post public, members only or just you. #hchlitss -8:20 PM Oct 27th, 2011
rv_rikard Q2: What are your recommendations for others who are interested in getting attention? #hchlitss -8:20 PM Oct 27th, 2011
katherinekleon All was done through screen names; no identification whatsoever. Only at time of pilot study did privacy become issue #hchlitss -8:19 PM Oct 27th, 2011
IIIGifts Re: trust how do pt ID in message board community true names and faces or anonymous? #hchlitss -8:19 PM Oct 27th, 2011
ncscadsurvivor Don't forget the pregnancy/childbirth ones; I think that's the biggest group, maybe. #hchlitss -8:19 PM Oct 27th, 2011
kdhoffman2 @katherinekleon Pts forming research networks don't have to deal w/regulations like HIPPA & IRB. Clinical investigators R limited #hchlitss -8:19 PM Oct 27th, 2011
katherinekleon @ncscadsurvivor yes, others were connective tissue disorders, Ehlers Danlos, later FMD #hchlitss -8:18 PM Oct 27th, 2011
chemobrainfog any members concerned about privacy of their information? #hchlitss -8:18 PM Oct 27th, 2011
katherinekleon Data evolved over time. "Perfect" opportunity challenging. Virtual nature required unique partner. Trust. Believability #hchlitss -8:17 PM Oct 27th, 2011
kdhoffman2 Sophisticated & specific pt-initiated research questions--clear research allows researchers to visualize success #hchlitss -8:17 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper lots of us had events right around our periods--either had just started, or started w/in a day or 2 of our SCADs #hchlitss -8:17 PM Oct 27th, 2011
katherinekleon there were trends that I pulled out for the proposal to Dr. Hayes. At the time, it was all informal on the msg board #hchlitss -8:16 PM Oct 27th, 2011
kdhoffman2 @katherinekleon Pts forming research networks don't have to deal w/regulations like HIPPA & IRB. Clinical investigators R limited #hchlitss -8:19 PM Oct 27th, 2011
katherinekleon @ncscadsurvivor yes, others were connective tissue disorders, Ehlers Danlos, later FMD #hchlitss -8:18 PM Oct 27th, 2011
chemobrainfog any members concerned about privacy of their information? #hchlitss -8:18 PM Oct 27th, 2011
katherinekleon Data evolved over time. "Perfect" opportunity challenging. Virtual nature required unique partner. Trust. Believability #hchlitss -8:17 PM Oct 27th, 2011
kdhoffman2 Sophisticated & specific pt-initiated research questions--clear research allows researchers to visualize success #hchlitss -8:17 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper lots of us had events right around our periods--either had just started, or started w/in a day or 2 of our SCADs #hchlitss -8:17 PM Oct 27th, 2011
katherinekleon there were trends that I pulled out for the proposal to Dr. Hayes. At the time, it was all informal on the msg board #hchlitss -8:16 PM Oct 27th, 2011
ncscadsurvivor We all told our stories; K logged our symptoms,treatments, what kind of SCAD (preg-related, connective tissue dx, no cause). #hchlitss -8:15 PM Oct 27th, 2011
katherinekleon each woman who found the msg board added new perspective; enhanced research goals/agenda over time #hchlitss -8:15 PM Oct 27th, 2011
kdhoffman2 MT@katherinekleon kept the data including treatment received, individual concerns #hchlitss -8:15 PM Oct 27th, 2011
AfternoonNapper Did you as patients/survivors immediately notice any patterns in the data? #hchlitss -8:14 PM Oct 27th, 2011
chemobrainfog ty for clarifying. #hchlitss -8:14 PM Oct 27th, 2011
kdhoffman2 MT @katherinekleon: Katherine kept the data. Age at time of SCAD, event (pregnancy/cause unknown), artery involved, #hchlitss -8:14 PM Oct 27th, 2011
katherinekleon @chemobrainfog it was on the WomenHeart online community via Inspire. our conversations were the raw data #hchlitss -8:13 PM Oct 27th, 2011
ncscadsurvivor No, we don't have a google group: Google's search engine pulls up public discussions from the message board. #hchlitss -8:13 PM Oct 27th, 2011
katherinekleon Dig for details. Women great with posting own surveys. Own ideas, SCAD theories. Researched ourselves through online community. #hchlitss -8:12 PM Oct 27th, 2011
kdhoffman2 @ncscadsurvivor That is an important piece of information I didn't know #hchlitss -8:12 PM Oct 27th, 2011
chemobrainfog You set up an open google group? #hchlitss -8:12 PM Oct 27th, 2011
katherinekleon I did. Age at time of SCAD, event (pregnancy/cause unknown), artery involved, treatment received, individual concerns #hchlitss -8:12 PM Oct 27th, 2011
ncscadsurvivor Q1: Google archives our messages from the Inspire board, so that's how I found the group, & Katherine, after my own AMI & SCAD. #hchlitss -8:11 PM Oct 27th, 2011
AfternoonNapper @katherinekleon Who kept this database? Patients/you? #hchlitss -8:11 PM Oct 27th, 2011
kdhoffman2 what kind of data? #hchlitss -8:11 PM Oct 27th, 2011
katherinekleon Laura can tell more about keeping us growing #hchlitss -8:10 PM Oct 27th, 2011
katherinekleon Slowly built "database" with each conversation. Keeping threads going key to attracting new SCAD survivors to WH/Inspire. #hchlitss -8:10 PM Oct 27th, 2011
katherinekleon Three grew to 86 by fall of 2009. Finding each other around globe one obstacle for SCAD as rare disease.Took time. #hchlitss -8:09 PM Oct 27th, 2011
IIIGifts Hi every one, I'm Alisa Hughley patient advocate, ePatient and sister of a deceased organ donor. Happy to be here #hchlitss -8:09 PM Oct 27th, 2011
katherinekleon Met fellow survivors on WomenHeart online community, hosted by Inspire. My case, over six years of chatting and sharing #hchlitss -8:09 PM Oct 27th, 2011
ncscadsurvivor Q1: That's Katherine's specialty; I came in at the end so she can go first. #hchlitss -8:09 PM Oct 27th, 2011
katherinekleon thanks! same @AfternoonNapper (love your profile pic btw) #hchlitss -8:08 PM Oct 27th, 2011
katherinekleon Met fellow survivors on WomenHeart online community, hosted by Inspire. My case, over six years of chatting and sharing #hchlitss -8:09 PM Oct 27th, 2011
ncscadsurvivor Q1: That's Katherine's specialty; I came in at the end so she can go first. #hchlitss -8:09 PM Oct 27th, 2011
katherinekleon thanks! same @AfternoonNapper (love your profile pic btw) #hchlitss -8:08 PM Oct 27th, 2011
kdhoffman2 Q1:Many in social network health advocacy would like to know specifics of the research you provided Mayo..step by step to success #hchlitss -8:08 PM Oct 27th, 2011
kdhoffman2 there is so much to cover that we are going to plunge into this! #hchlitss -8:08 PM Oct 27th, 2011
nursefriendly @rv_rikard Gotcha, will hold off on the retweets, usually do so liberally #hchlitss -8:07 PM Oct 27th, 2011
jamierauscher Hi everyone, I'm a health com professional based in Boston #hchlitss -8:07 PM Oct 27th, 2011
jamierauscher Hi everyone, I'm a health com professional based in Boston #hchlitss -8:07 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor @katherinekleon So awesome to "meet" you both! #hchlitss -8:07 PM Oct 27th, 2011
nursefriendly We meet again :) RT @just_planted: Hi everyone! I'm Jennifer from Virginia.Currently a #nurse and a #student in Radiation Oncology #hchlitss -8:06 PM Oct 27th, 2011
kdhoffman2 Welcome @just_planted #hchlitss -8:06 PM Oct 27th, 2011
rv_rikard and, 3) we ask everyone to RT as little as possible to keep the discussion focused :) #hchlitss -8:06 PM Oct 27th, 2011
katherinekleon nice to meet everyone. this is exciting. #hchlitss -8:06 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper Yes, and @katherinekleon is the other. #hchlitss -8:06 PM Oct 27th, 2011
nursefriendly We meet again :) RT @just_planted: Hi everyone! I'm Jennifer from Virginia.Currently a #nurse and a #student in Radiation Oncology #hchlitss -8:06 PM Oct 27th, 2011
kdhoffman2 Welcome @just_planted #hchlitss -8:06 PM Oct 27th, 2011
rv_rikard and, 3) we ask everyone to RT as little as possible to keep the discussion focused :) #hchlitss -8:06 PM Oct 27th, 2011
katherinekleon nice to meet everyone. this is exciting. #hchlitss -8:06 PM Oct 27th, 2011
ncscadsurvivor @AfternoonNapper Yes, and @katherinekleon is the other. #hchlitss -8:06 PM Oct 27th, 2011
rv_rikard 2) a copy of the discussion will be made available on http://t.co/6sK9g94Z #hchlitss -8:05 PM Oct 27th, 2011
just_planted Hi everyone! I'm Jennifer from Virginia. Currently a #nurse and a #student in Radiation Oncology #hchlitss -8:05 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor Are you one of the Mayo SCAD participants? #hchlitss -8:05 PM Oct 27th, 2011
just_planted Hi everyone! I'm Jennifer from Virginia. Currently a #nurse and a #student in Radiation Oncology #hchlitss -8:05 PM Oct 27th, 2011
AfternoonNapper @ncscadsurvivor Are you one of the Mayo SCAD participants? #hchlitss -8:05 PM Oct 27th, 2011
rv_rikard 1) @kdhoffman2 and @rv_rikard will RT discussion questions, #hchlitss -8:05 PM Oct 27th, 2011
kdhoffman2 Thx for coming @chemobrainfog @AfternoonNapper #hchlitss -8:05 PM Oct 27th, 2011
joltdude John.. IT guy, diabetic, patient advocate, and generally curious #hchlitss -8:05 PM Oct 27th, 2011
ncscadsurvivor Hi John! And everyone else, too! Great to be here. #hchlitss -8:04 PM Oct 27th, 2011
nursefriendly You caught my eye :) Thought I'd look a little closer. RT @kdhoffman2: Thanks for joining us @nursefriendly @CFigueroaMD #hchlitss -8:04 PM Oct 27th, 2011
chemobrainfog hi, annemarie here, breast cancer "survivor" the leader of my medical
AfternoonNapper Good evening to everyone! #hchlitss -8:04 PM Oct 27th, 2011
katherinekleon @teaminspire Hi john! a friendly logo, nice to see you. #hchlitss -8:04 PM Oct 27th, 2011
CFigueroaMD I'm an ID physician, interested in technology, fascinated with #SoMe #hchlitss -8:04 PM Oct 27th, 2011
kdhoffman2 Thx for joining us @teaminspire #hchlitss -8:03 PM Oct 27th, 2011
teaminspire Hi all, John Novack from http://t.co/FTXlz4AX, online patient support communities #hchlitss -8:03 PM Oct 27th, 2011
kdhoffman2 Thanks for joining us @nursefriendly @CFigueroaMD #hchlitss -8:03 PM Oct 27th, 2011
rv_rikard @kdhoffman2 and I have 3 requests for this evenings chat..... #hchlitss -8:02 PM Oct 27th, 2011
nursefriendly RT @kdhoffman2: We'll take about 5 mins. to introduce ourselves and then start with first question/topic. All comments are our own, not employers #hchlitss -8:02 PM Oct 27th, 2011
ncscadsurvivor Hi, I'm Laura, had a heart attack 2 + SCAD yrs ago w/ no risk factors. Found online support group, hooked up w/ @katherinekleon #hchlitss -8:02 PM Oct 27th, 2011
kdhoffman2 We'll take about 5 mins. to introduce ourselves and then start with first question/topic. All comments are our own, not employers #hchlitss -8:02 PM Oct 27th, 2011
nursefriendly RT @katherinekleon: Hello I'm Katherine Leon, Alexandria, VA. SCAD/bypass survivor. Started ball rolling on SM patient-initiated research at Mayo. #hchlitss -8:02 PM Oct 27th, 2011
nursefriendly RT @katherinekleon: Hello I'm Katherine Leon, Alexandria, VA. SCAD/bypass survivor. Started ball rolling on SM patient-initiated research at Mayo. #hchlitss -8:02 PM Oct 27th, 2011
nursefriendly Hello Everyone, Andrew Lopez, RN from #newjersey :) #nurse #entrepreneur #parent #webmaster #epatient #hchlitss #hchlitss -8:01 PM Oct 27th, 2011
CFigueroaMD Good evening! #hchlitss -8:01 PM Oct 27th, 2011
kdhoffman2 Good evening everyone! #hchlitss -8:01 PM Oct 27th, 2011
katherinekleon Hello I'm Katherine Leon, Alexandria, VA. SCAD/bypass survivor. Started ball rolling on SM patient-initiated research at Mayo. #hchlitss -8:00 PM Oct 27th, 2011
rv_rikard Good evening to all! #hchlitss -8:00 PM Oct 27th, 2011
nursefriendly RT @kdhoffman2: Welcome to 1st health communication health literacy & social sciences #hchlitss chat.@Katherinekleon and @ncscadsurvivor guests #hchlitss -8:00 PM Oct 27th, 2011
teaminspire RT @colleen_young: #hchlitss chat starting in minutes. Join host @kdhoffman2 at 8pm ET -8:00 PM Oct 27th, 2011
kdhoffman2 Welcome to 1st health communication health literacy & social sciences #hchlitss chat.@Katherinekleon and @ncscadsurvivor guests #hchlitss -8:00 PM Oct 27th, 2011
