#LCSM Transcript

Healthcare social media transcript of the #LCSM hashtag.
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See #LCSM Influencers/Analytics.

ProfileTweet
Danielle Pardue @Actorielle
RT @JackWestMD: Just 1-2 minutes until we start #LCSM chat! Please join us for what should be vibrant discussion on evolving role of pt online groups.
H. Jack West, MD @JackWestMD
Hi folks! Welcome to #LCSM chat. Let's start with introductions. I'm a med onc in Seattle w/focus on LC & 1 of #LCSM co-founders.
Mara Antonoff, MD, FACS @maraantonoff
RT @lcsmchat: #LCSM Chat Thurs 3/22 8pm ET, 5pm PT: #LCSM Chat Thurs 3/22 8pm ET, 5pm PT: Slicing the Pie–How Can Lung Cancer Patient Groups, Clinicians & Researchers Best Work Together? More here: https://t.co/qusjNySmvX Join us! @Notmadscientist @1111linno @geekbabe @drainpipe @peggyddennis @PatientPower @teaminspire @CancerGeek https://t.co/Oedo7oGz07
#LCSM Chat @lcsmchat
RT @JackWestMD: Hi folks! Welcome to #LCSM chat. Let's start with introductions. I'm a med onc in Seattle w/focus on LC & 1 of #LCSM co-founders.
Brendon Stiles @BrendonStilesMD
Looking forward to a great chat! (Although I am atairport so will have spotty connection.). #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
Deana Hendrickson here from cold and rainy Los Angeles. #lcsm
Diane 🧚🏻‍♀️ @diianeee
Hello! I’m diane. Dx April 2014, currently in a clinical trial (abbv-399 with erlotinib) #lcsm
Danielle Pardue @Actorielle
Hello, my friends! Danielle here. Full-time #caregiver for Stage 4 mama. Western NC. This is a crucial topic and I'm grateful to tune in and learn. #LCSM
H. Jack West, MD @JackWestMD
(Actually, that should really be #LCSM CHAT co-founders -- I don't deserve credit for #LCSM community, which preceded my input.)
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@BrendonStilesMD Hi Brendon! #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@diianeee Hi Diane! #lcsm
Cori @coristarlit
Hi! Cori here. NSCLC ALK+ 2 year sur-thriver. #LCSM
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@JackWestMD No worries! #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@coristarlit Welcome! #lcsm
Janet Freeman-Daily @JFreemanDaily
Hello #LCSM tweeps! Janet here in temporarily sunny Seattle ... writer, science geek, lung cancer patient/activist http:/grayconnections.net
H. Jack West, MD @JackWestMD
Looking forward to input from many perspectives -- pts, caregivers, clinicians, researchers, & possibly some from pharma companies. #lcsm
Geri Massa @GeriGerim13
Hi, 👋How y’all doing? 😀 #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@GeriGerim13 Hey Geri! #lcsm
Brendon Stiles @BrendonStilesMD
Thoracic surgeon from NYC, but joining from West Coast today. Supporting patients and research. Chair of @Lung_Fund #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Looking forward to input from many perspectives -- pts, caregivers, clinicians, researchers, & possibly some from pharma companies. #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD You're forgiven ... It's tough to remember to add "Chat" after #LCSM all the time.
Inspire @teaminspire
Hello to the #LCSM chat, John Novack here from Inspire.
Janet Freeman-Daily @JFreemanDaily
@BrendonStilesMD @Lung_Fund Where on West Coast? Near Seattle? #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@teaminspire Good to see you! #lcsm
H. Jack West, MD @JackWestMD
@BrendonStilesMD safe travels -- I have a day off from travel. Hope your plans go smoothly/ #lcsm
Brendon Stiles @BrendonStilesMD
@LungCancerFaces Hi! Loving the West Coast start! #lcsm.
Upstage Lung Cancer @UpstageLungCanc
Good evening, friends! Performing arts-based #lungcancer awareness org and research-supporter. Always thrilled to be here! 💜 #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@UpstageLungCanc Welcome! #lcsm
Janet Freeman-Daily @JFreemanDaily
@teaminspire Hi John! #lcsm
Tim Kruser @TimothyKruserMD
Hello everyone. Radiation oncologist from Northwestern in Chicago. First tweet chat. Excited to participate! #lcsm
Brendon Stiles @BrendonStilesMD
@JFreemanDaily @Lung_Fund Vancouver! Pretty close. #lcsm
Flemming Rasmussen @fgrazz
Flemming fm Halifax dropping in #lcsm
H. Jack West, MD @JackWestMD
For those who are shy & don't want to speak up, we'd love for you to just say "#LCSM" so we know you're here. We won't call on you. #lcsm
Janet Freeman-Daily @JFreemanDaily
@TimothyKruserMD Welcome! We're a friendly bunch, as long as you feed us before the chat. ;) #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@TimothyKruserMD Welcome! #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@fgrazz Hey you! #lcsm
Heather McCullen @H_SalemOaks
Hi #LCSM. Checking in from Ann Arbor, MI. I work for @SalemOaks, our mission is to build bridges between patients and researchers primarily through education about the R & D process. I'm mostly here to listen to your perspectives. @JamieRoger8 & @K_SalemOaks might be around too.
Geri Massa @GeriGerim13
@TimothyKruserMD Hi 👋 #lcsm
Lung Cancer #1 cancer killer of women @VirginiaMByrne
Replying to @LungCancerFaces Hi from snowy New Jersey! #lcsm
Brendon Stiles @BrendonStilesMD
@TimothyKruserMD Awesome. Thanks for joining! #lcsm
Janet Freeman-Daily @JFreemanDaily
@BrendonStilesMD Ah! I know which conference you're at. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: For those who are shy & don't want to speak up, we'd love for you to just say "#LCSM" so we know you're here. We won't call on you. #lcsm
H. Jack West, MD @JackWestMD
Welcome! RT @TimothyKruserMD: Hello everyone. Radiation onc from Northwestern in Chicago. First tweet chat. Excited to participate! #lcsm
Peggy Dennis @peggyddennis
Hi! Peggy chiming in from Denver- NSCLC - 20 months since diagnosis - 2nd line chemo #lcsm
Danielle Pardue @Actorielle
RT @H_SalemOaks: Hi #LCSM. Checking in from Ann Arbor, MI. I work for @SalemOaks, our mission is to build bridges between patients and researchers primarily through education about the R & D process. I'm mostly here to listen to your perspectives. @JamieRoger8 & @K_SalemOaks might be around too.
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@H_SalemOaks @SalemOaks Welcome! #lcsm
Brendon Stiles @BrendonStilesMD
@H_SalemOaks @SalemOaks @JamieRoger8 @K_SalemOaks Thanks for joining! #lcsm
Janet Freeman-Daily @JFreemanDaily
@peggyddennis Hi Peggy! Sorry for the snowstorm Sunday--that was my fault, I flew in that day. Or so my sister says. #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@VirginiaMByrne Hi! I used to live in Cherry Hill #lcsm
H. Jack West, MD @JackWestMD
For those re-tweeting & making more than trivial edits in prior RT, please replace RT w/MT for "modified tweet". I sometimes forget... #lcsm
Geri Massa @GeriGerim13
How do I use the live chat ? I think I’ve been doing it wrong, lol #lcsm
Cori @coristarlit
Oh! And I’m on clinical trial X396 (Ensartinib) First line, 21 months. #LCSM https://t.co/k2WMwCZoW4
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@peggyddennis Hey Peggy! #lcsm
Tim Kruser @TimothyKruserMD
@JFreemanDaily @TimothyKruserMD I know you're friendly...you tossed me some nice easy ?'s during a Patient Power event in Chicago! #lcsm
Peggy Dennis @peggyddennis
All melted Janet! 70+ degrees today. Thanks for the moisture :) #lcsm
Joni Fowler, PharmD, BCPP @jfowlerpharmd
@LungCancerFaces Good evening! #lcsm 👋🏼
H. Jack West, MD @JackWestMD
OK, topic today is evolving role of online pt groups & many ways they can add value, accelerate research, etc. Topic 1 in just a min #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@GeriGerim13 Go to https://t.co/3LPtQs2zFu and sign in #lcsm
Brendon Stiles @BrendonStilesMD
@JFreemanDaily I was actually at the “Skiing at Whistler with family Spring Break conference”. It was a great one! #lcsm https://t.co/LASbB8TPR7
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@jfowlerpharmd Hi Joni! #lcsm
Lung Cancer #1 cancer killer of women @VirginiaMByrne
Replying @LungCancerFaces I’m just outside Summit. #lcsm https://t.co/JHmkEQBJPe
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Tim here. #LCSM
H. Jack West, MD @JackWestMD
When giving answers, it makes it easier to track Q&A combos by preceding your response w/T1, T2, etc. Thx. #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@RedGia Hey you! #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: OK, topic today is evolving role of online pt groups & many ways they can add value, accelerate research, etc. Topic 1 in just a min #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@TimAllenMDJD Hey Tim! #lcsm
Paolo Macri' M.D. @MacriPaolo
RT @IASLC: Join the conversation today with @lcsmchat to discuss how all members of the lung cancer community can best work together. #LCSM https://t.co/im75Urf4Pf
Brendon Stiles @BrendonStilesMD
@TimothyKruserMD @JFreemanDaily Just how she warms you up before the tough questions! #lcsm
Brendon Stiles @BrendonStilesMD
RT @JackWestMD: OK, topic today is evolving role of online pt groups & many ways they can add value, accelerate research, etc. Topic 1 in just a min #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD For some reason, I simply could NOT remember to add T1, T2 etc. before tweets in the last chat. It happens. #lcsm
Upstage Lung Cancer @UpstageLungCanc
RT @JackWestMD: OK, topic today is evolving role of online pt groups & many ways they can add value, accelerate research, etc. Topic 1 in just a min #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: For those re-tweeting & making more than trivial edits in prior RT, please replace RT w/MT for "modified tweet". I sometimes forget... #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: OK, topic today is evolving role of online pt groups & many ways they can add value, accelerate research, etc. Topic 1 in just a min #lcsm
H. Jack West, MD @JackWestMD
T1) What are most important benefits of online groups to pts & caregivers? Where should research & education rank among priorities? #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Howdy #lcsm https://t.co/t1tXw5JGT6
#LCSM Chat @lcsmchat
RT @JackWestMD: When giving answers, it makes it easier to track Q&A combos by preceding your response w/T1, T2, etc. Thx. #lcsm
Janet Freeman-Daily @JFreemanDaily
@TimothyKruserMD I remember! #LCSM
#LCSM Chat @lcsmchat
RT @JackWestMD: T1) What are most important benefits of online groups to pts & caregivers? Where should research & education rank among priorities? #lcsm
Deb Smith 🌻 @debsmithbeach
Hi, Deb from NH here, in Boston tonight after a long day at DFCI. Good news: scans were stable and I had a massage! 6 1/2 yrs post dx, stage 4, EGFR/T790, on Tagrisso for 4 1/2 yrs! #LCSM
Danielle Pardue @Actorielle
RT @JackWestMD: T1) What are most important benefits of online groups to pts & caregivers? Where should research & education rank among priorities? #lcsm
Janet Freeman-Daily @JFreemanDaily
@BrendonStilesMD I love skiing Whistler! Haven't done it for many years, but I've hiked there since. #LCSM
Upstage Lung Cancer @UpstageLungCanc
RT @JackWestMD: T1) What are most important benefits of online groups to pts & caregivers? Where should research & education rank among priorities? #lcsm
NCI Cancer Stats @NCICancerStats
Hispanic men and women have the lowest rates of #LungCancer. Find more info: https://t.co/xvdcAAVggN #LCSM https://t.co/NZR1qtmk43
#LCSM Chat @lcsmchat
Hi Michele! Go to https://t.co/REUOM3GZHV and sign in. It'll make things make things much easier for you #lcsm https://t.co/es0OqUWXLL
H. Jack West, MD @JackWestMD
Are most participants in pt online groups seeking support? med advice? should major goal be to collectively promote research? #lcsm
Brendon Stiles @BrendonStilesMD
T1. I have been amazed at how such networks have allowed patients to share experiences and support each other. #lcsm
lysa buonanno @lysabee
@TimothyKruserMD #lcsm Thanks for joining us
#LCSM Chat @lcsmchat
RT @lcsmchat: Hi Michele! Go to https://t.co/REUOM3GZHV and sign in. It'll make things make things much easier for you #lcsm https://t.co/es0OqUWXLL
Peggy Dennis @peggyddennis
T1 - support - treatment sharing - info gathering - shared experience #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Are most participants in pt online groups seeking support? med advice? should major goal be to collectively promote research? #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T1. I have been amazed at how such networks have allowed patients to share experiences and support each other. #lcsm
Brendon Stiles @BrendonStilesMD
T1. But I also think such forums should be an incredible engine for education and research. Particularly for patients without easy access to these. #lcsm
LungCancer.net @LungCancer_HU
Margot here from https://t.co/4ebZcoIISH joining a bit late :) #lcsm
SetuVoraMD ♥️ @setuvora
@JackWestMD Pulmonary CCM/sleep doc from CT here. #LCSM
Danielle Pardue @Actorielle
T1: I think if many of us thought back in time, we might say we stumbled into the online groups on a quest for research and education into the dx. Some are pleasantly surprised to also find support. Some of us stayed longer for the #advocacy. #LCSM
diseases_an @diseases_an
RT @LCAorg: Symptoms of #lungcancer can look a lot like symptoms of other common diseases, which is why it is so important to know what to look for+when to talk to your doctor if you or a loved one have a concern. Take control of your health and learn more. #LCSM >> https://t.co/XH5SuKKYCw
Diane 🧚🏻‍♀️ @diianeee
T1: I like having a place to ask questions. I’m happy to call the people I have met friends! #lcsm
Katie Brown @brownbeansprout
@JackWestMD In my 15 years I see majority are looking for information about dx and emotional and practical support #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: Are most participants in pt online groups seeking support? med advice? should major goal be to collectively promote research? #lcsm
Danielle Pardue @Actorielle
RT @BrendonStilesMD: T1. I have been amazed at how such networks have allowed patients to share experiences and support each other. #lcsm
H. Jack West, MD @JackWestMD
T1) IMO, pt supports group are esp valuable for narrow subgrps like those w/uncommon/rare molec markers. Bridge geography to connect. #lcsm
Danielle Pardue @Actorielle
RT @BrendonStilesMD: T1. But I also think such forums should be an incredible engine for education and research. Particularly for patients without easy access to these. #lcsm
lysa buonanno @lysabee
#lcsm T1 sharing research and supporting each other are most important to me.
Katie Brown @brownbeansprout
RT @diianeee: T1: T1: I like having a place to ask questions. I’m happy to call the people I have met friends! #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: @JackWestMD In my 15 years I see majority are looking for information about dx and emotional and practical support #lcsm
#LCSM Chat @lcsmchat
RT @peggyddennis: T1 - support - treatment sharing - info gathering - shared experience #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T1) IMO, pt supports group are esp valuable for narrow subgrps like those w/uncommon/rare molec markers. Bridge geography to connect. #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T1. But I also think such forums should be an incredible engine for education and research. Particularly for patients without easy access to these. #lcsm
Michele Bittikofer @MicheleBittiko1
#lcsm
Flemming Rasmussen @fgrazz
T1 - Lots of value to ask the questions we don't necessarily have the answers to. All perspectives help #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: T1: T1: I think if many of us thought back in time, we might say we stumbled into the online groups on a quest for research and education into the dx. Some are pleasantly surprised to also find support. Some of us stayed longer for the #advocacy. #LCSM
#LCSM Chat @lcsmchat
RT @diianeee: T1: T1: I like having a place to ask questions. I’m happy to call the people I have met friends! #lcsm
Janet Freeman-Daily @JFreemanDaily
T1) Patient/caregiver support, awareness/education, improve access to effective treatment/diagnosis, accelerate/fund research #lcsm
#LCSM Chat @lcsmchat
RT @brownbeansprout: @JackWestMD In my 15 years I see majority are looking for information about dx and emotional and practical support #lcsm
Cori @coristarlit
T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more settled in to diagnosis. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T1) IMO, pt supports group are esp valuable for narrow subgrps like those w/uncommon/rare molec markers. Bridge geography to connect. #lcsm
lysa buonanno @lysabee
#lcsm here from Nevada watching the Pack play in sweet 16
#LCSM Chat @lcsmchat
RT @lysabee: #lcsm T1 sharing research and supporting each other are most important to me.
H. Jack West, MD @JackWestMD
T1) @brownbeansprout -- practical support like how to manage side effects? What treatment is best? Who to see in their area? #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T1) Patient/caregiver support, awareness/education, improve access to effective treatment/diagnosis, accelerate/fund research #lcsm
Katie Brown @brownbeansprout
RT @coristarlit: T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more settled in to diagnosis. #lcsm
Danielle Pardue @Actorielle
RT @coristarlit: T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more settled in to diagnosis. #lcsm
H. Jack West, MD @JackWestMD
RT @diianeee: T1: T1: I like having a place to ask questions. I’m happy to call the people I have met friends! #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @coristarlit: T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more settled in to diagnosis. #lcsm
Tim Kruser @TimothyKruserMD
T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding specific trials #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JFreemanDaily: T1) Patient/caregiver support, awareness/education, improve access to effective treatment/diagnosis, accelerate/fund research #lcsm
Brendon Stiles @BrendonStilesMD
T1. I do think the personal connections and advocacy are what keep people coming back. But also love to see groups getting more involved with promoting trials and pushing for targeted research. #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JackWestMD: T1) IMO, pt supports group are esp valuable for narrow subgrps like those w/uncommon/rare molec markers. Bridge geography to connect. #lcsm
Danielle Pardue @Actorielle
RT @TimothyKruserMD: T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding specific trials #lcsm
H. Jack West, MD @JackWestMD
Welcome, @setuvora -- thx for joining. #lcsm
H. Jack West, MD @JackWestMD
RT @TimothyKruserMD: T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding specific trials #lcsm
Geri Massa @GeriGerim13
T1 :The online support groups are, I Believe .. The only ones walking in our shoes and understand each other #lcsm
Katie Brown @brownbeansprout
T1 also not limted to office hours- online communities are always open for peer support and information gathering #lcsm
Danielle Pardue @Actorielle
RT @BrendonStilesMD: T1. I do think the personal connections and advocacy are what keep people coming back. But also love to see groups getting more involved with promoting trials and pushing for targeted research. #lcsm
H. Jack West, MD @JackWestMD
RT @GeriGerim13: T1 :The online support groups are, I Believe .. The only ones walking in our shoes and understand each other #lcsm
lysa buonanno @lysabee
@LungCancer_HU Hi Margo #lcsm
Anita Figueras @scifiknitter
Anita from the @EGFRResisters here at last - better late than never! #LCSM
OncLive.com @OncLive
Dr. Wakelee of @StanfordCancer Discusses EGFR TKIs in Lung Cancer #lcsm https://t.co/dkenrS4TkX
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@MicheleBittiko1 I see you Michele! Welcome. #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD I'd venture that ALL people who join healthcare support groups are there for support, plus maybe other needs. #lcsm
#LCSM Chat @lcsmchat
RT @fgrazz: T1 - Lots of value to ask the questions we don't necessarily have the answers to. All perspectives help #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1) Patient/caregiver support, awareness/education, improve access to effective treatment/diagnosis, accelerate/fund research #lcsm
#LCSM Chat @lcsmchat
RT @coristarlit: T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more settled in to diagnosis. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T1) @brownbeansprout -- practical support like how to manage side effects? What treatment is best? Who to see in their area? #lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding specific trials #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T1. I do think the personal connections and advocacy are what keep people coming back. But also love to see groups getting more involved with promoting trials and pushing for targeted research. #lcsm
Michele Bittikofer @MicheleBittiko1
Hi all...new to group n twitter #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: T1 also not limted to office hours- online communities are always open for peer support and information gathering #lcsm
H. Jack West, MD @JackWestMD
We'll turn to T2 in another minute or so... #lcsm
#LCSM Chat @lcsmchat
RT @GeriGerim13: T1 :The online support groups are, I Believe .. The only ones walking in our shoes and understand each other #lcsm
#LCSM Chat @lcsmchat
RT @brownbeansprout: T1 also not limted to office hours- online communities are always open for peer support and information gathering #lcsm
Katie Brown @brownbeansprout
Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, second opinions, nutrition and side effect management #lcsm https://t.co/Zk8ulQB8gP
Brendon Stiles @BrendonStilesMD
@scifiknitter @EGFRResisters Hi! Hope you are well! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD I'd venture that ALL people who join healthcare support groups are there for support, plus maybe other needs. #lcsm
Janet Freeman-Daily @JFreemanDaily
@TimothyKruserMD Sourcing clinical trials for specific subgroups of patients is one of the best uses for online patient groups #lcsm
lysa buonanno @lysabee
@JackWestMD #lcsm T1 yes. It's great to be able to connect with others with same drivers
#LCSM Chat @lcsmchat
RT @brownbeansprout: Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, second opinions, nutrition and side effect management #lcsm https://t.co/Zk8ulQB8gP
Danielle Pardue @Actorielle
RT @brownbeansprout: Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, second opinions, nutrition and side effect management #lcsm https://t.co/Zk8ulQB8gP
Brendon Stiles @BrendonStilesMD
@MicheleBittiko1 Thanks for joining! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @TimothyKruserMD Sourcing clinical trials for specific subgroups of patients is one of the best uses for online patient groups #lcsm
#LCSM Chat @lcsmchat
RT @lysabee: @JackWestMD #lcsm T1 yes. It's great to be able to connect with others with same drivers
H. Jack West, MD @JackWestMD
T2) Is there a role for researchers or clinicians, in online patient-caregiver groups? What issues might arise? Risk of "encroaching"? #lcsm
Upstage Lung Cancer @UpstageLungCanc
RT @brownbeansprout: Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, second opinions, nutrition and side effect management #lcsm https://t.co/Zk8ulQB8gP
Danielle Pardue @Actorielle
RT @JFreemanDaily: @TimothyKruserMD Sourcing clinical trials for specific subgroups of patients is one of the best uses for online patient groups #lcsm
Tim Kruser @TimothyKruserMD
@JackWestMD I see I was typing something similar to your input..great minds... #lcsm
lysa buonanno @lysabee
@scifiknitter @EGFRResisters Hi anita. #lcsm
Anita Figueras @scifiknitter
RT @JFreemanDaily: @TimothyKruserMD Sourcing clinical trials for specific subgroups of patients is one of the best uses for online patient groups #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) Is there a role for researchers or clinicians, in online patient-caregiver groups? What issues might arise? Risk of "encroaching"? #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T2) Is there a role for researchers or clinicians, in online patient-caregiver groups? What issues might arise? Risk of "encroaching"? #lcsm
Upstage Lung Cancer @UpstageLungCanc
RT @JackWestMD: T2) Is there a role for researchers or clinicians, in online patient-caregiver groups? What issues might arise? Risk of "encroaching"? #lcsm
Brendon Stiles @BrendonStilesMD
@JFreemanDaily @TimothyKruserMD Totally agree. This will be invaluable for rapid accrual to trials which will ultimately benefit patients. Too many trials linger without enough numbers to learn how to move forward. #lcsm
Janet Freeman-Daily @JFreemanDaily
T1) We get all levels of engagement in online groups. Newer mbrs focus on own health, longer-term mbrs think about supporting research #lcsm
H. Jack West, MD @JackWestMD
T2) Would having clinicians/researchers involved in online pt/caregiver groups enrich or inhibit protected place? #lcsm
Flemming Rasmussen @fgrazz
@JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved #lcsm
Janet Freeman-Daily @JFreemanDaily
@TimothyKruserMD @JackWestMD Reinforcing a point is always welcome #lcsm
Jeffrey E Poehlmann @drainpipe
Jeffrey Poehlmann joining in a bit late. Stage 4 NSCLC diagnosed 2014 https://t.co/J9uice4dKC and contributor to https://t.co/zqRelf7VLo #lcsm
H. Jack West, MD @JackWestMD
RT @fgrazz: @JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved #lcsm
Nathan A. Pennell MD, PhD, FASCO @n8pennell
Hi, Nate Pennell here, oncologist in Cleveland, O-H-I-O. #lcsm
Danielle Pardue @Actorielle
T2 off the top of my head, it seems that researchers/clinicians serving as observers in pt/cg forums might be enlightened as to the practical/everyday/QOL-type concerns, and hopefully turn to more pt-centric practices bc of what they learn. #LCSM
Brendon Stiles @BrendonStilesMD
T2. OF COURSE! We need to learn from patients what their needs and expectations are. And sometimes we can provide help in turn. #lcsm
Danielle Pardue @Actorielle
RT @BrendonStilesMD: @JFreemanDaily @TimothyKruserMD Totally agree. This will be invaluable for rapid accrual to trials which will ultimately benefit patients. Too many trials linger without enough numbers to learn how to move forward. #lcsm
#LCSM Chat @lcsmchat
Remember to add #lcsm to your tweets so everyone can see them. Check out https://t.co/REUOM3GZHV and the hashtag gets added automatically https://t.co/x96iRu1RLf
Janet Freeman-Daily @JFreemanDaily
T2) difficult question--some topics patients prefer discussing with other patients. But sometimes expert input would be useful. #lcsm
H. Jack West, MD @JackWestMD
Hey, Nate -- thanks for joining! RT @n8pennell: Hi, Nate Pennell here, oncologist in Cleveland, O-H-I-O. #lcsm
Tim Kruser @TimothyKruserMD
T2. I think there's clearly a role...key for docs to know their role is to sympathize and inform...avoiding desire to defend other MDs #lcsm
Brendon Stiles @BrendonStilesMD
RT @fgrazz: @JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T1) We get all levels of engagement in online groups. Newer mbrs focus on own health, longer-term mbrs think about supporting research #lcsm
Katie Brown @brownbeansprout
Specific patient groups should not be encroached upon by researchers and marketers. #lcsm
Inspire @teaminspire
@JackWestMD T2) Our experience is that researchers & clinicians, however well-intentioned, can sometimes have a chilling effect on discussion in a peer group of patients/caregivers. A more standard "Ask the Expert" timed event can be more effective for all involved. #lcsm
Lung Cancer #1 cancer killer of women @VirginiaMByrne
@TimothyKruserMD @LungCancerFaces I joined ALK Positive looking for answers. I wasn’t satisfied with level of care under treating doc, who seemed to like lab rats more than patients. ALK Positive led me to Alice Shaw at MSG, who’s been a godsend. Stayed for advocacy. #lcsm https://t.co/RPjvaC5COQ
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: @JFreemanDaily @TimothyKruserMD Totally agree. This will be invaluable for rapid accrual to trials which will ultimately benefit patients. Too many trials linger without enough numbers to learn how to move forward. #lcsm
Heather McCullen @H_SalemOaks
T2) This is a question I stress about a lot (especially in focused chats like #LCSM)
Brendon Stiles @BrendonStilesMD
RT @lcsmchat: Remember to add #lcsm to your tweets so everyone can see them. Check out https://t.co/REUOM3GZHV and the hashtag gets added automatically https://t.co/x96iRu1RLf
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1) We get all levels of engagement in online groups. Newer mbrs focus on own health, longer-term mbrs think about supporting research #lcsm
Cori @coristarlit
T2) yes, but indirectly to help achieve group goals or answer overarching group questions. IMO Direct role would make the support group less “safe” to vent, voice concerns, etc. #LCSM
Janet Freeman-Daily @JFreemanDaily
T2) Colontown has researchers and doctors available in some discussion groups (like one focused on clinical trials) #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) Would having clinicians/researchers involved in online pt/caregiver groups enrich or inhibit protected place? #lcsm
Danielle Pardue @Actorielle
RT @fgrazz: @JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved #lcsm
Nathan A. Pennell MD, PhD, FASCO @n8pennell
T2: Would knowing your doc might be watching inhibit your search for support if you had questions about your care? #lcsm
#LCSM Chat @lcsmchat
RT @fgrazz: @JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved #lcsm
H. Jack West, MD @JackWestMD
Hence "lanes" MT @JFreemanDaily: T2) difficult Q-some topics pts prefer discussing w/other pts. But sometimes expert input useful. #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: T2 off the top of my head, it seems that researchers/clinicians serving as observers in pt/cg forums might be enlightened as to the practical/everyday/QOL-type concerns, and hopefully turn to more pt-centric practices bc of what they learn. #LCSM
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T2. OF COURSE! We need to learn from patients what their needs and expectations are. And sometimes we can provide help in turn. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) difficult question--some topics patients prefer discussing with other patients. But sometimes expert input would be useful. #lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: T2. I think there's clearly a role...key for docs to know their role is to sympathize and inform...avoiding desire to defend other MDs #lcsm
#LCSM Chat @lcsmchat
RT @teaminspire: @JackWestMD T2) Our experience is that researchers & clinicians, however well-intentioned, can sometimes have a chilling effect on discussion in a peer group of patients/caregivers. A more standard "Ask the Expert" timed event can be more effective for all involved. #lcsm
#LCSM Chat @lcsmchat
RT @brownbeansprout: Specific patient groups should not be encroached upon by researchers and marketers. #lcsm
#LCSM Chat @lcsmchat
RT @VirginiaMByrne: @TimothyKruserMD @LungCancerFaces I joined ALK Positive looking for answers. I wasn’t satisfied with level of care under treating doc, who seemed to like lab rats more than patients. ALK Positive led me to Alice Shaw at MSG, who’s been a godsend. Stayed for advocacy. #lcsm https://t.co/RPjvaC5COQ
Danielle Pardue @Actorielle
RT @BrendonStilesMD: T2. OF COURSE! We need to learn from patients what their needs and expectations are. And sometimes we can provide help in turn. #lcsm
Janet Freeman-Daily @JFreemanDaily
T2) We don't have doctors/researchers in our private ROS1der forum, but they answer tough questions for moderators via email #lcsm
#LCSM Chat @lcsmchat
RT @H_SalemOaks: T2) This is a question I stress about a lot (especially in focused chats like #LCSM)
#LCSM Chat @lcsmchat
RT @coristarlit: T2) yes, but indirectly to help achieve group goals or answer overarching group questions. IMO Direct role would make the support group less “safe” to vent, voice concerns, etc. #LCSM
Sabin Motwani @sabinbmotwanimd
T2 There's always room for a researcher or clinician to learn from patient-caregiver groups and vice versa. Learning happens at all levels, regardless of age, gender, race, SCE, location, among many other clinical and demographic factors. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) Colontown has researchers and doctors available in some discussion groups (like one focused on clinical trials) #lcsm
#LCSM Chat @lcsmchat
RT @n8pennell: T2: T2: Would knowing your doc might be watching inhibit your search for support if you had questions about your care? #lcsm
Danielle Pardue @Actorielle
RT @TimothyKruserMD: T2. I think there's clearly a role...key for docs to know their role is to sympathize and inform...avoiding desire to defend other MDs #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Hence "lanes" MT @JFreemanDaily: Hence "lanes" MT @JFreemanDaily: T2) difficult Q-some topics pts prefer discussing w/other pts. But sometimes expert input useful. #lcsm
Janet Freeman-Daily @JFreemanDaily
T2) If we had researchers in patient groups, we couldn't have frank discussions about clinical trial issues. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) We don't have doctors/researchers in our private ROS1der forum, but they answer tough questions for moderators via email #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: Specific patient groups should not be encroached upon by researchers and marketers. #lcsm
Danielle Pardue @Actorielle
RT @VirginiaMByrne: @TimothyKruserMD @LungCancerFaces I joined ALK Positive looking for answers. I wasn’t satisfied with level of care under treating doc, who seemed to like lab rats more than patients. ALK Positive led me to Alice Shaw at MSG, who’s been a godsend. Stayed for advocacy. #lcsm https://t.co/RPjvaC5COQ
Katie Brown @brownbeansprout
RT @JFreemanDaily: T2) If we had researchers in patient groups, we couldn't have frank discussions about clinical trial issues. #lcsm
Janet Freeman-Daily @JFreemanDaily
@n8pennell Yes, knowing doctors are reading the posts would inhibit frank discussion of care issues. Patients need to vent sometimes. #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T2) Colontown has researchers and doctors available in some discussion groups (like one focused on clinical trials) #lcsm
Danielle Pardue @Actorielle
RT @n8pennell: T2: T2: Would knowing your doc might be watching inhibit your search for support if you had questions about your care? #lcsm
SetuVoraMD ♥️ @setuvora
#lcsm patient support group should stay exclusively patient and family limited Too much risk of #COI
H. Jack West, MD @JackWestMD
T2) Is having docs in pt groups like the way my kids feel when I interact w/them on FB? #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T2) If we had researchers in patient groups, we couldn't have frank discussions about clinical trial issues. #lcsm
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T2 There's always room for a researcher or clinician to learn from patient-caregiver groups and vice versa. Learning happens at all levels, regardless of age, gender, race, SCE, location, among many other clinical and demographic factors. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) If we had researchers in patient groups, we couldn't have frank discussions about clinical trial issues. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @n8pennell Yes, knowing doctors are reading the posts would inhibit frank discussion of care issues. Patients need to vent sometimes. #lcsm
#LCSM Chat @lcsmchat
RT @setuvora: #lcsm patient support group should stay exclusively patient and family limited Too much risk of #COI
Cori @coristarlit
Yes, absolutely #lcsm https://t.co/zFNoR1uvAA
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) Is having docs in pt groups like the way my kids feel when I interact w/them on FB? #lcsm
Brendon Stiles @BrendonStilesMD
T2. Also important to remember that there is a lot of spin and false promised in the digital world. A healthy debate among patients, professionals, and other stakeholders is always important. #lcsm
Janet Freeman-Daily @JFreemanDaily
T2) We have a public ROS1der forum on Facebook, but amazingly, doctors and researchers don't seem to spend much time on FB ;) #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: @n8pennell Yes, knowing doctors are reading the posts would inhibit frank discussion of care issues. Patients need to vent sometimes. #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
@JackWestMD Can't be THAT bad... #lcsm
lysa buonanno @lysabee
#lcsm T2 yes i think i would be more hesitant
#LCSM Chat @lcsmchat
RT @coristarlit: Yes, absolutely #lcsm https://t.co/zFNoR1uvAA
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T2. Also important to remember that there is a lot of spin and false promised in the digital world. A healthy debate among patients, professionals, and other stakeholders is always important. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) We have a public ROS1der forum on Facebook, but amazingly, doctors and researchers don't seem to spend much time on FB ;) #lcsm
Brendon Stiles @BrendonStilesMD
Have to board. Will miss the rest. Have a great chat! #lcsm
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: Specific patient groups should not be encroached upon by researchers and marketers. #lcsm
Cori @coristarlit
RT @JackWestMD: T2) Is having docs in pt groups like the way my kids feel when I interact w/them on FB? #lcsm
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, second opinions, nutrition and side effect management #lcsm https://t.co/Zk8ulQB8gP
H. Jack West, MD @JackWestMD
@setuvora totally believable, but how? promoting your clinical trial or practice? risk of recommending Rx to ppl who aren't your pt? #lcsm
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: T1 also not limted to office hours- online communities are always open for peer support and information gathering #lcsm
Danielle Pardue @Actorielle
T2 I'm sensing it may be useful to separate full-time researchers from full-time clinicians in order to study the issue more fully? #LCSM
Janet Freeman-Daily @JFreemanDaily
T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al could interact #lcsm
Antonio Passaro MD PhD @APassaroMD
@JFreemanDaily @lcsmchat Generally Docs, don’t understand the real power of patients interaction #lcsm
Danielle Pardue @Actorielle
RT @BrendonStilesMD: T2. Also important to remember that there is a lot of spin and false promised in the digital world. A healthy debate among patients, professionals, and other stakeholders is always important. #lcsm
Janet Freeman-Daily @JFreemanDaily
@BrendonStilesMD Fly safe! #lcsm
SetuVoraMD ♥️ @setuvora
@JackWestMD All of the above! #LCSM
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JFreemanDaily: T2) We have a public ROS1der forum on Facebook, but amazingly, doctors and researchers don't seem to spend much time on FB ;) #lcsm
#LCSM Chat @lcsmchat
Italia! Welcome. Remember to add #lcsm to your tweets so all can see. Check out https://t.co/REUOM3GZHV and the hashtag is automatically added. https://t.co/kbz1cRz7Tc
Anita Figueras @scifiknitter
T2 The @EGFRResisters are reaching out to clinicians/researchers for info on clinical trials & research. #LCSM
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
#SkipTheHype #EvidenceBasedMedicine #PatientsFirst #lcsm https://t.co/2eoI1IphhW
Jeffrey E Poehlmann @drainpipe
T2 I think having access to expert voices is important, but perhaps should be in specific areas. Many participants want answers. #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al could interact #lcsm
Danielle Pardue @Actorielle
@RedGia Yes. We've found a bit of a happy medium bc my mom's Onc is finally catching on to what I do, so every once in a while he'll ask if I've read anything anywhere that applies to whatever we're discussing. That was a huge milestone to reach, though. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: @setuvora totally believable, but how? promoting your clinical trial or practice? risk of recommending Rx to ppl who aren't your pt? #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: T2 I'm sensing it may be useful to separate full-time researchers from full-time clinicians in order to study the issue more fully? #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al could interact #lcsm
H. Jack West, MD @JackWestMD
T2) Should there maybe be a separate (perhaps small) subset of discussions for docs, & others (most?) are pt/caregiver only? #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al could interact #lcsm
Nathan A. Pennell MD, PhD, FASCO @n8pennell
T2: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patient only #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @JFreemanDaily @lcsmchat Generally Docs, don’t understand the real power of patients interaction #lcsm
#LCSM Chat @lcsmchat
RT @scifiknitter: T2 The @EGFRResisters are reaching out to clinicians/researchers for info on clinical trials & research. #LCSM
#LCSM Chat @lcsmchat
RT @drainpipe: T2 I think having access to expert voices is important, but perhaps should be in specific areas. Many participants want answers. #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: @RedGia Yes. We've found a bit of a happy medium bc my mom's Onc is finally catching on to what I do, so every once in a while he'll ask if I've read anything anywhere that applies to whatever we're discussing. That was a huge milestone to reach, though. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) Should there maybe be a separate (perhaps small) subset of discussions for docs, & others (most?) are pt/caregiver only? #lcsm
Janet Freeman-Daily @JFreemanDaily
@n8pennell Exactly--multiple "rooms" in a forum: one for patients/caregivers, one for interaction across all mbrs of community, ... #lcsm
#LCSM Chat @lcsmchat
RT @n8pennell: T2: T2: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patient only #lcsm
Danielle Pardue @Actorielle
@apassaroMD @JFreemanDaily @lcsmchat Exactly. Or it gets dismissed as having been just a general online search, as opposed to a meaningful conversation amongst individuals w similar dx. #lcsm
Tim Kruser @TimothyKruserMD
@Actorielle Reasonable statement...others feel that clinicians and researchers should ideally be one in the same to move field forward #lcsm
Katie Brown @brownbeansprout
Discussions among all groups on twitter or open platforms are diff than pt groups - theres expectation of private safe space #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @n8pennell Exactly--multiple "rooms" in a forum: @n8pennell Exactly--multiple "rooms" in a forum: one for patients/caregivers, one for interaction across all mbrs of community, ... #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: @apassaroMD @JFreemanDaily @lcsmchat Exactly. Or it gets dismissed as having been just a general online search, as opposed to a meaningful conversation amongst individuals w similar dx. #lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: @Actorielle Reasonable statement...others feel that clinicians and researchers should ideally be one in the same to move field forward #lcsm
Joni Fowler, PharmD, BCPP @jfowlerpharmd
@JFreemanDaily You’re a pretty smart 🍪—do all groups have a lay moderator with your knowledge? That’s a nice prototype. #lcsm
Danielle Pardue @Actorielle
RT @n8pennell: T2: T2: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patient only #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD It seems to work to have forum moderators have pipeline to expert clinicians/researchers to get the straight scoop #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T2) Should there maybe be a separate (perhaps small) subset of discussions for docs, & others (most?) are pt/caregiver only? #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
If you're just watching tonight, please tweet #LCSM so we know you're out there. You matter to us.
Peggy Dennis @peggyddennis
T2 - Asking as a survivor - do researchers and clinicians WANT to be included in patient online support groups? #lcsm
SetuVoraMD ♥️ @setuvora
#lcsm even the patient advocacy groups for specific diseases that are sponsored by pharma/device makers are concerning
H. Jack West, MD @JackWestMD
T2) I always felt #LCSM & @CancerGRACE were unusual as settings w/pts/caregivers & docs, but more now, e.g. @ASCO, @IASLC --> good thing.
Janet Freeman-Daily @JFreemanDaily
@jfowlerpharmd Moderators develop knowledge and expert networks with time. Helps to attend oncology conferences. ;) #lcsm
H. Jack West, MD @JackWestMD
OK, moving on to T3 next. #lcsm
Danielle Pardue @Actorielle
@TimothyKruserMD I agree. Just wondering about the responses to the chilling effect of conversation being different from one to the other. Does one feel "safer" and the other more "targeted?" #lcsm
H. Jack West, MD @JackWestMD
T3) How might online groups best partner with researchers to accelerate research? Project by project? As long-term partners? #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: Discussions among all groups on twitter or open platforms are diff than pt groups - theres expectation of private safe space #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: @JackWestMD It seems to work to have forum moderators have pipeline to expert clinicians/researchers to get the straight scoop #lcsm
Janet Freeman-Daily @JFreemanDaily
@setuvora I honestly do not believe that pharma sponsorship sways treatment or trial recommendations made by lungcancer nonprofits #lcsm
Tom Varghese Jr. MD, MS, MBA, FACS 🇺🇸 @TomVargheseJr
RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al could interact #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T2) I always felt #LCSM & @CancerGRACE were unusual as settings w/pts/caregivers & docs, but more now, e.g. @ASCO, @IASLC --> good thing.
Tom Varghese Jr. MD, MS, MBA, FACS 🇺🇸 @TomVargheseJr
RT @BrendonStilesMD: T2. Also important to remember that there is a lot of spin and false promised in the digital world. A healthy debate among patients, professionals, and other stakeholders is always important. #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T3) How might online groups best partner with researchers to accelerate research? Project by project? As long-term partners? #lcsm
Joni Fowler, PharmD, BCPP @jfowlerpharmd
@JFreemanDaily Maybe that’s a good educational project for me...”train the trainers”? 🤔 #lcsm
Tim Kruser @TimothyKruserMD
@peggyddennis We're all busy...no one wants to intrude. However most of us in academic settings like to teach/inform when we can #lcsm
Janet Freeman-Daily @JFreemanDaily
@peggyddennis Docs often do not have time for social media or patient communities, but some can answer occasional questions #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: @setuvora I honestly do not believe that pharma sponsorship sways treatment or trial recommendations made by lungcancer nonprofits #lcsm
Benjamin King, MD @BenjaminKingMD
checking in here to #lcsm from Washington DC at the @ASTRO_org coding seminar
H. Jack West, MD @JackWestMD
Thx. Discussion online pt groups. RT @BenjaminKingMD1: checking in here to #lcsm from Washington DC at the @ASTRO_org coding seminar
#LCSM Chat @lcsmchat
RT @brownbeansprout: Discussions among all groups on twitter or open platforms are diff than pt groups - theres expectation of private safe space #lcsm
#LCSM Chat @lcsmchat
RT @jfowlerpharmd: @JFreemanDaily You’re a pretty smart 🍪—do all groups have a lay moderator with your knowledge? That’s a nice prototype. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD It seems to work to have forum moderators have pipeline to expert clinicians/researchers to get the straight scoop #lcsm
#LCSM Chat @lcsmchat
RT @LungCancerFaces: If you're just watching tonight, please tweet #LCSM so we know you're out there. You matter to us.
#LCSM Chat @lcsmchat
RT @peggyddennis: T2 - Asking as a survivor - do researchers and clinicians WANT to be included in patient online support groups? #lcsm
#LCSM Chat @lcsmchat
RT @setuvora: #lcsm even the patient advocacy groups for specific diseases that are sponsored by pharma/device makers are concerning
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) I always felt #LCSM & @CancerGRACE were unusual as settings w/pts/caregivers & docs, but more now, e.g. @ASCO, @IASLC --> good thing.
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @jfowlerpharmd Moderators develop knowledge and expert networks with time. Helps to attend oncology conferences. ;) #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: @TimothyKruserMD I agree. Just wondering about the responses to the chilling effect of conversation being different from one to the other. Does one feel "safer" and the other more "targeted?" #lcsm
Tim Kruser @TimothyKruserMD
@peggyddennis I should modify that reply...the desire and skill to teach/inform certainly not limited to academic docs #lcsm
Katie Brown @brownbeansprout
T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinars, in person survivoirship programs #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T3) How might online groups best partner with researchers to accelerate research? Project by project? As long-term partners? #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @setuvora I honestly do not believe that pharma sponsorship sways treatment or trial recommendations made by lungcancer nonprofits #lcsm
Nathan A. Pennell MD, PhD, FASCO @n8pennell
T3: For rare subtypes (ROS1 etc) just the ability to find each other to make new patients aware of trials and changing standard of care treatments I think is invaluable. So many could miss out. #lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: @peggyddennis We're all busy...no one wants to intrude. However most of us in academic settings like to teach/inform when we can #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @peggyddennis Docs often do not have time for social media or patient communities, but some can answer occasional questions #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Thx. Discussion online pt groups. RT @BenjaminKingMD1: Thx. Discussion online pt groups. RT @BenjaminKingMD1: checking in here to #lcsm from Washington DC at the @ASTRO_org coding seminar
Sabin Motwani @sabinbmotwanimd
T3 The key to great research is having a multidisciplinary approach and to get people regularly talking whether face-to-face or virtually (tweetchats eg) #LCSM
H. Jack West, MD @JackWestMD
T3) Thoughts on how online groups can collaborate w/researchers? (is this microphone on?... Bueller? Bueller?) #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: T3: T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinars, in person survivoirship programs #lcsm
#LCSM Chat @lcsmchat
RT @brownbeansprout: T3: T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinars, in person survivoirship programs #lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: @peggyddennis I should modify that reply...the desire and skill to teach/inform certainly not limited to academic docs #lcsm
Danielle Pardue @Actorielle
RT @n8pennell: T3: T3: For rare subtypes (ROS1 etc) just the ability to find each other to make new patients aware of trials and changing standard of care treatments I think is invaluable. So many could miss out. #lcsm
#LCSM Chat @lcsmchat
RT @n8pennell: T3: T3: For rare subtypes (ROS1 etc) just the ability to find each other to make new patients aware of trials and changing standard of care treatments I think is invaluable. So many could miss out. #lcsm
Janet Freeman-Daily @JFreemanDaily
T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T3 The key to great research is having a multidisciplinary approach and to get people regularly talking whether face-to-face or virtually (tweetchats eg) #LCSM
Frank Ingram, MD @Chucktowndoc
#LCSM
#LCSM Chat @lcsmchat
RT @JackWestMD: T3) Thoughts on how online groups can collaborate w/researchers? (is this microphone on?... Bueller? Bueller?) #lcsm
Anita Figueras @scifiknitter
Agree that this is a good model. It is important to have access to good info and also be able to speak freely. #lcsm https://t.co/3y4I7fNc1E
Janet Freeman-Daily @JFreemanDaily
T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique to their group #lcsm
Danielle Pardue @Actorielle
RT @sabinbmotwanimd: T3 The key to great research is having a multidisciplinary approach and to get people regularly talking whether face-to-face or virtually (tweetchats eg) #LCSM
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JFreemanDaily: T3: T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T3: T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T3: T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique to their group #lcsm
#LCSM Chat @lcsmchat
RT @scifiknitter: Agree that this is a good model. It is important to have access to good info and also be able to speak freely. #lcsm https://t.co/3y4I7fNc1E
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique to their group #lcsm
Sabin Motwani @sabinbmotwanimd
T3 Everyone needs to do their homework. Online groups should meet regularly to determine what's most important to them, then seek out who is doing this research. Be proactive. Part of the issue is online groups may not know who the researchers are and vice versa #LCSM
Tim Kruser @TimothyKruserMD
T3. Tough question. Barriers to research include $$, the right patients, and the right ?'s. Online groups could help all 3 of those #lcsm
H. Jack West, MD @JackWestMD
T3) @JFreemanDaily As in 1-2 designated researchers who have a potentially ongoing relationship w/the group? #lcsm
Anita Figueras @scifiknitter
@jfowlerpharmd @JFreemanDaily Joni, I like this idea a lot! #lcsm
Janet Freeman-Daily @JFreemanDaily
T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patients could make the most difference in research for our disease -- it will vary by disease #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf
Danielle Pardue @Actorielle
RT @sabinbmotwanimd: T3 Everyone needs to do their homework. Online groups should meet regularly to determine what's most important to them, then seek out who is doing this research. Be proactive. Part of the issue is online groups may not know who the researchers are and vice versa #LCSM
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T3 Everyone needs to do their homework. Online groups should meet regularly to determine what's most important to them, then seek out who is doing this research. Be proactive. Part of the issue is online groups may not know who the researchers are and vice versa #LCSM
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: T3. Tough question. Barriers to research include $$, the right patients, and the right ?'s. Online groups could help all 3 of those #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T3) @JFreemanDaily As in 1-2 designated researchers who have a potentially ongoing relationship w/the group? #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patients could make the most difference in research for our disease -- it will vary by disease #lcsm
Jeffrey E Poehlmann @drainpipe
T2 Too often I am asked questions that I am not qualified to answer - having experts avail is a good thing. #lcsm
#LCSM Chat @lcsmchat
RT @TimAllenMDJD: Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf
Danielle Pardue @Actorielle
RT @TimothyKruserMD: T3. Tough question. Barriers to research include $$, the right patients, and the right ?'s. Online groups could help all 3 of those #lcsm
SetuVoraMD ♥️ @setuvora
@JackWestMD #LCSM T3: patient groups can help define meaningful outcomes
Katie Brown @brownbeansprout
T3 we @lungevity partner with researchers to inform lc community about trials and research studies #lcsm
Antonio Passaro MD PhD @APassaroMD
@JFreemanDaily @lcsmchat @peggyddennis I think that is not completely correct! If you want, you find the time for sociale and interaction! Are we sure that all Docs are ready for share ideas and emotions in a more close relationship with patients? Not always! #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T3: T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patients could make the most difference in research for our disease -- it will vary by disease #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD Yes, we have a couple of Principal Investigators working on ROS1-specific research projects to which we contribute #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: T3 we @lungevity partner with researchers to inform lc community about trials and research studies #lcsm
H. Jack West, MD @JackWestMD
Next topic coming up. #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
#EvidenceBasedMedicine And #NoStigma #lcsm https://t.co/nYbcypmQpi
Antonio Passaro MD PhD @APassaroMD
@scifiknitter @lcsmchat I completely agree! #lcsm
H. Jack West, MD @JackWestMD
T4) Is misinformation a significant concern in online patient-caregiver groups? Are there effective ways to limit misinformation? #lcsm
Dave Bjork @bjork5
Hey sorry to be late for the party. Was out for dinner with my #family #lcsm Dave here from Boston 😊
Cori @coristarlit
T3) raising $ to help fund research grants (esp ones that may not be funded otherwise) #lcsm
Janet Freeman-Daily @JFreemanDaily
T3: ROS1ders chose to focus on donating fresh tissue from our biopsies to create new cancer models--don't have enough ROS1 models #lcsm
Benjamin King, MD @BenjaminKingMD
@JackWestMD tough question but there is a role for online groups to facilitate pt perspective and even boost trial enrollment #lcsm
Doug @LungDocDoug
@LungCancerFaces Tweeting #LCSM and watching NCAA. #GoBlue
Anita Figueras @scifiknitter
RT @JFreemanDaily: T3: T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm
SunshineKK @SunshineKK68
Hi sorry late #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T3: T3: ROS1ders chose to focus on donating fresh tissue from our biopsies to create new cancer models--don't have enough ROS1 models #lcsm
Danielle Pardue @Actorielle
RT @BenjaminKingMD1: @JackWestMD tough question but there is a role for online groups to facilitate pt perspective and even boost trial enrollment #lcsm
#LCSM Chat @lcsmchat
RT @drainpipe: T2 Too often I am asked questions that I am not qualified to answer - having experts avail is a good thing. #lcsm
#LCSM Chat @lcsmchat
RT @setuvora: @JackWestMD #LCSM T3: @JackWestMD #LCSM T3: patient groups can help define meaningful outcomes
#LCSM Chat @lcsmchat
RT @apassaroMD: @JFreemanDaily @lcsmchat @peggyddennis I think that is not completely correct! If you want, you find the time for sociale and interaction! Are we sure that all Docs are ready for share ideas and emotions in a more close relationship with patients? Not always! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD Yes, we have a couple of Principal Investigators working on ROS1-specific research projects to which we contribute #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T4) Is misinformation a significant concern in online patient-caregiver groups? Are there effective ways to limit misinformation? #lcsm
#LCSM Chat @lcsmchat
RT @coristarlit: T3) raising $ to help fund research grants (esp ones that may not be funded otherwise) #lcsm
Anita Figueras @scifiknitter
RT @JFreemanDaily: T3: T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patients could make the most difference in research for our disease -- it will vary by disease #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: ROS1ders chose to focus on donating fresh tissue from our biopsies to create new cancer models--don't have enough ROS1 models #lcsm
#LCSM Chat @lcsmchat
RT @BenjaminKingMD1: @JackWestMD tough question but there is a role for online groups to facilitate pt perspective and even boost trial enrollment #lcsm
Janet Freeman-Daily @JFreemanDaily
T3: We talk with researchers about ongoing trials and help patients find trial that best meets their needs (easier with few trials) #lcsm
Dr. Jan Marie Eberth @jmeberth
Chiming in late... sorry! Kids are tough tonight. Cancer researcher from SC on the line. Proud #lcsm follower!
Janet Freeman-Daily @JFreemanDaily
@bjork5 Hey Dave! #lcsm
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
I see you @GaleGordon19! #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T3: T3: We talk with researchers about ongoing trials and help patients find trial that best meets their needs (easier with few trials) #lcsm
Katie Brown @brownbeansprout
T4 this is why we have moderaters for every forum on the Lung Cancer Support Community Message boards and for all the social media patient groups #lcsm
Heather McCullen @H_SalemOaks
T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclusion. #LCSM
Janet Freeman-Daily @JFreemanDaily
T3: Other groups chose to fund research grants (like ALK Positive) #lcsm
Benjamin King, MD @BenjaminKingMD
T4 by sharing resources for medically sound info, as put out by groups like @ASTRO_org @RTAnswers_org #lcsm
Danielle Pardue @Actorielle
RT @brownbeansprout: T4 this is why we have moderaters for every forum on the Lung Cancer Support Community Message boards and for all the social media patient groups #lcsm
Michele Bittikofer @MicheleBittiko1
Hi Dave.. #lcsm
H. Jack West, MD @JackWestMD
T4) Some docs are concerned pts will override good med recs 4 online recs, not always good. Not sure how much pts worry re: bad info. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: We talk with researchers about ongoing trials and help patients find trial that best meets their needs (easier with few trials) #lcsm
Nathan A. Pennell MD, PhD, FASCO @n8pennell
T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas? #lcsm
Danielle Pardue @Actorielle
RT @H_SalemOaks: T4: T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclusion. #LCSM
H. Jack West, MD @JackWestMD
RT @n8pennell: T4: T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas? #lcsm
Cori @coristarlit
@JackWestMD T4) IMO not in the ALK Pos - there is a lot of misinfo, or not evidence based info- but the group amazingly seems to self correct via comments on the post or other postings. That’s how educations happens for all of us. It’s pretty cool to watch. #lcsm
#LCSM Chat @lcsmchat
RT @H_SalemOaks: T4: T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclusion. #LCSM
Dave Bjork @bjork5
@BenjaminKingMD1 @JackWestMD I know some cancer researchers that love to meet with patients. Like @WhetstineLab John what say you? #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JackWestMD: T4) Some docs are concerned pts will override good med recs 4 online recs, not always good. Not sure how much pts worry re: bad info. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3: T3: Other groups chose to fund research grants (like ALK Positive) #lcsm
Katie Brown @brownbeansprout
RT @JFreemanDaily: T3: T3: Other groups chose to fund research grants (like ALK Positive) #lcsm
H. Jack West, MD @JackWestMD
RT @H_SalemOaks: T4: T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclusion. #LCSM
#LCSM Chat @lcsmchat
RT @BenjaminKingMD1: T4 by sharing resources for medically sound info, as put out by groups like @ASTRO_org @RTAnswers_org #lcsm
SetuVoraMD ♥️ @setuvora
@JackWestMD T4: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in their rare disease states. Often more aware than the docs!
#LCSM Chat @lcsmchat
RT @JackWestMD: T4) Some docs are concerned pts will override good med recs 4 online recs, not always good. Not sure how much pts worry re: bad info. #lcsm
#LCSM Chat @lcsmchat
RT @n8pennell: T4: T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas? #lcsm
Sabin Motwani @sabinbmotwanimd
T4 Whenever giving information, try to cite a source or link so others can look things up on their own. There may be different interpretations to how data is presented. #lcsm
LungCancer.net @LungCancer_HU
@kscoon AGREED! #lcsm
#LCSM Chat @lcsmchat
RT @coristarlit: @JackWestMD T4) IMO not in the ALK Pos - there is a lot of misinfo, or not evidence based info- but the group amazingly seems to self correct via comments on the post or other postings. That’s how educations happens for all of us. It’s pretty cool to watch. #lcsm
SunshineKK @SunshineKK68
Patient/caregiver groups important but specific Researchers can help with legit information and education #lcsm
Joni Fowler, PharmD, BCPP @jfowlerpharmd
@JackWestMD Love how the @EGFRResisters are creating a robust database. Great opportunity to help patients find trials & vice versa! #lcsm
Dave Bjork @bjork5
@JFreemanDaily Hey Janet! #lcsm
#LCSM Chat @lcsmchat
#lcsm https://t.co/ZqJMlBKHek
Janet Freeman-Daily @JFreemanDaily
T4: We have patients who share misinformation. Moderators aim to share link to correct info gently, without criticism. #lcsm
#LCSM Chat @lcsmchat
RT @setuvora: @JackWestMD T4: @JackWestMD T4: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in their rare disease states. Often more aware than the docs!
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T4 Whenever giving information, try to cite a source or link so others can look things up on their own. There may be different interpretations to how data is presented. #lcsm
#LCSM Chat @lcsmchat
RT @SunshineKK68: Patient/caregiver groups important but specific Researchers can help with legit information and education #lcsm
#LCSM Chat @lcsmchat
RT @jfowlerpharmd: @JackWestMD Love how the @EGFRResisters are creating a robust database. Great opportunity to help patients find trials & vice versa! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4: T4: We have patients who share misinformation. Moderators aim to share link to correct info gently, without criticism. #lcsm
Janet Freeman-Daily @JFreemanDaily
T4: If we don't know the answer to a question, we check with an expert. #lcsm
H. Jack West, MD @JackWestMD
Agree. Any issues w/outliers? RT @kscoon: T4- having experienced & knowledgeable moderators helps w/misinformation & education. #lcsm
Anita Figueras @scifiknitter
T3) Seems like patient groups could be a good place to find patients for trials. #LCSM
Tom Varghese Jr. MD, MS, MBA, FACS 🇺🇸 @TomVargheseJr
RT @TimAllenMDJD: Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4: T4: If we don't know the answer to a question, we check with an expert. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Agree. Any issues w/outliers? RT @kscoon: Agree. Any issues w/outliers? RT @kscoon: T4- having experienced & knowledgeable moderators helps w/misinformation & education. #lcsm
Janet Freeman-Daily @JFreemanDaily
T4: And as a global group, we're learning the "correct" answer in the USA is not necessarily the correct answer in another country #lcsm
Danielle Pardue @Actorielle
T4 this is a tug of war. E.g.: pts want to hear what side effects are "really like" from someone else living them; MDs don't want laypeople giving "medical advice." This is a space where current medico-legal notions are outdated. #LCSM
#LCSM Chat @lcsmchat
RT @scifiknitter: T3) Seems like patient groups could be a good place to find patients for trials. #LCSM
Whetstine Lab @WhetstineLab
RT @bjork5: @BenjaminKingMD1 @JackWestMD I know some cancer researchers that love to meet with patients. Like @WhetstineLab John what say you? #lcsm
Peggy Dennis @peggyddennis
T4) We learn to read through the lines - separating antidotal info from science based can be tricky for survivors. #lcsm
Danielle Pardue @Actorielle
RT @setuvora: @JackWestMD T4: @JackWestMD T4: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in their rare disease states. Often more aware than the docs!
Sabin Motwani @sabinbmotwanimd
RT @JackWestMD: T4) Some docs are concerned pts will override good med recs 4 online recs, not always good. Not sure how much pts worry re: bad info. #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD @kscoon Yes, we have issues with outliers. Those who are intransigent leave, or in worst case, blocked. #lcsm
Antonio Passaro MD PhD @APassaroMD
@setuvora @lcsmchat @JackWestMD I think that an Expert Should be a Doc, able to interact with patients and caregivers! #lcsm
Antonio Passaro MD PhD @APassaroMD
RT @SunshineKK68: Patient/caregiver groups important but specific Researchers can help with legit information and education #lcsm
SunshineKK @SunshineKK68
Janet you are an expert link but also interaction directly with experts can stimulate discussion #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4: T4: And as a global group, we're learning the "correct" answer in the USA is not necessarily the correct answer in another country #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: T4 this is a tug of war. E.g.: T4 this is a tug of war. E.g.: pts want to hear what side effects are "really like" from someone else living them; MDs don't want laypeople giving "medical advice." This is a space where current medico-legal notions are outdated. #LCSM
#LCSM Chat @lcsmchat
RT @peggyddennis: T4) We learn to read through the lines - separating antidotal info from science based can be tricky for survivors. #lcsm
H. Jack West, MD @JackWestMD
RT @JFreemanDaily: @JackWestMD @kscoon Yes, we have issues with outliers. Those who are intransigent leave, or in worst case, blocked. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD @kscoon Yes, we have issues with outliers. Those who are intransigent leave, or in worst case, blocked. #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @setuvora @lcsmchat @JackWestMD I think that an Expert Should be a Doc, able to interact with patients and caregivers! #lcsm
Dave Bjork @bjork5
@kscoon I agree! Especially in #lungcancer social media there are so many legit, caring and informed voice eager to help #LCSM
Pallavi A. Patil, MD @PAPatilMD
RT @TimAllenMDJD: Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf
#LCSM Chat @lcsmchat
RT @SunshineKK68: Janet you are an expert link but also interaction directly with experts can stimulate discussion #lcsm
Pallavi A. Patil, MD @PAPatilMD
RT @TimAllenMDJD: #EvidenceBasedMedicine And #NoStigma #lcsm https://t.co/nYbcypmQpi
Tessa Sheldon @tessa_perrin
Not much to add these days, but I'm here and following #LCSM
Cori @coristarlit
In my group people kindly reply why they have a different opinion - And then they back it up with tons of peer reviewed articles to support it. It’s how we educate a lot of the newbies! It’s how myself got educated after posting some junk science 😂 #lcsm https://t.co/wy6IkSGD3R
Janet Freeman-Daily @JFreemanDaily
@SunshineKK68 Yes, interaction with experts is great (https://t.co/DoJNau8r1d proves that), but can also stifle other discussions. #lcsm
Dr. Jan Marie Eberth @jmeberth
T4) there is a lot of medical “fake news” out there. No pun intended. It’s great that forums like this one have experts from many disciplines to back up the discussion. #lcsm
Janet Freeman-Daily @JFreemanDaily
T4: We are considering creating occasional online "open house" with experts to field questions directly #lcsm
Antonio Passaro MD PhD @APassaroMD
@JFreemanDaily @lcsmchat Misinformations is a great danger, when is not filtrate by a Doc, in particular when we focus on new target agents #lcsm
H. Jack West, MD @JackWestMD
T4) @JFreemanDaily Re: correct approach in US vs. other places, do you mean d/t drug access differences? cultural diffs? #lcsm
#LCSM Chat @lcsmchat
RT @bjork5: @kscoon I agree! Especially in #lungcancer social media there are so many legit, caring and informed voice eager to help #LCSM
#LCSM Chat @lcsmchat
RT @coristarlit: In my group people kindly reply why they have a different opinion - And then they back it up with tons of peer reviewed articles to support it. It’s how we educate a lot of the newbies! It’s how myself got educated after posting some junk science 😂 #lcsm https://t.co/wy6IkSGD3R
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @SunshineKK68 Yes, interaction with experts is great (https://t.co/DoJNau8r1d proves that), but can also stifle other discussions. #lcsm
#LCSM Chat @lcsmchat
RT @jmeberth: T4) there is a lot of medical “fake news” out there. No pun intended. It’s great that forums like this one have experts from many disciplines to back up the discussion. #lcsm
Janet Freeman-Daily @JFreemanDaily
T4: Other groups do this as an "Ask Me Anything" (AMA) event #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4: T4: We are considering creating occasional online "open house" with experts to field questions directly #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T4) @JFreemanDaily Re: T4) @JFreemanDaily Re: correct approach in US vs. other places, do you mean d/t drug access differences? cultural diffs? #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @JFreemanDaily @lcsmchat Misinformations is a great danger, when is not filtrate by a Doc, in particular when we focus on new target agents #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4: T4: Other groups do this as an "Ask Me Anything" (AMA) event #lcsm
Benjamin King, MD @BenjaminKingMD
@sabinbmotwanimd I like this a lot. Good to site sources for both research/technical info as well as patient education level info #lcsm
Geri Massa @GeriGerim13
Interaction and communication with Dr.s to get their opinions, thoughts, expertise is “PRICELESS”#lcsm #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD Different countries have different standard of care, drug availability, testing standards, insurance coverage ... #lcsm
H. Jack West, MD @JackWestMD
Sounds good. RT @JFreemanDaily: T4: Other groups do this as an "Ask Me Anything" (AMA) event #lcsm
Doug @LungDocDoug
@RedGia @JackWestMD Wait. You’re saying I can have coffee without drinking it? #lcsm
H. Jack West, MD @JackWestMD
OK, last Q of the evening/chat coming up. #lcsm
Doug @LungDocDoug
RT @JackWestMD: T4) @JFreemanDaily Re: T4) @JFreemanDaily Re: correct approach in US vs. other places, do you mean d/t drug access differences? cultural diffs? #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: @JackWestMD Different countries have different standard of care, drug availability, testing standards, insurance coverage ... #lcsm
Janet Freeman-Daily @JFreemanDaily
@RedGia @JackWestMD I just had a visceral reaction to the "coffee enema" comment ... #lcsm
Antonio Passaro MD PhD @APassaroMD
RT @SunshineKK68: Janet you are an expert link but also interaction directly with experts can stimulate discussion #lcsm
H. Jack West, MD @JackWestMD
T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involvement? #lcsm
Cori @coristarlit
T4) yes! We did one recently with the researcher who discovered the ALK rearrangement! We loved it and want more #lcsm https://t.co/mFGrhLoejd
Janet Freeman-Daily @JFreemanDaily
@LungDocDoug @RedGia @JackWestMD Doug, you went to grad school--you mean you've never tried coffee via IV? ;) #lcsm
Stephen Kearney 🇺🇦🇮🇪 @SJKBio
RT @JackWestMD: T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involvement? #lcsm
Antonio Passaro MD PhD @APassaroMD
RT @JFreemanDaily: T4: T4: We are considering creating occasional online "open house" with experts to field questions directly #lcsm
Anita Figueras @scifiknitter
T4 Some form of leadership/moderation needed to deal with potential for misinformation - and people looking for a market (MJ purveyors et al) #LCSM
Janet Freeman-Daily @JFreemanDaily
@RedGia Good to see you--have a good evening. #lcsm
Danielle Pardue @Actorielle
RT @JackWestMD: T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involvement? #lcsm
Linnea Olson @1111linno
Linnea saying hi from Logan Airport. All day at the Koch learning (more) about lung cancer, now on to DC to talk to FDA about PRO’s xo #lcsm
Dave Bjork @bjork5
T4 #lcsm in #lungcancer And in social media good mix of oncologists RNs other professionals, patient and survivors
Jeffrey E Poehlmann @drainpipe
T4 Agree that knowledgeable mods are necessary, guidelines about posting are helpful, and respectful replies with links work well. #lcsm
H. Jack West, MD @JackWestMD
Thx; have a great evening. RT @RedGia: #LCSM - good conversation tonight but I need to run. Hope you all have a great Friday!
SunshineKK @SunshineKK68
patients talking with experts on their cancer may be educated with a new perspective #lcsm
#LCSM Chat @lcsmchat
RT @BenjaminKingMD1: @sabinbmotwanimd I like this a lot. Good to site sources for both research/technical info as well as patient education level info #lcsm
#LCSM Chat @lcsmchat
RT @GeriGerim13: Interaction and communication with Dr.s to get their opinions, thoughts, expertise is “PRICELESS”#lcsm #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD Different countries have different standard of care, drug availability, testing standards, insurance coverage ... #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involvement? #lcsm
#LCSM Chat @lcsmchat
RT @coristarlit: T4) yes! We did one recently with the researcher who discovered the ALK rearrangement! We loved it and want more #lcsm https://t.co/mFGrhLoejd
Katie Brown @brownbeansprout
T5 I think it's ok as long as everything is patient driven, transparent #lcsm
Antonio Passaro MD PhD @APassaroMD
@kscoon @JFreemanDaily I think that is a different kind of expert! We can help you, and you can help us! ##lcsm
Danielle Pardue @Actorielle
RT @1111linno: Linnea saying hi from Logan Airport. All day at the Koch learning (more) about lung cancer, now on to DC to talk to FDA about PRO’s xo #lcsm
#LCSM Chat @lcsmchat
RT @scifiknitter: T4 Some form of leadership/moderation needed to deal with potential for misinformation - and people looking for a market (MJ purveyors et al) #LCSM
Tim Kruser @TimothyKruserMD
T5. Not sure patients feel about pharma support in online groups. As clinical researcher I'm surprised how necessary partnership is #lcsm
#LCSM Chat @lcsmchat
RT @bjork5: T4 #lcsm in #lungcancer And in social media good mix of oncologists RNs other professionals, patient and survivors
#LCSM Chat @lcsmchat
RT @drainpipe: T4 Agree that knowledgeable mods are necessary, guidelines about posting are helpful, and respectful replies with links work well. #lcsm
Jeffrey E Poehlmann @drainpipe
T5 I see great benefit from industry involvement, feel that increased transparency will help, too. #lcsm
#LCSM Chat @lcsmchat
RT @SunshineKK68: patients talking with experts on their cancer may be educated with a new perspective #lcsm
#LCSM Chat @lcsmchat
RT @brownbeansprout: T5 I think it's ok as long as everything is patient driven, transparent #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @kscoon @JFreemanDaily I think that is a different kind of expert! We can help you, and you can help us! ##lcsm
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: T5. Not sure patients feel about pharma support in online groups. As clinical researcher I'm surprised how necessary partnership is #lcsm
Geri Massa @GeriGerim13
This would be great RT @JFreemanDaily: T4: We are considering creating #lcsm
#LCSM Chat @lcsmchat
RT @drainpipe: T5 I see great benefit from industry involvement, feel that increased transparency will help, too. #lcsm
Janet Freeman-Daily @JFreemanDaily
T5: The ROS1ders (as well as all other oncogene-focused pt groups thus far) is not legal entity and so doesn't qualify as a charity, so no pharma funding (yet). However, we have talked with pharma about ways to collaborate. Touchy ethical issue for pharma too. #LCSM
Heather McCullen @H_SalemOaks
#LCSM https://t.co/0vPJfiYxXj
LungCancer.net @LungCancer_HU
RT @drainpipe: T4 Agree that knowledgeable mods are necessary, guidelines about posting are helpful, and respectful replies with links work well. #lcsm
Antonio Passaro MD PhD @APassaroMD
RT @SunshineKK68: patients talking with experts on their cancer may be educated with a new perspective #lcsm
H. Jack West, MD @JackWestMD
T5) IMO, could be helpful to accelerate research & knowledge of dzs state. Just key for all to be aware of what's in it for others. #lcsm
SunshineKK @SunshineKK68
patients need patient-patient interactions AND patient-expert interations-different but important #lcsm
Stephen Kearney 🇺🇦🇮🇪 @SJKBio
RT @JackWestMD: T5) IMO, could be helpful to accelerate research & knowledge of dzs state. Just key for all to be aware of what's in it for others. #lcsm
Sabin Motwani @sabinbmotwanimd
T5 Pharma/Industry are both a benefit to lung ca patients, and also a detriment. Very important to publish negative studies, and for interpretation of data to be done by people with no COI. #LCSM
Dr. Jan Marie Eberth @jmeberth
T5) I definitely think pharma support can be a good thing. Need to test drugs in diverse populations. Researchers must be careful to follow ethical guidelines though... need contracts that prevent censoring, data reordering, publication approval etc. #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: T5: T5: The ROS1ders (as well as all other oncogene-focused pt groups thus far) is not legal entity and so doesn't qualify as a charity, so no pharma funding (yet). However, we have talked with pharma about ways to collaborate. Touchy ethical issue for pharma too. #LCSM
H. Jack West, MD @JackWestMD
RT @drainpipe: T5 I see great benefit from industry involvement, feel that increased transparency will help, too. #lcsm
Jamie Roger @JamieRoger8
Sorry, I'm late to the fun, looks like i've been missing out on a good discussion though. Jamie from CT. #lcsm @SalemOaks
SunshineKK @SunshineKK68
both offer an awareness that could lead to accelerating research #lcsm
Jeffrey E Poehlmann @drainpipe
T5 Transparency is key when Pharma is involved, and if transparent it can be very useful. I support Pharma gaining more patient data. #lcsm
H. Jack West, MD @JackWestMD
T5) It seems nobody is concerned that industry support/involvement is inappropriate if it can help move field forward. Correct? #lcsm
Dave Bjork @bjork5
@JackWestMD T5 there has long been cynicism about Pharma but there are many good people in industry who truly want to help patients and are not just giving info and support for money or commercial interest. I’ve worked with Pharma Advocacy people for many years #lcsm
Danielle Pardue @Actorielle
RT @jmeberth: T5) I definitely think pharma support can be a good thing. Need to test drugs in diverse populations. Researchers must be careful to follow ethical guidelines though... need contracts that prevent censoring, data reordering, publication approval etc. #lcsm
Miguel Sotelo @M_SoteloLezama
RT @IASLC: New report shows that lifetime physical inactivity is associated with lung cancer risk and mortality. #LCSM https://t.co/uW6t9JQ0wG
Antonio Passaro MD PhD @APassaroMD
@JackWestMD I think that Pharma support should be present, but limited! #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to work together. #lcsm
H. Jack West, MD @JackWestMD
RT @JFreemanDaily: @JackWestMD T5: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to work together. #lcsm
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: T3 we @lungevity partner with researchers to inform lc community about trials and research studies #lcsm
Peggy Dennis @peggyddennis
T5) @JackWestMD Agree - transparency is a must but yes, could be very useful in moving the field forward. #lcsm
Tim Kruser @TimothyKruserMD
@JackWestMD We would have to dive way into politics, funding of NIH, corporate taxes, etc to really address moving away from pharma #lcsm
Heather McCullen @H_SalemOaks
RT @bjork5: @JackWestMD T5 there has long been cynicism about Pharma but there are many good people in industry who truly want to help patients and are not just giving info and support for money or commercial interest. I’ve worked with Pharma Advocacy people for many years #lcsm
Antonio Passaro MD PhD @APassaroMD
RT @JFreemanDaily: @JackWestMD T5: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to work together. #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD T5: However, patient advocates must stay focused on what's best for PATIENTS, not anyone else. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T5: T5: The ROS1ders (as well as all other oncogene-focused pt groups thus far) is not legal entity and so doesn't qualify as a charity, so no pharma funding (yet). However, we have talked with pharma about ways to collaborate. Touchy ethical issue for pharma too. #LCSM
Jeffrey E Poehlmann @drainpipe
T5 @JackWestMD I would concur. Shared goals are shared goals -- helping one industry helps us all. #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Ethics matter. #lcsm https://t.co/gNVuOo5Vuk
#LCSM Chat @lcsmchat
RT @H_SalemOaks: #LCSM https://t.co/0vPJfiYxXj
Anita Figueras @scifiknitter
T5 Pharma are important potential partners - they are developing the drugs that keep our bodies & hope alive. Agreed that transparency of relationship needed. #LCSM
Flemming Rasmussen @fgrazz
@JackWestMD T5 - I don't see that involvement of industry as a bad thing, it should never however, be the only thing. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) IMO, could be helpful to accelerate research & knowledge of dzs state. Just key for all to be aware of what's in it for others. #lcsm
#LCSM Chat @lcsmchat
RT @SunshineKK68: patients need patient-patient interactions AND patient-expert interations-different but important #lcsm
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T5 Pharma/Industry are both a benefit to lung ca patients, and also a detriment. Very important to publish negative studies, and for interpretation of data to be done by people with no COI. #LCSM
#LCSM Chat @lcsmchat
RT @jmeberth: T5) I definitely think pharma support can be a good thing. Need to test drugs in diverse populations. Researchers must be careful to follow ethical guidelines though... need contracts that prevent censoring, data reordering, publication approval etc. #lcsm
Flemming Rasmussen @fgrazz
RT @TimAllenMDJD: Ethics matter. #lcsm https://t.co/gNVuOo5Vuk
#LCSM Chat @lcsmchat
RT @SunshineKK68: both offer an awareness that could lead to accelerating research #lcsm
H. Jack West, MD @JackWestMD
T5) @TimothyKruserMD but I'm talking about having pharma partnering in some way to online groups. No real precedent there. #lcsm
#LCSM Chat @lcsmchat
RT @drainpipe: T5 Transparency is key when Pharma is involved, and if transparent it can be very useful. I support Pharma gaining more patient data. #lcsm
Janet Freeman-Daily @JFreemanDaily
@drainpipe Willing to give pharma more data as long as patients own their data and decide with whom they will share their data #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) It seems nobody is concerned that industry support/involvement is inappropriate if it can help move field forward. Correct? #lcsm
Dave Bjork @bjork5
RT @peggyddennis: T5) @JackWestMD Agree - transparency is a must but yes, could be very useful in moving the field forward. #lcsm
#LCSM Chat @lcsmchat
RT @bjork5: @JackWestMD T5 there has long been cynicism about Pharma but there are many good people in industry who truly want to help patients and are not just giving info and support for money or commercial interest. I’ve worked with Pharma Advocacy people for many years #lcsm
Janet Freeman-Daily @JFreemanDaily
@drainpipe Willing to give pharma more data as long as patients own their data and decide with whom they will share their data #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @JackWestMD I think that Pharma support should be present, but limited! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD T5: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to work together. #lcsm
Danielle Pardue @Actorielle
RT @TimAllenMDJD: Ethics matter. #lcsm https://t.co/gNVuOo5Vuk
Antonio Passaro MD PhD @APassaroMD
RT @SunshineKK68: patients need patient-patient interactions AND patient-expert interations-different but important #lcsm
#LCSM Chat @lcsmchat
RT @peggyddennis: T5) @JackWestMD Agree - transparency is a must but yes, could be very useful in moving the field forward. #lcsm
Danielle Pardue @Actorielle
RT @scifiknitter: T5 Pharma are important potential partners - they are developing the drugs that keep our bodies & hope alive. Agreed that transparency of relationship needed. #LCSM
#LCSM Chat @lcsmchat
RT @TimothyKruserMD: @JackWestMD We would have to dive way into politics, funding of NIH, corporate taxes, etc to really address moving away from pharma #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD T5: @JackWestMD T5: However, patient advocates must stay focused on what's best for PATIENTS, not anyone else. #lcsm
#LCSM Chat @lcsmchat
RT @drainpipe: T5 @JackWestMD I would concur. Shared goals are shared goals -- helping one industry helps us all. #lcsm
#LCSM Chat @lcsmchat
RT @TimAllenMDJD: Ethics matter. #lcsm https://t.co/gNVuOo5Vuk
#LCSM Chat @lcsmchat
RT @scifiknitter: T5 Pharma are important potential partners - they are developing the drugs that keep our bodies & hope alive. Agreed that transparency of relationship needed. #LCSM
Geri Massa @GeriGerim13
#LCSM https://t.co/gueXy8vsjE
#LCSM Chat @lcsmchat
RT @fgrazz: @JackWestMD T5 - I don't see that involvement of industry as a bad thing, it should never however, be the only thing. #lcsm
Anita Figueras @scifiknitter
RT @JFreemanDaily: @JackWestMD T5: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to work together. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) @TimothyKruserMD but I'm talking about having pharma partnering in some way to online groups. No real precedent there. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @drainpipe Willing to give pharma more data as long as patients own their data and decide with whom they will share their data #lcsm
LUNGevity Foundation @LUNGevity
@brownbeansprout @JFreemanDaily @JackWestMD #lcsm
Antonio Passaro MD PhD @APassaroMD
@SunshineKK68 @lcsmchat I completely agree! This is the key! #lcsm
Jamie Roger @JamieRoger8
@Actorielle I agree, i think participating in the patient/ caregiver forums would be an ideal classroom for researchers to gain a better understanding of the lived experiences of those individuals. #lcsm @SalemOaks #patientengagement
H. Jack West, MD @JackWestMD
Can I ask as a bonus question if anyone's concerned re: privacy on FB about pt groups there? #lcsm
SunshineKK @SunshineKK68
PATIENTS are the heart of this discussion - anyone that is supporting more research and knowledge #lcsm
SetuVoraMD ♥️ @setuvora
@JackWestMD T5: #lcsm https://t.co/p0OltE20Lo
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Yep. Lots of dedicated people. Must expect ethical behavior though. #lcsm https://t.co/T6sRTOCe9K
Denise Cutlip @dennycee
Very late will read and catch up. Apologies. #LCSM
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: T4 this is why we have moderaters for every forum on the Lung Cancer Support Community Message boards and for all the social media patient groups #lcsm
LUNGevity Foundation @LUNGevity
RT @brownbeansprout: T3: T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinars, in person survivoirship programs #lcsm
Danielle Pardue @Actorielle
RT @JFreemanDaily: @drainpipe Willing to give pharma more data as long as patients own their data and decide with whom they will share their data #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @drainpipe Willing to give pharma more data as long as patients own their data and decide with whom they will share their data #lcsm
#LCSM Chat @lcsmchat
RT @JamieRoger8: @Actorielle I agree, i think participating in the patient/ caregiver forums would be an ideal classroom for researchers to gain a better understanding of the lived experiences of those individuals. #lcsm @SalemOaks #patientengagement
#LCSM Chat @lcsmchat
RT @JackWestMD: Can I ask as a bonus question if anyone's concerned re: Can I ask as a bonus question if anyone's concerned re: privacy on FB about pt groups there? #lcsm
Antonio Passaro MD PhD @APassaroMD
@JackWestMD I think no! FB is an ocean with too many shark! Medical privacy is important for our patients! #lcsm
#LCSM Chat @lcsmchat
RT @SunshineKK68: PATIENTS are the heart of this discussion - anyone that is supporting more research and knowledge #lcsm
#LCSM Chat @lcsmchat
RT @setuvora: @JackWestMD T5: @JackWestMD T5: #lcsm https://t.co/p0OltE20Lo
#LCSM Chat @lcsmchat
RT @TimAllenMDJD: Yep. Lots of dedicated people. Must expect ethical behavior though. #lcsm https://t.co/T6sRTOCe9K
Michele Bittikofer @MicheleBittiko1
Are we still talking about involvement..i stepped away. I think pharm should have limited involvement if that can happen. #lcsm
SunshineKK @SunshineKK68
How do the patients and caregivers establish trust with these groups? #lcsm
H. Jack West, MD @JackWestMD
OK, folks. Thx for a lively discussion on a timely topic. I think pt online groups will have evolving & increasingly important role. #lcsm
#LCSM Chat @lcsmchat
RT @apassaroMD: @JackWestMD I think no! FB is an ocean with too many shark! Medical privacy is important for our patients! #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD I'm concerned about privacy of patient groups on Facebook, but for now, it's the most friendly, familiar interface, and gives moderators the most control over what their groups discuss and how they manage group information #LCSM
#LCSM Chat @lcsmchat
RT @MicheleBittiko1: Are we still talking about involvement..i stepped away. I think pharm should have limited involvement if that can happen. #lcsm
#LCSM Chat @lcsmchat
RT @SunshineKK68: How do the patients and caregivers establish trust with these groups? #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: OK, folks. Thx for a lively discussion on a timely topic. I think pt online groups will have evolving & increasingly important role. #lcsm
Cori @coristarlit
@JackWestMD Bonus Q: I personally am not, but a lot of people have voiced concerns in the ALK Pos #lcsm
Flemming Rasmussen @fgrazz
@TimothyKruserMD @JackWestMD T5 - Diving into those realms shouldn't be discounted, but there would need to be a good reason to do so #lcsm
H. Jack West, MD @JackWestMD
RT @coristarlit: @JackWestMD Bonus Q: @JackWestMD Bonus Q: I personally am not, but a lot of people have voiced concerns in the ALK Pos #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Yes. Suggest cautious, watchful approach for the moment. #lcsm https://t.co/v4GU8rJZr5
Antonio Passaro MD PhD @APassaroMD
RT @MicheleBittiko1: Are we still talking about involvement..i stepped away. I think pharm should have limited involvement if that can happen. #lcsm
Jamie Roger @JamieRoger8
How else can we learn what they need without allowing them to express their own needs and expectations? Otherwise it's just researchers TELLING them what they need which destroys #patientadvocacy and #patientengagement @SalemOaks #lcsm https://t.co/rmPu6uaHLD
Danielle Pardue @Actorielle
I'm no more concerned about data than before. I've always *tried* to act like anything online wasn't private. I just wish we didn't live in a world where some disclosures make things harder on pts. Insurance, employers, etc. #LCSM
Faces of Lung Cancer 🇺🇦 @LungCancerFaces
Thanks for moderating @JackWestMD! #lcsm
Sabin Motwani @sabinbmotwanimd
T5 This is a very sobering illustration about NCCN guidelines. #LCSM https://t.co/Kp8IdlokXa
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @JackWestMD I'm concerned about privacy of patient groups on Facebook, but for now, it's the most friendly, familiar interface, and gives moderators the most control over what their groups discuss and how they manage group information #LCSM
#LCSM Chat @lcsmchat
RT @coristarlit: @JackWestMD Bonus Q: @JackWestMD Bonus Q: I personally am not, but a lot of people have voiced concerns in the ALK Pos #lcsm
H. Jack West, MD @JackWestMD
Closing thoughts? We'll wind down, and plan to return for another #LCSM chat in 2 weeks.
Danielle Pardue @Actorielle
RT @JFreemanDaily: @JackWestMD I'm concerned about privacy of patient groups on Facebook, but for now, it's the most friendly, familiar interface, and gives moderators the most control over what their groups discuss and how they manage group information #LCSM
#LCSM Chat @lcsmchat
RT @fgrazz: @TimothyKruserMD @JackWestMD T5 - Diving into those realms shouldn't be discounted, but there would need to be a good reason to do so #lcsm
#LCSM Chat @lcsmchat
RT @TimAllenMDJD: Yes. Suggest cautious, watchful approach for the moment. #lcsm https://t.co/v4GU8rJZr5
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @apassaroMD: @JackWestMD I think no! FB is an ocean with too many shark! Medical privacy is important for our patients! #lcsm
#LCSM Chat @lcsmchat
RT @Actorielle: I'm no more concerned about data than before. I've always *tried* to act like anything online wasn't private. I just wish we didn't live in a world where some disclosures make things harder on pts. Insurance, employers, etc. #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: How else can we learn what they need without allowing them to express their own needs and expectations? Otherwise it's just researchers TELLING them what they need which destroys #patientadvocacy and #patientengagement @SalemOaks #lcsm https://t.co/rmPu6uaHLD
Danielle Pardue @Actorielle
RT @TimAllenMDJD: Yes. Suggest cautious, watchful approach for the moment. #lcsm https://t.co/v4GU8rJZr5
Janet Freeman-Daily @JFreemanDaily
Thanks for a great topic @JackWestMD, and thanks to everyone for participating! I'm still catching up on responses! #lcsm
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @Actorielle: I'm no more concerned about data than before. I've always *tried* to act like anything online wasn't private. I just wish we didn't live in a world where some disclosures make things harder on pts. Insurance, employers, etc. #LCSM
#LCSM Chat @lcsmchat
RT @sabinbmotwanimd: T5 This is a very sobering illustration about NCCN guidelines. #LCSM https://t.co/Kp8IdlokXa
Dave Bjork @bjork5
Great job tonight @JackWestMD & all #lcsm 😊 https://t.co/Zp6KJY2KEd
#LCSM Chat @lcsmchat
RT @JackWestMD: Closing thoughts? We'll wind down, and plan to return for another #LCSM chat in 2 weeks.
LUNGevity Foundation @LUNGevity
#lcsm https://t.co/NIbhEunbRE
Flemming Rasmussen @fgrazz
RT @bjork5: Great job tonight @JackWestMD & all #lcsm 😊 https://t.co/Zp6KJY2KEd
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
Yes, thank you, @JackWestMD It has been a privilege to participate. #lcsm https://t.co/MjFNeWBUg2
SetuVoraMD ♥️ @setuvora
@JackWestMD #lcsm @CamAnalytica @facebook already showed how fb user data can be harvested for micro targeting audiences. Will the ads for next-gen Dx Rx for LC pop up in your feed if you are in a patient group?
Danielle Pardue @Actorielle
Thank you, my friends! A brilliant hour as always! 💚 #LCSM
H. Jack West, MD @JackWestMD
Thx! RT @JFreemanDaily: Thanks for a great topic @JackWestMD, & thanks to everyone for participating! #lcsm
Heather McCullen @H_SalemOaks
Thanks for a great chat #LCSM I learned a lot.
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @sabinbmotwanimd: T5 This is a very sobering illustration about NCCN guidelines. #LCSM https://t.co/Kp8IdlokXa
Peggy Dennis @peggyddennis
Great topic - thank you!! #lcsm
Anita Figueras @scifiknitter
@JackWestMD Many groups have chosen to operate on Facebook as closed groups. Have to ask to join, posts can't be shared, and our conversations can't be seen outside the group. #lcsm
Janet Freeman-Daily @JFreemanDaily
CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner across the lung cancer community. Tell us your ideas! #LCSM
#LCSM Chat @lcsmchat
RT @setuvora: @JackWestMD #lcsm @CamAnalytica @facebook already showed how fb user data can be harvested for micro targeting audiences. Will the ads for next-gen Dx Rx for LC pop up in your feed if you are in a patient group?
#LCSM Chat @lcsmchat
RT @scifiknitter: @JackWestMD Many groups have chosen to operate on Facebook as closed groups. Have to ask to join, posts can't be shared, and our conversations can't be seen outside the group. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: CT: CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner across the lung cancer community. Tell us your ideas! #LCSM
Danielle Pardue @Actorielle
RT @JFreemanDaily: CT: CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner across the lung cancer community. Tell us your ideas! #LCSM
Jamie Roger @JamieRoger8
@JFreemanDaily I agree, in my experience it's effective to have the researcher/clinician present during patient groups to add to the dialogue when they may have questions or a need for guidance about something they are unclear on. #delicatebalance. #patientscientist #lcsm @SalemOaks
Tim Kruser @TimothyKruserMD
@JackWestMD Thanks for hosting...this was great...from a first-timer! #lcsm
Benjamin King, MD @BenjaminKingMD
#lcsm thanks for a great session everyone! Goodnight
Dave Bjork @bjork5
Thanks John! @WhetstineLab #lcsm @lcsmchat 👍 https://t.co/xpYdDi0wbq
Whetstine Lab @WhetstineLab
RT @bjork5: Thanks John! @WhetstineLab #lcsm @lcsmchat 👍 https://t.co/xpYdDi0wbq
Geri Massa @GeriGerim13
#lcsm Where does the time go, enjoyed the chat 😊👍 https://t.co/FxHdpWWWye
Heather McCullen @H_SalemOaks
@setuvora @JackWestMD @CamAnalytica @facebook The scary part is how easily it sneaks in. Silly example, FB always shows me ads for these dumb looking slippers. I see them dozens of times a day. At this point I have no way of knowing if they're an actual trend. Now imagine that was an ad for an alternative treatment. #LCSM
Katie Brown @brownbeansprout
RT @LUNGevity: #lcsm https://t.co/NIbhEunbRE
Jamie Roger @JamieRoger8
I also feel though that if a researcher/clinician is in this group for an extended period of time and acts as a support, it can be beneficial to the pt./cg's belief that the res/clin values them #patientscientist #whosetheexpert #lcsm @SalemOaks https://t.co/xwKEHnNlyt
Janet Freeman-Daily @JFreemanDaily
@apassaroMD @lcsmchat @peggyddennis Researchers that work clinic hours, field emails from patients, run research labs, write grant proposals, and have family at home often don't have a lot of spare time for social media interactions. And that's OK. #LCSM
Jeffrey E Poehlmann @drainpipe
@JFreemanDaily Totally agree that patients should own their data. Some online groups offer anonymous participation if Pharma involved. #lcsm
Anita Figueras @scifiknitter
Thank you @JackWestMD for moderating an excellent chat - and everyone for a great conversation. #LCSM
Janet Freeman-Daily @JFreemanDaily
@apassaroMD @lcsmchat @peggyddennis I imagine some docs need time away from patients to have a life and keep their own energies up, too. #LCSM
Jamie Roger @JamieRoger8
@VirginiaMByrne @TimothyKruserMD @LungCancerFaces Some res/clin truly value the lived experiences of the pt/cg and want to be able to advocate for them and support their successes. These can't always be learned about in a research or medical setting #lcsm @salemoaks #patientengagement
Anita Figueras @scifiknitter
RT @JFreemanDaily: CT: CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner across the lung cancer community. Tell us your ideas! #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: @JFreemanDaily I agree, in my experience it's effective to have the researcher/clinician present during patient groups to add to the dialogue when they may have questions or a need for guidance about something they are unclear on. #delicatebalance. #patientscientist #lcsm @SalemOaks
Janet Freeman-Daily @JFreemanDaily
@apassaroMD @lcsmchat Sometimes medical vision for common situations can come through patients who are cared for by experts docs--especially when only a few treatment options are available and the patients have vetted their info with those experts. #LCSM
#LCSM Chat @lcsmchat
RT @bjork5: Thanks John! @WhetstineLab #lcsm @lcsmchat 👍 https://t.co/xpYdDi0wbq
#LCSM Chat @lcsmchat
RT @H_SalemOaks: @setuvora @JackWestMD @CamAnalytica @facebook The scary part is how easily it sneaks in. Silly example, FB always shows me ads for these dumb looking slippers. I see them dozens of times a day. At this point I have no way of knowing if they're an actual trend. Now imagine that was an ad for an alternative treatment. #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: I also feel though that if a researcher/clinician is in this group for an extended period of time and acts as a support, it can be beneficial to the pt./cg's belief that the res/clin values them #patientscientist #whosetheexpert #lcsm @SalemOaks https://t.co/xwKEHnNlyt
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @apassaroMD @lcsmchat @peggyddennis Researchers that work clinic hours, field emails from patients, run research labs, write grant proposals, and have family at home often don't have a lot of spare time for social media interactions. And that's OK. #LCSM
Jamie Roger @JamieRoger8
@H_SalemOaks I think the stigma that the relationship can't be supportive and understanding is one of the reasons for this. Some groups should remain closed, but having an open group enables everyone to learn more. #patientscientist #lcsm @SalemOaks
#LCSM Chat @lcsmchat
RT @drainpipe: @JFreemanDaily Totally agree that patients should own their data. Some online groups offer anonymous participation if Pharma involved. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @apassaroMD @lcsmchat @peggyddennis I imagine some docs need time away from patients to have a life and keep their own energies up, too. #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: @VirginiaMByrne @TimothyKruserMD @LungCancerFaces Some res/clin truly value the lived experiences of the pt/cg and want to be able to advocate for them and support their successes. These can't always be learned about in a research or medical setting #lcsm @salemoaks #patientengagement
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @apassaroMD @lcsmchat Sometimes medical vision for common situations can come through patients who are cared for by experts docs--especially when only a few treatment options are available and the patients have vetted their info with those experts. #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: @H_SalemOaks I think the stigma that the relationship can't be supportive and understanding is one of the reasons for this. Some groups should remain closed, but having an open group enables everyone to learn more. #patientscientist #lcsm @SalemOaks
Janet Freeman-Daily @JFreemanDaily
@apassaroMD @lcsmchat I would counter that patient groups focused on driving oncogenes contain more expert knowledge than many doctors possess. For example, how many docs do you know have experience with side effects of crizotinib? The ROS1ders do. #LCSM
Jamie Roger @JamieRoger8
@coristarlit I'm not sure that this is true statement that the clin/res/ would make it a less "safe" place to vent. Why does the stigma that these stakeholders are on opposite sides get in the way? Shouldn't the role of the res/clin be to help the pt/cg feel supported? #lcsm @SalemOaks
Inspire @teaminspire
@JamieRoger8 @SalemOaks You could be right. The group could shift from a more peer-to-peer dynamic to an ask-the-expert one, which is not wrong, but it's different, because the researcher/clinician opinions could be perceived as always being correct, and thus, those opinions are not challenged. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @apassaroMD @lcsmchat I would counter that patient groups focused on driving oncogenes contain more expert knowledge than many doctors possess. For example, how many docs do you know have experience with side effects of crizotinib? The ROS1ders do. #LCSM
#LCSM Chat @lcsmchat
RT @JamieRoger8: @coristarlit I'm not sure that this is true statement that the clin/res/ would make it a less "safe" place to vent. Why does the stigma that these stakeholders are on opposite sides get in the way? Shouldn't the role of the res/clin be to help the pt/cg feel supported? #lcsm @SalemOaks
Janet Freeman-Daily @JFreemanDaily
@H_SalemOaks @SalemOaks Do you have doctors that are experts on particular driving oncogenes, like ROS1? in this case, "expert" means treated dozens of patients with our rare subtype of lung cancer. #LCSM
#LCSM Chat @lcsmchat
RT @teaminspire: @JamieRoger8 @SalemOaks You could be right. The group could shift from a more peer-to-peer dynamic to an ask-the-expert one, which is not wrong, but it's different, because the researcher/clinician opinions could be perceived as always being correct, and thus, those opinions are not challenged. #lcsm
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