#LCSM Transcript
Healthcare social media transcript of the #LCSM hashtag.
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| Profile | Tweet |
|---|---|
 | 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 onl… |
 | 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 @maraantonoff RT @lcsmchat: #LCSM Chat Thurs 3/22 8pm ET, 5pm PT: Slicing the Pie–How Can Lung Cancer Patient Groups, Clinicians & Researchers Best Work … |
 | #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-fou… |
 | 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 |
 | coristarlit @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 co… |
| 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 |
 | Virginia M. Byrne @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… |
| 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 rese… |
| 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 |
| coristarlit @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 @jfowlerpharmd @LungCancerFaces Good evening! #lcsm 👋🏼 |
 | Gia Sonata @RedGia Gia here - popping in for a quick bit. #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 |
| Virginia M. Byrne @VirginiaMByrne Replying @LungCancerFaces I’m just outside Summit. #lcsm https://t.co/JHmkEQBJPe |
 | Timothy Craig Allen @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 j… |
| 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… |
| 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 j… |
| 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 j… |
| #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 sometime… |
| #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 j… |
| 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 @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 pri… |
 | 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 pri… |
| 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 pri… |
 | 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/e… |
| 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 researc… |
| #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… |
| 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 researc… |
| 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… |
| lysa buonanno @lysabee #lcsm T1 sharing research and supporting each other are most important to me. |
| Katie Brown @brownbeansprout RT @diianeee: 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 #lc… |
| #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 t… |
| #LCSM Chat @lcsmchat RT @BrendonStilesMD: T1. But I also think such forums should be an incredible engine for education and research. Particularly for patients… |
 | 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: 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… |
| #LCSM Chat @lcsmchat RT @diianeee: 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 #lc… |
| coristarlit @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 t… |
| 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 res… |
| 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… |
| 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… |
| H. Jack West, MD @JackWestMD RT @diianeee: T1: I like having a place to ask questions. I’m happy to call the people I have met friends! #lcsm |
| Timothy Craig Allen @TimAllenMDJD RT @coristarlit: T1) suppprt and advice in the beginning. Then advocacy and research seem to become more important after patients are more… |
| 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 @TimAllenMDJD RT @JFreemanDaily: T1) Patient/caregiver support, awareness/education, improve access to effective treatment/diagnosis, accelerate/fund res… |
| 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 @TimAllenMDJD RT @JackWestMD: T1) IMO, pt supports group are esp valuable for narrow subgrps like those w/uncommon/rare molec markers. Bridge geography t… |
| Danielle Pardue @Actorielle RT @TimothyKruserMD: T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding… |
| 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… |
| 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 ge… |
| 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 res… |
| #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… |
| #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 Chat @lcsmchat RT @TimothyKruserMD: T1. As we are able to subgroup NSCLC patients by molecular signatures these groups will become invaluable for finding… |
| #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 ge… |
| Danielle Pardue @Actorielle RT @brownbeansprout: T1 also not limted to office hours- online communities are always open for peer support and information gathering #lcsm |
| Gia Sonata @RedGia @JackWestMD T1 Online support groups were very helpful when I was first dx 3.5 yrs ago, but now I feel my life almost depends on hearing from ppl that are experiencing imunotherapy side effects not yet fully explored. Helps me keep my sanity (it's all relative!) #LCSM |
| Michele Bittikofer @MicheleBittiko1 Hi all...new to group n twitter #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 Chat @lcsmchat RT @RedGia: @JackWestMD T1 Online support groups were very helpful when I was first dx 3.5 yrs ago, but now I feel my life almost depends o… |
| 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, sec… |
| Danielle Pardue @Actorielle RT @brownbeansprout: Yes- info from peers as well as financial assurance, employment and legal issues, communication with medical team, sec… |
| 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… |
| #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, sec… |
| Danielle Pardue @Actorielle RT @JFreemanDaily: @TimothyKruserMD Sourcing clinical trials for specific subgroups of patients is one of the best uses for online patient… |
| 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… |
| #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 "en… |
| 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 "en… |
| 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 "en… |
| 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 |
| Janet Freeman-Daily @JFreemanDaily @TimothyKruserMD @JackWestMD Reinforcing a point is always welcome #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 |
 | 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… |
 | Nathan A. Pennell MD, PhD @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 ultimate… |
| #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… |
| 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 suppo… |
| 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 |
| Katie Brown @brownbeansprout Specific patient groups should not be encroached upon by researchers and marketers. #lcsm |
| Virginia M. Byrne @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 ultimate… |
| 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 a… |
| Heather McCullen @H_SalemOaks T2) This is a question I stress about a lot (especially in focused chats like #LCSM) |
| #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 suppo… |
| coristarlit @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 |
| Nathan A. Pennell MD, PhD @n8pennell 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 @fgrazz: @JackWestMD T2 - while there are 'lanes' one should stay in, the value of #SM is to facilitate collaboration from all involved… |
| #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… |
| 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 a… |
| #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 he… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T2) difficult question--some topics patients prefer discussing with other patients. But sometimes expert input would be… |
| #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… |
| #LCSM Chat @lcsmchat RT @teaminspire: @JackWestMD T2) Our experience is that researchers & clinicians, however well-intentioned, can sometimes have a chilling e… |
| #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 unde… |
| 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 he… |
| 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… |
 | 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: 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… |
| #LCSM Chat @lcsmchat RT @JackWestMD: Hence "lanes" MT @JFreemanDaily: T2) difficult Q-some topics pts prefer discussing w/other pts. But sometimes expert input… |
| 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 e… |
| 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 unde… |
| 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: 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 |
| #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… |
| 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 @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 ve… |
| #LCSM Chat @lcsmchat RT @setuvora: #lcsm patient support group should stay exclusively patient and family limited Too much risk of #COI |
| coristarlit @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 ve… |
| 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 |
 | Kristine Cherol @kscoon Joining late! T2- I know we were happy to know our doc, @n8pennell was involved in groups. I felt then he was even more invested. #lcsm https://t.co/SQlXD6MGLd |
| #LCSM Chat @lcsmchat RT @coristarlit: Yes, absolutely #lcsm https://t.co/zFNoR1uvAA |
| Gia Sonata @RedGia @Actorielle T2 - YES x100!!! #LCSM My center doesn't seem all that interested in the online groups. Seems like a wasted opportunity to me. Especially when you see the same type of issues with a particular treatment. Don't just brush it off because it's not in the manuf insert. |
| #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… |
| #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… |
| 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 |
| coristarlit @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, sec… |
| 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… |
| Janet Freeman-Daily @JFreemanDaily @BrendonStilesMD Fly safe! #lcsm |
| SetuVoraMD❤️🇺🇸🌏 @setuvora @JackWestMD All of the above! #LCSM |
| Timothy Craig Allen @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… |
| #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 @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 |
| #LCSM Chat @lcsmchat RT @kscoon: Joining late! T2- I know we were happy to know our doc, @n8pennell was involved in groups. I felt then he was even more investe… |
| Timothy Craig Allen @TimAllenMDJD RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al… |
| 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 @RedGia: @Actorielle T2 - YES x100!!! #LCSM My center doesn't seem all that interested in the online groups. Seems like a wasted oppo… |
| #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… |
| #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 mor… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al… |
| 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 |
| Nathan A. Pennell MD, PhD @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 |
| Danielle Pardue @Actorielle RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al… |
| #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 answ… |
| #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 wh… |
| #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… |
| 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: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patien… |
| 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 |
| Kristine Cherol @kscoon RT @n8pennell: T2: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patien… |
| 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: one for patients/caregivers, one for interaction across all mbrs of com… |
| #LCSM Chat @lcsmchat RT @Actorielle: @apassaroMD @JFreemanDaily @lcsmchat Exactly. Or it gets dismissed as having been just a general online search, as opposed… |
| #LCSM Chat @lcsmchat RT @TimothyKruserMD: @Actorielle Reasonable statement...others feel that clinicians and researchers should ideally be one in the same to mo… |
| Joni Fowler @jfowlerpharmd @JFreemanDaily You’re a pretty smart 🍪—do all groups have a lay moderator with your knowledge? That’s a nice prototype. #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 @n8pennell: T2: Sounds like there is a place for doc/patient interaction (duh like #LCSM) but also need for private venue that is patien… |
| 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… |
| Gia Sonata @RedGia @n8pennell T2: That's a valid point, especially in forums that are a bit more "social". However, I still think there is value in docs perusing the more established forums. My posts are more "formal" in a forum that I know a doc is participating in. #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 |
| Kristine Cherol @kscoon RT @jfowlerpharmd: @JFreemanDaily You’re a pretty smart 🍪—do all groups have a lay moderator with your knowledge? That’s a nice prototype.… |
| 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… |
| Danielle Pardue @Actorielle RT @JFreemanDaily: @JackWestMD It seems to work to have forum moderators have pipeline to expert clinicians/researchers to get the straight… |
| 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 @TomVargheseJr RT @JFreemanDaily: T2) Would be nice to have separate public forum where ROS1 clinicians, researchers, pharma, patients, caregivers, et al… |
| 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 -… |
| Tom Varghese Jr. MD @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… |
| Gia Sonata @RedGia @BrendonStilesMD Safe travels! #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… |
| Joni Fowler @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 |
| Kristine Cherol @kscoon T2- sometimes I miss the clinician voice or someone who knows the science to respond to questions besides just our own expert opinion from living with the disease/treatment. Esp on Facebook #lcsm https://t.co/mdPgd1oDp5 |
| Danielle Pardue @Actorielle RT @JFreemanDaily: @setuvora I honestly do not believe that pharma sponsorship sways treatment or trial recommendations made by lungcancer… |
 | Benjamin King, MD @BenjaminKingMD1 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… |
| #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 Chat @lcsmchat RT @JFreemanDaily: @JackWestMD It seems to work to have forum moderators have pipeline to expert clinicians/researchers to get the straight… |
| #LCSM Chat @lcsmchat RT @RedGia: @n8pennell T2: That's a valid point, especially in forums that are a bit more "social". However, I still think there is value… |
| #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 -… |
| #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 on… |
| 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 |
| Tim Kruser @TimothyKruserMD @peggyddennis I should modify that reply...the desire and skill to teach/inform certainly not limited to academic docs #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 Chat @lcsmchat RT @JFreemanDaily: @setuvora I honestly do not believe that pharma sponsorship sways treatment or trial recommendations made by lungcancer… |
| Nathan A. Pennell MD, PhD @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 w… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @peggyddennis Docs often do not have time for social media or patient communities, but some can answer occasional questi… |
| #LCSM Chat @lcsmchat RT @kscoon: T2- sometimes I miss the clinician voice or someone who knows the science to respond to questions besides just our own expert o… |
| Kristine Cherol @kscoon T3- I think we need both, projects and long term. Involvement in sub groups like @EGFRResisters to learn how pts with disease are handling treatments, what they need next, etc. #lcsm |
| #LCSM Chat @lcsmchat RT @JackWestMD: Thx. Discussion online pt groups. RT @BenjaminKingMD1: checking in here to #lcsm from Washington DC at the @ASTRO_org codin… |
| 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: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinar… |
| #LCSM Chat @lcsmchat RT @brownbeansprout: T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinar… |
| #LCSM Chat @lcsmchat RT @TimothyKruserMD: @peggyddennis I should modify that reply...the desire and skill to teach/inform certainly not limited to academic docs… |
| Danielle Pardue @Actorielle RT @n8pennell: T3: For rare subtypes (ROS1 etc) just the ability to find each other to make new patients aware of trials and changing stand… |
| #LCSM Chat @lcsmchat RT @n8pennell: T3: For rare subtypes (ROS1 etc) just the ability to find each other to make new patients aware of trials and changing stand… |
| 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 @kscoon: T3- I think we need both, projects and long term. Involvement in sub groups like @EGFRResisters to learn how pts with disease a… |
| #LCSM Chat @lcsmchat RT @sabinbmotwanimd: T3 The key to great research is having a multidisciplinary approach and to get people regularly talking whether face-t… |
 | 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-t… |
| Timothy Craig Allen @TimAllenMDJD RT @JFreemanDaily: 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: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm |
| Gia Sonata @RedGia @JackWestMD T3: That's a tough question! #lcsm |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T3: One model is for group leaders to partner with experts in their disease and discuss ways to accelerate research #lcsm |
| Kristine Cherol @kscoon RT @JFreemanDaily: T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique t… |
| Timothy Craig Allen @TimAllenMDJD RT @kscoon: T2- sometimes I miss the clinician voice or someone who knows the science to respond to questions besides just our own expert o… |
| Danielle Pardue @Actorielle RT @JFreemanDaily: T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique t… |
| #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 http… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T3: Another option is for patient groups to partner with nonprofit advocacy groups and develop research studies unique t… |
| 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 $$, the right patients, and the right ?'s. Online groups could help all 3 of those #lcsm |
| H. Jack West, MD @JackWestMD T3) @JFreemanDaily As in 1-2 designated researchers who have a potentially ongoing relationship w/the group? #lcsm |
| Anita Figueras @scifiknitter @jfowlerpharmd @JFreemanDaily Joni, I like this idea a lot! #lcsm |
| Janet Freeman-Daily @JFreemanDaily T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patients could make the most difference in research for our disease -- it will vary by disease #lcsm |
| Timothy Craig Allen @TimAllenMDJD Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf |
| Danielle Pardue @Actorielle RT @sabinbmotwanimd: T3 Everyone needs to do their homework. Online groups should meet regularly to determine what's most important to the… |
| #LCSM Chat @lcsmchat RT @sabinbmotwanimd: T3 Everyone needs to do their homework. Online groups should meet regularly to determine what's most important to the… |
| #LCSM Chat @lcsmchat RT @TimothyKruserMD: T3. Tough question. Barriers to research include $$, the right patients, and the right ?'s. Online groups could help a… |
| #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: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patien… |
| 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 a… |
| 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: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patien… |
| 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 @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 😊 |
| coristarlit @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 @BenjaminKingMD1 @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: 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: ROS1ders chose to focus on donating fresh tissue from our biopsies to create new cancer models--don't have enough RO… |
| Danielle Pardue @Actorielle RT @BenjaminKingMD1: @JackWestMD tough question but there is a role for online groups to facilitate pt perspective and even boost trial enr… |
| #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: 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 a… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @JackWestMD Yes, we have a couple of Principal Investigators working on ROS1-specific research projects to which we cont… |
| #LCSM Chat @lcsmchat RT @JackWestMD: T4) Is misinformation a significant concern in online patient-caregiver groups? Are there effective ways to limit misinform… |
| #LCSM Chat @lcsmchat RT @coristarlit: T3) raising $ to help fund research grants (esp ones that may not be funded otherwise) #lcsm |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T3: ROS1ders chose to focus on donating fresh tissue from our biopsies to create new cancer models--don't have enough RO… |
| Anita Figueras @scifiknitter RT @JFreemanDaily: T3: For the ROS1ders, I spent several hours over a period of months chatting with researchers to determine how we patien… |
| #LCSM Chat @lcsmchat RT @BenjaminKingMD1: @JackWestMD tough question but there is a role for online groups to facilitate pt perspective and even boost trial enr… |
| 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 |
| Kristine Cherol @kscoon T4- I think misinformation can happen anywhere but I haven’t seen a ton of it. Most people just know it’s experienced based advice/help. #lcsm |
 | 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: We talk with researchers about ongoing trials and help patients find trial that best meets their needs (easier with… |
| 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 |
| 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… |
| Benjamin King, MD @BenjaminKingMD1 T4 by sharing resources for medically sound info, as put out by groups like @ASTRO_org @RTAnswers_org #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: We talk with researchers about ongoing trials and help patients find trial that best meets their needs (easier with… |
| #LCSM Chat @lcsmchat RT @kscoon: T4- I think misinformation can happen anywhere but I haven’t seen a ton of it. Most people just know it’s experienced based adv… |
| Nathan A. Pennell MD, PhD @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: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclu… |
| H. Jack West, MD @JackWestMD RT @n8pennell: T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas?… |
| Kristine Cherol @kscoon T4- having experienced and knowledgeable moderators helps with misinformation and education. #lcsm |
| coristarlit @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 |
| Dave Bjork @bjork5 @BenjaminKingMD1 @JackWestMD I know some cancer researchers that love to meet with patients. Like @WhetstineLab John what say you? #lcsm |
| #LCSM Chat @lcsmchat RT @H_SalemOaks: T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclu… |
| Timothy Craig Allen @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:… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T3: Other groups chose to fund research grants (like ALK Positive) #lcsm |
| Katie Brown @brownbeansprout RT @JFreemanDaily: T3: Other groups chose to fund research grants (like ALK Positive) #lcsm |
| H. Jack West, MD @JackWestMD RT @H_SalemOaks: T4: What I notice more than misinformation, is a tendency to become echo chambers. So it's sort of misinformation by exclu… |
| #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:… |
| #LCSM Chat @lcsmchat RT @n8pennell: T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas?… |
| #LCSM Chat @lcsmchat RT @kscoon: T4- having experienced and knowledgeable moderators helps with misinformation and education. #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 se… |
| Kristine Cherol @kscoon RT @n8pennell: T4: Ooh I am excited to hear responses to this one. What happens when someone joins with strongly held but incorrect ideas?… |
| SunshineKK @SunshineKK68 Patient/caregiver groups important but specific Researchers can help with legit information and education #lcsm |
| Joni Fowler @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: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in the… |
| #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… |
| #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 &… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T4: We have patients who share misinformation. Moderators aim to share link to correct info gently, without criticism. #… |
| 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 @TomVargheseJr RT @TimAllenMDJD: Don't have time not to be on #SoMe #lcsm https://t.co/xZwUBv1jjf |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T4: If we don't know the answer to a question, we check with an expert. #lcsm |
| Kristine Cherol @kscoon T4- If I’m not a moderator, I just ignore it, or try to provide evidence from trials or scientific fact. Everyone knows someone who was cured by a special water or herb. You get used to it being a pt or caregiver. #lcsm @JackWestMD https://t.co/TksUboxvDf |
| #LCSM Chat @lcsmchat RT @JackWestMD: Agree. Any issues w/outliers? RT @kscoon: T4- having experienced & knowledgeable moderators helps w/misinformation & educat… |
| 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 y… |
| 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: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in the… |
| 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:… |
| Janet Freeman-Daily @JFreemanDaily @JackWestMD @kscoon Yes, we have issues with outliers. Those who are intransigent leave, or in worst case, blocked. #lcsm |
| Gia Sonata @RedGia RT @setuvora: @JackWestMD T4: #LCSM with availability of online resources, motivated and educated pt/fam can truly become ‘experts ‘ in the… |
| 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 @kscoon: T4- If I’m not a moderator, I just ignore it, or try to provide evidence from trials or scientific fact. Everyone knows someone… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T4: And as a global group, we're learning the "correct" answer in the USA is not necessarily the correct answer in anoth… |
| #LCSM Chat @lcsmchat RT @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'… |
| #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 |
 | Pallavi A. Patil, MD @PPatilMD RT @kscoon: T2- sometimes I miss the clinician voice or someone who knows the science to respond to questions besides just our own expert o… |
| Kristine Cherol @kscoon T4- I agree! It’s important to have a doc who will respect that expertise and listen to concerns. They honor what you might bring to the table. John and I had that in @n8pennell #lcsm https://t.co/JFxxPpQfW0 |
| #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 @PPatilMD 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 @PPatilMD RT @TimAllenMDJD: #EvidenceBasedMedicine And #NoStigma #lcsm https://t.co/nYbcypmQpi |
| coristarlit @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 |
 | Tessa Sheldon @tessa_perrin Not much to add these days, but I'm here and following #LCSM |
| Janet Freeman-Daily @JFreemanDaily @SunshineKK68 Yes, interaction with experts is great (https://t.co/DoJNau8r1d proves that), but can also stifle other discussions. #lcsm |
| 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 |
| Gia Sonata @RedGia @JackWestMD T4: Rest assured, I think most pts stay away from the coffee enemas :) #lcsm |
| Janet Freeman-Daily @JFreemanDaily T4: We are considering creating occasional online "open house" with experts to field questions directly #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 |
| 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 |
| #LCSM Chat @lcsmchat RT @kscoon: T4- I agree! It’s important to have a doc who will respect that expertise and listen to concerns. They honor what you might bri… |
| #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 ar… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @SunshineKK68 Yes, interaction with experts is great (https://t.co/DoJNau8r1d proves that), but can also stifle other di… |
| Janet Freeman-Daily @JFreemanDaily T4: Other groups do this as an "Ask Me Anything" (AMA) event #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… |
| #LCSM Chat @lcsmchat RT @RedGia: @JackWestMD T4: Rest assured, I think most pts stay away from the coffee enemas :) #lcsm |
| Kristine Cherol @kscoon RT @apassaroMD: @setuvora @lcsmchat @JackWestMD I think that an Expert Should be a Doc, able to interact with patients and caregivers! #lcsm |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T4: We are considering creating occasional online "open house" with experts to field questions directly #lcsm |
| #LCSM Chat @lcsmchat RT @JackWestMD: T4) @JFreemanDaily Re: correct approach in US vs. other places, do you mean d/t drug access differences? cultural diffs? #… |
| #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 n… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: T4: Other groups do this as an "Ask Me Anything" (AMA) event #lcsm |
| Benjamin King, MD @BenjaminKingMD1 @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 |
| Kristine Cherol @kscoon But a lot of times patients and caregivers become experts by experience. That should be respected. Just look at @JFreemanDaily #lcsm https://t.co/VFgjHvW6Rl |
| 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: correct approach in US vs. other places, do you mean d/t drug access differences? cultural diffs? #… |
| Danielle Pardue @Actorielle RT @JFreemanDaily: @JackWestMD Different countries have different standard of care, drug availability, testing standards, insurance coverag… |
| 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 |
| coristarlit @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 |
 | Sbio @SJKBio RT @JackWestMD: T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involv… |
| Gia Sonata @RedGia #LCSM - good conversation tonight but I need to run. Hope you all have a great Friday! |
| Antonio Passaro MD PhD @APassaroMD RT @JFreemanDaily: 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 involv… |
 | 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 |
| 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! |
| Jeffrey E Poehlmann @drainpipe T4 Agree that knowledgeable mods are necessary, guidelines about posting are helpful, and respectful replies with links work well. #lcsm |
| Gia Sonata @RedGia @JFreemanDaily @JackWestMD haha! That's exactly how I felt when I first read it online. #lcsm |
| 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… |
| #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 coverag… |
| #LCSM Chat @lcsmchat RT @kscoon: But a lot of times patients and caregivers become experts by experience. That should be respected. Just look at @JFreemanDaily… |
| #LCSM Chat @lcsmchat RT @JackWestMD: T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involv… |
| #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 htt… |
| 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 abou… |
| #LCSM Chat @lcsmchat RT @scifiknitter: T4 Some form of leadership/moderation needed to deal with potential for misinformation - and people looking for a market… |
| 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… |
| 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 p… |
| 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 |
| LungCancer.net @LungCancer_HU RT @drainpipe: T4 Agree that knowledgeable mods are necessary, guidelines about posting are helpful, and respectful replies with links work… |
| Heather McCullen @H_SalemOaks #LCSM https://t.co/0vPJfiYxXj |
| 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 |
| Kristine Cherol @kscoon T5- I personally think having pharma involved shows us they’re invested. They can learn from pt experiences first hand. #lcsm https://t.co/PT5A7vTdDY |
| SunshineKK @SunshineKK68 patients need patient-patient interactions AND patient-expert interations-different but important #lcsm |
| Sbio @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… |
| 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 |
| Danielle Pardue @Actorielle RT @JFreemanDaily: T5: The ROS1ders (as well as all other oncogene-focused pt groups thus far) is not legal entity and so doesn't qualify a… |
| 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 |
| 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 car… |
 | 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/uW6t9JQ… |
| 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: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to wo… |
| LUNGevity Foundation @LUNGevity RT @brownbeansprout: T3 we @lungevity partner with researchers to inform lc community about trials and research studies #lcsm |
| Kristine Cherol @kscoon T5- Yes! Being open and honest is important. Just like when doctors declare which pharma companies they have relationships with #lcsm https://t.co/0nggykytRD |
| Peggy Dennis @peggyddennis T5) @JackWestMD Agree - transparency is a must but yes, could be very useful in moving the field forward. #lcsm |
| Kristine Cherol @kscoon RT @JackWestMD: T5) It seems nobody is concerned that industry support/involvement is inappropriate if it can help move field forward. Corr… |
| 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 pati… |
| Antonio Passaro MD PhD @APassaroMD RT @JFreemanDaily: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to wo… |
| 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: The ROS1ders (as well as all other oncogene-focused pt groups thus far) is not legal entity and so doesn't qualify a… |
| Jeffrey E Poehlmann @drainpipe T5 @JackWestMD I would concur. Shared goals are shared goals -- helping one industry helps us all. #lcsm |
| Timothy Craig Allen @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 |
| Kristine Cherol @kscoon T5- I personally agree. If the field is moving forward, I find that to be the most important thing. #lcsm https://t.co/G2ffyd86RX |
| #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… |
| #LCSM Chat @lcsmchat RT @kscoon: T5- I personally think having pharma involved shows us they’re invested. They can learn from pt experiences first hand. #lcsm h… |
| #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 s… |
| #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 car… |
| 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 pati… |
| 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. Corr… |
| 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 pati… |
| 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: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to wo… |
| Danielle Pardue @Actorielle RT @TimAllenMDJD: Ethics matter. #lcsm https://t.co/gNVuOo5Vuk |
| #LCSM Chat @lcsmchat RT @kscoon: T5- Yes! Being open and honest is important. Just like when doctors declare which pharma companies they have relationships with… |
| 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… |
| #LCSM Chat @lcsmchat RT @TimothyKruserMD: @JackWestMD We would have to dive way into politics, funding of NIH, corporate taxes, etc to really address moving awa… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @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… |
| #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 |
| Geri Massa @GeriGerim13 #LCSM https://t.co/gueXy8vsjE |
| #LCSM Chat @lcsmchat RT @kscoon: T5- I personally agree. If the field is moving forward, I find that to be the most important thing. #lcsm https://t.co/G2ffyd86… |
| Anita Figueras @scifiknitter RT @JFreemanDaily: @JackWestMD T5: As long as we're all working towards the same goal--better outcomes for patients--we can find ways to wo… |
| #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 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 thei… |
| 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 @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… |
| LUNGevity Foundation @LUNGevity RT @brownbeansprout: T3: partner by moderating an expert forum w/in a patient group, an ask the experts forum or blog, tweet chats, webinar… |
| 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 thei… |
| #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 thei… |
| #LCSM Chat @lcsmchat RT @JamieRoger8: @Actorielle I agree, i think participating in the patient/ caregiver forums would be an ideal classroom for researchers to… |
| #LCSM Chat @lcsmchat RT @JackWestMD: 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: #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 hap… |
| #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 import… |
| coristarlit @coristarlit @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 RT @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 |
| Timothy Craig Allen @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 hap… |
| 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 |
| 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 |
| Faces of Lung Cancer @LungCancerFaces Thanks for moderating @JackWestMD! #lcsm |
| Kristine Cherol @kscoon Honestly haven’t thought that much about it, probably a bad thing on my part! I know some subgroups require you to answer questions to join and are closed. #lcsm https://t.co/eQeXU82lkO |
| 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 int… |
| #LCSM Chat @lcsmchat RT @coristarlit: @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. |
| #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… |
| 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 int… |
| #LCSM Chat @lcsmchat RT @TimAllenMDJD: Yes. Suggest cautious, watchful approach for the moment. #lcsm https://t.co/v4GU8rJZr5 |
| Timothy Craig Allen @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 w… |
| #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 ju… |
| 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 |
| #LCSM Chat @lcsmchat RT @kscoon: Honestly haven’t thought that much about it, probably a bad thing on my part! I know some subgroups require you to answer quest… |
| Timothy Craig Allen @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 w… |
| #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 @TimAllenMDJD Yes, thank you, @JackWestMD It has been a privilege to participate. #lcsm https://t.co/MjFNeWBUg2 |
| Danielle Pardue @Actorielle Thank you, my friends! A brilliant hour as always! 💚 #LCSM |
| 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? |
| 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 @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. Wil… |
| #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,… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner… |
| Danielle Pardue @Actorielle RT @JFreemanDaily: CT: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner… |
| 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 |
| Kristine Cherol @kscoon It already does. As soon as I became active in LC community, my ads became cancer based and LC drugs with ad campaigns like Opdivo and Keytruda. #lcsm https://t.co/qkUhy0UxPl |
| Benjamin King, MD @BenjaminKingMD1 #lcsm thanks for a great session everyone! Goodnight |
| Dave Bjork @bjork5 Thanks John! @WhetstineLab #lcsm @lcsmchat 👍 https://t.co/xpYdDi0wbq |
| SetuVoraMD❤️🇺🇸🌏 @setuvora RT @kscoon: It already does. As soon as I became active in LC community, my ads became cancer based and LC drugs with ad campaigns like Opd… |
| 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: Oncogene-focused online patient-caregiver groups have a lot of potential, and are still defining how best to partner… |
| #LCSM Chat @lcsmchat RT @JamieRoger8: @JFreemanDaily I agree, in my experience it's effective to have the researcher/clinician present during patient groups to… |
| 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 @kscoon: It already does. As soon as I became active in LC community, my ads became cancer based and LC drugs with ad campaigns like Opd… |
| #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… |
| #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, i… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @apassaroMD @lcsmchat @peggyddennis Researchers that work clinic hours, field emails from patients, run research labs, w… |
| 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… |
| #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 e… |
| #LCSM Chat @lcsmchat RT @JamieRoger8: @VirginiaMByrne @TimothyKruserMD @LungCancerFaces Some res/clin truly value the lived experiences of the pt/cg and want to… |
| #LCSM Chat @lcsmchat RT @JFreemanDaily: @apassaroMD @lcsmchat Sometimes medical vision for common situations can come through patients who are cared for by expe… |
| #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… |
| 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 tha… |
| #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 d… |
| 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 on… |
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