#LCSM Transcript

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

Sign up for FREE Symplur Account and Get
  • Create Transcripts with Custom Dates
  • Get Custom Influencer Lists
  • 3x Hashtag Search Results
Sign Up Now
ProfileTweet
Janet Freeman-Daily @JFreemanDaily
Welcome to #LCSM Chat! Tonight we will be discussing “Expanding Access to Cancer Clinical Trials.” More info on our blog at https://t.co/KBsE6cSmaG
Tiffini Joseph @Smiles4Nana
RT @JFreemanDaily: Welcome to #LCSM Chat! Tonight we will be discussing “Expanding Access to Cancer Clinical Trials.” More info on our blog…
Janet Freeman-Daily @JFreemanDaily
I’m your moderator Janet Freeman-Daily (writer, science geek, #lungcancer patient/research advocate). With me is tonight’s special guest Stacey Tinianov (@coffeemommy), #breastcancer patient/research advocate extraordinaire. Welcome Stacey! #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily Waving (and virtual elbow-tapping?!?) from Northern California, thrilled to be here with you all #lcsm
Janet Freeman-Daily @JFreemanDaily
We'll get started in a few minutes -- please take a moment to introduce yourselves #LCSM
kristen kimball @KimballKristen
@JFreemanDaily @coffeemommy It’s Kris, signing in properly this time w/ hashtag #LCSM, still from Boston!
Alicia C. Staley @stales
RT @JFreemanDaily: Welcome to #LCSM Chat! Tonight we will be discussing “Expanding Access to Cancer Clinical Trials.” More info on our blog…
Tiffini Joseph @Smiles4Nana
Tiffini Joseph joining from south Florida. Hi everyone #LCSM
Janet Freeman-Daily @JFreemanDaily
@KimballKristen @coffeemommy Welcome Kris! #LCSM Glad you could join us.
Christine Qiong Wu @wi_qiong
@JFreemanDaily @coffeemommy I'm here, Christine. #lcsm
Alicia C. Staley @stales
@JFreemanDaily Hi there! Alicia - 3x cancer survivor, co-founder of #BCSM checking in to say hi and watch the chat. Great topic! #LCSM
Janet Freeman-Daily @JFreemanDaily
My usual sidekick @LungCancerFaces is busy with grandmotherly duties tonight, so I'm grateful Stacey is my copilot tonight. #LCSM
Christine Qiong Wu @wi_qiong
@JFreemanDaily @coffeemommy I'm Christine, #lcsm, @JFreemanDaily
Stacey Tinianov @coffeemommy
@stales @JFreemanDaily Welcome Alicia! {virtual hug} So excited to have you here! #lcsm #bcsm
Laura Mezquita @LauraMezquitaMD
RT @MariaBluthgen: #masterclass Cancer de Pulmón. @NicolasMinatta @GRecondoMD @LauraMezquitaMD #LCSM https://t.co/KJyWHTik7c
Sara Whitlock @sjwhitlock
Sara here. Working on 10 years with stage IV NSCLC! #LCSM
coristarlit @coristarlit
@JFreemanDaily @coffeemommy Cori here, joining from Northern CA! #LCSM
Janet Freeman-Daily @JFreemanDaily
Hi Tiffini, Christine and Alicia! Thanks for dropping in. #LCSM
Alicia C. Staley @stales
@coffeemommy @JFreemanDaily hey there! how are you. #LCSM
Janet Freeman-Daily @JFreemanDaily
Welcome Cori and Sara! #LCSM
Peggy Dennis @peggyddennis
Peggy here from Denver. Waiting on biopsy results to determine eligibility for 3 clinical trials @ UCH #lcsm
Stacey Tinianov @coffeemommy
@JFreemanDaily @LungCancerFaces No adult supervision! Look out y'all! ❤️ #lcsm #bcsm #gyncsm
Stacey Tinianov @coffeemommy
@peggyddennis Welcome Peggy! Sending {hugs} for the wait... waiting is the worst. #lcsm
Janet Freeman-Daily @JFreemanDaily
@stales @coffeemommy Rolling with the evolving #COVID19Seattle situation. #LCSM
Janet Freeman-Daily @JFreemanDaily
Hi Peggy! #LCSM
Janet Freeman-Daily @JFreemanDaily
If you are new to Twitter chats and/or #LCSM Chat, you might find our primer on how to participate helpful https://t.co/5g28sSQQLb
Janet Freeman-Daily @JFreemanDaily
Please remember to use #lcsm in all your tweets so others participating in the chat can see them. #LCSM
Laura Greco @lgreco_ny
Greetings from upstate NY! #lcsm
Janet Freeman-Daily @JFreemanDaily
I will announce FOUR topics (T1 T2 etc). Pls label your answers with T1, T2, etc to make transcript easier to follow. #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily @stales And #HIMSS20 was cancelled due to #COVID19 so I'm looking at an open calendar next week 🙃 #lcsm
Janet Freeman-Daily @JFreemanDaily
We’ll start with Topic T1 in a minute …#LCSM
Stacey Tinianov @coffeemommy
@lgreco_ny *happy dance* LAURA! {hug} #lcsm
Janet Freeman-Daily @JFreemanDaily
@lgreco_ny Hi Laura! #LCSM
Janet Freeman-Daily @JFreemanDaily
T1. What are the barriers to cancer clinical trial participation and enrollment? #LCSM
Christine Qiong Wu @wi_qiong
@lgreco_ny how are you? #lcsm @lgreco_ny
Lillian Leigh @ProjectBreath
Hi to the #LCSM community, LIVE from a workshop in Sydney Australia on increasing diversity in #CancerResearch. #DiverseResearch https://t.co/lVrkEGxQxl
Sara Whitlock @sjwhitlock
T1. Admission criteria. #LCSM
Inspire @teaminspire
Hi all, John Novack from Inspire checking in to #LCSM.
Janet Freeman-Daily @JFreemanDaily
@ProjectBreath Hey Lillian! Welcome. #LCSM
Inspire @teaminspire
RT @JFreemanDaily: T1. What are the barriers to cancer clinical trial participation and enrollment? #LCSM
Stacey Tinianov @coffeemommy
Awareness, restrictive exclusion criteria, geographic access, financial & logistical considerations all remain significant barriers for many across all cancer types. Also big confusion around what clinical trials are and are not. T1 #lcsm #bcsm #gyncsm
Laura Greco @lgreco_ny
@JFreemanDaily T1: I think time and money are two big ones. #lcsm
Janet Freeman-Daily @JFreemanDaily
#Clinicaltrials aim to understand the risks and benefits of a treatment in a specific population or disease. Hopefully the results can be applied to all who have the disease. #LCSM https://t.co/I8LdPSzNfK
Tiffini Joseph @Smiles4Nana
So, I just switched careers and now am a LC research RN. So far, The inclusion/exclusion criteria can be so tight #LCSM
kristen kimball @KimballKristen
T1 I expect some barriers include lack of knowledge on part of patient, perhaps even physician; distance from major research centers where trials are held; and false perception that they “could get the placebo” #LCSM
Janet Freeman-Daily @JFreemanDaily
Hi John and Narjust! #LCSM
Alicia C. Staley @stales
RT @JFreemanDaily: #Clinicaltrials aim to understand the risks and benefits of a treatment in a specific population or disease. Hopefully t…
Tiffini Joseph @Smiles4Nana
T1 and not enough referrals to studies #LCSM
Janet Freeman-Daily @JFreemanDaily
Globally, about 3/4 of people surveyed were willing to participate in a clinical trial, yet only 8% of adult US cancer patients participate in NCI or industry clinical trials. Why?#LCSM
Alicia C. Staley @stales
Please join in #LCSM chat going on now.
Alicia C. Staley @stales
RT @JFreemanDaily: T1. What are the barriers to cancer clinical trial participation and enrollment? #LCSM
Janet Freeman-Daily @JFreemanDaily
Patients site many reasons for not participating in clinical trials #LCSM https://t.co/yZjD7tZLsJ
Laura Greco @lgreco_ny
@Smiles4Nana Yes! Too often, doctors only will refer to trials within their institution. It happened to me more than once. #lcsm
Stacey Tinianov @coffeemommy
@Smiles4Nana This is a big one. Most clinical trials are run out of academic medical centers, community oncology practices don't necessarily have the time/resources to trial find. #lcsm
Devika Das,MD @DevikaDasMD
@JFreemanDaily A1 Lack of availability of trials at sores other than the big referral centers is a big issues. #lcsm Trials should come to patients not the other way around
Janet Freeman-Daily @JFreemanDaily
A study by Unger found that more than half of all cancer patients did not participate in #clinicaltrials because no trial was available. #LCSM
Peggy Dennis @peggyddennis
#Ditto on inclusion/exclusion. Patient numbers for enrollment can be too small #lcsm
Sara Whitlock @sjwhitlock
So many think it is last ditch option #LCSM
Stacey Tinianov @coffeemommy
RT @KimballKristen: T1 I expect some barriers include lack of knowledge on part of patient, perhaps even physician; distance from major res…
Devika Das,MD @DevikaDasMD
@JFreemanDaily Centers not sores #lcsm 🤦🏽‍♀️
Lillian Leigh @ProjectBreath
T1 Spending the day talking about language being one of the biggest barrier. Some trials exclude non-English speakers. #LCSM https://t.co/ocjJpfseeC
Janet Freeman-Daily @JFreemanDaily
RT @DevikaDasMD: @JFreemanDaily A1 Lack of availability of trials at sores other than the big referral centers is a big issues. #lcsm Trial…
Inspire @teaminspire
RT @JFreemanDaily: Patients site many reasons for not participating in clinical trials #LCSM https://t.co/yZjD7tZLsJ
Janet Freeman-Daily @JFreemanDaily
Patients with rare diseases may spend a long time searching for a clinical trial that will accept them. https://t.co/FuJS6NtdMw #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily Having spent an hour of my day working on a response to the @nlm_news effort underway to “Modernize Clinical Trials” https://t.co/jfv4XBcJxw, I would say some of the issues are in the way the information is cataloged/tagged. HARD to search. #lcsm
Alicia C. Staley @stales
RT @JFreemanDaily: Patients with rare diseases may spend a long time searching for a clinical trial that will accept them. https://t.co/Fu…
Janet Freeman-Daily @JFreemanDaily
Topic T2 is coming up … #LCSM
Tiffini Joseph @Smiles4Nana
T1: not enough patient reimbursement for copays when providing standard of care, travel expenses etc... #LCSM
Alicia C. Staley @stales
RT @ProjectBreath: T1 Spending the day talking about language being one of the biggest barrier. Some trials exclude non-English speakers.…
Alicia C. Staley @stales
RT @JFreemanDaily: A study by Unger found that more than half of all cancer patients did not participate in #clinicaltrials because no tria…
Barbara L. Kornblau @BarbaraKornblau
RT @JFreemanDaily: Patients with rare diseases may spend a long time searching for a clinical trial that will accept them. https://t.co/Fu…
Alicia C. Staley @stales
RT @DevikaDasMD: @JFreemanDaily A1 Lack of availability of trials at sores other than the big referral centers is a big issues. #lcsm Trial…
Alicia C. Staley @stales
RT @coffeemommy: @Smiles4Nana This is a big one. Most clinical trials are run out of academic medical centers, community oncology practices…
coristarlit @coristarlit
@JFreemanDaily I think Geography and finances are two biggest reasons. For those who don’t live close to the institution that is doing the clinical trial, it is going to cost an arm and a leg to participate. #LCSM
Janet Freeman-Daily @JFreemanDaily
Barriers to clinical trials may be structural (finding an available trial where the patient is able to go), clinical (patient characteristics must meet eligibility requirements), physician-based (discussing/offering trials), or patient-based (concerns about enrollment). #LCSM
Devika Das,MD @DevikaDasMD
@JFreemanDaily A1 Also restrictive inclusion criteria to trials is a big barrier #lcsm
Janet Freeman-Daily @JFreemanDaily
T2. How might awareness of clinical trials be increased?#LCSM
Stacey Tinianov @coffeemommy
@sjwhitlock This is such a big issue. Still a big misconception in more than just the patient community. #lcsm
Christine Qiong Wu @wi_qiong
@JFreemanDaily I think the lack of information is an obstacle. For example, for phase 1 clinical trial, how much is the success rate (how many of phase 1 clinical trials entered phase 2?) What is the phase 1 clinical trial like? #lcsm @JFreemanDaily
Participatory Med @S4PM
RT @ePatientDave: Love it! "Help me see the dragon I'm slaying": pathologists meeting w patients, in @ArchivesPath. @S4PM Blog @Wellforce
Laura Greco @lgreco_ny
T1: Time it takes to get onto trial could matter too. It took more than three weeks to get on mine and I was worried. Some may not be able to wait. #lcsm
Stacey Tinianov @coffeemommy
@wi_qiong @JFreemanDaily Or, for many, what do the phases even mean? Definitely varied levels of health and scientific literacy out there. We need to meet people where they are in that respect! #lcsm
Peggy Dennis @peggyddennis
T2 Make it easier for patients to find clinical trials via web sites that specialize in C/T's. Then offer help with followthrough. #lcsm
Tiffini Joseph @Smiles4Nana
It would be nice if there was a registry that oncologists could participate in that could identify some basic qualifying factors for referral/notification to study centers #LCSM
april knowles @akknowles1
RT @JFreemanDaily: T1. What are the barriers to cancer clinical trial participation and enrollment? #LCSM
kristen kimball @KimballKristen
@lgreco_ny and if the trial requires a long washout period from former treatment, that is frightening #LCSM
Stacey Tinianov @coffeemommy
@lgreco_ny Oooh! And can we talk "washout periods" - no bueno. #lcsm
coristarlit @coristarlit
Whoops. Forgot #LCSM tag
Laura Greco @lgreco_ny
T2: I think patient testimonials can be quite powerful. #lcsm
Inspire @teaminspire
RT @JFreemanDaily: T2. How might awareness of clinical trials be increased?#LCSM
Showtime @withspin
RT @JFreemanDaily: A study by Unger found that more than half of all cancer patients did not participate in #clinicaltrials because no tria…
Stacey Tinianov @coffeemommy
@JFreemanDaily Awareness gaps & needs are two-sided. Often many clinicians are not aware of best clinical trial options & hard to get a handle over that much swiftly changing information. Advocacy groups can (and do!) educate patients but we need better search tools to find the best fit. #lcsm
Inspire @teaminspire
RT @coffeemommy: @JFreemanDaily Having spent an hour of my day working on a response to the @nlm_news effort underway to “Modernize Clinica…
Janet Freeman-Daily @JFreemanDaily
@coristarlit Yep, that #LCSM tag really helps those of us in the chat see your tweets!
Tiffini Joseph @Smiles4Nana
Agree!!
Alicia C. Staley @stales
RT @coristarlit: Whoops. Forgot #LCSM tag https://t.co/7LNoNNHuyC
Laura Greco @lgreco_ny
RT @KimballKristen: @lgreco_ny and if the trial requires a long washout period from former treatment, that is frightening #LCSM
Lillian Leigh @ProjectBreath
T2 Some great suggestions by @cancer_K2A to increase awareness of #clinicaltrials in culturally and linguistically diverse background. #LCSM #DiverseResearch https://t.co/7osSqnigT8
Stacey Tinianov @coffeemommy
@peggyddennis Hoping that the Clinical Trials Modernization Effort can address some of those things upfront. The comment period is currently OPEN and closes 3/14. Add your thoughts here: https://t.co/5PYweVPWu0 #lcsm #bcsm
Lecia Sequist, MD, MPH @LeciaSequist
#LCSM joining late from Boston
coristarlit @coristarlit
@JFreemanDaily T2. I don’t know if awareness is a problem. I think most patients know clinical trials are out there, but they assume their doctor will tell them its an option. Many don’t realize that if a trial isn’t at that doctors hospital, it is very likely they don’t know about it. #LCSM
april knowles @akknowles1
@UppityCancerP I always say too bad Buddha didn’t get cancer. It would have saved him a lot of time. You get cancer and are automatically enlightened. #cancer #bcsm #LCSM
Laura Greco @lgreco_ny
RT @coffeemommy: @peggyddennis Hoping that the Clinical Trials Modernization Effort can address some of those things upfront. The comment p…
Janet Freeman-Daily @JFreemanDaily
Alas, #LCSM Chat retweets from @lcsmchat account are languishing without the nimble fingers of @LungCancerFaces... #LCSM
Dr. David Tom Cooke @DavidCookeMD
A2 I think some of the cultural barriers should be addressed. For instance, many in the African-American communities are reluctant to participate in CT because of the Tuskegee syphilis debacle. #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @ProjectBreath: T2 Some great suggestions by @cancer_K2A to increase awareness of #clinicaltrials in culturally and linguistically diver…
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @peggyddennis Hoping that the Clinical Trials Modernization Effort can address some of those things upfront. The comment p…
Lecia Sequist, MD, MPH @LeciaSequist
@Smiles4Nana Such a resource exists (https://t.co/tRPn2C2DNo) but unfortunately it's not as user-friendly as one might wish #LCSM
Janet Freeman-Daily @JFreemanDaily
Thanks for sharing that link, @coffeemommy! #Cancer patient advocates, send your suggestions in SOON! #LCSM
kristen kimball @KimballKristen
T2 Outreach should address the fact that, at least for #lungcancer , clinical trials are NOT the “last option” but may very well be the first. #LCSM
Janet Freeman-Daily @JFreemanDaily
@LeciaSequist Welcome Lecia! And apologies to any I've neglected to welcome. #LCSM
Tiffini Joseph @Smiles4Nana
@LeciaSequist Yes, more user friendly. Something simple. Pt has dx, entered into system and study nurse is alerted. Even if not large scale. Would be helpful in center participating in trials. There are many patients that still don’t get referred #LCSM
Janet Freeman-Daily @JFreemanDaily
We’ll shift to Topic T3 next … #LCSM
Laura Greco @lgreco_ny
@LeciaSequist @Smiles4Nana It is also frequently wrong and out of date. That search engine needs to change! #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @LeciaSequist: @Smiles4Nana Such a resource exists (https://t.co/tRPn2C2DNo) but unfortunately it's not as user-friendly as one might wi…
Laura Greco @lgreco_ny
RT @JFreemanDaily: Thanks for sharing that link, @coffeemommy! #Cancer patient advocates, send your suggestions in SOON! #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @DavidCookeMD: A2 I think some of the cultural barriers should be addressed. For instance, many in the African-American communities are…
Christine Qiong Wu @wi_qiong
@coristarlit @JFreemanDaily I supposed the doctors should be the first one to know, should they? #lcsm
Janet Freeman-Daily @JFreemanDaily
@DavidCookeMD Hey there @DavidCookeMD! #LCSM
Janet Freeman-Daily @JFreemanDaily
T3. How might eligibility requirements be modernized to help increase clinical trial enrollment? #LCSM
Sara Whitlock @sjwhitlock
T2. Aren’t they revamping the clinical trial site? #LCSM
Dr. David Tom Cooke @DavidCookeMD
Ola! #LCSM
Stacey Tinianov @coffeemommy
@LeciaSequist @Smiles4Nana Indeed, thus the CT Modernization Effort by @nlm_news Yes, I feel like a broken record tonight but hoping you all share your thoughts - and I'm happy to help if you want to submit! The comment period is currently OPEN and closes 3/14. #lcsm #bcsm https://t.co/5PYweVPWu0
Devika Das,MD @DevikaDasMD
@JFreemanDaily A3 Revamp clinical https://t.co/zemw9WM7vK to have a user friendly interface ( for both providers and patients ) All cancer center websites should also have the same. This needs to be publication available information and yet it’s not always the case #lcsm
Dr. David Tom Cooke @DavidCookeMD
A3, remove the "other solid organ tumor within 5 years" exclusion. #LCSM
Laura Greco @lgreco_ny
@coffeemommy @LeciaSequist @Smiles4Nana @nlm_news Do you have a sample template of comments? #lcsm
Janet Freeman-Daily @JFreemanDaily
Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LCSM https://t.co/uZvpxZyhKI
Sara Whitlock @sjwhitlock
@JFreemanDaily Not shocked AT ALL!#LCSM
Janet Freeman-Daily @JFreemanDaily
3 common characteristics (history of cancer, brain mets, high creatinine) can exclude almost half of advanced-stage NSCLC patients from clinical trials. Broadening these eligibility criteria would make almost twice as many patients eligible. #LCSM https://t.co/9sGA6r8p8j
Stacey Tinianov @coffeemommy
@lgreco_ny @LeciaSequist @Smiles4Nana @nlm_news I do not. I tend to write mine as a letter and upload but the link allows you to fill in the comment boxes. Working on my personal letter now and working with advocacy groups to create a multi-institution letter. Happy to include you! #lcsm
Alicia C. Staley @stales
RT @JFreemanDaily: Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LC
Laura Greco @lgreco_ny
Yes! #lcsm
Dr. David Tom Cooke @DavidCookeMD
Agree. I believe many trials are loosening the creatinine restrictions. #LCSM
Janet Freeman-Daily @JFreemanDaily
As science advances, trials are becoming more complex. The number of exclusion criteria in #lungcancer clinical trials has been increasing. #LCSM https://t.co/sAGxPSyMP1
Stacey Tinianov @coffeemommy
@DevikaDasMD @JFreemanDaily This is in process - comment period is open until 3/14 https://t.co/5PYweVPWu0 #lcsm #bcsm #gyncsm
patty spears @paspears88
@JFreemanDaily My favorite figure from this paper...an aha moment in a graph. Patients aren't the issue, the system needs to change and trials need to include more patients. #lcsm
Lecia Sequist, MD, MPH @LeciaSequist
@JFreemanDaily @Lungevity has done so much great advocacy to push pharma and FDA on this front. Things like not excluding pts w/ a h/o another cancer, with brain mets. They are working on remote consenting now #LCSM
coristarlit @coristarlit
@wi_qiong @JFreemanDaily In my experience there are hundreds of clinical trials out there and 99% of onc’s cannot keep up to date with all of them. Especially since the criteria varies so widely. They do know the trials that they currently have at their own hospital. #LCSM
Laura Greco @lgreco_ny
T3: drop whenever possible the brain met exclusion. #lcsm
Stacey Tinianov @coffeemommy
@sjwhitlock Yes, yes and they're looking for feedback now! #lcsm https://t.co/5PYweVPWu0
Lecia Sequist, MD, MPH @LeciaSequist
This 👇
Laura Greco @lgreco_ny
T3: how about trial design with patient input? #lcsm
Janet Freeman-Daily @JFreemanDaily
@LeciaSequist @LUNGevity Some of my charts tonight were provided by the marvelous Upal Basu Roy of @LUNGevity -- thanks buddy. #LCSM
Dr. David Tom Cooke @DavidCookeMD
A3 There is also geographic disparities. Travel distances to participate in clinical trials. Sometimes patients are forced to move. In those cases, many of course will not any bother. #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily And if anyone would like to work on this together, I am working on a letter now, would be happy to have people co-sign! #lcsm
Lillian Leigh @ProjectBreath
T3 Removing exclusion criterion of non-English speakers. Surely in this digital age of Google Translate, it's not difficult to be inclusive? #diverseresearch #clinicaltrials #CancerResearch #LCSM
Dr. David Tom Cooke @DavidCookeMD
Or even over the phone translators. #LCSM
Laura Greco @lgreco_ny
T3: Let's design trials by pairing drugs that actually make sense rather than drugs we can get from manufacturer easily. #lcsm
Inspire @teaminspire
RT @JFreemanDaily: Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LC
Devika Das,MD @DevikaDasMD
@JFreemanDaily A3 Also important to open trials widely and not just at the same large centers. Include minority patients, patients with performance status that is not just 0 and 1 , brain mets etc to reflect the real work population #lcsm
Inspire @teaminspire
RT @coffeemommy: @peggyddennis Hoping that the Clinical Trials Modernization Effort can address some of those things upfront. The comment p…
Dr. David Tom Cooke @DavidCookeMD
Would require targeted community center partnerships. #LCSM
Harpreet Singh, MD @harpreet_md
@LeciaSequist @JFreemanDaily @LUNGevity @FDAOncology has several guidances out on modernizing eligibility criteria - including patients with brain metastasis abs organ dysfunction. #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily Must structure trials in way that individuals w/ comorbidities can participate. Cancer remains disease of aging (despite young age many of us were dx'd!) and, with age, comes other health issues of aging. We eliminate many participants based on unrealistic requirements. #lcsm
Inspire @teaminspire
RT @JFreemanDaily: T3. How might eligibility requirements be modernized to help increase clinical trial enrollment? #LCSM
Lillian Leigh @ProjectBreath
RT @JFreemanDaily: 3 common characteristics (history of cancer, brain mets, high creatinine) can exclude almost half of advanced-stage NSCL…
Lillian Leigh @ProjectBreath
RT @JFreemanDaily: Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LC
Lillian Leigh @ProjectBreath
RT @DavidCookeMD: Or even over the phone translators. #LCSM
Sara Whitlock @sjwhitlock
Few of us who have had multiple treatments are without some organ damage#lcsm
Showtime @withspin
RT @JFreemanDaily: Patients with rare diseases may spend a long time searching for a clinical trial that will accept them. https://t.co/Fu…
Janet Freeman-Daily @JFreemanDaily
@harpreet_md @LeciaSequist @LUNGevity @FDAOncology @ASCO and Friends of Cancer Research published several reports last year on the modernizing of eligibility criteria. It was the basis of a presentation on relaxing trials eligibility requirements I gave at #WCLC19 last year. #LCSM
Stacey Tinianov @coffeemommy
@lgreco_ny Yes! And I love the adaptive trial design of iSPY2. Would like to see more adaptive designs as well as flexible/virtual trial sites to remove the travel burden. #lcsm #bcsm https://t.co/NU8zfqEEPB
Dr. Amy C. Moore @acmoorephd
RT @LungCancerFaces: Why aren’t more cancer patients participating in clinical trials? There are a number of reasons. Let’s identify them &…
patty spears @paspears88
Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @ASCO @CancerResrch modernizing eligibility references in it. All advocates need to become educated about all these issues. https://t.co/UZiX7u6yQ7 #lcsm
Dr. David Tom Cooke @DavidCookeMD
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Dr. Amy C. Moore @acmoorephd
RT @JFreemanDaily: A study of lung cancer rates in young adults in 40 countries across five continents found increasingly higher #lungcance
🐾 JOANNE 🐾 @JoanneK64
Southern Ontario has joined the convo #LCSM
Janet Freeman-Daily @JFreemanDaily
This is where you can find all the info on ASCO/Friends of Cancer Research work on modernizing clinical trial eligility. #LCSM
Dr. David Tom Cooke @DavidCookeMD
RT @JFreemanDaily: This is where you can find all the info on ASCO/Friends of Cancer Research work on modernizing clinical trial eligility.…
Stacey Tinianov @coffeemommy
@NarjustDumaMD @JFreemanDaily @tmprowell Indeed. She is a great advocate in all sorts of ways and valued part of our community! #lcsm #bcsm
Janet Freeman-Daily @JFreemanDaily
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Janet Freeman-Daily @JFreemanDaily
@paspears88 @ASCO @CancerResrch Terrific Patty, thank you! #LCSM
Sally James @jamesian
@coffeemommy @wi_qiong @JFreemanDaily This isn't written in especially EASY language, but guide to Phases of clinical trials https://t.co/5Yxgdt1uk1 #healthliteracy #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @lgreco_ny Yes! And I love the adaptive trial design of iSPY2. Would like to see more adaptive designs as well as flexible…
patty spears @paspears88
I just saw this on my twitter feed. Appropriate for this discussion. Still open for comments... increasing representation of older adults on clinical trials #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily Must structure trials in way that individuals w/ comorbidities can participate. Cancer remains disease of a…
Sally James @jamesian
@coffeemommy @wi_qiong @JFreemanDaily Video version https://t.co/KQB7se3u1H #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @DevikaDasMD: @JFreemanDaily A3 Also important to open trials widely and not just at the same large centers. Include minority patients,…
Harpreet Singh, MD @harpreet_md
@LeciaSequist @JFreemanDaily @LUNGevity @FDAOncology Efforts to publish this series of guidances @FDAOncology led by @DrJuliaBeaver #lcsm https://t.co/BDR1Jjaugb
Inspire @teaminspire
RT @jamesian: @coffeemommy @wi_qiong @JFreemanDaily Video version https://t.co/KQB7se3u1H #lcsm
Laura Greco @lgreco_ny
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Inspire @teaminspire
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Janet Freeman-Daily @JFreemanDaily
I would really like to see preclinical data made available to patients for consideration prior to joining a Phase 1 clinical trial. #LCSM
Stacey Tinianov @coffeemommy
@jamesian @wi_qiong @JFreemanDaily But you nailed it Sally with the "isn't written in especially EASY language." It isn't, we must do better. Videos, articles, infographics... we can do better with #education and #healthliteracy #lcsm #bcsm
Lecia Sequist, MD, MPH @LeciaSequist
#LCSM words I use to explain to those nervous about clinical trials: while we have lots of treatments for lung CA, we don't have infinite treatments. A trial that makes sense for you opens the door to an additional line of therapy, while also improving info for future pts
Devika Das,MD @DevikaDasMD
@JFreemanDaily A3 Remote screening for trials using telemedicine consults so patients don’t have to drive or fly long distances to be told they are not eligible #lcsm
Charu Aggarwal, MD, MPH @CharuAggarwalMD
@JFreemanDaily A3. Some of the changes that are much needed are coming, inclusion of patients affected with HIV and brain mets #LCSM
Julia Maues @itsnot_pink
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Janet Freeman-Daily @JFreemanDaily
And we DEFINITELY need all clinical trial data published--even when it's negative. How can we avoid making the same mistake in the future if we don't know about it? #LCSM
Benjamin Vincent @BenjaminGVincen
RT @paspears88: Here is my recent editorial on this topic. I have the Unger and the Harvey articles referenced in it. I also have the @AS
Dr. David Tom Cooke @DavidCookeMD
A3 Good words. Medical Oncologists are skilled at explaining clinical trials as opposed to surgeons. Not alot of neoadjuvant and adjuvant #LungCancer trials, and patients are skeptical. "Just want it out". #LCSM
Janet Freeman-Daily @JFreemanDaily
5:44 Topic T4 is coming up … #LCSM
Dr. David Tom Cooke @DavidCookeMD
RT @JFreemanDaily: And we DEFINITELY need all clinical trial data published--even when it's negative. How can we avoid making the same mist…
Laura Greco @lgreco_ny
RT @JFreemanDaily: I would really like to see preclinical data made available to patients for consideration prior to joining a Phase 1 clin…
Peggy Dennis @peggyddennis
@JFreemanDaily That would be great! #lcsm
Stacey Tinianov @coffeemommy
RT @JFreemanDaily: And we DEFINITELY need all clinical trial data published--even when it's negative. How can we avoid making the same mist…
Janet Freeman-Daily @JFreemanDaily
RT @harpreet_md: @LeciaSequist @JFreemanDaily @LUNGevity @FDAOncology Efforts to publish this series of guidances @FDAOncology led by @DrJu
Janet Freeman-Daily @JFreemanDaily
RT @jamesian: @coffeemommy @wi_qiong @JFreemanDaily Video version https://t.co/KQB7se3u1H #lcsm
Laura Greco @lgreco_ny
RT @coristarlit: @JFreemanDaily T2. I don’t know if awareness is a problem. I think most patients know clinical trials are out there, but t…
Janet Freeman-Daily @JFreemanDaily
RT @paspears88: I just saw this on my twitter feed. Appropriate for this discussion. Still open for comments... increasing representation…
Janet Freeman-Daily @JFreemanDaily
RT @jamesian: @coffeemommy @wi_qiong @JFreemanDaily This isn't written in especially EASY language, but guide to Phases of clinical trials…
Julia Maues @itsnot_pink
RT @JFreemanDaily: Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LC
Stacey Tinianov @coffeemommy
@JFreemanDaily I simply cannot even amplify this comment enough... #lcsm #bcsm #clinicaltrials #Truth
Laura Greco @lgreco_ny
RT @JFreemanDaily: And we DEFINITELY need all clinical trial data published--even when it's negative. How can we avoid making the same mist…
Lecia Sequist, MD, MPH @LeciaSequist
@JFreemanDaily Agree completely but note in reality this can be a challenge. It can take unbelievable time and energy to get a small negative trial published. May be rewriting many times over for many journals. Whole process can take mult years and many give up mid-stream #LCSM
Janet Freeman-Daily @JFreemanDaily
T4. How might financial, travel, and administrative barriers to clinical trial enrollment be reduced? #LCSM
Dr. David Tom Cooke @DavidCookeMD
Need an open access Journal of Negative Trials. #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @LeciaSequist: @JFreemanDaily Agree completely but note in reality this can be a challenge. It can take unbelievable time and energy to…
patty spears @paspears88
@JFreemanDaily There have been 4 published - Brain Metastasis, Comorbidities, Minimum Age, HIV Inclusion and there are 4 more coming.. #lcsm Kim et. al. PMID: 28968170 Lin et. al. PMID: 28968165 Lichtman et. al. PMID: 28968172 Uldrick et. al. PMID: 28968173  Gore et. al. PMID: 28968169
Janet Freeman-Daily @JFreemanDaily
RT @DavidCookeMD: A3 Good words. Medical Oncologists are skilled at explaining clinical trials as opposed to surgeons. Not alot of neoadj…
Laura Greco @lgreco_ny
@JFreemanDaily The federal government must punish those who fail to report!!! #lcsm https://t.co/YGw9m4nPFA
Dr. David Tom Cooke @DavidCookeMD
A4 Partner with industry: @Airbnb @Uber @lyft #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @LeciaSequist: #LCSM words I use to explain to those nervous about clinical trials: while we have lots of treatments for lung CA, we don…
Percy Lee MD @PercyLeeMD
Through team work @MDAndersonNews #radonc successfully treated our first #thoracic pt with @Elekta MR-linac. Rewarding to see how a talented team can focus energy to innovate better treatments with advanced technology for our patients. #lcsm @ACKoongMDPhD @cd_fuller @jihongw2 https://t.co/od6Pa62CJd
Charu Aggarwal, MD, MPH @CharuAggarwalMD
@lgreco_ny Most important. There is significant effort to include pts and advocates in clinical trial design. We must partner Ojibwa this important process #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily T4: In the words of the intrepid @1111linno, “Just please pay for my damn parking.” Seriously, it’s the little things that add up to be big things. Travel costs, parking fees, childcare, these may seem small but, when added up can prevent participation/retention in research #lcsm
Janet Freeman-Daily @JFreemanDaily
@NarjustDumaMD Whatever happened to the Journal of Negative Results? #LCSM
Dr. David Tom Cooke @DavidCookeMD
What's @PCORI is for. #LCSM
Sally James @jamesian
@coffeemommy @wi_qiong @JFreemanDaily Another try. #lcsm #clinicaltrials https://t.co/FeJTvCzWMV
Tom Varghese Jr. MD @TomVargheseJr
RT @JFreemanDaily: And we DEFINITELY need all clinical trial data published--even when it's negative. How can we avoid making the same mist…
Dr. David Tom Cooke @DavidCookeMD
Was that a thing? #LCSM
Sara Whitlock @sjwhitlock
T4. I’m lucky my trial does reimburse me. I don’t understand why this doesn’t happen more. Pharm vs academia? Perhaps? #LCSM
Laura Greco @lgreco_ny
RT @lgreco_ny: @JFreemanDaily The federal government must punish those who fail to report!!! #lcsm https://t.co/YGw9m4nPFA
Stacey Tinianov @coffeemommy
@jamesian @wi_qiong @JFreemanDaily Love this! Who is it from? #lcsm
Devika Das,MD @DevikaDasMD
@JFreemanDaily T4 Sponsor to pay for travel, gas, stay etc Telemedicine as much as possible, trials widely available at centers close to home to avoid having to take time off work and disruption of livelihood. #lcsm
Laura Greco @lgreco_ny
RT @coffeemommy: @JFreemanDaily T4: In the words of the intrepid @1111linno, “Just please pay for my damn parking.” Seriously, it’s the lit…
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @jamesian @wi_qiong @JFreemanDaily But you nailed it Sally with the "isn't written in especially EASY language." It isn't,…
Laura Greco @lgreco_ny
RT @DevikaDasMD: @JFreemanDaily T4 Sponsor to pay for travel, gas, stay etc Telemedicine as much as possible, trials widely available at…
coristarlit @coristarlit
@JFreemanDaily T4. Reimbursement for travel expenses! It’s ridiculous that we have to shoulder this cost, especially when if we don’t live near it, after years it can be over 10 grand (yes, personal experience here). #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @DevikaDasMD: @JFreemanDaily A3 Revamp clinical https://t.co/zemw9WM7vK to have a user friendly interface ( for both providers and pati…
Charu Aggarwal, MD, MPH @CharuAggarwalMD
@JFreemanDaily A4. Clinical trials are attractive when they include fringe benefits- parking, flights, overnight stays. They are important! #LCSM
kristen kimball @KimballKristen
@coffeemommy @JFreemanDaily @1111linno Ditto this tweet@coffeemommy! Parking, lodging, food... #LCSM
patty spears @paspears88
This was presented @ASCO 2019 by Don Harvey https://t.co/gS0yqsdAhY and https://t.co/PyZYE11EIh Quite incredible comparing traditional and broad eligibility... #lcsm
Myositis Support @MyositisSupport
RT @coffeemommy: @peggyddennis Hoping that the Clinical Trials Modernization Effort can address some of those things upfront. The comment p…
Laura Greco @lgreco_ny
@KimballKristen @coffeemommy @JFreemanDaily @1111linno Every time I talk about it, I am met with disbelief. #lcsm
Narjust Duma, M.D. @NarjustDumaMD
@CharuAggarwalMD @JFreemanDaily A4: Parking is so often overlooked. #LCSM
Lecia Sequist, MD, MPH @LeciaSequist
@JFreemanDaily Agree but IRB's/ethics boards require informed consent forms to be written at 2nd-4th grade reading level and other comments in this chat ref trial info being too complicated. Answer may be giving supplemental info to savvy patients as appropriate? #LCSM
coristarlit @coristarlit
@JFreemanDaily T4. Also, ability to get blood tests taken at a local hospital if you are not near the trial hospital. To have to fly or drive a long way to get a CBC done every 4 weeks at the clinical trial hospital is absolutely ridiculous. Massive financial cost and life interference. #LCSM
Janet Freeman-Daily @JFreemanDaily
At its meeting last fall, SACHRP made recommendations about paying clinical trial participants that will hopefully make more IRBs comfortable with allowing clinical trials to pay for parking, give gift cards as thank yous, etc. https://t.co/8HHjmOr36R #LCSM
Devika Das,MD @DevikaDasMD
RT @lgreco_ny: T3: how about trial design with patient input? #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @paspears88: This was presented @ASCO 2019 by Don Harvey https://t.co/gS0yqsdAhY and https://t.co/PyZYE11EIh Quite incredible comparing…
Janet Freeman-Daily @JFreemanDaily
We’re in our final minutes - closing thoughts? #LCSM
kristen kimball @KimballKristen
@JFreemanDaily I hadn’t realized IRBs are part of this problem? #LCSM
Sally James @jamesian
@coffeemommy @wi_qiong @JFreemanDaily Here is link to page, a collaborative https://t.co/mkmLuTry81 patient-physician collaborative for lung disease. #lcsm
Sally James @jamesian
@JFreemanDaily The delivery of communication that helps ppl make decisions is itself "health care." Should be paid for and designed carefully. #lcsm #healthliteracy
Laura Greco @lgreco_ny
@sjwhitlock Academia certainly isn't pushing for it. #lcsm
Sara Whitlock @sjwhitlock
As with most things it is a complicated issue. Needs attacks from all sides. #LCSM
Stacey Tinianov @coffeemommy
@JFreemanDaily Clinical trials need revamping and there is currently an @nlm_news effort underway to “Modernize Clinical Trials” https://t.co/jfv4XBcJxw. The comment period closes 3/14. #lcsm #bcsm Add your thoughts here: https://t.co/5PYweVPWu0
Janet Freeman-Daily @JFreemanDaily
If we truly want to address #cancer disparities and achieve true diversity in clinical trial enrollment, we have to consider trial participants' cost of insurance deductibles and copays, travel, childcare, and time away from work. #LCSM
Laura Greco @lgreco_ny
RT @coffeemommy: @JFreemanDaily Clinical trials need revamping and there is currently an @nlm_news effort underway to “Modernize Clinical T…
Lecia Sequist, MD, MPH @LeciaSequist
@sjwhitlock Agree financial help is super important for trials. Not all trial sponsors (pharma) offer this - it's a bit random which sponsor and which trials. Also, IRBs (institutional ethics board) have concerns about coercion/enticement which we need to address. Frustrating. Sigh....#LCSM
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily Clinical trials need revamping and there is currently an @nlm_news effort underway to “Modernize Clinical T…
Janet Freeman-Daily @JFreemanDaily
RT @jamesian: @JFreemanDaily The delivery of communication that helps ppl make decisions is itself "health care." Should be paid for and de…
Laura Greco @lgreco_ny
@JFreemanDaily In the rare disease space, patient related travel costs are reimbursed every time. #lcsm
Janet Freeman-Daily @JFreemanDaily
@KimballKristen Some IRBs are reluctant to approve ANY payment to clinical trial participants for fear they are coercing people to participate. #LCSM
Devika Das,MD @DevikaDasMD
@JFreemanDaily Trials are standard of care. Having ALL payers on board including Medicaid coverage is critical to pay for visits.Also need more federal funding ( specially for lung cancer ) to be able to open clinically relevant ( non pharma funded ) trials as well #lcsm
Stacey Tinianov @coffeemommy
@JFreemanDaily @nlm_news And, if you'd like help, guidance, thoughts about how to submit comments, I am HAPPY to help. My email is my first and last name at Gmail or you can DM me. We need all voices sharing while government ears are open. #lcsm #bcsm #clinicaltrials #patientexperience
kristen kimball @KimballKristen
My husband @VoicesForUS Dave Kimball was in 3 clinical trials, and one of them was a home run - years of quality life added. Forever grateful and wish as many others as possible could benefit as much. #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @DevikaDasMD: @JFreemanDaily T4 Sponsor to pay for travel, gas, stay etc Telemedicine as much as possible, trials widely available at…
Inspire @teaminspire
RT @JFreemanDaily: At its meeting last fall, SACHRP made recommendations about paying clinical trial participants that will hopefully make…
Laura Greco @lgreco_ny
RT @JFreemanDaily: If we truly want to address #cancer disparities and achieve true diversity in clinical trial enrollment, we have to cons…
Peggy Dennis @peggyddennis
Great topic. Would be great to revisit. #lcsm
Laura Greco @lgreco_ny
@JFreemanDaily Yes! Coinsurance and co-pays for extra scans can pinch! #lcsm
Lecia Sequist, MD, MPH @LeciaSequist
@lgreco_ny @sjwhitlock Not true Laura - many of us advocate very hard to pharma for this on behalf of our patients. There are lots of barriers unfortunately (see my other tweet a few min ago) - mainly pharma wanting to pay and IRB concerns #LCSM
kristen kimball @KimballKristen
@JFreemanDaily Frankly that seems disingenuous at best and stupid at worst...#lcsm
Janet Freeman-Daily @JFreemanDaily
Thanks everyone for joining #LCSM Chat today to discuss expanding access to clinical trials! Thanks especially to @coffeemommy for being my special guest tonight. See you next month on April 2!
Stacey Tinianov @coffeemommy
TY all for sharing your thoughts in the #lcsm chat & thank you to those of you from other cancer communities who joined in to chat about how we might improve access, experience & expand enrollment in clinical trials. And hugs to @JFreemanDaily for inviting me to participate.
Katsuaki Maehara Ph.D. 🇯🇵 @KatsuakiMaehara
RT @LeciaSequist: #LCSM words I use to explain to those nervous about clinical trials: while we have lots of treatments for lung CA, we don…
Gina @EAustin1969
RT @coffeemommy: TY all for sharing your thoughts in the #lcsm chat & thank you to those of you from other cancer communities who joined in…
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: TY all for sharing your thoughts in the #lcsm chat & thank you to those of you from other cancer communities who joined in…
Dr. David Tom Cooke @DavidCookeMD
Awesome! Great work as usual @JFreemanDaily #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily @nlm_news And, if you'd like help, guidance, thoughts about how to submit comments, I am HAPPY to help. My…
Janet Freeman-Daily @JFreemanDaily
RT @DevikaDasMD: @JFreemanDaily Trials are standard of care. Having ALL payers on board including Medicaid coverage is critical to pay for…
Katsuaki Maehara Ph.D. 🇯🇵 @KatsuakiMaehara
RT @CharuAggarwalMD: Circulating MicroRNA Profiles useful biomarker for Lung Cancer Detection in Symptomatic Patients. This is a vy importa…
denny keller @hrblock_21
RT @TakedaOncology: It's the strength and bravery that people living with #cancer show daily that fuels our teams' commitment to being more…
Janet Freeman-Daily @JFreemanDaily
@DavidCookeMD Check out this version: https://t.co/aOHGSAHv54 #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily T4: In the words of the intrepid @1111linno, “Just please pay for my damn parking.” Seriously, it’s the lit…
#LCSM content from Twitter.