#LCSM Transcript
Healthcare social media transcript of the #LCSM hashtag.
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| Profile | Tweet |
|---|---|
 | 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 |
| 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, MSHQS 😷 @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, MSHQS 😷 @DevikaDasMD @JFreemanDaily Centers not sores #lcsm 🤦🏽♀️ |
| 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 @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, MSHQS 😷 @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 |
| 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 @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, MSHQS 😷 @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 |
| 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, MSHQS 😷 @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 |
| 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 Mask-Wearing 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 Mask-Wearing 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, MSHQS 😷 @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 Maués @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 Maués @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 Mask-Wearing James @jamesian @coffeemommy @wi_qiong @JFreemanDaily Another try. #lcsm #clinicaltrials https://t.co/FeJTvCzWMV |
 | Tom Varghese Jr. MD, MS, FACS 🇺🇸 @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, MSHQS 😷 @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 and Understanding (MSU) @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, MSHQS 😷 @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 Mask-Wearing 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 Mask-Wearing 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, MSHQS 😷 @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… |
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