#LCSM Transcript
Healthcare social media transcript of the #LCSM hashtag.
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See #LCSM Influencers/Analytics.
| 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 ([REDACTED USER]), #breastcancer patient/research advocate extraordinaire. Welcome Stacey! #LCSM |
 | The Kidney Project @KidneyProject March 12, 2020 is World Kidney Day World Kidney Day is aimed at raising awareness of the importance of our kidneys. Join us: Facebook: https://t.co/IX8VQ32m0b Instagram: https://t.co/efFXUQrXjf Give a gift: https://t.co/sESScGZlx0 #TKP#KidneyDisease #WorldKidneyDay https://t.co/nE3EZ36OjF |
| Janet Freeman-Daily @JFreemanDaily We'll get started in a few minutes -- please take a moment to introduce yourselves #LCSM |
| @KimballKristen @JFreemanDaily [REDACTED USER] 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 [REDACTED USER] Welcome Kris! #LCSM Glad you could join us. |
| 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 |
 | Sara Whitlock @sjwhitlock Sara here. Working on 10 years with stage IV NSCLC! #LCSM |
 | Cori @coristarlit @JFreemanDaily [REDACTED USER] 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 [REDACTED USER] @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 |
| Janet Freeman-Daily @JFreemanDaily @stales [REDACTED USER] 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 |
| Janet Freeman-Daily @JFreemanDaily We’ll start with Topic T1 in a minute …#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 |
| Sara Whitlock @sjwhitlock T1. Admission criteria. #LCSM |
 | Inspire @InspireIsHealth Hi all, John Novack from Inspire checking in to #LCSM. |
| Janet Freeman-Daily @JFreemanDaily [REDACTED USER] Hey Lillian! Welcome. #LCSM |
| Inspire @InspireIsHealth RT @JFreemanDaily: T1. What are the barriers to cancer clinical trial participation and enrollment? #LCSM |
| 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 |
| 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… |
| Janet Freeman-Daily @JFreemanDaily Hi John and Narjust! #LCSM |
| @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 | |
| Tiffini Joseph @Smiles4Nana T1 and not enough referrals to studies #LCSM |
 | Narjust Florez, MD, FASCO @NarjustFlorezMD @JFreemanDaily A1: Strict and at times no evidence based eligibility criteria. Here is the link to our study regarding this, particularly in early phase studies. https://t.co/QoLrV4aVNo #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 |
| Janet Freeman-Daily @JFreemanDaily RT @NarjustDumaMD: @JFreemanDaily A1: Strict and at times no evidence based eligibility criteria. Here is the link to our study regarding… |
| 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 |
| 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 |
| Narjust Florez, MD, FASCO @NarjustFlorezMD @JFreemanDaily @LungCancerFaces @LungCancerFaces grandmother duties are so important. I am who I am today thanks to my grandma. Also something unique to women with lung cancer, they are more likely to be a source of childcare/elderly compare to men. #LCSM |
| Inspire @InspireIsHealth 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 |
| 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… |
| Cori @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 |
| Janet Freeman-Daily @JFreemanDaily T2. How might awareness of clinical trials be increased?#LCSM |
 | Boots to Grasses @bootstograsses That's one cute cowboy!#downsyndrome #eaat #ohiotherapeutic #differentnotless #diversity #autism #depressionhelp #bipolardisorder #recovery #spasticcerebralpalsy #preemiestrong #kindness #autismacceptance… https://t.co/YLRqRLzWio |
 | Participatory Medicine @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 |
| 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 |
| @KimballKristen @lgreco_ny and if the trial requires a long washout period from former treatment, that is frightening #LCSM | |
| Cori @coristarlit Whoops. Forgot #LCSM tag |
| Laura Greco @lgreco_ny T2: I think patient testimonials can be quite powerful. #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… |
| 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 |
 | Lecia Sequist, MD, MPH @LeciaSequist #LCSM joining late from Boston |
| Cori @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 |
| @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 | |
| Janet Freeman-Daily @JFreemanDaily Alas, #LCSM Chat retweets from @lcsmchat account are languishing without the nimble fingers of @LungCancerFaces... #LCSM |
| @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 | |
| 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, [REDACTED USER]! #Cancer patient advocates, send your suggestions in SOON! #LCSM |
| @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 | |
| Sara Whitlock @sjwhitlock @LeciaSequist @Smiles4Nana Yes. I think you have to really work to find what you are looking for. But aren’t they revamping the site?T2 |
| 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, [REDACTED USER]! #Cancer patient advocates, send your suggestions in SOON! #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 |
| @DavidCookeMD Ola! #LCSM | |
| @DavidCookeMD A3, remove the "other solid organ tumor within 5 years" exclusion. #LCSM | |
| Laura Greco @lgreco_ny [REDACTED USER] @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 |
| 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 |
| @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 |
| 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 |
 | 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 |
| Cori @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 |
| Narjust Florez, MD, FASCO @NarjustFlorezMD @JFreemanDaily A2: the conversation about clinical trials should be discussed included in the majority of patient visits. If we talk about it, we normalize it. #LCSM |
| Lecia Sequist, MD, MPH @LeciaSequist This 👇 |
| Janet Freeman-Daily @JFreemanDaily @LeciaSequist @LUNGevity Some of my charts tonight were provided by the marvelous Upal Basu Roy of @LUNGevity -- thanks buddy. #LCSM |
| Laura Greco @lgreco_ny T3: how about trial design with patient input? #lcsm |
| @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 | |
| @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 @InspireIsHealth RT @JFreemanDaily: Did you know that even when a clinical trial is available, 21.5% patients are ineligible due to exclusion criteria? #LC… |
| @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 |
| Inspire @InspireIsHealth 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 |
 | Dr. Heuer @DrLisaHeuer https://t.co/AkOqxDLWdB #weightlossjourney #weightloss #weightlosstransformation #healthyfood #healthylifestyle #diet #lifestyle #nutrition #childhoodobesity #wellness #eathealthy #mealprep #nyack… https://t.co/L15aTHRIpc |
| 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 |
 | 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 |
| @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… | |
| 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 |
| @DavidCookeMD RT @JFreemanDaily: This is where you can find all the info on ASCO/Friends of Cancer Research work on modernizing clinical trial eligility.… | |
| 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 [REDACTED USER] @wi_qiong @JFreemanDaily This isn't written in especially EASY language, but guide to Phases of clinical trials https://t.co/5Yxgdt1uk1 #healthliteracy #lcsm |
| 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 |
| Sally James @jamesian [REDACTED USER] @wi_qiong @JFreemanDaily Video version https://t.co/KQB7se3u1H #lcsm |
| 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 @InspireIsHealth 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 |
| 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 |
 | Charu Aggarwal, MD, MPH, FASCO @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… |
 | Tatiana Prowell, MD @tmprowell [REDACTED USER] @NarjustDumaMD @JFreemanDaily Thanks, friends. xx |
| 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… |
| @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 |
| @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… | |
| Peggy Dennis @peggyddennis @JFreemanDaily That would be great! #lcsm |
| 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: [REDACTED USER] @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… |
| 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… |
| 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 |
| @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 |
| @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 [REDACTED USER] MR-linac. Rewarding to see how a talented team can focus energy to innovate better treatments with advanced technology for our patients. #lcsm @ACKoongMDPhD [REDACTED USER] @jihongw2 https://t.co/od6Pa62CJd |
| Charu Aggarwal, MD, MPH, FASCO @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 |
| Janet Freeman-Daily @JFreemanDaily @NarjustDumaMD Whatever happened to the Journal of Negative Results? #LCSM |
| @DavidCookeMD What's @PCORI is for. #LCSM | |
| Sally James @jamesian [REDACTED USER] @wi_qiong @JFreemanDaily Another try. #lcsm #clinicaltrials https://t.co/FeJTvCzWMV |
 | Tom Varghese Jr. MD, MS, MBA, FACS, MAMSE 🇺🇸 @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… |
| @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 |
| Cori @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 |
| Charu Aggarwal, MD, MPH, FASCO @CharuAggarwalMD @JFreemanDaily A4. Clinical trials are attractive when they include fringe benefits- parking, flights, overnight stays. They are important! #LCSM |
| @KimballKristen [REDACTED USER] @JFreemanDaily @1111linno Ditto this tweet[REDACTED USER]! 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 |
| Laura Greco @lgreco_ny @KimballKristen [REDACTED USER] @JFreemanDaily @1111linno Every time I talk about it, I am met with disbelief. #lcsm |
| Narjust Florez, MD, FASCO @NarjustFlorezMD @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 |
| Cori @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 |
| 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 |
| @KimballKristen @JFreemanDaily I hadn’t realized IRBs are part of this problem? #LCSM | |
| Sally James @jamesian [REDACTED USER] @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 |
| 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 |
| 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 @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 |
| @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 | |
| 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 |
| @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 [REDACTED USER] for being my special guest tonight. See you next month on April 2! |
| @DavidCookeMD Awesome! Great work as usual @JFreemanDaily #LCSM | |
 | Dermatology Associates of Seattle @doctor_of_skin How THERMIva Has Forever Changed Feminine Rejuvenation: performed by Janell Bailey, Licensed Master Aesthetician. Who is THERMIva intended for? THERMIva could be a great option if you suffer from urinary… https://t.co/52dHWznbvW |
| Janet Freeman-Daily @JFreemanDaily @DavidCookeMD Check out this version: https://t.co/aOHGSAHv54 #LCSM |
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