#ayacsm Transcript
Healthcare social media transcript of the #ayacsm hashtag.
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See #ayacsm Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Emily K. Drake @EK_Drake Welcome to the #AYACSM tweet chat! We're so glad to have you with us this evening! Be sure to tweet along using #AYACSM #AYACSM was co-founded by @ukfann00 , @StupidCancer and I! |
| Emily K. Drake @EK_Drake As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Emily K. Drake @EK_Drake ALL are welcome to the #AYACSM (adolescent and young adult cancer societal movement) tweet chat starting now! |
| Emily K. Drake @EK_Drake I am pleased to introduce tonight's guest moderator: @StefThomasMD ! Take it away, Stefanie!! #AYACSM |
 | Stefanie Thomas, MD @StefThomasMD Thanks @EK_Drake! Tonight, we will be talking about clinical trials for AYAs. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Clinical trial enrollment is lower for AYAs than for children. Access to trials and enrollment in trials helps move science along to ideally improve treatment. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Thanks @EK_Drake! Tonight, we will be talking about clinical trials for AYAs. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Clinical trial enrollment is lower for AYAs than for children. Access to trials and enrollment in trials helps move science along to ideally improve treatment. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy. #AYACSM |
| Emily K. Drake @EK_Drake @StefThomasMD Emily Drake - #PhD in #Health student @DalHealth - #Halifax, Nova Scotia Canada AYA Cancer #Researcher - Co-Founder of #AYACSM |
 | Kimberly Miller, PhD @KimMillerPhD @StefThomasMD Hi there! Kim Miller from USC in LA--I do behavioral research in #AYA #oncology and #survivorship and full disclosure I may know you #inrealife. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @StefThomasMD Hi there! Kim Miller from USC in LA--I do behavioral research in #AYA #oncology and #survivorship and full disclosure I may know you #inrealife. #AYACSM |
 | Pat Taylor @PatTaylorCR Keen to learn more about this. #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @StefThomasMD You guys are totally sitting beside you each other aren't you? LOL! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @StefThomasMD @DalHealth 👋 #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @StefThomasMD hahaha NO! Not this time. Fun when we do though. :) #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @EK_Drake @KimMillerPhD I'm actually alone in my office- we were side-texting though! lol! #ayacsm |
 | Christina Lizaso @btrfly12 RT @EK_Drake: ALL are welcome to the #AYACSM (adolescent and young adult cancer societal movement) tweet chat starting now! |
| Christina Lizaso @btrfly12 RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Christina Lizaso @btrfly12 RT @StefThomasMD: Thanks @EK_Drake! Tonight, we will be talking about clinical trials for AYAs. #AYACSM |
 | Dr. Perri Tutelman @DrPerriTutelman @StefThomasMD I’m a PhD student in clinical psychology interested in psychosocial oncology. I’m based at @DalhousieU in Halifax, NS #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @StefThomasMD: Clinical trial enrollment is lower for AYAs than for children. Access to trials and enrollment in trials helps move science along to ideally improve treatment. #AYACSM |
 | Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @StefThomasMD @EK_Drake Hi! I'm Timiys Nolan! I'm a nurse scientist at @OSUNursing. My work centers around improving QOL in young adult breast cancer survivors. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @DalhousieU Welcome Perri! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @PerriTutelman @DalhousieU Hi Perri! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TSNolanPhD @EK_Drake @osunursing Welcome Timiya! #AYACSM |
| Emily K. Drake @EK_Drake RT @TSNolanPhD: @StefThomasMD @EK_Drake Hi! I'm Timiys Nolan! I'm a nurse scientist at @OSUNursing. My work centers around improving QOL in young adult breast cancer survivors. #AYACSM |
| Emily K. Drake @EK_Drake @TSNolanPhD @StefThomasMD @osunursing Thank you so much for joining us tonight! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Excited to have you all here! Let's get the conversation going! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Q1: #AYACSM: What are your first thoughts when you hear the term clinical trial? Who should be treated on a clinical trial? |
 | Sarah DeBord @TheSarahDeBord @StefThomasMD Sarah DeBord! LA-native who is currently freezing in the Twin Cities, working for @GYRIG and living (or rather thriving according to my oncologist last week) with young onset metastatic #coloncancer. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Q1: #AYACSM: Q1: #AYACSM: What are your first thoughts when you hear the term clinical trial? Who should be treated on a clinical trial? |
 | Brooke Cherven PhD, MPH, RN @BrookeCherven @StefThomasMD Hi! I’m Brooke Cherven, a nursing PhD student @UABSON My research focuses on reproductive and sexual health among #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord @GYRIG Welcome Sarah! #AYACSM |
| Emily K. Drake @EK_Drake @TheSarahDeBord @StefThomasMD @GYRIG Thank you so much for joining us tonight, Sarah! It's great to have you!! #AYACSM |
| Emily K. Drake @EK_Drake RT @BrookeCherven: @StefThomasMD Hi! I’m Brooke Cherven, a nursing PhD student @UABSON My research focuses on reproductive and sexual health among #AYACSM |
| Emily K. Drake @EK_Drake @BrookeCherven @StefThomasMD @UABSON That's awesome! I did my MA on #YA experience of sexuality - to be submitted for pub this year! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Clinical trials can seem like they are only meant for people who don't have treatment options left. But there are many types of trials. #AYACSM |
| Emily K. Drake @EK_Drake Welcome, Violet! Don't forget to add #AYACSM to the end of your tweets. So happy to have you join us tonight! |
 | Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @StefThomasMD A1: While many see clinical trials as the final option when standard treatment fails, I know many CRC patients who have done them & had positive results. Finding the right trial provides access to drugs you don’t have time to wait to be approved. #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @TheSarahDeBord @StefThomasMD @GYRIG It's freezing here in LA too, Sarah...60 degrees! =) #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @ViolentKuchar: @StefThomasMD A1: @StefThomasMD A1: While many see clinical trials as the final option when standard treatment fails, I know many CRC patients who have done them & had positive results. Finding the right trial provides access to drugs you don’t have time to wait to be approved. #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @ViolentKuchar Completely agree Violet! Many different types of trials exist- but they are often overlooked until after "standard treatment". #AYACSM |
| Pat Taylor @PatTaylorCR @StefThomasMD @ChildrensLA @PatTaylorCR @StefThomasMD Greetings. Listening in to learn more. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @ViolentKuchar Do you have insight on how the clinical trial went for the CRC patients you know? #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @ViolentKuchar @StefThomasMD This was my misunderstanding for an embarrassingly (considering I'm a cancer researcher) LONG time. That clinical trials were when all other treatment options were out. #AYACSM |
| Pat Taylor @PatTaylorCR RT @StefThomasMD: Clinical trials can seem like they are only meant for people who don't have treatment options left. But there are many types of trials. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Clinical trials can seem like they are only meant for people who don't have treatment options left. But there are many types of trials. #AYACSM |
| Emily K. Drake @EK_Drake @StefThomasMD This is a great point - I think people often aren't aware of this or the different types #AYACSM |
| Emily K. Drake @EK_Drake RT @ViolentKuchar: @StefThomasMD A1: @StefThomasMD A1: While many see clinical trials as the final option when standard treatment fails, I know many CRC patients who have done them & had positive results. Finding the right trial provides access to drugs you don’t have time to wait to be approved. #ayacsm |
| Sarah DeBord @TheSarahDeBord A1: Prior to my own dx, I associated clinical trials as one step up from lab mice. It was something you did when out of options. Now I know clinical trials are the cutting edge, and should be considered by all patients long before options run out. #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @TheSarahDeBord @StefThomasMD @GYRIG I can't even with you, Kim! LOL!! :) #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @ViolentKuchar Completely agree Violet! Many different types of trials exist- but they are often overlooked until after "standard treatment". #AYACSM |
| Brooke Cherven PhD, MPH, RN @BrookeCherven @StefThomasMD @ViolentKuchar My background is a pediatric oncology nurse and clinical trials are often presented as upfront therapy options...but AYA treated at adult centers don’t always have access to enroll #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @DrSadhanaJ @StefThomasMD @NIH I like the use of the word "deserves" here. It's a benefit for all. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @EK_Drake It is confusing! There are many types of trials and the traditional "phases" of trials are changing as drug development and treatment options change. #AYACSM |
 | MandiBattagliaSeiler @mandibattsei RT @TheSarahDeBord: A1: A1: Prior to my own dx, I associated clinical trials as one step up from lab mice. It was something you did when out of options. Now I know clinical trials are the cutting edge, and should be considered by all patients long before options run out. #AYACSM |
| Emily K. Drake @EK_Drake @PatTaylorCR @StefThomasMD @ChildrensLA Thanks for letting us know, Pat! If there are other people listening we appreciate if you would tweet "#AYACSM" to let us know that you are there - even if you do not want to participate. It helps us determine interest in the chats |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @StefThomasMD @colontown facilitates secret online Facebook groups based on mutations that help CRC patients find the right trial. We have many who see shrinkage and stability and a handful who are now NED. we share results and updates as well. #ayacsm |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @ViolentKuchar @StefThomasMD This was my misunderstanding for an embarrassingly (considering I'm a cancer researcher) LONG time. That clinical trials were when all other treatment options were out. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @TheSarahDeBord @StefThomasMD @GYRIG HAHAHA Sarah gets my joke. It's a statewide emergency when the temp drops below 70. I'd translate that to Celsius for you...if I could. :) #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @BrookeCherven @ViolentKuchar Completely agree Brooke! I am mostly in pediatrics- so I was trained that clinical trials are always offered- especially upfront- if available. But access is exactly what I want to talk about tonight! #AYACSM |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @EK_Drake @StefThomasMD Let's not forget that often clinical trials are not offered to ALL patients. So some of the difficulty in educating patients about clinical trials and diversifying enrollment lies squarely on researchers. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @EK_Drake And at different stages of cancer, Stef? #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @NikoGilly @ElephantsTea @stevegfund Hi Nick! Welcome! @EK_Drake and @KimMillerPhD, full disclosure- I also may know Nick in real life! #AYACSM |
| Sarah DeBord @TheSarahDeBord @KimMillerPhD @EK_Drake @StefThomasMD @GYRIG I tell people around here all the time that 65 degrees in LA = gloves, parka, beanie, and Uggs. They don't understand how much colder 65 feels when you're standing under a palm tree. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TSNolanPhD @EK_Drake Completely agree! We need to do a better job! And at the time of diagnosis is such a horrible time to have to be educating about trials. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @TheSarahDeBord @EK_Drake @StefThomasMD @GYRIG Seriously! My puffy jacket is on below 68 degrees...make fun of us all you want, context matters! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @KimMillerPhD @EK_Drake Yes! There are trials available for many low and high stage diagnoses! Depending on what is open and enrolling at the time. That is also always changing and makes things difficult! #AYACSM |
 | Nick Giallourakis @NikoGilly @StefThomasMD @ElephantsTea @stevegfund @EK_Drake @KimMillerPhD Lol yes we go way back to the childhood days of growing up in the same Greek church. #ayacsm |
| Stefanie Thomas, MD @StefThomasMD That was a great discussion for Q1! Lets keep it going! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Q2: #AYACSM: Is access to clinical trial important for AYAs? Would you move treating centers to enroll in a trial? Should all hospitals give access to clinical trials? |
| Emily K. Drake @EK_Drake RT @TheSarahDeBord: A1: A1: Prior to my own dx, I associated clinical trials as one step up from lab mice. It was something you did when out of options. Now I know clinical trials are the cutting edge, and should be considered by all patients long before options run out. #AYACSM |
| Sarah DeBord @TheSarahDeBord The clinical trials groups in @COLONTOWN transformed my knowledge and understanding of trials more than any presentation I've sat through at a conference. It is a great example of changing patient perception of clinical trials through patient-led empowerment. #AYACSM |
| Pat Taylor @PatTaylorCR RT @StefThomasMD: Q1: #AYACSM: Q1: #AYACSM: What are your first thoughts when you hear the term clinical trial? Who should be treated on a clinical trial? |
| Stefanie Thomas, MD @StefThomasMD @realslimsheyla Welcome Sheyla! #AYACSM |
| Emily K. Drake @EK_Drake RT @TSNolanPhD: @EK_Drake @StefThomasMD Let's not forget that often clinical trials are not offered to ALL patients. So some of the difficulty in educating patients about clinical trials and diversifying enrollment lies squarely on researchers. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla @StefThomasMD LOL you've done a lot more in 19 years than I have in...more years than that. Hi! #AYACSM |
| Emily K. Drake @EK_Drake @NikoGilly @StefThomasMD @ElephantsTea @stevegfund Don't forget to add "#ayacsm" to the end of your tweets so that they flow in the chat! |
| Pat Taylor @PatTaylorCR RT @StefThomasMD: @EK_Drake It is confusing! There are many types of trials and the traditional "phases" of trials are changing as drug development and treatment options change. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord @COLONTOWN That sounds incredible! What a great intervention! #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @TheSarahDeBord @StefThomasMD @GYRIG I have worn a winter coat in LA before! #AYACSM |
 | Billy Paymaster @ukfann00 RT @EK_Drake: Welcome to the #AYACSM tweet chat! We're so glad to have you with us this evening! Be sure to tweet along using #AYACSM #AYACSM was co-founded by @ukfann00 , @StupidCancer and I! |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD A2: I can't answer this but I've been working with rural tribal Indian communities of late where even primary care is hard to obtain. How can people just move around, and are there some solutions for those who live far from available trials? Like...telehealth trials? #AYACSM |
| Pat Taylor @PatTaylorCR RT @TheSarahDeBord: A1: A1: Prior to my own dx, I associated clinical trials as one step up from lab mice. It was something you did when out of options. Now I know clinical trials are the cutting edge, and should be considered by all patients long before options run out. #AYACSM |
| Pat Taylor @PatTaylorCR RT @StefThomasMD: Q2: #AYACSM: Q2: #AYACSM: Is access to clinical trial important for AYAs? Would you move treating centers to enroll in a trial? Should all hospitals give access to clinical trials? |
| Stefanie Thomas, MD @StefThomasMD There are some pharmaceutical companies looking into how to offer clinical trials away from a tradition academic setting. We need creative solutions. The overhead to run trials and data required can be limiting. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @StefThomasMD: There are some pharmaceutical companies looking into how to offer clinical trials away from a tradition academic setting. We need creative solutions. The overhead to run trials and data required can be limiting. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @TheSarahDeBord @COLONTOWN Clinicians and researchers can learn so much about effective patient-focused education and engagement from initiatives like these #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD This would help in some of the communities I've visited. #AYACSM |
| Emily K. Drake @EK_Drake @TSNolanPhD @StefThomasMD Absolutely! I mean us as researchers too - as @KimMillerPhD pointed out. If it isn't our direct area of research we may not be up on all of the facts #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Completely agree. And access to trials is one of the reasons #NIH developed #NCORP sites. Hoping to provide access to community settings. Unfortunately, at least for @COGorg studies, that was not shown to be true. I'll find you the article! #AYACSM |
| Sarah DeBord @TheSarahDeBord A1: Access is an issue for AYAs. Many don't have the means/ability to travel for trials (financial, job, school, kids, family demands) like older patients. I have traveled, but had I enrolled it would have required stressful rearrangements with work/childcare to pull off. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @TSNolanPhD @StefThomasMD Absolutely. Plus I'm a non-clinician cancer researcher...hence the need for the multidisciplinary research team (that includes patient advocates and other stakeholders). #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @TheSarahDeBord @COLONTOWN Completely agree Perri! #AYACSM |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @StefThomasMD @PatTaylorCR A2: I’d change centers as much as I could afford in regards to both funds and time. I still work so travel to other centers is difficult as I already miss work often for chemo. #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD RT @TheSarahDeBord: A1: A1: Access is an issue for AYAs. Many don't have the means/ability to travel for trials (financial, job, school, kids, family demands) like older patients. I have traveled, but had I enrolled it would have required stressful rearrangements with work/childcare to pull off. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord Yes! Particularly difficult for #AYAs at that stage of life! #AYACSM |
| Brooke Cherven PhD, MPH, RN @BrookeCherven @KimMillerPhD @EK_Drake @TSNolanPhD @StefThomasMD Yes - at larger academic institutions there are more resources. And moving from a support system for cancer therapy can have negative effects (regardless of the success of the trials) #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @ViolentKuchar @PatTaylorCR And insurance coverage! Sometimes trials are only offered at hospitals that are out of network! #AYACSM |
| Emily K. Drake @EK_Drake RT @TheSarahDeBord: A1: A1: Access is an issue for AYAs. Many don't have the means/ability to travel for trials (financial, job, school, kids, family demands) like older patients. I have traveled, but had I enrolled it would have required stressful rearrangements with work/childcare to pull off. #AYACSM |
| Sarah DeBord @TheSarahDeBord @PerriTutelman @COLONTOWN When fellow patients help you understand and navigate the clinical trial process, I think you're far more receptive and trusting to the steps you're about to take. They speak from personal experience and in the layman's terms needed in a highly scientific world. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @TheSarahDeBord A1: This is what I was wondering. It seems like as Stef says there needs to be creative solutions here. I mean, can we bring the clinical trial to the patient in a less burdensome way? #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman RT @TheSarahDeBord: @PerriTutelman @COLONTOWN When fellow patients help you understand and navigate the clinical trial process, I think you're far more receptive and trusting to the steps you're about to take. They speak from personal experience and in the layman's terms needed in a highly scientific world. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @BrookeCherven @KimMillerPhD @EK_Drake @TSNolanPhD Yup! No treatment regimens provide the basic essential support that you need to get through cancer therapy. So making trials more widely available would be the best choice. #AYACSM |
| Emily K. Drake @EK_Drake RT @ViolentKuchar: @StefThomasMD @PatTaylorCR A2: @StefThomasMD @PatTaylorCR A2: I’d change centers as much as I could afford in regards to both funds and time. I still work so travel to other centers is difficult as I already miss work often for chemo. #ayacsm |
| Emily K. Drake @EK_Drake @vickyyyf @StefThomasMD @SickKidsNews Thanks for joining us tonight, @vickyyyf #AYACSM |
| Emily K. Drake @EK_Drake RT @TheSarahDeBord: @PerriTutelman @COLONTOWN When fellow patients help you understand and navigate the clinical trial process, I think you're far more receptive and trusting to the steps you're about to take. They speak from personal experience and in the layman's terms needed in a highly scientific world. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord @PerriTutelman @COLONTOWN That sounds like a great idea. How do you think patient advocacy groups and the medical community can partner to make this happen? #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @BrookeCherven @KimMillerPhD @EK_Drake @TSNolanPhD Yup! No treatment regimens provide the basic essential support that you need to get through cancer therapy. So making trials more widely available would be the best choice. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @ViolentKuchar @PatTaylorCR I didn't even think of coverage issues. Yikes. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @KimMillerPhD @TheSarahDeBord Both less burdensome to the patient, still safe, and also financially possible. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Continuing the conversation on barriers: Q3: #AYACSM What do you think are the biggest barriers to clinical trial access and enrollment? |
| Sarah DeBord @TheSarahDeBord @KimMillerPhD @StefThomasMD In Minnesota, the @MNCCTN is working to bring clinical trials to rural and remote sites. #AYACSM |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @KimMillerPhD @StefThomasMD @PatTaylorCR I’m fortune to be a federal employee (besides the shutdown) & have many plans to choose from. I pay a bit more for one that will allow me to travel to other centers. That doesn’t cover the flight and hotel though. #ayacsm |
| Dr. Perri Tutelman @DrPerriTutelman @StefThomasMD @TheSarahDeBord @COLONTOWN The growing practice of including patients as partners on research teams to co develop study materials and recruitment procedures is a great start #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord @KimMillerPhD @MNCCTN I would love to learn more about that! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @TheSarahDeBord It's a tall order but genome sequencing is hard as is space travel. I bet we could work out something better. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Continuing the conversation on barriers: Q3: #AYACSM What do you think are the biggest barriers to clinical trial access and enrollment? |
| Emily K. Drake @EK_Drake RT @PerriTutelman: @StefThomasMD @TheSarahDeBord @COLONTOWN The growing practice of including patients as partners on research teams to co develop study materials and recruitment procedures is a great start #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @TheSarahDeBord @MNCCTN Me too. That's great to hear. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @TSNolanPhD @StefThomasMD @TheSarahDeBord @COLONTOWN @UABCancerCenter @OSUCCC_James Thanks for sharing these examples! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @TheSarahDeBord @COLONTOWN I agree it's a great start. I see it happening more on a small trial level, and not yet with the big studies. Also- the patient advocates are usually those that are very motivated and have the means to volunteer their time- there can be bias there as well. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD Thank you! I would love to learn more about them! #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @PerriTutelman @TheSarahDeBord @COLONTOWN I agree it's a great start. I see it happening more on a small trial level, and not yet with the big studies. Also- the patient advocates are usually those that are very motivated and have the means to volunteer their time- there can be bias there as well. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @StefThomasMD @TheSarahDeBord @COLONTOWN Completely agree. Progress is slow but in the right direction. #AYACSM |
| Sarah DeBord @TheSarahDeBord A3: Hands down for me has been finding an available trial I qualify for. I'm willing and ready! I have easy access to 3 NCI-designated comprehensive cancer centers, and was disappointed last year when none had a trial available for me (specific to my tumor genetics). #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @realslimsheyla Agreed. Even with the #AYACancer movement, many patients fall between pediatric and adult protocols. There is now an #AYA initiative through the #NCI that is working to streamline all the cooperative groups. #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @TSNolanPhD @StefThomasMD @TheSarahDeBord @PerriTutelman @COLONTOWN @UABCancerCenter @OSUCCC_James We still have so much more work to do to address marginalized oncology communities #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @StefThomasMD: @realslimsheyla Agreed. Even with the #AYACancer movement, many patients fall between pediatric and adult protocols. There is now an #AYA initiative through the #NCI that is working to streamline all the cooperative groups. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord Availability really is at the core of the issue. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @realslimsheyla Agreed. Even with the #AYACancer movement, many patients fall between pediatric and adult protocols. There is now an #AYA initiative through the #NCI that is working to streamline all the cooperative groups. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @EK_Drake: @KimMillerPhD @TSNolanPhD @StefThomasMD @TheSarahDeBord @PerriTutelman @COLONTOWN @UABCancerCenter @OSUCCC_James We still have so much more work to do to address marginalized oncology communities #AYACSM |
 | Sheyla @terminalyill3st RT @StefThomasMD: @realslimsheyla Agreed. Even with the #AYACancer movement, many patients fall between pediatric and adult protocols. There is now an #AYA initiative through the #NCI that is working to streamline all the cooperative groups. #AYACSM |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @StefThomasMD @realslimsheyla This is so exciting following the Childhood Cancer STAR Act! #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @realslimsheyla Yes! https://t.co/z9VbQG8KDE is always a good place to start! But the information can be outdated and it is difficult to navigate. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @StefThomasMD @realslimsheyla In Canada @TerryFoxPROFYLE is doing some innovative work breaking down age limit barriers to certain types of trials #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @TSNolanPhD @StefThomasMD @TheSarahDeBord @PerriTutelman @COLONTOWN @UABCancerCenter @OSUCCC_James Couldn't agree more. And so many different factors contribute to marginalization. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @realslimsheyla The truth is that your care team is probably not keeping things from you, they may not know of an existing trial. (Not an excuse, but can be reality.) #AYACSM |
 | Elephants and Tea @ElephantsTea RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Sarah DeBord @TheSarahDeBord @StefThomasMD Hello! Hello! Pick me for a clinical trial! Pick me! Pick me! Pick me! #AYACSM https://t.co/FAg1mETaqQ |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @realslimsheyla @TerryFoxPROFYLE Yes! We've done a pretty good job of dropping the age limit in the states to 13 on early phase trials (Especially NIH sponsored). And increasing the age of more pediatric type cancer, but even then, access is difficult. #AYACSM |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @StefThomasMD @realslimsheyla This is the same issue that patients deal with... fragmentation in available care and knowledge. #ayacsm |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @StefThomasMD @EK_Drake A3: I’m capable of searching for and researching trials, but enrollment often still requires having a doctor who knows someone to help get you in, and who agrees with the trial. It can feel like applying for a job. #ayacsm |
| Stefanie Thomas, MD @StefThomasMD Last question for the night! Q4: #AYACSM What can the medical community do to improve understanding of and access to clinical trials for AYAs? |
| Nick Giallourakis @NikoGilly RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Emily K. Drake @EK_Drake RT @PerriTutelman: @StefThomasMD @realslimsheyla In Canada @TerryFoxPROFYLE is doing some innovative work breaking down age limit barriers to certain types of trials #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @ViolentKuchar @EK_Drake Wow. I've never thought about it like that. But I can completely see that. #AYACSM |
| Nick Giallourakis @NikoGilly RT @StefThomasMD: @realslimsheyla Yes! https://t.co/z9VbQG8KDE is always a good place to start! But the information can be outdated and it is difficult to navigate. #AYACSM |
 | Dr. Sadhana Jackson, MD @DrSadhanaJ RT @StefThomasMD: Last question for the night! Q4: #AYACSM What can the medical community do to improve understanding of and access to clinical trials for AYAs? |
| Emily K. Drake @EK_Drake RT @ViolentKuchar: @StefThomasMD @EK_Drake A3: @StefThomasMD @EK_Drake A3: I’m capable of searching for and researching trials, but enrollment often still requires having a doctor who knows someone to help get you in, and who agrees with the trial. It can feel like applying for a job. #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @ViolentKuchar @EK_Drake I had no idea it was so labor intensive for you, the patient, to enroll. Wow. That's tough. #AYACSM |
| Elephants and Tea @ElephantsTea RT @StefThomasMD: @realslimsheyla Yes! https://t.co/z9VbQG8KDE is always a good place to start! But the information can be outdated and it is difficult to navigate. #AYACSM |
| Emily K. Drake @EK_Drake @ViolentKuchar @StefThomasMD I appreciate you sharing this so much because I feel like (as someone who researches psychosocial oncology issues and not clinical trials - though it all relates) often what we read about these trials is vastly different than the reality of the patient experience #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: Last question for the night! Q4: #AYACSM What can the medical community do to improve understanding of and access to clinical trials for AYAs? |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @StefThomasMD Education! Using existing trusted sources as an entry to underserved communities. Yes, this takes time. But, time and trust yields results! #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @realslimsheyla @TerryFoxPROFYLE For example, even if the trial exists up to age 30 or 35, a lot of children's hospitals can only admit to age 21. And opening the trial at the adult hospital is costly, so it is often not possible. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @ViolentKuchar @StefThomasMD Yes, agreed, thank you. This is very eye-opening. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @TSNolanPhD: @StefThomasMD Education! Using existing trusted sources as an entry to underserved communities. Yes, this takes time. But, time and trust yields results! #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @PerriTutelman @realslimsheyla @TerryFoxPROFYLE The same for younger patients. If a 13 year old has colorectal carcinoma, the support that is available at an adult hospital doesn't necessarily make it the best place for that child to be treated. Even with an available study. #AYACSM |
| Emily K. Drake @EK_Drake RT @TSNolanPhD: @StefThomasMD Education! Using existing trusted sources as an entry to underserved communities. Yes, this takes time. But, time and trust yields results! #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @TSNolanPhD @StefThomasMD Public health scientist 100% agreeing with nurse scientist here. YES! #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @StefThomasMD @realslimsheyla @TerryFoxPROFYLE Agreed. So many systems barriers #AYACSM |
| Sarah DeBord @TheSarahDeBord A4: I think the medical community can take away the stigma of trials by making it part of the normal discussion when talking about patient treatment plans, and not some scary monster you keep locked in the attic and only bring out when your hand is forced. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @TSNolanPhD Completely agree! Do you think it is best to do this education in a community setting? Not related to a particular diagnosis? Or should it be when a diagnosis happens? #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @TheSarahDeBord: A4: A4: I think the medical community can take away the stigma of trials by making it part of the normal discussion when talking about patient treatment plans, and not some scary monster you keep locked in the attic and only bring out when your hand is forced. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD My research focuses on clinical trial access and enrollment for AYAs with cancer. Please tweet at my all your ideas for improving this lack of access! #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD RT @StefThomasMD: My research focuses on clinical trial access and enrollment for AYAs with cancer. Please tweet at my all your ideas for improving this lack of access! #ayacsm |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD @StefThomasMD We need to normalize participation. Absolutely, information can be delivered in the community. Particularly for AYAs, we have to reach them where they are...schools, places of worship, primary care, apps. They possibilities are endless. #ayacsm |
| Dr. Perri Tutelman @DrPerriTutelman RT @TheSarahDeBord: A4: A4: I think the medical community can take away the stigma of trials by making it part of the normal discussion when talking about patient treatment plans, and not some scary monster you keep locked in the attic and only bring out when your hand is forced. #AYACSM |
| Sarah DeBord @TheSarahDeBord A4: The medical community should also consider peer-to-peer/patient-led clinical trial education (under adult supervision of course). No one is going to encourage/make a patient feel more comfortable about taking next steps than someone who has already done so themselves. #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: My research focuses on clinical trial access and enrollment for AYAs with cancer. Please tweet at my all your ideas for improving this lack of access! #ayacsm |
| Dr. Perri Tutelman @DrPerriTutelman @TheSarahDeBord I’d be curious to know from the clinician perspective what makes it uncomfortable and not routine #ayacsm |
| Emily K. Drake @EK_Drake Thank you for guest moderating tonight, @StefThomasMD !! #ayacsm Please tune in March 5th @ 8PM ET for the next #AYACSM chat! |
| Stefanie Thomas, MD @StefThomasMD Thank you so much for participating tonight! That hour went by fast (it was intense!). Looking forward to going though the conversation more closely! Have a great night all! #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @TSNolanPhD @StefThomasMD And we have a long history of public health interventions and community-based participatory research principles to draw from. This is an excellent point. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @TheSarahDeBord: A4: A4: The medical community should also consider peer-to-peer/patient-led clinical trial education (under adult supervision of course). No one is going to encourage/make a patient feel more comfortable about taking next steps than someone who has already done so themselves. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @StefThomasMD Great job, Stef. And thank you, as always, for one of my favorite hours of the month! And thanks to the #AYACSM community! XO |
| Emily K. Drake @EK_Drake RT @TSNolanPhD: @StefThomasMD We need to normalize participation. Absolutely, information can be delivered in the community. Particularly for AYAs, we have to reach them where they are...schools, places of worship, primary care, apps. They possibilities are endless. #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @TheSarahDeBord Love this idea! And that can be done remotely! #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @EK_Drake @StefThomasMD Great job, Stef. And thank you, as always, for one of my favorite hours of the month! And thanks to the #AYACSM community! XO |
| Dr. Perri Tutelman @DrPerriTutelman RT @TheSarahDeBord: A4: A4: The medical community should also consider peer-to-peer/patient-led clinical trial education (under adult supervision of course). No one is going to encourage/make a patient feel more comfortable about taking next steps than someone who has already done so themselves. #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @StefThomasMD Thank YOU!!! It was nice to see so many new faces tonight! I do hope that you will consider joining us next month. #AYACSM |
| Timiya S. Nolan, PhD, APRN-CNP, FAAN @TSNolanPhD RT @TheSarahDeBord: A4: A4: The medical community should also consider peer-to-peer/patient-led clinical trial education (under adult supervision of course). No one is going to encourage/make a patient feel more comfortable about taking next steps than someone who has already done so themselves. #AYACSM |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @TheSarahDeBord Yes! Nothing would inspire me to join a trial more than chatting with someone who did one and had good results. If I can get some tips on where to park at NIH that would be great too. #ayacsm |
| Emily K. Drake @EK_Drake RT @PerriTutelman: @TheSarahDeBord I’d be curious to know from the clinician perspective what makes it uncomfortable and not routine #ayacsm |
 | Anti-Cancer Club @anticancerclub I wondered if this was too much for a new relationship. https://t.co/h0kbRnUCBL #Leukemia #ayacsm |
| Violet Kuchar, Crazy Colorectal Cancer Cat Lady @ViolentKuchar @Murphygirl8 @EK_Drake @StefThomasMD I think about this often as I grew up in a town of 2700 people that was hours away from any major center. Telemedicine and coordination of treatment with local centers is the only way these people can be reached. #ayacsm |
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