Diversity in Clinical Trial Enrollment in Key Oncology Trials: Are We There Yet?

Dr. Chino welcomes Dr. Jennifer Miller and breast cancer survivor Megan-Claire Chase to discuss Dr. Miller's recent OP article, "Representation of Women, Older Adults, and Racial and Ethnic Minoritized Patients in Pivotal Trials for U.S. Food and Drug Administration Novel Oncology Therapeutic Approvals, 2012-2021: Bright Spot Trials and Trends Over Time," highlighting new research about how we are doing with diversity in key cancer clinical trials

TRANSCRIPT

Dr. Fumiko Chino: Hello and welcome to Put into Practice, the podcast for the JCO Oncology Practice. I'm Dr. Fumiko Chino, an associate professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity.

There are known problems in enrolling a representative sample on cancer clinical trials, with stark disparities within certain demographic groups, including age, sex, and race and ethnicity. Patients who are female, non-White, and at the age extremes, either younger or older, are known to be less likely to participate. With skewed patient participation, the validity of randomized data may be questioned, with some asking whether clinical trial results based on a charmed enrollment sample can truly be applied in routine practice.

I'm happy to welcome two guests today to discuss new research highlighting how we are doing with diversity in key cancer clinical trials. Dr. Jennifer Miller, is Co-Director of the Program for Biomedical Ethics and an associate professor at Yale School of Medicine. Her research focuses on ethics, equity, and governance in research, development, and accessibility, as well as in the ethics of healthcare data sharing. She is the first author of the manuscript, "Representation of Women, Older Adults, and Racial and Ethnic Minoritized Patients in Pivotal Trials for US Food and Drug Administration Novel Oncology Therapeutic Approvals, 2012 to 2021: Bright Spot Trials and Trends Over Time," which is featured in JCO OP's March print issue.

Megan-Claire Chase is a 10-year breast cancer survivor, patient advocate, and a current program director at SHARE Cancer Support, a national nonprofit that provides free education, assistance, and navigation services for people with breast and gynecological cancers. Since her treatment for stage 2A lobular cancer, she has worked to fill the gap of knowledge and advocacy for young patients with cancer, including through her blog, Life on the Cancer Train, and through the podcast, Our BC Life.

Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today.

Jen and Megan-Claire, it's really nice to speak to you today.

Dr. Jennifer Miller: Thank you for having us.

Megan-Claire Chase: Thank you.

Dr. Fumiko Chino: Jen, before we dig into the specific research, do you mind giving us a little bit of background about your work in bioethics and what led you to start this specific work on clinical trial diversity?

Dr. Jennifer Miller: Yes, thank you so much. So, as you mentioned, I'm the Director of Bioethics for Yale School of Medicine and a professor of internal medicine at Yale. And then also in 2005, I co-founded a nonprofit called Bioethics International and direct a project called the Good Pharma Scorecard. In all of those roles, I'm focused on one big question: How can we help the 7 billion people around the world live a good life, a flourishing life? And in order to even talk about that bigger concept, we need to think about some basic things: access to clean water, housing, food, education, among other things, and a level of health.

And there are so many determinants of health, but one of them is access to medicines and vaccines. And when you think about access to medicines, you have to think about the role of the pharmaceutical industry, given that it sponsors 75 to 90% conservatively of the clinical research supporting FDA approval of our new medical products. What's interesting is while the industry has a very stated noble mission, right, to ‘cure, heal, and advance people's health’, when you survey Americans in particular, 91% think that companies put profits before people and patients, so money before people and patients. And when you look at the media and the court cases, they're covering mostly scandals and outright ethics failures ranging from concerns about whether companies are telling you the truth about the safety and efficacy of new medicines and vaccines and worries about outright price gouging.

And what's interesting is when I host a meeting every year with C-level executives from pharma, when I get them together and show them all of the concerns that stakeholders have about their patient centricity, I often hear the same two things: one, “Those are old issues that we fixed. If only you academics looked at more up-to-date data, you'd see that that is no longer a problem,” right? And so they called the pricing problem a ‘hoodie’ problem because Martin Shkreli, he wore a hood, a black sweatshirt with a hood. But as we know, there's a widespread current and genuine pricing problem with medicines and vaccines.

And then they said it was an outlier company, right? “That's one company in an otherwise sound industry or rogue employee in an otherwise good company, not the industry as a whole.” And so when I walked away it’s, wow, there's a black box. We actually don't know the ethical or patient centricity performance of pharma companies, of an individual company, of a product, of a trial, or of the whole industry as a whole, and it's really important to know this.

And so, I got together a multi-stakeholder group and I said, “Hey, fine, I'm neutral. It's either a misperception, you're doing great and we need to build merited trust, or there really are some problems and we need to fix them and get them right for patients around the world.” That's how I started the Good Pharma Scorecard, which is really designed to set ethics goals for the pharmaceutical industry and turn them into metrics so we can benchmark the performance of trials, products, and companies and then rate and rank them. What that does is it recognizes where there are good practices so we can study how they did it, but importantly to catalyze reform and change where needed for patients.

We started by looking at the transparency of clinical research, right: do pharma companies tell you all the safety and efficacy data about new medicines and vaccines? And we were able to measurably move the needle. In other words, pharma companies really changed their practices as a result of getting their Good Pharma Scorecard ratings and rankings. And so we turned our attention and said, “What else should we tackle?” And the next thing we tackled was representation in clinical trial enrollment, for exactly the problem that you mentioned. We tend to test our new medicines on healthy, young, White males that don't represent the patient population in the US or other countries who end up taking products post FDA approval.

Dr. Fumiko Chino: What a great narrative of how you kind of reached the point where you are doing this research. And again, I think you've highlighted that diversity in clinical trials is only one aspect of everything that could potentially be improved in healthcare in the United States. So I am so excited about what you're going to do next to address the next issue.

But let me ping over to Megan-Claire. I know a little bit about you personally, but can you share with our listeners a little bit about your background and just discussing for example, the multiple hats you wear in life? You have a cancer survivor, you're a cancer caregiver, you're a patient advocate, and obviously you work at SHARE. So what is your origin story for Warrior Megsie?

Megan-Claire Chase: Well, first of all, I always knew I would get cancer, and when people hear that, they're like, “Why would you say that? Like, why would you even, like, mention that out into existence,” right? But it's no, like, I know my family medical history, at least mainly on my mother's side. And I'm an IVF result. It took my parents 8 years to even get pregnant, and then during the third month, my mother was diagnosed with ovarian cancer. And so, I like to say I'm literally a cancer because I was born in July. I was born 3 months early. I was supposed to be born the last week of October, and I was born July 3rd.

And so the joke in the family is, I look nothing like my mother externally, but internally, I got all the issues. And so we really are both walking miracles, the fact that we did both survive this, but I knew, I just knew I would get ovarian or cervical cancer because that's where all of my issues were. So I had been monitored since I was 16. And then, of course, having other health issues, being born premature and all of that, and then ultimately, I had very strange symptoms. We hear the guidelines of breast cancer, and I had none of those. But I also was an advocate. So in my family, my parents are divorced, so I'll mainly be talking about my mother's side. My maternal grandmother, my Nana, she was the first biracial registered nurse at St. Vincent's in Bridgeport, Connecticut. And my grandfather was a mortician, so we're like, “Boy, aren't they like the perfect couple, you know? She helped you in life, and he helped you in death.”

But all of that to say, I was raised to know my patient right to change doctors, my patient right to ask questions, and my patient right to get pushy. And I did all the things. So we often hear, “Hey, you need to advocate for yourself.” Well, even when you advocate for yourself, sometimes you're ignored because I'm a woman, then I'm a Black woman, and then I was under 40. So I wasn't even old enough to get a mammogram. And because there is that correlation between breast and ovarian, I was able to get one early and covered by insurance 100%, and they were like, "Hey, you're good. Come back when you're 40."

But I kept having all these other strange symptoms, and I just kept pushing and pushing for close to two and a half years, and then it wasn't until the cancer was like, “Okay, we're going to have to just make a grand entrance because no one's believing you.” Then everyone sprung into action, and it was because of all that, and I thought to myself, “Oh my God, if I'm being ignored and I am someone who's pretty darn vocal, what if English wasn't my first language? What if I didn't know my family medical history?” Like, I just went down the rabbit hole, and my background is in media and marketing, and I'm also a writer. And so I was very open with my diagnosis because I'm an only child too. So this is like huge. It was just too big for me to deal with alone, but also I wanted to like amplify the barriers that I was experiencing and then also losing my fertility. I mean, it was just so many things at once, and it was through that, I ultimately realized, “Hmm, this cancer journey, it's never really over.” And that was how I came up with the name "Life on the Cancer Train" because I was like, I keep waiting to get off the stop permanently, and that's not happening.

And though I am now in double digits of ‘no evidence of disease’, I call it my boyfriend NED. We've been in a long-term relationship now for 10 years and we're going to continue going strong. I've had so many other issues that no one prepared me for. And so I was doing a lot of advocacy work while I was in media and marketing, and then I was like, “Hmm, what would happen if I actually worked in this space? Like, imagine what I could do.” And that's ultimately how I ended up finally working at SHARE Cancer Support remotely because I live in Atlanta, Georgia, so you may hear a slight twang every so often. And I am the Breast Cancer Program Director and host of Our BC Life podcast.

And, you know, through all of that, I am known in Cancerland as Warrior Megsie because my hair came back curly. And, you know, so many people are like, “Oh, I would have loved for my chemo to turn my hair curly,” and I'm like, “Well, I wanted my hair.” Every time I look at myself, it's traumatic. Yes, do I rock it? Sure. I mean, when it was coming in looking like a chia pet, I was a little concerned, but every day I'm reminded of what I've gone through and what I continue to go through. And that's ultimately how I made my grand entrance into Cancerland.

Dr. Fumiko Chino: Thank you for sharing that with us, and I know that this is not kind of how you wanted to find your mission in life, right? You would have been much happier to just live your previous existence without cancer, or just being a cancer caregiver, or just being an advocate, or just being a communicator and not being a cancer survivor on top of all of that. So, I do appreciate though that you took it for what it was, which is this is the path that you're walking down, and so let's try to make that path better for everyone, more comfortable, clearer, more outlined. And so I appreciate that.

Now, Jen, do you want to walk us through your actual JCO OP study, what you did, what you found, why it matters?

Dr. Jennifer Miller: Sure. Second plug for St. Vincent's in Bridgeport. My mom works there as well on Nine North, so I was so excited to hear that, that common touchpoint. So when we added the representation challenge to the Good Pharma Scorecard, we, obviously unsurprisingly, found abysmal representation of a variety of different groups or pretty much everyone. And we stepped back and we said, “What more can we do to measurably move the needle?” Because there have been 40-plus years of policy efforts to try to improve representation of women, older adults, and racial and ethnic minoritized patients among other groups, and we haven't measurably moved the needle for any group in cancer over the last 10 years.

And that's shocking not to see any improvement in 10 years. That's a lot of time and there's been a lot of investment on this issue. And so, what we settled on was this idea of doing a bright spot analysis. The bright spot approach assumes that somebody, somebody's getting it right, and if we could find that bright spot and study how they do it, we might be able to develop generalizable guidance for everyone else to be able to repeat that positive behavior. That bright spot analysis was done with the FDA Oncology Center for Excellence with their support. And so, while the 10-year data looked abysmal, right, we hadn't seen any improvements overall, when we started to look by sponsor, it turns out there were some bright spots. There were some sponsors who were able to consistently adequately represent one group. They couldn't represent everybody, but they were getting one group, right, and we decided to focus on Black or Latino identifying patients. And we found 33 bright spots.

So I'll tell you the overall data and then I'll talk a little bit about the bright spots. So we looked at a 10-year sample, novel oncology products approved by the FDA between 2012 and 2021, which was 111 novel cancer therapies sponsored by 70 different companies based on 121 pivotal trials enrolling over 50,000 patients around the world. And what we found was zero trials, zero trials adequately represented all the demographics we were looking at, which was sex, age, and racial and ethnic identity. And we were comparing enrolled participants to the patient population with each targeted indication.

However, 99% of trials were able to at least represent one group. 80% adequately represented women, 44% adequately represented older adults, age 65 and older. However, only 2% were able to adequately represent racial and ethnic minoritized patients. And we were only looking at a small group of race and ethnicities. So rather than focusing on the negative, we looked at those 33 bright spots and we said, “Let's go interview them. How did they do it?” And we heard some common practices that were now debating some processes that are likely to drive that outcome we're looking at that we're debating whether to add to the Good Pharma Scorecard. We'll add some, we're just trying to figure out which ones are most associated with success.

Dr. Fumiko Chino: I love this idea that you really wanted to go on a fact-finding mission, which is, “We know that things are bad. Let's document they're bad.” But then for the few people, institutions, companies, whatever that are actually doing well, how do we learn lessons from them to then try to actually do a guide map for other places to run clinical trials in a more equitable fashion? If there's specific things that they're doing that actually helps them get more, for example, Black patients to enroll. So I love that, that you're like, “Let's go on a fact-finding mission, let's really, let's categorize it, let's share this knowledge so that we can then actually improve everyone - a rising tide floats all boats.”

Now, Megan-Claire, are the findings that we just talked about - the 0% of trials were adequately represented for every different demographic - are they actually surprising to you? Because I still remember in 2022 when Stephanie Walker from the Metastatic Breast Cancer Alliance highlighted the ‘ask gap’, which is that Black women may be just as likely to enroll on clinical trials if they're actually asked, but they're just not asked. So I'd love your thoughts and how you see this kind of play out within the patient advocacy community, and then, you know, if we're really thinking about is this an ongoing problem reaching diversity of patients?

Megan-Claire Chase: Well, I was not surprised at all. And huge shout out to Stephanie Walker. Love her. She's amazing. I am someone who used to be totally against clinical trials. I was one of those that was like, “You're not going to use me as a guinea pig.” And then I went through my own cancer experience, and my mother also now has a blood cancer, and watching her go through the clinical trial process also and I actually experienced medication not working in my body. And honestly, it was from that moment on where it really clicked for me. And I, you know, it makes me sad that I had to wait for myself to get sick in order to fully understand the importance of representation in clinical trials.

But it was in that moment where I was like, “Wait a minute, how many people were on the trial for this medication that looks like me? And I don't just mean like one or two.” And then the fact that it kept happening over and over again, and I started thinking, “Oh my gosh, this is a really huge issue because if we're not represented, that means we don't know how those medications are going to work in our bodies.” And the fact that I was intolerant of eight different medications that we kept trying and putting my body through, it was really eye opening for me. And then in my advocacy work, I've had a chance to look, at what is it called, the paperwork that you look at - the consent forms. I'm reading all of this terminology, and I'm like, “That's racist,” or, “that's going to come across wrong to the community that you're trying to reach.”

And so, after experiencing that, walking through it with my mother as well and then I was like, “We need to talk more about this.” And so, I often hear over and over again, “Yeah, we're not getting enough representation in clinical trials, we're not being asked,” but also we're not talking about it in a way that resonates. So like even the words "clinical trial" is problematic. And so, here's the way I started talking about clinical trials after my own experience is I think of it like dating, and I am trying to find the perfect trial. Now, was I ever offered a clinical trial or even told that could be a potential option? No. All of the information I found out was all on my own. And I was like bringing in research to my oncologist who at that time, my active treatment oncologist, I ultimately divorced her, and I said that to her face. I was like, “I divorce you because you're not listening to me. Thank you for getting me to this point, but now we're talking about medications are not working for me, and you're telling me, ‘Oh, just get off it for two weeks and then get back on it.’ And I'm like, ‘I am not going to keep putting my body through this.’”

And so, I started thinking of it like, yeah, this is kind of like dating. You're trying to find the perfect trial. You're trying to help do something wonderful and healthy for your body. You're trying to improve your quality of life. But then when I was getting rejected from all these clinical trials because I'm not ‘pristine’, so to speak, I was like, “Okay, this is really hurtful.” And I really like was taking it personally, and I thought to myself, “How many others stop at that first ‘no’ and they don't think, ‘Hey, maybe I should try another one or maybe this one wasn't the right fit?’” So I started talking about it in a different way, and I think one of the big things that's missing is, right, the lack of trust with pharma. We're not really addressing that. Like, what are they doing to show they are trustworthy? Like we need it in like those kind of clear terms.

And then I'm seeing other great nonprofits like Touch, The Black Breast Cancer Alliance, what they're doing and trying to help educate the Black community about clinical trials. But it's also too, how do we talk about it with our elders in the community, right? And we have to first acknowledge the stain on our history. And when we have, you know, a lot of times they are White doctors, you know, maybe they are saying, “Hey, you might be eligible for a clinical trial,” but are you actually like saying to the patient, "Hey, I acknowledge there's a huge stain on history when we think of Black bodies and Latino bodies as well. We acknowledge that. Let me tell you the changes that have been made. Did you know, like, if you're in an oncology clinical trial, you will not be getting a placebo. You will either be getting your standard of care treatment or the clinical trial medication." So many patients don't know that. And so, I really feel like there's a huge communication gap between providers and pharma and getting that kind of information to patients and talking about it in a way that resonates. So I was not surprised when Dr. Miller was going through her findings, but I'm also really appreciative of, okay, what is one thing that's going right and how can we build off of that? That's encouraging.

Dr. Fumiko Chino: No, I really appreciate that narrative for you. And again, it strikes back to me sort of knowledge I already know, which is immunotherapy might have worse side effects. It might be worse for women, for example, or an Oncotype score may be actually less prognostic for Black women. You know, we have some retrospective analysis showing these things because again, who was tested in these trials may not be representative of the people who are actually receiving these treatments.

Now, Jen, there was a recent qualitative analysis published in JCO OP called, "Why I Said No," and it evaluated why eligible patients with breast cancer declined clinical trial participation. They highlighted fear, mistrust, and also logistical challenges as key barriers. And you had mentioned previously that Bioethics International, your nonprofit that you helped found and lead, it seeks to, and I quote, "raise the bar on ethics, patient centricity, and social responsibility in healthcare." And of course, I see a lot of overlap in terms of what we need to improve. So outside of having better conversations and relationships with our patients like Megan-Claire outlined, how can the pharmaceutical companies have better standards to start addressing these concerns? You mentioned earlier just like at least one win that you had obtained.

Dr. Jennifer Miller: Yeah, and let me just go back to something Megan-Claire said. I found it really impactful. You said, you wanted to hear what pharma companies are doing to be trustworthy, and that's sort of the question behind the Good Pharma Scorecard. And what we do is we first engage patients to hear what do patients need to see from pharma companies, not just to trust them. You can trust a used car salesman who sells you a lemon, right? I am not interested in that. What do we need pharma companies to do so that we can advance our health, right, and yes, appropriately trust them? And so, we do a lot of dialogue with patients and also clinicians and other stakeholders, and that informs the development of our areas of focus and also the metrics that we build in.

And then Fumiko, I think you asked what success have we had with the scorecard in improving practices? Yes. So, we initially started with that concern that pharma companies are not telling us all the safety and efficacy about new medicines and vaccines. So we figured out how to measure that. So, for every product that the FDA approves, there's an approval package that the FDA releases. It's hundreds and hundreds of pages of PDFs. It's not machine readable, but if you were to be a crazy person and read all of those PDFs over and over again for every product that's approved, you could pick out all of the trials that are conducted and that the FDA reviews to decide whether to approve a product or not. There's a median of like 26 of them. You cannot use AI or any kind of natural language processing to pull out the trials because there's no pattern in the naming of the trials. It doesn't say in the FDA approval package, "Trial number XYZ." So we have a team, we manually go and read all those, and we pull out a denominator. We know all the trials that were conducted, and then we just go and see, we measure what proportion of them are registered in a registry like ClinicalTrials.gov run by the NIH. What proportion have reported results in that same registry? What proportion are published? What proportion are publicly available, meaning published or registered and reported?

The first study, it was such a low number that it was embarrassing. But I'm happy to say that at least for large companies, year after year, the score started going up. And then we created an amendment window where we said, "Here, companies, you have 30 to 60 days to improve things. We will publish a pre-score, but we will also publish a post-score." And half of the low scoring large companies took us up on the amendment window and improved things in data sharing. And so that is what emboldened us to start doing more. That's when we went to representation in clinical research, and then now we're looking at access to medicines in low-middle income countries. A new FDA approved product is tested in a median of 26 different countries if you're a large company, or 16 if you're all sized company. And generally speaking, the countries that participate in that research for FDA approvals never get market access to the products they helped test, and from an ethics perspective, that's considered exploitation. You go in, you use a population, and you don't give anything back. So now we've measured that extensively, so now we want to try to fix that.

Dr. Fumiko Chino: I love what you've done, and it really, I see a natural correlation with like for example, the Leapfrog Group who rate hospital quality and safety. And when you give a hospital an F and they're able to rate it, you know, to increase it to like an A score, it really shows that they're committed to the process. We can't improve anything unless we measure it. I know that sounds insane. Like, I'm sure every company that you had previously talked to for the pharmaceutical companies thought they were doing great, and then you were like, “Actually, not so great.” And you have to highlight it, and then you have to give them something to do to improve their score. And so I, I really appreciate that it seems very no-brainer. So, thank you for your work on that.

Megan-Claire, our last formal question is to you, which is, there was this fantastic ASCO Education Book chapter from last year. It presented a practical guide to clinical trial accessibility, including a collaborative overview and highlighting that, quote, "a shared responsibility across sectors to modernize clinical trial design, to reduce access barriers, and to ensure that clinical trial participation becomes a standard and equitable component of cancer care - we all share responsibility in this.” So in your mind, are there some low hanging fruit that we should work to start addressing first in our patient-facing interactions, or does kind of everything get equal weight in terms of what you think is important?

Megan-Claire Chase: Again, that communication, how do we talk about it? If you're going to tell me about a clinical trial, because a lot of times we're feeling the onus is on the patient, and we're like, we really need our providers to suggest, "Hey, why don't you look at this?" Or I feel like there needs to be like a middle person between the provider, have a middle person, and then the patient because a lot of that terminology we're hearing for the first time or we need a minute to even process. And then also, is this in Spanish? Is this in other languages? So we want to make sure that we're understanding it, and we really need some of that language not to be talked down to or anything like that, but just in a clear, simplified way. And also, where are the images? Like, I want to see the people who have been on these trials. And a lot of times we're getting materials where the faces don't look like ours.

Then I am someone who was diagnosed under 40, so I was getting materials of old White women and White men on there. And so it feels like, okay, you keep trying to say you're including us, but you're not really showing- we're not seeing those efforts like visually or on the page. And so, I understand that a lot of times when we're talking about clinical trials that it's the medical community and the researchers, they need to understand all of that. But why don't we have like a patient side where it's been like, "Hey, here's what they're saying in their scientific way. As a patient, here's what you need to know." And honestly, like, we need more voices like mine, quite frankly, that can bring in like the creativity to it because to me, again, that's what's missing.

And I also think too, again, if we can talk about it in a way where we're saying, "Look, we know it's problematic. We have to keep acknowledging the history," and that just never gets done. And so, you know, I want to actually bring up different ways to talk about clinical trials. So something that we do at SHARE Cancer Support, we actually have a novella, and this one in particular, I'm really proud of, helped to write and come up with the characters along with our Spanish speaking program. And it's about a Black woman and then a Latina woman and then an Afro-Latina, and they have triple negative breast cancer. One has metastatic, and we go into it in like, you know, with those cultural nuances and talking about, "Hey, this one, she decided to look into a clinical trial."

Well, also too, the other issue is access. Where are those clinical trial sites? Who's going to pay for daycare? And you're asking us to come during the daytime when a lot of us work. And if you're trying to really reach deep into the communities where maybe they are not white collar careers that they have and maybe they need to be close to a bus line, it feels so teeny tiny, so to speak, but they're major parts on the path to getting that representation in clinical trials. So I feel like we have a long way to go. Yeah, we can talk about it, but if we're not putting those little pieces to lead a nice pathway into the trial, then, then what are we doing? We just keep talking in circles.

Dr. Fumiko Chino: Yeah, no, I love it. You've actually outlined all of these different breadcrumbs that we could follow the trail to track clinical trial diversity that we're so far making, I would say, small to minimal efforts towards. And it's just some things that you mentioned that I wanted to highlight is that we already know that if you actually want to enroll a diverse sample, open the trial closer to that patient population where they live, where they receive cancer. Like we have at this point, pretty good research. You bring up the idea of like, we need something like a clinical trial ombudsman. I've been kind of shouting this idea out for a while for financial toxicity. We need a financial toxicity ombudsman, but it's- we need someone who's impartial who can communicate between providers who may have some bias, you know, they're trying to enroll on clinical trials. The thing that they're offering you may not actually be the best clinical trial for you. So we need kind of an impartial person to kind of interface. So 100%, I agree with all of that.

We are wrapping up the podcast. I want to leave just a little bit of extra time at the end if you think that there's something important that we didn't cover, if we want to talk about how the shift away from DEI is going to change the future of cancer research, or if that's just too depressing to talk about in the last couple of minutes of our conversation. I want to leave it open. Jen, anything from you in terms of wrapping up?

Dr. Jennifer Miller: I want to put a plus one on everything Megan said and her work as a trial navigator because in the bright spot analysis, when we went in and interviewed the bright spots, we came up with 14 shared factors that are associated with success, and one of them is navigators. The critical importance of navigators from symptom onset through diagnosis, through testing, through access to care and clinical trials. So just want to thank Megan for her work and amplify that in any way possible.

Dr. Fumiko Chino: Wonderful. And Megan-Claire, last thoughts from you because I think it's very fitting to leave it with a patient advocate for the last word.

Megan-Claire Chase: Well, thank you so much. It's only because of conversations like this and trying to reach different audiences that we are able to continue to have these conversations, but more importantly, have some action behind it, right? And so, I do think it's important to acknowledge, okay, we have made some great steps, but there's more. And quite frankly, the patient community and those in minoritized communities, we deserve more, and we just really need to make sure that we're trying different ways to communicate that clinical trials are safe and here's why you should consider one, and even if one is not right for you or even if you don't even need one, it's still important to know.

Dr. Fumiko Chino: Thank you so much for this great conversation today. Many thanks to Dr. Miller and Ms. Chase as well as our listeners. You will find the links to the papers that we discussed in the transcript of this episode. If you value the insights that you hear on the JCO OP Put into Practice podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts.

I hope you'll join us next month for Put into Practice's next episode, and until then, I hope your winter is starting to thaw.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

 

 

Conflicts of Interest

Jennifer Miller

Employment Company:

Company: YALE UNIVERSITY

 

Consulting or Advisory Role

Company: GalateaBio

 

Research Funding

Company: Bristol Meyers Squibb

Other Relationship

Company: Bioethics International

Company: CSL Bioethics Advisor