The Power of the Patient

[00:00:00] Speaker A: Foreign. [00:00:07] Speaker B: Welcome to the beyond the Diagnosis podcast. Today I'm joined by Kimberly Richardson, the founder of the Black Cancer Collaborative and a fierce advocate for patient empowerment and equity in clinical research. Today we're going to be discussing how patients, especially those from historically underrepresented communities, can take an active role in their care and in the clinical trial process. Kimberly, I love talking with you. This is our second podcast together and I just know that this is going to be an excellent conversation. But for those listeners who are not familiar with your work, could you tell us a bit more about yourself and the Black Cancer Collaborative? [00:00:47] Speaker A: Sure. And the sentiments are the same, Jill. I just thank you so much for allowing me this time with you today. And I am reminiscent of our very first time. We talked and it felt like the time just flew because we had such synergy of thought. So thank you again for this second opportunity. Again, my name is Kimberly Richardson. I'm born and raised here in Chicago. Created a not for profit called Black Cancer Collaborative, literally out of my emotional journey through my own experience as a cancer patient. I'm now a two time cancer survivor. One in 2013 from a rare form of ovarian cancer called granulosa cell tumor. And then right in the midst of COVID I was diagnosed with triple positive breast cancer. Very early stage, fortunately for me. Two different experiences, right. The first threw me completely for a loop because there was nothing in my family hereditarily, should I say, that would have even led me to a thought about a cancer diagnosis. And I didn't have any symptoms outside of fatigue. And I associated that fatigue, as I've said in several conversations about my cancer story, regarding the fact that I was training for a marathon. So I was as many people diagnosed on the table as they say. And so that whole process created this, this angst in me from the way I was diagnosed to the way I was treated in the surgery and the chemotherapy. And then even as a survivor, as I battle today, some of my side effects. But then when I was again diagnosed again in 2020, I was armed with a lot of information about cancer and cancer research. And I knew personally oncologists and researchers that I could go and say, hey, can you interpret this, this lab result for me? And still with having all that information, I was still relegated to a very small voice in the conversation around my treatment. Black Cancer Collaborative came out of that second diagnosis. It's like, when will our voice be truly heard? Of all the data that I had been hearing about incidence and mortality rates across cancer types as it Related to black people. Why was our, our numbers still so incredibly high? What is happening in that oncologist patient dynamic or engagement that's not quite getting to, getting to the patient and getting to their families. Whether it was about genetic testing or about the diagnosis or about what happens after you have left the care of your oncologist. So many things I was hearing in the community from black cancer patients, that was lacking. That's why I started Black Cancer Collaborative to do two things. One, to really, truly explain to patients and their families, what do you need to know now that you've been diagnosed? What do those treatment options actually look like? If you are interested, after survivorship and becoming a patient advocate, these are the steps you need to take. [00:04:31] Speaker B: And yeah, and I wanna, I wanna talk about your advocacy journey too. Right. But you said something interesting about how, you know, the first time, I feel like there's like a, there's definitely a sense of being overwhelmed, right? You've just got this diagnosis, right? Your. Your world is crashing down, right? And, and you don't know what you don't know. So what sort of steps do you recommend a patient take? Takes to educate themselves. Now, second time you were armed with some of that information and it was still difficult, right? So let's say first time patient gets this horrible news, this diagnosis that's treatable, but they don't even know where to begin and what to ask, right? So how would you kind of walk a patient through how to advocate for themselves in that situation? [00:05:17] Speaker A: The first thing I would say is understand what Google can and cannot do. Because in 2013, there wasn't a lot of research on granulosal cell tumor. And I went down a rabbit hole on Google, right? And finding information that said you're going to die in five years, you only got five years survival rate. Not understanding that that wasn't even my ovarian cancer type. They were talking about high grade serous, right? So the first thing we really, truly need to understand is the actual title of the diagnosis. What is in your chart from the pathologist that gives you the technical name, right? So that you, that's the first bit of information you have to take in. You got to wipe those tears away and you got to go into that, into my chart and understand your diagnosis, your grade, your stage, all of that stuff is glaringly right there. But it's going over your head because like you said, Jill, you don't know what you don't know. So this is where you start and this is how you can appropriately use Google. By clearly understanding the technical name of your diagnosis. Right. And then secondarily understanding what's clickbait and what are actually real sources. And this is the beginning of your patient journey, of your at your own self advocacy and your own education. Because if you take the, if you take the stance of, oh my God, I've just been diagnosed with cancer, I'm just going to do what this new person is telling me to do. Because you're not talking to your primary anymore. You're talking to the pathologist, talking to the radiologist, you're talking to this comprehensive care team, if that's what you get. Or you could literally just be talking to a nurse on the phone with, we don't have time to go through all the things you need to learn because we're calling you to schedule your chemo port procedure. It's, it's game on. Right? So there's this, this parallel universe of education. You need to learn quickly what is the pathway that you're about to go down. Right. I've been diagnosed, it's time for the, for the chemo port. This is what's going to happen. This is the chemo that I'm being given. This is how much time and this is my patient burden. This is how many times I'm going to have to come. This is the procedures that's about to happen to me. I do labs and then I go into infusion or not, depending on what those lab results say. Nobody understands that process. So it's a lot of parallel things that you have to learn relatively quickly upon diagnosis. So when you are, it's, it's a matter of asking the right person the right questions, understanding the technical term of your diagnosis so that you can do some research on your own and then understanding the appropriate resources to, to put into that Google search. Right? So it's not, it's not, I don't want to name any names, but more, I'd like to say more about the correct places to be. So the correct places are what national advocacy organizations are doing work toward your cancer diagnosis. So if you have been diagnosed with ovarian cancer, then you put in ovarian cancer, national advocacy organizations and they, trust me, will pop up. So you will see ocra, you will see nocc, you will see a lot of other local type organizations and then probe into their websites and try to glean that quick information and look at those videos from oncologists that they're largely doing in partnership with those national advocacy organizations just to get somewhat of A clue. And what are you looking for? You're looking for what questions you should be asking your oncologist about your now patient journey. What are my treatment options when I understand my stage, what does this mean in terms of my overall survival? What's the outcome of that? The therapy that you're asking me to take, is there anything frontline in terms of clinical trials that I need to be aware of? Right. And so by doing that type of research very early on, either you or family members will give you more credibility when you're in those first meetings with your oncologist, because that tends to make them sit up a little bit straight and go, oh, this is someone who's, who understands the most current research, the most current treatments. And now I have to take this time in this 10 minute meeting to explain that to them. [00:10:35] Speaker B: Right. And I think, and I'm curious to see if you agree. I think that a lot of clinicians and other folks who are kind of in this industry that we're in. Right. You yourself is an advocate and a founder of the Black Cancer Collaborative, and, and me with Inspire and my career in life sciences. There's a lot of implied knowledge there, right. We just assume that people understand the process, they understand what clinical trials are, they understand what these advocacy groups can do for you. But the reality is sometimes very, very different. You know, and before I got into this line of work, you know, I would see, I'm going to use Susan G. Komen as an example because we would do the breast cancer walk every year. Outside of that, you know, I thought they were just raising money for breast cancer research. I didn know how much else they did and that they were truly a resource for those patients. So, you know, I think it's really, really important for patients to understand that the, these advocacy groups are there for patients, they advocate for the patients and they are a tremendous resource for them as well. And I don't know that everybody, like I said that implied knowledge that, that I don't even know the clinicians would even think to like recommend that. Right. So which is why it's so important for an advocate like yourself to kind of have that conversation with patients. What else do you think that is implied? [00:11:57] Speaker A: Exactly? Because as you were saying this, I was sitting there saying to myself at that 5k walk, it's a lot of survivors who are doing awareness advocacy. So they've got the Susan K. They've got the Susan Coleman T shirt on and they're doing awareness advocacy. But that very person may be 10, 15 years into survivorship and knows absolutely nothing about research, has absolutely no need or desire to learn about legislative advocacy. Where you go from wearing a T shirt to rally days at capitol Hill and at your state capitol, to talk to your legislative officials about funding for research. And then there are advocates who will do both of those things. Awareness and legislative advocacy. But don't understand immunotherapy, don't understand the connection to the BRCA1 mutations and where we've gone in terms of treatment in just the last decade from when they were in in treatment. They don't even see it. Have no desire to know it. And there are all these like, I love to tell you, it's like you can choose your own adventure in patient advocacy. You can choose to wear the T shirt and do the 5k walks. What I promote in black cancer collaborative is understanding the research and the connective tissue between the medicine and the science, Largely because the numbers in terms of incident and mortality are still so incredibly high. If there's any subpopulation of people who definitely need to understand the connection between the medicine and the science, it's the black cancer community. Yeah. [00:13:55] Speaker B: And it's a disproportionate amount of black cancer patients who are affected by cancer. And then it does not marry with the number of black cancer patients who participate in clinical trials. [00:14:11] Speaker A: Absolutely. Where's that disconnect? Because does the oncologist have the time to explain that? And should the burden be on the oncologist to do so? I'm suggesting that as we look across the last 30 years of data that the FDA has been compiling on who participates in clinical trials, we have had this narrative of medical mistrust has kept us out of participating. And then when we see that the data doesn't bear that out, that that 3 to 4% has been across the last 30 years, that suggests that we haven't even been approached about being in a clinical trial. So what does that really mean at the end of the day? Because I'm no different from anybody else. I was shocked when I was. When I was diagnosed, I went down the wrong rabbit hole on Google looking for information about my diagnosis. So what is the thing that needs to be in the middle between that diagnosis and being able to participate in clinical trials or even help to design those clinical trials? That's education. Again, that's largely what black cancer collaborative is all about. Creating these educational modules that walk you straight through basic scientific inquiry, all the way through the drug development cycle in an easy to understand way and vetted by researchers that have worked in partnership with the organization. [00:15:49] Speaker B: Yeah. And something else that we. So clinical research is massive. It can be very complicated and it's very complex and it's very rigorous and it's very scientifically rigorous. And you had mentioned in our prep call for this, getting in front of the principal investigator. Right. So you were, you've found out about the trial, you've been accepted into the trial. Now how do you advocate for yourself when you're within the trial? Right. And because what we want to really dove into here is how patients empower themselves to become educated. Right. And to know what questions to ask and know when they can kind of push back and, and say, like, I don't understand. Right. Please explain it to me in a way that makes sense to me. And something you and I have talked about way years ago was the legalese within the consent process. So that was quite a bit there. But I'd love to touch on all of those points with you. I think it's so, so, so important for patients to understand that. [00:16:52] Speaker A: Yeah, I think that it's, you know, and again, this is across the board for any patient because this is a very difficult decision to make. Do I get into a trial? Because a trial is an experiment. And here are some folks that are telling you this is a trial, this is an experiment. And at any time you can opt out. And they sing that every five, every five notes. But what they really don't want to have a conversation about are those real risks. They put them in writing because of the legalistic side of the trial, but they don't want to hold anybody's hand and they don't want to pass any tissue as you read through all of this and try to take it all in. So you have to have your own sort of way of thinking through. Why am I participating in this trial initially? Because I think that they, they don't, they're misaligned. The researcher will tell you, hey, this is for future research. This may or may not help you, but it'll help someone in the future. And right now I've got this disease. So it's, it's sort of the, the emotional and logical things don't connect up sometimes. But now that we realize that researchers, clinical trials can be frontline, they could be a part of your standard of care that changes the dynamic. But that needs to be explained in very easy to understand language that although you are in a trial, you're still getting standard of care. If I continue to keep saying standard of care, but I never explained to you what standard of care actually means. Then you just nodding your head and going, I just hope these people don't kill me. You know, that's really where your head is. Right. So this is what I'm talking about. I'm talking about who takes that time and not just. I'm. My job as the study coordinator is to walk you through 15 pages and tell you, here's what's on this page. Let me paraphrase it all. Initial it at the bottom, tell me you understood what I said. That's a completely different process, right, from, I saw everything in writing. I saw that you said, I have to do four blood draws. I saw that. I saw you say, I read it say, there could be these side effects. Right. I read those words. I didn't process how that really is going to interact in my life. And I believe that we could do better in. And helping people fully understand what the words on the page really mean. So when we get to the four blood draws and I said, well, do you really understand what that means? That means that you're literally going to be coming to the hospital. It may take you 30 minutes to get here, 30 minutes to get home, 40 minutes to sit in, in the, in. In the chairs, and five minutes to do that blood drop. And I need you to do that four times a week. But it says four, four blood draws. And you nod your head and go, okay, for a week. But you haven't talked to me about or interpreted the patient burden as well as we could be doing. And so I'm sure that researchers would challenge me and say, is that really my role? I put it in writing. We bounce this through legal. You have every opportunity to opt out. It's like there's really no real accountability about patient burden. [00:20:56] Speaker B: Right. [00:20:57] Speaker A: It says, I wrote it down. You read it, you signed your name, and if nothing, if things don't jive, you always can opt out. But you really don't want me to opt out. You need your accrual numbers to be high. So I think I push back on that and say, you know, you got to do better and do your part to keep me in the project and help me understand things on the front end. So then I can hold your hand. Our staff can hold your hand through the process. Because you do know these risks and your body is experiencing exactly what we put on this paper. You know it and I know it. And you know the reason why you're willing to go through these risks. [00:21:45] Speaker B: Yeah. And I think, again, I think some of the study coordinators going back to that implied knowledge. It's like, well, it's, it's there on the paper. You signed it, you said you understood. But, but this is why patient advocacy in clinical research is so important. Because as you said before, some, some advocates take part in the, in the, on the research side. And, and I don't know that everybody understands what that role is. Right. And that role is to really guide the, the people who are making these protocols into taking that patient burden into consideration. Right. So, you know, I've seen protocols say, oh, you know, we want to engage them more. So we're going to have them fill out a survey, you know, eight times a day. Okay. I don't know that that's really patient. That's not necessarily patient engagement. That's a patient. That's another burden. Right. So how do you simplify it and still get the information you need and still retain these patients and make the patients feel heard and seen? One of the other things is there are some natural barriers to participation, particularly in black and brown communities. I'd love to talk to you a bit more about that and how those patients or underrepresented populations or underserved populations can push through those barriers and advocate for themselves to get access to these trials. [00:23:04] Speaker A: Right. I think we're in this very precarious space right now where there are these very unspoken mandates to say you don't really have to do that anymore. Right. You don't really have to push to see how much participation you get. Even though morally it makes sense scientifically, it should be the protocol. Right. We've discussed this before. Is this really true science when the sample size doesn't represent the total population? And for years, obviously, that has not been at the forefront of how research designs are created. It's been accepted, it's been socially accepted that we get who we wanted to accrue for a trial. Right. Then we went through this stage with the diverse action plans and the congressional mandates that said, it's important to do this. It's important for trials to be diverse. And everybody was swayed to go in that direction from FDA with the guidelines, the campaigns that academic institutions and pharmaceutical companies were doing. And now we're in a different space, you know, where it's, it's sort of anti DEI and, you know, research is literally being pulled from people who are using the incorrect words in their research. Right. I don't think pretty much anything is left outside of white, male, straight, Christian, you know, for research. So to ask now in this space, what would a patient, a black patient do to self advocate toward getting into a clinical trial when the structure seems to be falling apart is a great question to me. It still says, move forward, educate yourself on your disease and the treatment types that are available. So despite what's happening to the world around you, you're having a very direct conversation with your oncologist that says, I've heard about this trial. I'd like to find out more from the PI, from the principal investigator or from the sponsor about this trial. I want to create a pathway for myself. How do we move backwards from that? We have to have messaging that still tells black and brown cancer patients that nothing's really changing about how clinical trials are done. There may be a reduced amount of them, they may be more competitive to get into now, but the process of doing a clinical trial has not changed. At least I haven't heard from IRB that they have. It's about starting at the very beginning, Jill, identifying those black cancer patients through these institutions and through these hospital administrations and saying, now we have to develop it for all patients and say, do you understand the two tracks you could possibly be on as a diagnosed cancer patient, that you would get standard of care here at our cancer center or your cancer center may offer you a clinical trial that has to equally be a part of the conversation about pon diagnosis. And if we want to speak in sort of the anti woke policies of the day, then that applies to all cancer patients upon diagnosis. Explain to me all of the treatment options and our oncologist prepared to do that, or is there some division of labor within the cancer center that needs to be able to do that? Is it a nurse navigator? Is it a patient navigator? Can we train community health workers to understand what's in the research database for that institution? So now that you've been diagnosed that you, you get the diagnosis, you talk to the nurse, you get maybe if they have supportive services. And you also get this talk about genetic testing and clinical trials. And it's, yes, it's all overwhelming and the decisions that need to be made in a relatively rapid time frame. But this is a conversation that now needs to be packaged into the diagnosis. So I'm not just telling you about, you know, social determinants, the health kinds of questions. Now that you've been diagnosed, do you feel safe at home? Do you have good food and vegetables? Are you going to need any type of insurance support? Those things are already built into the institutions at cancer centers. Now they need to take that additional step. And there has to be someone within that division of labor, that can speak to the research side, the science side, because they've got the medical side and the supportive services side. They've got it down somewhat. There is some disparity from one cancer center to the next. What black cancer patients actually learn about supportive services at their cancer centers. That data is out there. Some people, if I sit in a support group with them, will say, yeah, somebody told me about a. A wig program for when I lose my hair through chemo. And another person will go, nobody told me about that. Somebody will say, well, yeah, we have counseling services. We've got acupuncture. We've got yoga. We've got mindfulness. And another person will say, I didn't get any of that. I'm metastatic. And there's nobody offered me any counseling services to deal with what I've been diagnosed with. So it's a lot of disparity in there. Right. But at the end of the day, if we thought about the front end of what a patient needs to know and not do so much of this work in silos, I think that it would be. It's advantageous to the patient. You have a more informed patient who can ask the types of questions that will result in shared decision making. Because we love to use that word, but at the end of the day, we can't make a shared decision when I don't. I don't know what. I don't. I don't know what I need to know questions I'm supposed to ask you. So I'm sitting here, nod my head, and then we say, that was shared decision making because I told you what to do. [00:30:41] Speaker B: Right? Exactly. And I think it's, you know, I think there's a. There's a. There's like a caregiver aspect to this as well. You know, I think, like, having that support network is so, so, so important because you're sitting there and you're getting all of this information, and you are completely overwhelmed, and you. You get every third word. And like you said, you're just. You're nodding your head, right? And then you leave and you're kind of like, what did. What did they say? Right? Like, I have no idea. And then. And then it's. And then it's, who do you ask them? Right. Who do you ask after the doctor leaves the room and they've checked their box and they've said, we've got all. We told them everything they need to know. Right. And. And now we're moving on. Right. [00:31:22] Speaker A: And you and I both know that there are mechanisms that can repeat that same information. Right. [00:31:28] Speaker B: Exactly. [00:31:29] Speaker A: In that same 10 minutes that you just, you know, you just rocked my entire world with this diagnosis. There could be a follow up in my chart that says, here are the notes from our meeting. [00:31:41] Speaker B: Yes. [00:31:42] Speaker A: Here is the notes from the comprehensive care team meeting. You're going to get a call from a nurse navigator that can, in essence, do the same as a study coordinator. Here's the minutes from our meeting. Let's walk through it step by step, help you understand what was explained to you. What are the next steps in your pathway toward survivorship? That's not done. That's. Oh, I told her, you know, she was in shock and she didn't hear me. She didn't have a patient. She didn't have a family member with her, who, by the way, is just as much in shock as the patient is and doesn't take copious notes, as y'all like to think they do. We check our boxes because we divorce ourselves from the accountability. It's sort of a cognitive dissonance. I did my job. Now the job is up to the patient. Yesterday I was just thinking about what I was going to have for breakfast, and now I'm a cancer patient. [00:32:52] Speaker B: Exactly. Exactly. And it's overwhelming. And I think then that goes back to doing your own research and educating yourself. And sometimes it takes some time. Not everybody's going to leave that doctor's office and go home and Google. Some people are going to go home and cry and panic. It has to happen on their own timeline. But they also have to know what resources are available. I think the Black Cancer Collaborative is a tremendous resource. So are the advocacy groups, and then inspire.com as well. But I think another piece of this is that, correct me if I'm wrong, but underserved populations will sometimes look at clinical trials as an experiment. You said it yourself today, it is an experiment. And it is an experiment. Right. But I think that there is a miscommunication or a misunderstanding that, oh, they want me because they want to experiment on me because of the history. Right. The Tuskegee Airmen, Henrietta Lacks. But the reality is that most of these clinical trials are made up of white men. And the reason we want to have other demographics and other races and other ethnicities as part of it is because after these drugs go to market, that's when we see them being prescribed into these populations, and that's when we start to see the safety data start to tank. Right. Because everyone biologically is different. And what affects A white man is going to affect a black woman potentially very differently. Right. And I don't know that that message has ever gotten out. Right. [00:34:34] Speaker A: And I would like to caution it. You know, you did mention, you said the Tuskegee Airmen, and it is the Tuskegee experiment, because the Airmen had nothing to do with this syphilis experiment. I just want to make sure that we. We correct that information. And again, again, it is the narrative that speaks for the black community. It's the narrative, not the data. The data suggests that the Tuskegee experiment and Henrietta Lacks and a lot of medical mistrust experiences is what is keeping us from participating in clinical trials. And yet the data does not bear out that narrative because, again, we are not. It's not as if somebody asked me and I said, oh, no, because I know what y'all did to Henrietta Lacks that that conversation is not happening. Jill. [00:35:31] Speaker B: Right. [00:35:33] Speaker A: And that bears out in the data when we continue to see 3 to 4% participation. And over the last five years, regardless of what we claim we were doing in health disparities, that number has not changed. It's still 3 to 4%. Why are we still holding on to the narrative of black folks are spooked by being in clinical trials? Why are we still holding on to that narrative when we could have spent five years on doing interventions and education and outreach? That was not occurring. What was happening was all this paperwork and meetings and panels about the problem and no real conversations about solutions. So now, five years in with no real relative change, now the rug has been pulled from out of us, from under us, and there's no way to continue the research on health disparities. And so you're asking a whole group of people to get in unison with something that wasn't benefiting them for five years. Right. We still hadn't figured out a way to get to the black community to have that conversation. Right. We. It's like you said, it's very important to talk about what the trial actually is about. It would have been more important to have a conversation about the Belmont Report and IRB and the process of human subject protections and what the role of what we have been doing since the early 1990s with IRB to protect all people in clinical trials. So that includes you, too, black and brown people. Right. That there is somebody out there subjectively looking at every step of the intentionality of an investigator. Right. But that in this five years of the health disparities era, we didn't accomplish that. There was no moving of that needle now we're sitting in a space where, oh my God, I'm no longer being able to do my research on black and brown people as it relates to plug in the disease. The money's gone. Well, perhaps we weren't asking the right research question. Perhaps we weren't engaging the black cancer community, the black hypertension or diabetes or high blood pressure or I just said hypertension. But again, none of those people were a part of being engaged in the research design. [00:38:45] Speaker B: Right. [00:38:46] Speaker A: What we saw happening was more people flooding into the market to do health disparities research, but still not asking those black and brown people, what should the research question be? How do I engage to fully accrue this trial? Those things weren't being asked. It was just, I have a requisite skill set to do research and I'm just going to do this on a, on a particular population of people. And that's what we saw happening with health disparities research. We weren't seeing anything monumental happening. So anybody with a modicum of sense would read a research article and say, oh, is that what you came up with as the outcome? Really? Really? That was sort of garbage in, garbage out. You came back with. Black people have a mistrust of being engaged in clinical trials. I've seen so many different outcomes that you just have to sit back and go, and they paid you to do this research, this what you gave them. I've heard things all the way from black people were studied. And the reason why they don't participate in clinical research is they have a spiritual background that says, I don't need a scientist, God will heal me. Again, another narrative pushing out there that generalizes how black people feel about clinical trials simply because we're being penalized for our spiritual beliefs and attaching that to science and saying, oh, we don't believe in science, we believe in the Lord. It's like, oh my God, there's plenty of paid to finish this research. It's crazy, right? [00:40:58] Speaker B: There's, there's plenty of white people with that belief too. So that's, and that's not preventing them from care. [00:41:05] Speaker A: An oncologist will read that and come into a conversation with somebody as they've been diagnosed and, and they will ask you the craziest questions, really, do you have strong beliefs about God or you're a churchgoer and automatically it'll be a part of their clinical notes. Because I went to a conference where somebody, you know, presented on this backwards thinking research that said black people will not participate in clinical trials because their Spiritual beliefs are stronger than science. So I'm not going to bring up this clinical trial to this black woman. [00:41:46] Speaker B: Right? So. So it sounds like that is a huge stretch. However it sounds, it sounds like there's one of the biggest barriers for black and brown participation in clinical trials is access. Right? It's getting your healthcare provider, whether it's your oncologist or your specialty provider or even your hcp, to even broach the conversation with you. Which is why it's so, so, so important that all patients, regardless of race, gender, ethnicity, advocate for themselves and know what questions to ask. Because, yes, they're not always going to bring it to you. You need to know how to ask for it for yourself. [00:42:34] Speaker A: And the access that you're talking about is not as simple as one would believe. There's also spatial mismatch in trials because a sponsor will get use a site like a cancer center that is literally 15 minutes away from any marginalized neighborhood. But all the trials don't match the types of cancer that we're finding in the data. So you might have cervical cancer, might be very highly prevalent in a community neighborhood, say in Chicago, that's literally 15 minutes away from three comprehensive cancer centers. But when we dig further into those trials and we see what trials they're trying to. What their disease teams are trying to accumulate and engage people on clinical trials. My cancer type is not even a trial. Here is some rare, weird thing that you're looking for on a particular subtype of cervical cancer. So all the black people that are in that neighborhood, that's 15 minutes away by bus, that's access, Right. So I can get there, but there's a spatial mismatch in terms of the trial that's offered. So it's great that we have all these trials and it's great that the sponsor has, we have all these sites in Chicago for these particular trials. But again, the type of the trial doesn't match the need of a black cancer patient by cancer type. So again, it's the same conversation. It's, oh, you're not participating, you don't have a trial. I can get in. [00:44:40] Speaker B: Right, right. [00:44:44] Speaker A: And who's accountable for that? Are we looking literally at the data, the incidence levels, the incident rates of what types of cancers are actually present in a neighborhood, in a urban city, in a rural space, in a state? And then saying, are our sponsored sites matching the incidence of these types of cancers, or are they out here just doing, oh, this is what, you know, this is what my senior researcher was interested in. So we applied to be the site for this particular. This trial. So you're doing all this research, but for who? [00:45:34] Speaker B: Yeah. [00:45:36] Speaker A: I need. Might be in Cleveland. [00:45:39] Speaker B: Right. [00:45:39] Speaker A: That's what I'm saying. [00:45:41] Speaker B: Right. There's no, I mean, there's no guarantee that anyone will have a match nearby. And that's. And that is it. That is another barrier. That's always been a barrier. That's why the decentralized trials were such so appealing to patients because it meant you didn't have to travel across the country or state to get to the site. Right. And I think, I think since then, since COVID which forced everybody to decentralize and to do it that way, there's been a bit more flexibility with it. But you're right, if there's. If you need that blood draw as an example, four, four times a week and has to be done at the site, you have to be near it. Right. And that's. That is. That's a barrier for. For anyone who works full time. Right. What are you can't get off. [00:46:26] Speaker A: Couldn't the study team have been nimble enough to say, you know, send a lobomis. I'm sorry, I'm not saying that correctly, but the person who can do a blood draw, send them to my house. [00:46:39] Speaker B: Right. Some trials do, I think. [00:46:42] Speaker A: I think or ask because some people, you know, who are really super sick and don't have the supportive services may have a messy home and. And will say no. And we don't really know why they rejected that service. And it could be connected to something incredibly personal. Right, Right. [00:47:02] Speaker B: Yeah. And I think trial by trial, those things do vary. But I want to make sure that our listeners know how to find you. And the Black Cancer Collaborative, if they want to do their own research and if they want that support. Where would you direct them to go? [00:47:24] Speaker A: If they want to learn more to our website, we have a email that's info blackcancercollab.org infolackcancercollab.org and I personally respond to all of those emails. We also have a website which is www.blackcancercollab.org. i try my best to be involved with as many national advocacy organizations and we don't really recruit. We do a lot of word of mouth. Right. Because we're very interested in representing the black cancer story, but also helping survivors understand that they have a pathway towards patient advocacy and helping them to navigate that process and to becoming an advocate. We are funded to do that with several different academic institutions and pharmaceutical companies. And so we have that caveat of our organization, it's most important to have more trust bearers as patient advocates that can help the newly diagnosed understand just through their own lived experience. Their lived experience also helps researchers to create better research design. It's a, it is a twofold mission, if you will. [00:49:06] Speaker B: Yes, yes. And those same advocates can help you find the resources that you need to educate and get the answers you're looking for. Yeah, I mean, thank you so much. We, we always, we always go over, we always have the longest podcast, but, but it's just because you're so easy to talk to and this is always so, so wonderful having you on these podcasts. And I, I really appreciate your time, Kimberly. [00:49:30] Speaker A: I feel the same way about you too. Really easy just to have a honest conversation without it having to be scripted or prescribed or me feeling as if I'm doing shout outs or shameless plugs. [00:49:47] Speaker B: I agree. I agree. Yeah. And it's. Everything that you shared today is so important for. Especially for newly diagnosed patients who just feel lost and overwhelmed. And it's daunting. It's a daunting experience. And the implied knowledge that researchers and clinicians and even nurses come into these situations with, it really does not. It does patients a disservice. And I thank you so much for all the work that you're doing. It's really, really important. And I wish the Black Cancer Collaborative the best of luck. And, um, we'll stay in touch for sure. [00:50:27] Speaker A: My party message. It is extremely important for patients to understand their diagnosis, their treatment, and the survivorship of this disease. It's not a death sentence in many instances, but it is very, very important that you, you are doing your part in understanding your disease. For black people in particular, the numbers are still incredibly high, despite the data from the American Cancer Society, despite the data from NCI that says cancer is going down where it's still going up across cancer types for black people and brown folks. It's very, very important that you educate yourself through self advocacy, understand your diagnosis, and understand what's about to happen to your body, period. There's this no other way to survive cancer without having some self knowledge. [00:51:34] Speaker B: Completely agree. Thank you so much, Kimberly. I really appreciate it. [00:51:38] Speaker A: Thank you for the opportunity to talk to you again, Jill. [00:51:41] Speaker B: You too. Thanks.