[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope living beyond cancer, you find hope, healing and empowerment.
Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:01:10] Speaker C: Hello, everyone. This is Gail, AKA Sunshine. Today we are doing episode two with Valerie Trainum. Valerie, welcome back.
[00:01:20] Speaker A: Thank you. Happy to be back.
[00:01:22] Speaker C: In our first episode, we talked about understanding challenges and root causes of inequities in clinical trials.
And today we're going to take it a step farther to the. The good news, I guess, is breaking barriers and creating change in clinical research before we dive in. Valerie, just in case there's anyone who wasn't or hasn't listened to the first episode, I'm wondering if you can just kind of give us a brief introduction to who you are.
[00:01:52] Speaker A: Yeah. So I'm Valerie Trainedum. I live just outside of Chicago and the western suburbs.
I'm a multiple myeloma and breast cancer thriver, and I do a lot of work in patient advocacy and raising awareness of both diseases and just educating communities, the marginalized communities, about clinical research and what it is and how these communities can get more involved.
Great.
[00:02:22] Speaker C: So why is it important to raise awareness about the inequities that exist in regard to access and representation within clinical research?
[00:02:34] Speaker A: Yeah, it's important because it leads to change.
There are many diseases that are incurable, like multiple myeloma.
And we think of, okay, how do we reach a cure?
We have to have everybody involved.
Multiple myeloma does not, you know, affect only a certain subset of people. It affects all different types of people.
Within the African American, Hispanic communities, you know, we're seeing that it's. It's double the rate in a lot of instances.
So we have to learn that, you know, in order for there to be a cure, these populations have to be included in research because we want a cure for all.
That's what cure is. So we have to be included in that.
[00:03:24] Speaker C: Well, that is interesting. So you're saying of all the cases, African Americans and Hispanic people make up half the actual incidences or diagnoses, but do they make up half the number who participate in trials?
[00:03:39] Speaker A: Absolutely not. So with African Americans and multiple myeloma clinical trials, it is about anywhere from 6 to 7%, and the Hispanic population is about 3%.
So even though these populations make up about 20% of all cases.
Very underrepresented in the clinical research.
[00:04:03] Speaker C: Yeah. Wow.
So how can we improve that? How can we improve access to clinical research and healthcare support for communities that have historically been marginalized or underrepresented? Just as we just spoke about.
[00:04:16] Speaker A: Yeah, I say access can be improved by partnering with local communities, community leadership. You know, within every community, there are trusted leaders. You know, they're just people that in the community, the people look up to them. They, they, they, they're trusted partners.
So partner with those individuals. Let them know what we're trying to accomplish, you know, with the clinical research and provide, and I say this, provide culturally relevant information.
[00:04:56] Speaker C: And when you say that. Yeah, I remember you saying that actually in our first episode. And I wanted to ask, so I'll ask now, what does that look like? What does culturally relevant look like?
[00:05:06] Speaker A: Yeah, so it's, it's information that looks at the culture that the person is in.
You know, it looks at how the information is written, how it's being presented. Like, everybody doesn't like brochures. Everybody is not going to take a brochure and they're going to read it. You know, it may take a video for someone, it may take a YouTube video like we, you know, we're doing. It may take something like that. So it's information that's relevant to the people that you're trying to reach, information that is understandable, you know, to that subset of the population there.
So it helps to build trust as well. That helps to build trust, you know, and that's the first step, you know, when we think about this.
[00:05:57] Speaker C: Yeah. So it's everything from literally the way it's presented, video brochure, to the way it's written. I'm sure photography, pictures, physical representation. I mean, I'm sure it includes all of that.
[00:06:14] Speaker A: Yeah. You know, when, when there's a brochure and when I see a brochure, does anybody on it look like me?
[00:06:21] Speaker C: Right.
[00:06:22] Speaker A: Is this for me? It needs to be representative of who you're talking to.
[00:06:27] Speaker C: Yeah. Yeah, that completely makes sense.
Today's episode is brought to you by Lily. Cancer changes lives.
Clinical trials can change cancer. To learn more, visit cancerclinicaltrials.lilly.com that's cancerclinicaltrials.lilly l I l l-y.com so how can we empower communities through education and inclusion? Encourage more equitable participation in these clinical trials?
[00:07:03] Speaker A: Yeah, yeah, someone answered that. But I want to go back to the question.
I also think that we need to ensure that research teams and care teams also reflect the communities that they serve. And that's going to help foster inclusion and better communication as well. So that's another thing when we think of clinical trials and information like that. And I also want to say remove barriers like transportation, technology gaps. You know, we think of Internet access and things of, like, things of that nature.
And then we already mentioned, like, the language. Just ensuring that the language is, you know, you're talking in the language that's understandable, that they can kind of relate to as well.
[00:07:57] Speaker C: Yeah, well. And as we've talked about already, all of that builds trust.
I would think all of that builds a willingness to participate.
[00:08:05] Speaker A: Yeah, yeah.
[00:08:06] Speaker C: More willingly.
[00:08:08] Speaker A: Yeah. So. So I, Again, it's. It seems like it's the.
It seems like it's the same thing, you know, when we say trust building, trust building. But it's. That's the key to it. You know, if I trust you, I'm going to be more likely to listen to what you say. I'm going to be more likely to follow through on what you're saying. I'm going to be more likely to join you in what you're doing. If I trust you, if you've proven that, you know, this is you, you are really concerned for me and about me.
Right.
[00:08:43] Speaker C: Well, and that even goes back to what something we said in the first episode, that they want to feel seen and heard. They want to feel like they're more than just a number being pushed through or something that's being studied.
Right?
[00:08:55] Speaker A: Yeah. Yeah. I also think of building trust through, you know, transparency. Now, we, in the first episode, we talked about the things that happened with Tuskegee and Henrietta Lacks.
I think it's when people understand, okay, what has been put in place to ensure that those things never happen again, that we don't ever have to experience those things.
So explain the process from the very beginning. You know, how patients are selected. How does one, you know, even. How is it even determined that one would be a good candidate for this particular clinical trial?
I think it's. You have to explain how the data is protected, you know, because a lot of times that's one of those things. I don't want to give you my information because I don't know what you're going to do with it. Can I trust you with that?
So essentially, just explaining to the individuals how the data is handled, how it is secure, and things that you don't have to worry about it getting into the wrong hands, just explaining the benefits of it as well as the risk, you know, that's in full transparency. The good and the bad. You have to talk about that as well.
You know, just invite that open dialogue, that conversation between you and in your care team there.
One thing that I'm big on, a big component is including communities in research.
Let community members work with the design team.
Who better is going to understand it than somebody that is going through it and it's going to know what this would look like on the backside of it, you know.
[00:10:53] Speaker C: Yeah, yeah.
So back to the question I had asked you about empowering communities.
How are we going to do that through education and inclusion so that we encourage this more equitable participation.
[00:11:08] Speaker A: Yeah, I see. Ensuring that the research team is diverse as well.
You know, people that understand the community should be on the team. That's, that's, you know, that's, that's making this research happen because they know what's going on within their community.
I also say make sure that you are sharing feedback. You know, a lot of times you come and get information, but it's never shared. Well, what were the results? What happened with this information that you received? So make sure that you're sharing data back to the community in understandable ways that you know, that the community can understand.
And again, it goes back to establishing those long term partnerships. Don't just show up for recruiting.
Invest in the community throughout the way, you know, continue to have that, those year round education. They could be listening sessions, they could be just sessions to where you're coming in and just being there. We don't want anything. We just want to come in and just pour into you just to make sure that you are all right. It's those types of things that, that you know, that make a difference.
[00:12:31] Speaker C: Yeah. And listening sessions, you mean basically gathering people from the community and getting feedback on the trial, on the way it was presented, on, on all of those things.
[00:12:45] Speaker A: Exactly, exactly. Come in, bring some food, let's sit down and chat. Let's talk about this.
[00:12:52] Speaker C: Yeah, yeah.
Is there anything else that you would want to share about?
Specifically this idea of breaking barriers.
Right. And making change. I mean creating change so that there is better representation in these trials so that everyone can benefit from it.
[00:13:10] Speaker A: Yeah, change is hard and it's hard for everyone.
But when you're working together it makes it a little easier. When there's give and take, it makes it a little easier there. So just know that when you're, when you're coming in and you're listening to those communities, you're making the communities feel heard that you're, you're going to go far with those communities.
When people know that you care, they're going to be willing to help you.
[00:13:41] Speaker C: Yeah, definitely. It all comes down to that trust, like we've talked about repeatedly.
Well, every time I end one of these episodes, these podcasts, I like to ask a very serious question.
Marshmallows over a campfire?
Slow and steady or flaming Crispy?
[00:14:00] Speaker A: Flaming crispy.
[00:14:02] Speaker C: No hesitation.
[00:14:03] Speaker A: Crispy? Not at all.
[00:14:06] Speaker C: Valerie, thank you so much for joining us for both episodes, for talking about everything from the root causes to the ways that we can create change. I really appreciate your time and your input here.
[00:14:20] Speaker A: Thank you. Thank you for having me.
[00:14:22] Speaker C: Those of you listening, until the next time we gather around the campfire, keep Living Beyond Cancer.
[00:14:34] Speaker D: Thank you for listening to this episode of Campfires of Hope, Living Beyond Cancer. For more information about Epic Experience and our programs, or to donate, please visit our
[email protected] Music for this podcast is provided by Moonshiner Collective. If you enjoyed this episode, please rate and review us so we can share our story with more people. Also, be sure to subscribe wherever you get podcasts so you'll know when new episodes are released. We hope you come back and join us for our next episode.
[00:15:14] Speaker C: Family Man Woke. We will rise once again.
