Trials with Maya Z

Maya Zlatanova, CEO TrialHub (00:00)
Hello, everyone. This is Maya with Trust with Maya Z. And I have the pleasure today to bring you one more patient advocate and a patient, Heidi Floyd. Yeah, I became a little more excited because Heidi has an incredible story. was a patient with breast cancer. actually since

2005, she decided to become also a patient advocate and share her story loud. The reason why I became very excited, but also nervous, you can tell by my voice, is because I had one of my best friends went through a breast cancer. And yes, this is, let's say, a very personal story. And the way Heidi went through hers is absolutely incredible. So, Heidi, first of all, welcome. Thank you so much.

Heidi Floyd, Patient advocate (00:50)
So, Heidi first of all, welcome. Thank you so much for sharing your story, only at Trials with Maya Z but also

Maya Zlatanova, CEO TrialHub (00:54)
for sharing your story not only at trials with Maya Z, but generally speaking, because I know this is very difficult. And yes, let's start with just understanding a little bit more about yourself,

Heidi Floyd, Patient advocate (01:03)
Sure. So I am someone who was always aware of breast cancer. My mother passed away from breast cancer when she was quite young. She was early 40s. And all the women in my family have had cancer of one sort or another. So it was something that I was familiar with. I did not anticipate that I myself would be diagnosed. I was 36 when I was diagnosed and I had just found out I was pregnant. So that's

Maya Zlatanova, CEO TrialHub (01:15)
to hear that.

Heidi Floyd, Patient advocate (01:30)
you know, that kind of care is very difficult because there are not a lot of, at that time, there were not a lot of oncologists who would take care of me. I had to make the choice, you know, do you want to continue your pregnancy or do you want to go ahead with cancer treatment? The two of them were not matched at that time. So I had to look around and find an oncologist who would treat me while I was pregnant. And so we actually did find a remarkable, remarkable doctor who was

wise and knowledgeable, had executed clinical trials. He worked in the lab as well as in clinics. So he was learned and quite wise and explained to me, even though I was not part of a clinical trial, there were people that had come before me. So I was the recipient of trials. We actually went through my entire pregnancy with chemotherapy. And they had learned, of course, over the years that you could not, you you

You can't have radiation when you're pregnant. can't have elaborate surgeries, things like that, you're not supposed to. So we did just chemotherapy while I was pregnant. so that you and I were just discussing, looks, you know, to a lot of people, it's almost inconceivable being pregnant, going through chemotherapy. I had had, so this is my fourth child that I was pregnant with during that time. My previous pregnancies, I was wildly sick during all of them. So I mean, from the moment of...

Maya Zlatanova, CEO TrialHub (02:53)
You

Heidi Floyd, Patient advocate (02:56)
conception until birth. So for me, when they're like, you know, you're going to be quite sick during chemo, and I was like, whatever, it sounds just like pregnancy. So of course, I make light of that. you know, the other the other things that come with chemotherapy, you know, the unmitigated exhaustion and hair loss and, you know, you know, the mental health challenges that come with that. So it was layered on top of that. the the base thing that everyone seems to think about is

Maya Zlatanova, CEO TrialHub (03:05)
Ha ha ha!

Mmm.

Hmm.

Heidi Floyd, Patient advocate (03:26)
the getting sick, you know, while you're on chemotherapy. And for me, that wasn't the biggest part. The biggest part was everything else because I had, was quite used to that due to my other pregnancies.

Maya Zlatanova, CEO TrialHub (03:28)
Yeah.

One thought is to think about being sick in pregnancy. I can definitely understand you because I had two pregnancies and the two of them I was also quite sick. So let's say that I'm one step closer to understanding what it's like chemotherapy. I don't want to understand it in reality, sometimes we need to. Life is life. Heidi, you decided to turn this experience into something better.

Heidi Floyd, Patient advocate (03:44)
Yeah.

Maya Zlatanova, CEO TrialHub (04:06)
And you decided to become a patient advocate and help companies and help research, help the life sciences industry in general to better understand patients and create treatments in a better way for patients, which is very admirable. Like, thank you so much for doing that. Can you tell me from your experience, like for so many years now, why you decided to do that first, but also

Heidi Floyd, Patient advocate (04:06)
Can you tell it to become a patient advocate?

Yep. Yep. Yep.

Yeah.

Maya Zlatanova, CEO TrialHub (04:36)
Why do you believe this is so critical for companies to take into consideration the patient experience and the patient journey before doing any clinical trial, before planning any project?

Heidi Floyd, Patient advocate (04:43)
Well, yeah, yeah from the beginning I agree. That's it. That's a great question. I I decided to because I realized you know what watching Being intimately involved as a caregiver to my mom when she was going through her treatment You know, I know that if she had gotten a second opinion things would have been different I know that she if had she enrolled in a clinical trial, it would have been very different for her but

Maya Zlatanova, CEO TrialHub (04:59)
mmm

Heidi Floyd, Patient advocate (05:10)
It wasn't and I learned that by watching her walk through it and then doing research on my own just just kind of diving in and saying, know, if you give donations to such and such and such and such, where are they going? What are they doing? And then when I was going through my own diagnosis, I felt utterly alone. I was the only one who was in her 30s getting chemotherapy while pregnant. You know, I was there with people who were going to be great grandmothers. You know, it's a very different experience for someone who's young going through

through cancer. And so kind of forward focus, you know, when you're going through an experience like that, and if you're a mom, all you think about are the children, the next generation, you know what I mean? And clinical trials are so crucial, not just for us middle aged moms, but for the next generation and the next generation. we, you know, there are kind of two kinds of people in this world, the type of people who believe, well, I had it tough, so you should have it tough. Or,

Maya Zlatanova, CEO TrialHub (05:59)
Mmm.

Heidi Floyd, Patient advocate (06:09)
I had it tough, so I'm gonna make sure you don't. I'm in that second camp. I know what it's like to go through that and no one should. So if we can make it better for other people, yes, we absolutely should. The onus is on us to do that. And I think it's crucial for companies of pharmaceutical medical community to look at patients and engage them, like you said, early on, way before you even think about designing a clinical trial, you should have.

Maya Zlatanova, CEO TrialHub (06:12)
Yum. Mmm.

Heidi Floyd, Patient advocate (06:36)
patients embedded in your company that you can turn to and talk to about everything so that by the time you roll around to designing a clinical trial, you've already got three people that work there that you can bring in at any moment to talk about them. And I don't mean patient advocate to be professional patient advocate groups. Some of them are fantastic. Some of them just want money, like it's a business for them, right? So

Maya Zlatanova, CEO TrialHub (06:48)
Mm -hmm.

Heidi Floyd, Patient advocate (07:04)
In the end, they're not looking actively to engage with people. Some of them are not looking actively to engage in the voices they need to hear from the minority populations, the underserved populations, people that can't afford to go to pharma meetings. You know what mean? Those are the voices you need to hear from. If you're looking to tailor a clinical trial around a specific group, you can't go to a, you know, really large patient advocacy group and just hope that somewhere in there is this specific type of

Maya Zlatanova, CEO TrialHub (07:09)
Yeah.

Heidi Floyd, Patient advocate (07:34)
community, you have to go to that community. You know, don't go to the real large patient advocacy groups, go to where they live. If you want to, if you want to engage with those type of patients, to them. You know, don't take the easy road and go to patient advocacy groups, go to the actual patients. That's my, that's kind of my big thing.

Maya Zlatanova, CEO TrialHub (07:37)
Yeah.

But why is it so important, Heidi like from your experience, have you seen any like scenarios where companies doing that get way better results or the opposite?

Heidi Floyd, Patient advocate (07:57)
your experience? Have you seen any scenarios where a company doing that gets way better results or the opposite? sure. Well, I've seen the opposite. I've recently engaged with a couple of and by that I just mean conversations and talk to because I'm not compensated in any way by any pharmaceuticals or anything like that. I've seen companies reaching out to actual patients. And that's beautiful. I've also seen on the other side, you know, I've

been kind of an advocate, an advocate advisor. So people will come to me who are in clinical trials, or their sisters will reach out or their bosses will reach out. Somebody will say, Heidi, I've got this friend who's in a clinical trial, and she's really struggling. Can you talk to her or him? Sure. I meet with them. And they, they feel like and this is universal. It doesn't matter the disease space. It doesn't matter, you know, age, race, gender, none of that matters. It's the same voice. And it's always saying things like, well,

Maya Zlatanova, CEO TrialHub (08:33)
No.

Heidi Floyd, Patient advocate (08:56)
This is really difficult. I don't want to bother my doctor. I don't want to like tell them I'm just going to quit quietly. And they're the voices that clinical trials need. People in clinical trials don't realize that they're the most important thing and that's not being expressed to them. It's not a relationship that hasn't been established. So the people that are in clinical trials need to understand they're in charge. It matters. It's not a light switch. know, like this medicine is too hard. So I'm out.

No, talk to your medical professional, talk to the people running the clinical trials, because it's a dial. They can adjust it. Yours is the voice they need the most. You are the underrepresented community, you're who they're trying to reach. You're in charge of everything. You are the most valuable thing, but they don't feel like that. They feel like they're just a name on a spreadsheet and that's heartbreaking. So that's why it's so important. They won't be a number on a spreadsheet that says, well, they bowed out. Why?

Maya Zlatanova, CEO TrialHub (09:48)
Yeah

Heidi Floyd, Patient advocate (09:56)
What is the reason? And if you had a relationship with them, you would know why, you know, that they can't afford to go to the treatments or their spouse is pressuring them or there's a difficulty in sticking to it. So that's really important.

Maya Zlatanova, CEO TrialHub (09:56)
Yeah.

I was going to ask you exactly that, Heidi. What sort of observations, like, is there any reason that repeats itself for quitting from a clinical trial? Is there anything that's very common that people say, well, I can't do it anymore?

Heidi Floyd, Patient advocate (10:13)
Is there any reason that it refutes itself from clinical trial?

Yeah, a lot of it. And again, I'm only based in the US. So my, my vision is very limited. When I've talked to clinical trials in other countries, it's just very different because your, your, your medicinal care is different. You know, your, way you treat people. Yes, completely different. I'm just as a caveat, I'm only speaking for the US. A lot of it in the US is financial, a lot of it. So if you can afford, you know, the insurance,

Maya Zlatanova, CEO TrialHub (10:27)
Yeah.

Mm -hmm.

Your standard of care is different basically. Yes. Yeah.

Mm

Heidi Floyd, Patient advocate (10:51)
then it's not an issue. One thing's, however, there's still the matter of getting, driving physically to the clinical trials because a lot of people, if they're in rural areas, they can't get in their own car and drive because it could take a long time. And it's even as simple as when, if you do get a ride, if you are able to drive, can you afford to park in the parking space? I mean, it's little things like that that no one thinks about, because it's, if you're a doctor conducting the clinical trial,

Maya Zlatanova, CEO TrialHub (11:14)
Mmm.

Heidi Floyd, Patient advocate (11:21)
$5 for parking is nothing. But if you're living in a rural environment, the gas to get there, the car to get there, parking there, buying your own lunch, like all of that stuff equates to a lot of money. And let's say you're a single mom, you have to do all of that and make sure you get back in time to pick up the kids from school. Now you can't afford a babysitter. Like all of these things, a lot of it is financial based burden. And a lot of it is geography.

Maya Zlatanova, CEO TrialHub (11:31)
Yeah

Heidi Floyd, Patient advocate (11:47)
You know, if you live in a rural part of Alabama, you're not going to be engaged in a clinical trial if you can't get there. If you can't, you know, would it help if someone came to you? Absolutely. If again, I go back to the same thing, it's relationship based. If you don't have a relationship with the patient for whom you're with, whom you're conducting this clinical trial, you'll never get the answers. You won't know what their world looks like. You won't know that their, their husband is telling them that this is a waste of time.

or that their best friend is saying, I can't drive you today, or their work is telling them you take one more hour off and you're gonna lose your job. If you had a relationship with that patient, you would know.

Maya Zlatanova, CEO TrialHub (12:16)
you

Yeah, but like, is that even feasible, Heidi? Because I'm actually from Europe. And in Europe, for example, I see more and more doctors just simply don't have the time. And I can, yeah, exactly. And I think that in the States it's more or less the same. Like doctors don't have the time. So if you're close, but how do you build this relationship, close relationship where you don't have the time, have 10 minutes per visit and I don't speak about clinical trials. I speak about the general practice. Exactly. So.

Heidi Floyd, Patient advocate (12:37)
Time, Yeah, exactly. I think the same thing to more or less the same. Yep. Don't have the time. If you're close, how do you build this relationship? Yep. Relationships, we don't have the time. We 10 minutes for visits and I don't speak about regular visits. Regular visits, yep, of course. Yep, yep, I agree. Usually they have like three minutes, right, on average to spend with each patient. It's not on the doctors. However, the doctor has a team of people and I think with proper training that team.

Maya Zlatanova, CEO TrialHub (12:59)
See?

Heidi Floyd, Patient advocate (13:06)
So you've got someone sitting at a front desk who checks you when you go and you sign your name, I'm here, what have you. If that person asked one question quietly, cause you don't want everyone in the waiting room to hear, right? But just a general observation, how are you? Great. You know, I had a hard time parking, whatever. Great. That information then gets collected and reported to the next person who takes you in to weigh you and take your blood pressure, right? Then that person, you're in a more secure environment. That person says, Hey,

Maya Zlatanova, CEO TrialHub (13:09)
No, no,

course.

Heidi Floyd, Patient advocate (13:35)
You know, is anything weighing on you today? Anything stressful for you today? Now you have two questions answered that the doctor doesn't have to ask. And then the third person who brings you into the room with a clipboard and sets you up, they ask another question, right? A little bit more in depth because now you're completely alone. It's completely private. You know, what's the best thing that happened to you this week? What's the worst thing that happened to you this month? Now you've got four questions that have been asked that could be very key for mental health issues.

Maya Zlatanova, CEO TrialHub (14:00)
Yeah.

Heidi Floyd, Patient advocate (14:03)
So when it's reported to the doctor, not just their blood pressure, not just their weight, not just what they're suffering from or what have you, but also, you know, she said something about her boyfriend, like was yelling at her. Like now the doctor has a little bit more of a perspective. He can't do a deep dive, but he could say, we have a mental health specialist. I'd love to have him come in and talk to you. You know what I mean?

Maya Zlatanova, CEO TrialHub (14:26)
Yeah.

Heidi Floyd, Patient advocate (14:27)
So the doctor, it's not all on the doctor. It's part of the team. The team could be trained to ask these crucial questions. So that if there's little flags or little celebrations, you you have a three year old, your daughter celebrated her third birthday. Isn't this wonderful? Like that could change the tenor of the entire meeting, you know? So good and bad, it's not all on the doctor. It's also not on all the patient. It's a whole team. And again, if it's a relationship, then the next time the patient comes, she'll say,

Maya Zlatanova, CEO TrialHub (14:46)
Yeah.

Heidi Floyd, Patient advocate (14:56)
yeah that's the nurse that I talked to last time. I'm going to tell her more, listen you know my boyfriend's still yelling at me. You know I mean? You still, now you build, you build, you build that relationship. yeah exactly.

Maya Zlatanova, CEO TrialHub (15:02)
Yeah.

a report. Yeah. I wonder, Heidi, because sometimes actually in the States, this is more feasible. This can be achieved because you have these research centers that are totally dedicated on clinical research. So you can literally make sure that these teams work together, every single one of them to collect information and maybe have like their systems to collect this information, make sure that they're on top of like patients. But then again, I'm thinking can also technology

Heidi Floyd, Patient advocate (15:17)
Yep.

Yep.

Maya Zlatanova, CEO TrialHub (15:32)
somehow support this process of understanding how our patients and have you seen any success stories when technology, an app or I don't know, something that makes these people feel a little bit more secure or it has to be always a person.

Heidi Floyd, Patient advocate (15:46)
It doesn't have to be in person. I found, so during COVID, we learned a lot about how we can do things remotely, you know? And that was the first step. know, the first step as a breast cancer patient to engage with someone. You know, I remember the first time my oncologist said, well, we're gonna have our interview over the phone. like, am I gonna take my shirt off on camera? Cause that's not who I am. But she's like, no, goofball, that's not how this works. so.

Maya Zlatanova, CEO TrialHub (15:51)
Yeah.

Yeah.

Yeah.

Heidi Floyd, Patient advocate (16:14)
That kind of conversation happened, but during, right at the beginning of COVID, I had an issue that I needed physical therapy for, and I'm like, how am I gonna go to physical therapy if we can't talk to one another? Well, they've made great strides. So there was a device that I was signed up for, and it was little straps that you put on your body with little diodes. And I learned how to do, they sent me a little tablet, and I learned how to do stretches and adjustments and things like that, and they recorded

Maya Zlatanova, CEO TrialHub (16:15)
Yeah.

Hmm.

Mm -hmm.

Heidi Floyd, Patient advocate (16:44)
not my image, just the dots so they can see, she can't bend her arm back because of the surgery she's had. Here's what we can do to gently move that arm back. So they literally just looked at little dots and then we'd check in once a week. So I would do this every day with this little tablet with all my straps on, no humans involved, just me. And then she would connect with me for 15 minutes on Friday and say, when you reach your arm, be sure to go up a little bit higher every day, just little tips.

Maya Zlatanova, CEO TrialHub (16:46)
Yeah.

Hmm.

Heidi Floyd, Patient advocate (17:12)
And so I was working with this AI, know, this device, not a human, just this device. I had a once a week check -in and it engaged my mobility. It allowed me to have more mobility. Whereas if you had asked me five years ago, if that would happen, I'd be like, no, I'm not going to strap things on. And like, that's not going to happen, but yes, there have been things. So it's just that engagement, you know, it's getting over the trepidation and fear trying to do so.

Maya Zlatanova, CEO TrialHub (17:24)
Nice.

Yeah.

Heidi Floyd, Patient advocate (17:39)
and then trusting what your doctor tells you. But again, because I had the relationship with my doctor and I had good insurance, I was able to get this device to trust what my doctor told me and then move ahead. So I had a complete AI situation happening on my body and I was good with it, but that's not who I am naturally. I'm completely reticent. Yeah, yeah. So it can work.

Maya Zlatanova, CEO TrialHub (17:59)
Yeah, yeah, that's very interesting. It's very interesting. If I'm to summarize, building this relationship, just to make it very pragmatic, building this relationship actually means that the patient really believes that you care. You may not be just a doctor, but the whole team, the whole team, even let's say the sponsor behind the clinical trial, that they genuinely care about you, you as a person.

Heidi Floyd, Patient advocate (18:16)
Yes, you must care.

Maya Zlatanova, CEO TrialHub (18:28)
and they take care of you. And in order to do that, you have to show that you know their journey. You understand their standard of care journey, but you also take care of the journey throughout the clinical trial. You adapt in order to help them out. And that's really critical because otherwise, if the patient doesn't feel that they're being taken care of, they simply decide to quit. And that's a huge problem. Heidi I know you need to go, but I have...

Heidi Floyd, Patient advocate (18:43)
Yes, yes.

Yes, no trust.

Maya Zlatanova, CEO TrialHub (18:54)
One last question, one really quick question because I think it's important and it's a big topic as well. Do you think pregnant women should be a part of clinical research? Because today that's the number one eligibility criteria. If you're a pregnant woman, no clinical trial. So your thoughts.

Heidi Floyd, Patient advocate (18:59)
Of course.

that I think it's up to each individual woman and her oncologist. think if she, again, it's a relationship. If you trust the person who's leading you through that, I mean, if you're pregnant, most of us are concerned about the baby inside of us. I would think I could be very wrong, but most pregnant people are concerned about that. And so if you have assurances that your baby will be safe, yeah, we'll try it, especially knowing.

Maya Zlatanova, CEO TrialHub (19:28)
course.

Heidi Floyd, Patient advocate (19:40)
you know, that it's going to be helping thousands of other pregnant women in the future. I think, and when you get to point of clinical trials, they've already tested it in mouse models and things like that. So it's already, it's not like you're going cold from, have an idea, let's put it in a human. That's not how clinical trials work. They have to go through an elaborate process. So my personal opinion is that it's up to you personally and your doctor. You have to be able to trust your doctor.

Maya Zlatanova, CEO TrialHub (19:51)
Yeah.

It should be a choice basically. Yeah.

Heidi Floyd, Patient advocate (20:06)
Yeah, yeah. you know, if you and if you're if you're overly concerned, what are the ramifications if you wait until the baby is born, if you engage in a clinical trial, will it help you? Will it help the baby? Will it hurt you? Will it hurt the baby and what happens after? Yeah.

Maya Zlatanova, CEO TrialHub (20:19)
What happens after that? Yeah, interesting. Haley, thank you so much for sharing your story. I know we can spend an entire day even chatting, but I know we have to go. So thank you once again for the story and all the work you're doing. It's really meaningful.

Heidi Floyd, Patient advocate (20:30)
Yes.

My pleasure. Thank you so much. so glad we connected.