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ANGEL Advocates

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LaToya Hinton is the CEO and Research Director of NEXT Innovative Clinical Research

Author: Katherine Cornish

LaToya Hinton is the CEO and Research Director of NEXT Innovative Clinical Research, a community-focused research site with locations in the south side of Chicago, IL and Houston, TX. LaToya compares her efforts running a clinical research site to being a conductor of a great symphony: “you have to be able to identify and hear every single part and know all of the movements and who needs to come in and when,” she says. As a site owner, she is responsible for identifying locations, onboarding physicians, training staff, and supporting all stages of the studies that take place at her sites. In 2023 LaToya was awarded one of ten Chicago-based small business grants through an organization headed by Beyoncé. “If Beyonce thinks I’m amazing, then I’m amazing,” she says.   

LaToya ensures that anyone coming into her sites with an interest in clinical trial participation has a solid understanding of clinical research before they talk about study eligibility. Doing this in a group setting with peers helps make potential participants feel comfortable and included – that they’re part of the community of this site and this trial. “If I have a large number of people interested in a study, lets say 20 women, I’ll schedule them all to come in and we’ll do a presentation where we go over what clinical trials are, why it’s important to participate, and after that we’ll start to review the actual study details,” Latoya shares. “What I’ve found is that doing it in a group setting, the women feel that they’re not alone and it makes them more comfortable knowing that there are other women out there with their same condition. Learning together and to going through the process together helps them find a common ground.” LaToya makes sure that she and her staff engage their patients from a supportive community perspective too. “You have to break it down in a way that patients understand and feel comfortable with. If I’m a nurse or a doctor and I’m in my white coat talking down to someone, why would they want to come back… I’m going to talk to patients the same way I talk to my daughter, the same way I talked to my mom. We’re having a conversation.” 

“When you come to participate in a clinical trial, you have our undivided attention. You’re not in here with 30 other patients in a waiting room. We allow two or three hours to devote to these visits just so people don’t feel rushed…”

Community-focused research sites like LaToya’s are rare in Chicago, especially in underserved areas like the Bronzeville neighborhood where her site is located. She acknowledges the powerhouse research institutions located in Chicago such as University of Chicago, Northwestern University, Loyola University Chicago, and University of Illinois Chicago. There are a lot of continually ongoing research projects at these institutions, but they’re not always accessible to the people that could benefit most. Having supported breast cancer research at University of Chicago previously, she highlights some of the challenges faced at these larger institutions: “It’s so hard to get there – and it’s not only a hassle to get to the hospital, but once you get to the buildings, the campus is so large. It’s like, ‘OK, I have to go here to meet the coordinator, then the coordinator takes me somewhere to see the doctor, and then I have to go over here for the pharmacy, over there for radiology, down another way for the labs.’” With sites like NEXT Innovative Clinical Research, everything is conducted in the same office and any specialty procedures are right down the same street. By focusing efforts more on each individual patient’s experience and building that peer-to-peer community, LaToya finds that patients are more comfortable participating in trials at her site. “When you come to participate in a clinical trial, you have our undivided attention. You’re not in here with 30 other patients in a waiting room. We allow two or three hours to devote to these visits just so people don’t feel rushed,” she highlights. 

Even with such a well-engaged connection to patient populations in the community, LaToya shares that it can be challenging to get brought on as a study site. She highlights some of her experiences in searching for dermatology studies to support. “With dermatology, less than 10% of the dermatologists in the states are African American. But I have two of them on board and they’re eager to participate in trials! But so many dermatology trials don’t bring in patients with higher melanin skin colors – it’s like they (Sponsors) don’t do the work with those patients because they’re not sure how it’s going to go. But that’s the purpose of the trial,” she shares. Highlighting the underlying drive and necessity of diversifying trial participation, she continues to say “I want to know how many Black doctors they’re (Sponsors) working with that are able to bring the Black population into these studies so that in the future, we can say that for this Black patient with acne, this drug is going to work for them. Or for that Black patient with eczema, that treatment is going to work.” 

“What I tell people all of the time is that even if the trial they’re participating in doesn’t directly end up helping them, it may be something that they’re feeding into that will help their kids or grandkids. Always think of the future. If it’s something like fibroids or endometriosis that a patient is dealing with, often her daughter might deal with the same thing. So her efforts in participating in a trial right now can help her future generations since so many conditions are likely to be passed down. You’ve really got to pay it forward.” 

For more information on LaToya Hinton’s clinical research sites, click here! 

To take a walkthrough of the NEXT Innovative Clinical Research Chicago site, click here! 

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Michelle Anderson-Benjamin is a Tigerlily ANGEL and fierce advocate in the breast cancer world.

Author: Katherine Cornish

Michelle Anderson-Benjamin is a Tigerlily Foundation ANGEL and fierce advocate in the breast cancer world. She’s currently involved in her first clinical trial. Having triple negative breast cancer (TNBC) and being PD-L1 negative, Michelle knows that she’s got limited options for treatment, especially when it comes to immunotherapies. By participating in a clinical trial examining different chemotherapies, she’s able to expand the options that are available for her specific diagnosis – and contribute to the development process for these treatments that allows them to be made available to other people just like her in the future. “I know I can’t cure cancer,” she says, “but I know I can be part of the group working towards it. And collectively, the more people that participate in these trials, the better outcomes we have for women that look like me.” Michelle acknowledges the marathon that is the process of bringing new treatments to market as well. “We want to solve the problem, but it’s a process. It takes work, and sometimes the work doesn’t end with you. But you’ve moved the marker closer to the next person, and you might be surprised who picks up the baton.”

Michelle first heard about clinical trials while working in healthcare prior to being a cancer survivor herself. She notes that she did discuss trials with her doctor when she was initially diagnosed with stage 1 breast cancer but didn’t have any good options that were currently available. Once her staging jumped to stage 4, they discussed some new trials as her change in diagnosis opened up other opportunities. “Fortunately, my team has been very proactive with making sure that I fully understood the (trial participation) process,” Michelle shares. “I came to the table eager and determined even from the very beginning. We thoroughly discussed what the trial would be like, the steps needed, and what needed to be done prior to me even being randomized. They made an emphasis that it’s not that you’re getting a sugar pill,” she highlights, “it was clear that either you get the actual drug or you get standard of care treatment.” Having a proactive, supportive care team has been a driving factor in the overall positive experience she’s had. The care team was even helpful when she encountered some side effects like dry eye and dry mouth; they added a dermatologist to her care team to help prescribe mouthwash to lessen the oral side effects.

“Having ownership to speak out to them if something is too much and fully understanding that trial participation is MY decision. I appreciate that they listen”

With her care team backing her, Michelle feels like she’s still in charge of her life. “Having ownership to speak out to them if something is too much and fully understanding that trial participation is MY decision,” she shares. “I appreciate that they listen. Being metastatic, the main word is ‘Quality of Care’, right? And what does that mean? Quality of Care is not me coming to treatment every three weeks and sitting in a room. Quality of Care is me being able to be the person that I was prior to my diagnosis. A mother, a woman in society, a person with a purpose, with a life. A person that enjoyed living live and that still wants to be a part of the world.” Even while participating on a trial, Michelle feels that her schedule doesn’t need to revolve around her treatments – it’s the other way around. “My cancer needs to revolve around my life. I’m not missing special events, especially when it comes to my children,” she says.  

Michelle appreciates that her care team speaks to her like an equal, but acknowledges that this isn’t always the case. “Working with other patients in this field, I feel often times that they are spoken to as if they’re being told what they’re supposed to do and they’re not being heard,” she notes. This is something she works to change as an advocate, empowering her fellow survivors and thrivers with the education and support they need. Michelle shares her experiences on social media, speaking her experience from a place of “real life.” “For example, this past Friday, I had treatment and I had a dose reduction because of my side effects. I published about this on social media to let people know that this stuff happens. It’s not a negative, it’s a positive – if I’m able to get a dose reduction and my body is still stable and I’m still not having progression or evidence of disease, maybe other people can get this regimen moving forward where the amount of drugs can be less harmful but still manage the cancer.” Michelle shares her experiences with the intent to make them all seem less scary – having cancer, getting treatment, participating in a clinical trial, and dealing with all of the things that life throws at you. “In this world,” she says, “you have to be constantly prepared to be told things that require you to step into fear and make a decision. Be fearless, jump out of the plane – wherever you land, you land. Take that chance.” She wants others to know that “they’re capable to be whoever they choose. Fear doesn’t have to be part of their vocabulary. People are stronger than they think they are.” 

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LaTisha Weaver is a Clinical Budget and Contract Negotiator with a game plan

Author: Katherine Cornish

Looking forward in life, she’s started her own consulting business to support contract negotiation needs for clinical research with the goal to complete an ongoing nursing degree and become a clinical site owner in the near future. In her current role, she works with clinical trial sites such as hospitals and universities as a clinical trial is getting started to make sure that all parties agree on the details in the clinical trial agreements or “CTAs” that guide the trial site in their operation of the trial procedures. She also makes sure that all parties have the current protocol, the correct budget templates, and other key trial documents such as a letter of intent or a letter of indemnity.  

Like many people in their current positions, LaTisha moved in to her analyst role after life threw her a 180. As a parent, she had been laid off from her previous role and was able to get a new position with a central laboratory organization that provides lab services for clinical trials. “I was really good with Excel and numbers so I dove in,” she says. “I was able to get an understanding of what a clinical trial is after being there for a little while.” Over time, LaTisha had the opportunity to work with more and more clinical trial documents and to continue expanding her understanding of all of the processes that happen behind-the-scenes to make a clinical trial work. “The work orders for budgeting, the CTA for the scope of work… it was very intriguing,” shares LaTisha. After gaining oncology experience at Wilmot Cancer Center and Tufts Medical Center, she decided to take a big leap into building herself a foundation for a new future role as a site owner by becoming a licensed practical nurse (LPN). 

“You suffer through imposter syndrome and you have to learn to stop fighting with yourself and actually trust yourself and your instinct,”

While juggling her new responsibilities, she’s found strength and support in clinical research advocacy and through her wonderful colleagues at Black Women In Clinical Research. “You suffer through imposter syndrome and you have to learn to stop fighting with yourself and actually trust yourself and your instinct,” says LaTisha. “I don’t need the nursing degree [to become a site owner], but I fight daily to be able to sit at tables with highly distinguished professionals, people having their PhDs and physicians. Whether it’s traditional or not traditional, I sit at the table with them.” 

When asked about the drive to switch roles, LaTisha talks about wanting to make more of an impact and her passion for community engagement and education. “I want to first educate you on what’s going on. I want you to further understand the [condition] that you have and that you have options, options that other people haven’t already told you about… how a clinical trial may work for you,” she shares. She hones in on the importance of providing education to people in the communities – education about health conditions and about treatment options, not just about current trial opportunities. Empowering the community to feel confident in their understanding of their health condition and their options is important. Empowering someone to make informed decisions about their healthcare is what LaTisha aims for, and hopefully some of those decisions involve clinical trials. “People might have a feeling of not being heard,” she says, “I want to hear everything…. I want them to feel comfortable. I want them to know that we are here and that every voice will be heard.” Highlighting the need to get information into the community, “at the end of the day, it’s all about changing lives,” she says, “there are patients that can benefit from these studies.” 

LaTisha brings her clinical trial knowledge and healthcare understanding with her and shares it wherever she goes. As an active advocate engaged in her church community, she talks about supporting her fellow parishioners through their healthcare needs: “being a member in the church who has gone to doctor visits with people or being that church sister that they call when they want to talk because a physician didn’t have proper bedside manner or because they’re not understanding what their drug or treatment is,” she shares. Advocating for clinical research is a balance of taking in the concerns of the community, empowering others through education, and amplifying this process wherever possible. Transitioning into a site owner role will be an effective way to continue bringing this brand of active, engaged support into the community on an even greater level. 

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Allanda Christenson wants to share just how important the power of advocacy – especially self-advocacy – can be.

Author: Katherine Cornish

Allanda starts off by sharing about her initial breast cancer experience. “I was diagnosed in August of 2021 with hormone-positive, HER2-negative breast cancer. I did all of the standard treatments but I was not informed about any clinical trials,” she says. “It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…. I’m so grateful that I am a part of this community and that I got connected with these organizations to get this knowledge because I wouldn’t have otherwise.” While she had an excellent care team at Fred Hutchinson Cancer Center, she didn’t get any input when she had asked about clinical trial participation opportunities. Not one to wait for someone else to decide whether or not to share information, Allanda took charge. “I actually went searching for trials on my own,” she shares, “and I continue to.” Her search led her to the Eileen McGeever Breast Cancer Survivorship Program at University of Southern California’s Norris Comprehensive Cancer Center.  

“It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…”

While we often think about clinical trials as a way to compare whether a potential new treatment is as good or better than other current treatments, there are a lot of other types of clinical trials available. The trial that Allanda is participating in is an observational study in which participants contribute to breast cancer research by sharing information about their experience as a cancer survivor and by providing occasional blood samples at a nearby laboratory location. The participant data that is gathered will help researchers understand the impact of stress, behavior, social factors, and diet on recurrence, and tracking and treating minimal residual disease. Participants can be located all over the U.S. and receive all of their materials by mail, which makes it an easy process. This study remains ongoing with a goal to enroll 1,000 women who have completed breast cancer treatment; for more information on participation, click here. 

Allanda highlights the importance of a strong and approachable study team, even in an observational trial like this one. “The study coordinators get you all set up with the paperwork…. The information was pretty clear about how you qualify, what you’re going to be doing, your rights, if they find something, everything you need to know. And if you have questions, there’s somebody that you can reach out to,” Allanda notes. As she shares, the study team is there to be a helpful resource throughout the whole study. Participants are encouraged to ask questions at any point, not just at the beginning when the study is being discussed for the first time. “The study coordinators, they’re there for you every step of the way for any questions or concerns. There’s a lot of educational material that you can talk about with the coordinator so you’ll understand your part.”  

When asked about what kind of insights she would share with other advocates, Allanda encourages others to get engaged and be an active participant in their healthcare decisions and to consider clinical trial participation. “We cannot make progress in the breast cancer realm or any other disease without research, without science, without people willing to say, ‘you know what? I’m in this fight.’” As a strong proponent for making sure that future generations have the benefits of more precise treatment options, she further remarks, “I just want to encourage everyone out there to get involved for the sake of everyone coming after us…. Let’s move the needle, and we can’t do that without participating in science and research.” 

Engagement and education to drive understanding of all of one’s healthcare options shouldn’t just be propelled on the patient side though; it should come from all areas of the healthcare team and healthcare system. Allanda highlights the importance of an established support network within the care team: “A patient should be assigned a patient navigator or a social worker, someone that the patient can build a relationship with. Someone that can help guide patients and their families from A to Z.” Putting the ‘care’ in the healthcare team is important, she observes. “I did most of my journey myself. My family works, my mom still works. I don’t have children or a spouse,” shares Allanda. Going through major health conditions and treatment decisions is always easier with a strong support network that can help act as a sounding board while thinking through the options and to provide any information that might be needed to fill in educational gaps. 

“I think more outreach, more education,” is the key to driving awareness, Allanda explains, “we need everybody up in this thing. Like what Tigerlily is doing, but even more organizations. Different organizations can let different people see themselves [in clinical research].” Allanda continues to talk about getting the message out and hopes to get digital and audio personalities on board: “I would love to see Black media, Black podcasters focus on important things like clinical trials and prostate health and voting,” she starts. “It’s going to take a lot of different kinds of approaches to start moving the needle. Get the message out there.” 

Allanda calls out the statistics around breast cancer as an impetus for change. “Black women are more likely to have aggressive and advanced stage breast cancer, and black women have the highest mortality rate of any U.S. racial or ethnic group. We have to improve these numbers, and the only way we can do that is to increase clinical trial participation and advocate for research funding.” She encourages everyone to put aside their perceptions and fears and to get involved in advocacy. “I was thinking well, I don’t have any special skills or training and my public speaking isn’t perfect. You know, those seeds of doubt that can be there? But just come as you are. Share your story. You can be your own advocate.”  

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Shakisha Davis

Shakisha Davis is an active Tigerlily Foundation ANGEL Advocate that wants to highlight her experiences with the power of advocacy – especially when it comes to advocating for one’s own health. As a clinical trial participant in multiple studies, she’s had a variety of different experiences. Shakisha credits Tigerlily’s clinical trial education during the ANGEL Advocate training with making her feel confident about her understanding of clinical trials and her comfort level around trial participation.

Author: Katherine Cornish

The first trial Shakisha participated in started off smoothly – she highlights her study healthcare team members as being knowledgeable and helpful in getting her set up as a study participant. “I had a really good nurse navigator, I had a really good team,” she notes. The trial option was initially presented to her by her doctor as a different approach to radiation treatment, one that was more precise and more targeted, which sounded like a great opportunity that wouldn’t require much burden beyond her standard treatment plan. “It wasn’t going to be anything extra,” she says, “I didn’t have to do much, it was just about the way the radiation was administered, that was the only difference. I thought, ‘yeah, I could do this.’” 

“It was going fine, it was all good. And then it wasn’t.”

Shakisha Davis, Tigerlily Foundation ANGEL Advocate

With only three of the 36 radiation treatments in the study remaining, Shakisha began experiencing some discomfort. Throughout a day, it started off as an itching sensation, but by the end, grew into a seriously uncomfortable situation. She was losing her skin in the areas that were irradiated, right around the band of her bra, all of the way around the front and back. “My skin came off. It was burning. I could barely put on a shirt,” she says. She relayed her concerns about these serious side effects to her study team, but they continued to ask her to complete her series of treatments. “It was one of the only times I felt like a number,” she relayed, “they seemed more focused on getting me through the treatments than how I was actually doing… it was like they forgot about me as the patient.” With only three treatments remaining and the study team being so persistent, she thought “maybe I can do it, I can just finish the study, it’s only three more treatments.” But after seeing the burning and skin loss worsen after another treatment, Shakisha needed to advocate for herself and her own well-being. “I stopped just before the end. That was the best decision I could have made for myself, that was me advocating for myself.” As a trial participant, it’s important to remember that participation is entirely voluntary. And as a patient, there’s nobody that knows your experiences better than yourself, so it’s up to you – as a patient and as a participant – to make the choices that are the best for you.

After learning more about clinical trials through Tigerlily, Shakisha is an active supporter of clinical trial participation even in spite of her initial experience. “I know I made the right decision, but now I fully grasp how important it is to finish a trial. I do wish I could have finished those last two radiation treatments because my information could have been used for a greater cause,” she shares. While Shakisha still prioritizes self-advocacy, she has a better understanding of the needs of clinical research. Highlighting how learning more has helped her to move forward, she says “now I’ve begun to understand what the study team was doing, they knew that my information could help a lot of people. I think they just lost sight of things in the moment, but I understand why they wanted me to still finish the treatments.” “If I were offered a trial today, I would definitely consider it,” she says.

“I’m big on helping the next person. If it can help my family, my friends, or even people I don’t know, I’m all for it,” Shakisha says. She understands how important it is to participate in clinical research in order to design better treatments, understand medical conditions more deeply, and to help build a better future of healthcare for coming generations. She considers trial participation as “doing her part” for the future. Sharing her story “gives me purpose, it gives me a purpose to that pain, even those unpleasant parts,” she says. Shakisha encourages others to learn more and think about trial participation too.

“Do your research, learn about it. Clinical trials are not just a way to do tests on someone, it’s how they learn more about medicine. Know that it serves a greater purpose and that you’re a part of that impact, you helped bring forth new discoveries.”

Takeaways from SABCS Session: Diversity in Clinical Trials with ANGEL Advocate Erin Perkins

Read more to learn about some insights, reflections, and opinions of patient advocates who attended SABCS. We’re sharing a little about each Tigerlily ANGEL Advocate, their story, and why they decided to participate in SABCS 2021. 

Erin Perkins was diagnosed January 28th, 2021, at age 34 with invasive ductal carcinoma Stage 2B while nursing her son. She was also triple-negative.  Triple Negative Breast Cancer (TNBC) is one of the most aggressive types of breast cancer, and is diagnosed often in younger Black women.  In spite of the diagnosis and the treatment she faced, while undergoing sixteen chemotherapy infusions and a bilateral mastectomy, Erin knew that she wanted to learn more about breast cancer and be a voice for other patients.

Advocacy is in Erin’s heart—through and through. And it has been, even prior to her breast cancer diagnosis. Erin’s advocacy is woven deep into the fiber of her being and she leverages her power and her privilege through her voice. Erin attended multiple sessions on the first day of SABCS, one of which was Trust in Science and Healthcare: Diversity In Clinical Trials. Here are some thoughts and notes that Erin shared with us from her first day at SABCS.

Tigerlily Foundation: What were your main takeaways from this session? 

Erin: Minority populations are sometimes not informed of clinical trials. Patients are not necessarily unwilling, but unable to participate. However, this time impacts our ability to engage in trials to contribute to treatments that work better for our bodies, and time is a disparity! We need to hold researchers accountable to change, and accountability is needed so that money is not prioritized over patient’s needs.

Tigerlily Foundation: What new information did you learn that you want to learn more about? 

Erin: I am very interested in learning more about the Diverse Clinical Trial Act by the American Cancer Society.

  

Tigerlily Foundation: What part of the continuum of care was addressed?

Erin: Practitioners must invest in cancer care programs that adequately receive the patient. The keyword is “receiving”. Patient perspective was important with a cross-sector partnership. Addressing research laziness, language gaps, and literacy issues i are important. One of the speakers brought up a common issue for patients of color contributing to worse outcomes. That is the belief, “I don’t want to be screened because I don’t have the resources to treat it if I have it [breast cancer].” There is a need here for comprehensive resources. 

Tigerlily Foundation: Were disparities discussed or addressed? How so?  

Erin: YES! This session was 100% about the disparities in healthcare and ideas for how to work towards filling in these gaps.  

  

Tigerlily Foundation: Was your perspective influenced in any way after the session?  If so, how?  

Erin: I just think of how the panelist brought up a reason some people in underserved populations (largely due to systemic racism) almost have no choice at better outcomes; thinking of how the panelist spoke about a person who would not get screened because they could not afford (because of a myriad of factors) to get it treated anyway, so they might as well not even know. What a motivator for us all to listen and learn and work together to create pathways for all to receive equal access to the care we all deserve.  

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This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.

The session was moderated by Tigerlily Foundation’s President, Maimah Karmo; and Dr. Charles Perou, May Goldman Shaw Distinguished Professor of Molecular Oncology Research, Professor of Genetics & Pathology at the Lineberger Comprehensive Cancer Center, University of North Carolina.

Speakers for this SABCS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.