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Clinical trials are the engine behind every major advancement in cancer treatment. Not only do they pave the way for breakthrough treatments, but they also shape the standard of care for the future. New therapies must go through rigorous clinical testing for safety and effectiveness before receiving federal approval and becoming publicly available. Without the data gathered by clinical research, progress in treating, managing and even curing certain cancers would stall.
That said, oncology clinical trials can suffer from information gaps because they historically have not represented the true demographics of the U.S. population. Racial and ethnic minority groups, women, older adults, and people from lower-income backgrounds are consistently underrepresented in cancer research, even though these groups account for a significant portion of the cancer patient population.
That’s why it’s crucial to the scientists and clinicians at Fox Chase Cancer Center, which has been at the forefront of cancer research for close to a century, that they strive for greater diversity in trial enrollment and provide better access for underrepresented patient groups. Case in point: a grant-funded study directed by Susan Rux, PhD, DNP, RN, FACHE, OCN, a leader in oncology research and nursing education for 30 years, along with a team of researchers at the Fox Chase Office of Clinical Research (OCR).
Rux, who is Associate Vice President, Professional Nursing Practice & Research at Fox Chase, serves as Principal Investigator for a grant from the Department of Defense to research methods of improving access to kidney cancer clinical trials for underrepresented patient populations. She is joined by four outstanding clinical and nurse researchers: Rutika Kokate, PhD, MS; Kimberly Costello, RN, BSN, OCN, CCRC; Courtney Lambert, RN, BSN, OCN, CCRC; and Kristin Virag, RN, MSN, OCN.
Costello, Lambert and Virag have a combined 21 years of oncology nursing experience and 17 years of kidney cancer research experience; while Kokate has extensive experience in oncology research via her educational and professional training.
“Equal access to trials is essential in determining the effectiveness of therapy in a real-world patient population,” Rux says. “By finding ways to make it easier for them to participate, we can ultimately enhance our ability to deliver the best possible treatment and care for these underserved patients.”
Joining clinical trials often provides access to the most advanced and promising treatments, but underrepresented groups continue to face obstacles to participation and thus miss out on the potential benefits. This topic is of particular importance to the Department of Defense, which funded this $564,000 Nurse Initiated Research Award, because nearly one-third of active-duty service personnel are members of a racial or ethnic minority group that could be affected by such disparities.
Consider that most patients who participate in oncology clinical trials are non-Hispanic white, male, and younger than 65 years old. Such limited trial diversity typically means:
Many patients are less likely to enroll in clinical trials because of logistical hurdles and concerns about the associated costs of participation. One study showed that patients from lower-income households and those who traveled farther for their cancer care experienced greater financial challenges when enrolled in a clinical trial, including out-of-pocket non-medical costs such as food, travel, lodging and fuel.
In a highly diverse city like Philadelphia, other common deterrents to trial participation include language and cultural barriers or general distrust of medical research. Finally, many people simply lack awareness of clinical trial availability or what that entails. This grant has challenged the Fox Chase team to effectively address these issues for the wide range of patients they serve.
“Some people have heard generational stories about clinical trials and what that has been like over the last 100 years – they just don't know all the ins and outs of what a clinical trial is and what it means to be a participant today,” Costello says. “That’s why one of our biggest priorities was how we can better educate patients.”
Costello says the team started by interviewing a diverse group of kidney cancer patients at Fox Chase to collect their thoughts on what content should be included in the educational sessions. When some African American patients shared common misconceptions surrounding clinical trial participation, it sparked the team to address what safeguards have been put in place to protect trial participants, regardless of their race or ethnicity.
The research team is also exploring the financial barriers that can prevent patients from coming to the center as often as is required. Sponsorships, stipends, and expense compensation may be available to help minimize increased costs for travel, meals, and time away from work while participating in clinical trials. Additionally, because many cancer patients have little awareness or understanding of trials, the team is encouraging physicians to regularly discuss them as a treatment option.
The grant study will continue until the end of August 2026, but the team’s educational efforts are well under way – from in-person Zoom sessions to a lively animated video produced in English, Spanish and Russian for Fox Chase’s multi-lingual patient population. Patients who view the video are asked to complete demographic surveys, share their feedback, and express any interest in joining a future clinical trial.
The research team also interfaces with the Fox Chase Patient Education Council and Family Advisory Council to spread as much awareness as possible. Successful project implementation will have a positive effect on research into and treatment of other cancers at Fox Chase and Temple Health.
“This is not just a problem at Fox Chase or in Philadelphia, or even just a kidney cancer problem,” Lambert says. “It's a national problem that we’re not enrolling a diverse group of patients into clinical trials. Although this particular grant was specifically for kidney cancer, we expect to apply our findings to other disease sites and benefit many different patients.”
Fox Chase prides itself on its multidisciplinary approach, and this grant was no different. The idea to apply for the grant originated within the Fox Chase medical team, which got the nursing research team involved. Rux says there is a social service and pharmacy aspect to this study as well – they have collaborated with many others in social work, budgeting, and grants.
“The research happens to be carried out by nursing, but it takes a village, and there are many different disciplines that are stakeholders in the work we’re doing,” Rux says. “That is what sets us apart from many other organizations.”
Anna Liza Rodriguez, MSN, MHA, RN, OCN, NEA-BC, Chief Nursing Officer and Vice President of Nursing and Patient Services at Fox Chase, adds: “Fox Chase and Temple Health are well-known for their nursing excellence, but this grant also underscores the fact that our nurses also lead the way when it comes to research into new ways of improving and delivering care.”
That’s the benefit of Fox Chase’s elite standing as an NCI-designated Cancer Center. Our research is led by extraordinarily talented scientists who work in an ideal environment for fundamentally important discoveries. With additional support from our partnership with Temple University Health System’s oncology research, treatment and prevention programs, Fox Chase makes a world of difference in Northeast Philadelphia and all other communities that we serve.
Virag concludes: “I think we truly have touched so many different departments at Fox Chase, and everybody has been willing to support us and provide any type of information we need to move forward. It's been a joy to work with everybody on this project.”
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