How Community Research Sites Are Gaining Power to Improve Patient Access to Oncology Trials

Community-based sites’ untapped patient populations, strong community bonds, and personal patient-physician relationships are the keys to unlocking the potential of oncology research.

Katy Fallon & Laurel Uballez
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With the universal race to end cancer being a constant mission within the world of pharmaceuticals, and a personal dream for patients and families across the globe, the persistent barriers holding back oncology research are frustrating, to say the least. These barriers end up affecting everyone. They lead to delayed progress for cancer research, higher costs for treatments, and continued health disparities for patient populations underrepresented in research.

  1. Stringent protocols and criteria.

The inherent complexities and variations across cancer types result in researchers being highly specific in their efforts to seek out effective cancer treatments. Oftentimes, that means an extraordinarily limiting exclusion criteria that prevents many patients in need from participating. Recently, as recommended by the American Society of Clinical Oncology (ASCO) and Friends of Cancer Research, researchers examined the limiting components of a lung cancer trial and the results of changing that criteria. By including patients with specific symptoms that had previously been excluded, the study team saw the number of eligible patients nearly double, indicating a solution for expanding the reach of oncology trials. After these results, the researchers and policymakers involved made new recommended guidelines to expand eligibility in lung cancer research. This signifies a step in the right direction for lung cancer trials but limitations continue to restrict patient participation in other areas of oncology research.  

  1. Centralization of trials at major academic clinical research sites.

Due to 70% of trials being conducted by 5% of research centers, patients often have to travel to one of the major academic clinical research sites in order to participate in trials, which is especially limiting to those with less financial means, inflexible job schedules, childcare restrictions, limited transportation, and other barriers. The narrow scope of sites receiving access to trials results in a small percentage of cancer patients even receiving the option for participation. A whopping 74% of cancer patients receive care in their community, yet only 8% enroll in trials; this stark imbalance is the result of so few trials being available in patient’s local communities. With such a large discrepancy of cancer patients unreached by clinical trials, oncology research continues to be constrained by under-enrollments and slow startups  

  1. Race and Ethnicity

The unfortunate truth of clinical trials is that they are largely available to white patient populations, resulting in massive discrepancies within cancer research that prevent trials from being universally impactful. With such low rates of participation already amongst cancer patients as a consequence of limited access, the racial disparities within trials are staggering. Across all types of cancer, Black Americans make up 19% of all cases and 22% of deaths, a disproportionate amount considering that the U.S. population is roughly 13% Black. Despite the higher instances of cancer in Black Americans, oncology research reports that just 5% of participants are Black. An even greater gap: the U.S. population is 18% Hispanic yet only 6% of cancer trial participants identified as Hispanic. The numbers speak for themselves and lack of representation in clinical trials suggests a huge issue in how people of color in the U.S. are accessing care. What’s more, when these drugs hit the market, the side effects and efficiency reported in the research is only applicable to those the treatment was tested on, inhibiting people of color in the U.S. from accessing a truly safe and effective cancer treatment. 

A Solution That Lies in The Community

To advance research, this cycle must change and these barriers must be reduced. Community oncologist researchers offer a powerful opportunity to do this.

By bringing trials to the community, the reach of new treatments is expanded to underrepresented populations, disrupting the trends of under enrollment and insufficient diversity. Community sites have existing relationships with their patient population, addressing the low enrollment barriers that slow down oncology research. An oncologist from one of Inato’s community based sites, Dr. Jaswinder Singh, stated that these trusting, personal relationships that community oncologists have are key to the success we see in community-based sites. “When you go to these communities, you’re not just touching one family,” he said. “You’re touching twenty families because each of them is connected.” He went on to explain that, based on the implication of cancer diagnoses, the bond between oncologists and their patients is especially strong, ““[The patient] has put their life in your hands and that’s a pretty big deal. They’re trusting you.”

With the ability to connect deeply with patients and hit enrollment rates, community sites can broaden who is receiving the medical innovation of a cancer trial. Many sites at Inato’s network are based in more diverse areas than larger research centers and have critical roles in the community through outreach and personalized care. This allows them to not only recruit patients that are historically left out of cancer trials, but target the demographics that are most affected by a disease. Breast cancer, for example, is the leading cause of cancer death for Black women, yet Black patients are continuously underrepresented in cancer trials. One breast cancer trial at Inato is fighting to change that, with 86% of the sites selected so far bringing proven diverse populations to the study. Of those diverse sites, 83% have a patient population that is more representative of Black patients than the nationwide population. 

These sites are key to unlocking the potential of oncology research. Even the stringent protocols limiting patient access may be hurdled thanks to the quality feedback community researchers can offer based on their intimate understandings of the patients’ needs. Through incorporating their strong community bonds, personal patient-physician relationships, and access to diverse patients, community-based sites have the capacity to change the trajectory of cancer research. At Inato, we envision a future where all patients have the opportunity to participate in trials, and receiving unimaginable news about cancer feels just a little more manageable, hopeful, and easier to create a plan for. 

And that’s why we created our platform designed to empower community sites.

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