Trials to Triumph: How Feonix and Stand Up To Cancer are Improving Diverse Representation in Cancer Research


The idea that someone could lose out on cancer treatment that could save their life or contribute knowledge to save the lives of others like them is unimaginable. Worse still would be their missing out due to social, economic, or racial factors. Yet, in the country of the unalienable right to life, liberty, and the pursuit of happiness, this is precisely what is happening. Structural racism and economic exclusion in healthcare erode trust amongst underserved communities, while harming research and costing society trillions of dollars.

In this article, we’ll explore how Feonix and Stand Up To Cancer (SU2C) are working alongside the University of Texas to improve cancer clinical trial access for people living in poverty, and the myriad benefits of their quest to level the field.

The Problem with a Lack of Representation in Cancer Clinical Trials

A lack of representation of races and ethnic groups in clinical trials may sound like a niche problem, but it’s a mirror that reflects a much broader issue: inequitable access to healthcare in the United States. This is exactly what Feonix – Mobility Rising aims to alleviate through mobility and community-based transport solutions. 

So, what do the numbers say? Several reviews of cancer clinical trials have highlighted the underrepresentation of Black and Hispanic patients, with Black participants accounting for only 22% and Hispanics 44% of expected numbers based on cancer diagnoses, in sharp contrast to Whites at 98% and Asians at 438%. 

These findings, detailed in a JAMA Oncology study, are echoed across other research, which found the representation of these minorities to be not only low but declining, with this discrepancy deepened by the pandemic, as reported in another study. These patterns indicate a widening gap of representation in research and reflect differential access to lifesaving treatments for underprivileged groups.

The reasons for this are complex. Structural racism within the healthcare system and a litany of controversial, unethical research involving marginalized people and ethnic minorities have served to sow a prolonged period of mistrust in research amongst the black community in the US.

BIPOC patients are therefore more likely to express concerns about exploitation, dishonesty about risks, and researcher motivations. While this may account for some of the lower rates of enrollment in trials, it only tells part of the story.

If an individual from an under-represented patient population does want to take part in a clinical trial, there are multiple other barriers which need to be overcome. Clinical trials are typically held at academic centers, requiring multiple scheduled and unscheduled visits. These demands mean that barriers that disproportionately affect BIPOC patients and people who live in rural areas, such as distance to treatment, lack of transportation, and low income often exclude them from enrolment, marginalizing them, leading to further underrepresentation, and sowing further mistrust in the medical establishment.

“We had the opportunity to support McKesson last year on a cancer care pilot that provided transportation to treatment, hot food from Visiting Nurses Association’s Meals on Wheels program and overall case management from the Community Council of Greater Dallas, supporting first-time, cancer patients in low income households, who tend to be populations that are greater affected by transportation barriers. The impact was significant as many patients have gone into remission simply because they’ve been able to get to their appointments safely and compassionately” shares Jonathan Braddick, Feonix’s North Texas Community Development Manager.

Why Diverse Representation in Clinical Trials Matters

The answer to this question is multi-layered. Diversity in cancer clinical trials benefits patients, innovation, research, and society as a whole.

Representation Benefits Individuals

On an individual level, a patient taking part in a cancer trial stands to gain access to a treatment that isn’t normally available and in some cases may be more effective or safer than other options, according to the American Cancer Association. Involvement in a trial also increases the number of treatment options available and offers patients the opportunity to have agency over their treatment or to help other people through their participation. Some trials will even cover the costs of medical treatment.

Representation Benefits Research

For research bodies, diversity in trials is just as important. A lack of representation compromises the generalizability of findings, meaning they cannot draw firm conclusions from their work. This has multiple downstream consequences for patients and guideline-making bodies, precluding access to effective medical intervention. 

When BIPOC groups are excluded, researchers miss out on understanding their distinct disease presentations and the underlying health factors that affect how they respond to an investigational drug.  The knock-on effect of this lack of research means that guideline-making bodies cannot make specific recommendations for certain populations because adequate evidence does not exist. 

According to a Report to Congress in 2021, the US Preventive Services Task Force (USPSTF) was unable to provide recommendations for colorectal cancer screening in black adults due to limited evidence, even though black adults have the highest rates of incidence and mortality from colorectal cancer. This lack of research compounded an already existing disparity involving an already underserved population.

Representation Boosts Innovation

Including BIPOC patients in research can even boost outcomes and innovation. For example,
PCSK9, a special protein linked to cholesterol levels was discovered in a study that included people of different races and was found to have an important role in creating new drugs to treat cholesterol and protect against heart disease. Its discovery was only made when researchers noticed that some Black individuals in the study had rare genetic traits that kept their cholesterol levels naturally low. If the study hadn’t included a diverse group of people, this important finding could have been missed.

Representation Benefits Society

By ensuring that clinical studies are representative, researchers can play a pivotal role in addressing wider health inequities. Underrepresentation in research has a social cost and marginalized communities pay it, through a decreased quality of life, a shorter life expectancy and a shorter working life. But society as a whole pays an economic toll, too. 

It has been estimated that disparities in chronic diseases such as diabetes and heart disease will cost society more than $10 trillion by 2050 through morbidity, mortality, and loss of work.  Improved inclusivity in clinical trials can enhance the generalizability of scientific findings, leading to new discoveries, increased innovation, improved access, and greater trust in research outcomes. By ensuring that studies are representative, research can play a greater role in minimizing this cost.

Now that we better understand the vital role of diversity in clinical trials, let’s explore how Feonix and SU2C are on a mission to improve representation, by linking cancer patients to clinical trials through transport.

How Feonix and SU2C are Standing up to Address Inequality 

In the heart of communities where transportation is a scarce lifeline, Feonix – Mobility Rising, in collaboration with SU2C and researchers at the University of Texas Southwestern Medical Center, is weaving a new narrative. Imagine living in a place where the route to treatment is cut off by miles, limited access to cars, or public transport that rarely comes. For many, this is a harsh reality.

Transport is a major social determinant of health that affects access to healthcare and clinical trials. Feonix and its partners are on a mission to remove the invisible transportation barrier that prevents underserved communities from participating in cancer treatment clinical trials.

In a 2022 directive on improving diversity in research, the FDA recommended that sponsors consider measures such as “partnering with community-based organizations to provide support to study or trial participants” to improve the representation of BIPOC participants.

This two-year funding program aims to ensure that no one misses their chance at having a fighting chance. It identifies individuals for whom a car ride is a distant goal—whether due to financial hardship, health limitations, or unreliable public transport. These are the unseen struggles that Feonix and SU2C are bringing to light, ensuring that the path to clinical trials is not a road less traveled, but a journey made accessible for all.

The scheme is simple yet profound: assess the need and provide the means. Through referrals from researchers at the University of Texas, Feonix will identify people with transportation needs and provide rides through an established transport ecosystem. Some will receive subsidized or private pay rides, a gentle nudge toward recovery. For those in low income households, the rides will be free.

Looking Ahead to Make a Lasting Impact

Feonix has a long track record of successful projects across the United States, deploying transportation to address health disparities and advance health equity. To date, Feonix has arranged more than 73,000 trips across 10 states and 205 communities, and this experience will be key to building lasting change for underserved communities and individuals.  

An important part of this plan involves quantifying success through the number of individuals who have newfound access to cancer drug clinical trials through transportation.  At this point, a major worry is that the program will be a victim of its own success: though many people will benefit from improved access to clinical trials, the funding is unlikely to cover every person with a transport need.

So, to move beyond success, Feonix will assess the gaps and needs that become apparent as the program continues, utilizing data to create a case for additional funding if needed. Specifically, Feonix will track the percentage of individuals who require transportation but cannot afford it and compare it against the number of individuals we cannot enroll due to insufficient funds.

From Trials to Triumph

Feonix and SU2C’s partnership marks a stride toward equity in cancer research. We hope this practical step is a leap forward for inclusivity, equity, and insight. As Feonix takes flight, it carries with it the potential for a better tomorrow, where every journey to a clinical trial is a step toward triumph over inequality.

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