By Michelle Churchman, PhD
One of the most significant issues currently facing the medical industry is inequitable access to health care. As the Centers for Disease Control and Prevention (CDC) has explained:
Health equity is achieved when every person has the opportunity to “attain his or her full health potential” and no one is “disadvantaged from achieving this potential because of social position or other socially determined circumstances.” Health inequities are reflected in differences in length of life; quality of life; rates of disease, disability, and death; severity of disease; and access to treatment.
This problem can be seen in the underrepresentation of certain patient populations in cancer research, which in turn leads to unequal access to effective cancer treatments. In this article, we examine why it’s so important for all populations to be represented in cancer research, how disparities arise, and what M2GEN is doing to address these disparities and improve representation.
The Importance of Universal Representation in Cancer Research
To ensure that cancer treatments help as many patients as possible, it’s critical that all patient populations be represented in research studies. Many of the newest cancer-fighting drugs are targeted at specific genetic mutations, so researchers need to fully understand the effect that these drugs will have on all cancer patients. If certain populations are left out of genomic studies, clinical trials, and other forms of research, then those groups will be less likely to benefit from treatments developed based on that research. Clinicians will also not have enough pertinent data available to make important care decisions for individuals in these groups.
Not only can a disparity in representation reduce the survival rate for the underrepresented population, but it can also affect:
- Their post-treatment quality of life
- Their risk of developing cancer-related complications
- The amount they must pay for cancer treatment (as well as for treatment of related conditions)
- The number of new cancer cases that develop among that population
How Disparities Arise in Cancer Research
Despite cancer researchers’ best intentions, certain segments of the population are often inadvertently underrepresented in genomic studies and clinical trials. For example, factors such as race, ethnicity, environment, and finances can all have an impact on the likelihood of developing of cancer-causing genetic mutations. However, many data-sharing networks in the United States primarily collect their information from cancer centers located in larger cities on the East and West Coasts, and the patients being treated at those centers represent only a small portion of the population. While not all of those patients necessarily live in the coastal cities where they’re being treated, it’s likely that the individuals who reside elsewhere are affluent enough to be able to take time off from work and pay for the costs of travel during treatment.
Consider the impact that this disparity might have on lung cancer research alone. Studies have shown that smoking cigarettes causes damage to DNA, and that those mutations in turn lead to the development of lung cancer. According to the CDC, the prevalence of cigarette smoking among U.S. adults is highest among those residing in the South (22.7%) and the Midwest (22.2%). And yet patients living in more rural areas are less likely to be enrolled in genomic studies and clinical trials than those living in coastal cities. With this in mind, it’s critical that major research institutions make it a priority to increase the diversity of the patients that enroll in their studies and clinical trials, or partner with other institutions that serve a broader population of underserved patients.
How M2GEN Is Helping to Address Disparities & Improve Representation
At M2GEN, we understand how important it is for all populations to be represented in cancer research, and we’re taking steps to minimize disparities so that every patient can receive the best possible care moving forward. We’re an oncology-focused health informatics solutions company, and our goal is to accelerate the discovery, development, and delivery of more personalized cancer therapies, thereby improving patient outcomes.
M2GEN is the operational engine and commercial partner of the Oncology Research Information Exchange Network® (ORIEN®), a first-of-its-kind alliance of leading cancer centers from across the country. Once consenting patients are enrolled in the Total Cancer Care® (TCC) protocol, which is open at all ORIEN member institutions, their de-identified genomic and clinical data can be made available to researchers across ORIEN, as well as scientists at biopharmaceutical companies. Researchers also have the option to re-contact the treating physician of enrolled patients to invite them to participate in additional studies.
How does this help address disparities in cancer research? As was noted above, other networks primarily source information from patients being treated at large cancer centers on the coasts. ORIEN, however, collects data from cancer centers that are spread across the country, including those in more geographically isolated regions. In addition to cancer centers in coastal areas (such as California, Florida, Georgia, Maryland, New Hampshire, New Jersey, New York, Virginia, and Washington, D.C.), our network extends to cancer centers in more central states, including:
- New Mexico
In fact, we operate one of the world’s most comprehensive registries of consenting cancer patients. Having access to data from this wider geographic area—and more specifically, from regions that may have previously been underserved—allows researchers to incorporate a more diverse population into their studies.
Contact us today to learn more about how we help minimize disparities and improve representation in cancer research.