How Real-World Data Can Help Eliminate Cancer Care Disparities

While the healthcare industry has made significant strides in leveraging data and technology to treat cancer, gaps in treatments and outcomes continue to persist. Cancer care disparities still pervade the oncology sector, showing that industry improvements don’t extend to all population groups.

According to an October 2019 report from the American Cancer Society, the overall cancer death rate declined by 27 percent between 1991 and 2016. However, during that time socioeconomic disparities in cancer mortality only grew larger.

“Over time, we've seen that cancer mortality rates are declining across the board. But the gap between racial and ethnic minorities – in particular, people who identify as Black or African American – and White Americans continues to be large. We aren't making the progress that we would like to see,” Erica Warner, ScD, MPH, assistant professor, Harvard Medical School and Massachusetts General Hospital, told HealthITAnalytics.

Warner is part of a new effort to address disparities in cancer care using real-world data. The Engaging Research to Achieve Cancer Care Equality (ERACE) initiative will create a population-based cancer registry based on race and ethnicity. This registry will be the most comprehensive in the US to ensure equitable outcomes.

“The hope is that the ERACE Initiative is part of a larger range of activities to try and combat disparities not just in cancer, but in other diseases as well,” added Warner, who will serve as an ERACE leadership advisory board member.

“But within cancer, we expect that the ERACE Initiative can help us further understand the ways in which cancer care delivery contributes to disparate outcomes for people of color, lower socioeconomic status, and other marginalized groups.”

The project will aim to eliminate gaps in cancer care that have emerged with the dawn of better technologies and treatments.

“Roughly 40 years ago, breast cancer was an extremely deadly disease. We were not very good at treating it. We weren't systematically detecting the disease very early. It didn't really matter who you were: If you had breast cancer, it was unlikely that you would experience a good outcome,” Warner said.

“But now, we have amazing targeted therapies. We have widespread mammography, which can detect the disease early and ostensibly make it less likely to spread. And that’s where disparities can start to arise. Because the more that we can do, the more opportunity there is that some people will receive those interventions and benefit from them, and others will not.”

The real-world data made available by the ERACE initiative will also help researchers examine the whys of care disparities more easily and comprehensively than other data sources.

“It's sometimes challenging to find data to answer important research questions, and that means questions sometimes go unanswered or get shelved. When researching racial and ethnic disparities in cancer, we often find that there are relatively small numbers of individuals from certain racial and ethnic groups. This is because large prospective cohort studies are predominantly made up of non-Hispanic white individuals,” Warner said.

“The largest and longest-running prospective cohorts are approximately 6 percent non-white, which makes it hard to investigate disparities. Other cohorts that exist are often single-race cohorts. For example, the Black Women's Health Study has made a lot of advances in terms of our understanding of risk of cancer in black women, but you can't directly investigate disparities in that setting because it's only black women. There's no internal comparison group.”

With this cancer registry, researchers will have access to big data and thorough information about patient history, characteristics, and treatments.

“The real-world data that the ERACE Initiative brings together can address some of these issues. We have the opportunity to try and answer questions about different groups. There's also more depth of data – we have both clinical data and patient-reported outcomes information that can support broader and richer questions,” Warner said.

“There are opportunities for AI, machine learning, and other types of algorithms to crunch the data in a way that is not traditionally done with respect to understanding disparities.”

The work of the ERACE initiative could also broaden the diversity of clinical trials, helping researchers develop therapies that work for all patient populations, Warner stated.

“It's been a longstanding problem that populations disproportionately burdened by cancer are often not well-represented in the trials that generate cancer treatments,” she said.

“There are lots of psychosocial and social factors that can contribute to that. But one of the system problems that contributes to underrepresentation is that trial inclusion and exclusion criteria are too strict and disproportionately lead to patients of color being ineligible for trials. And it's not totally clear that all of these restrictions are necessary.”

Clinical trials may exclude people who have certain comorbidities, or based on their physical performance status, Warner noted. These eligibility criteria can be tied to racial and ethnic disparities as well as individual disadvantages, leading to people of color being disproportionately left out of trials.

ERACE will examine trial enrollment, in addition to detection, treatment, survivorship, and other areas where disparities exist.

“Using real-world data, the ERACE Initiative can examine outcomes of patients that would have been excluded from trials,” Warner said.

“If we examine data from patients that would have been excluded from trials, but receive these treatments in the real world, do we see more adverse events? Are there worse outcomes or not? That could go a long way in terms of potentially advocating for change and loosening trial inclusion and exclusion criteria.”

The overarching objective of the ERACE initiative will be to discover and develop solutions that can reduce and ultimately eliminate disparities in cancer care.

“Our goal is not just to describe disparities, because there's a lot of data out there that describes to what extent disparities exist and their magnitude,” Warner concluded.

“Instead, we’re trying to ask more nuanced questions about mechanisms so that we can point to interventions. The aim is to ultimately be able to do something that reduces observed disparities in cancer incidents and mortality.”