The currents of the racial justice movement and the Covid-19 pandemic have amplified persistent and pernicious disparities in access and outcomes across so many aspects of American life, including cancer care.
Many people are aware of the dire — and disproportionate — consequences that Covid-19 has had on the Latinx and Black American communities. New research shows that newly diagnosed Black cancer patients are at a higher risk of severe Covid-19 than white patients.
But cancer statistics on their own have consistently painted a grim picture of the wide gaps in cancer care that exist for people of color. In the U.S., for example, Black women with breast cancer are 40% more likely to die than white women today, even though no such disparity existed 40 years ago.
And while people of color comprise 40% of the population and are the primary demographic engine of this nation’s future growth, they are consistently underrepresented in cancer clinical trials. The proportion of Black participants has actually declined in recent years.
This is no longer a medical and research problem. It is a moral problem that threatens the right of all Americans to fair and equitable health care.
“The current cancer care system is failing Black people,” Robert Carlson, a professor of medicine at Stanford and chief executive officer of the National Comprehensive Cancer Network, wrote in STAT this summer following the death of George Floyd.
Better-funded public education for wealthier and whiter communities and better food and recreation opportunities for them carry over to the health care options and institutions that are available to those communities, and not necessarily for poorer communities of color.
There are several things we can do about that.
Defining the problem is the first step toward a solution
It is not enough to talk about the symptoms. We need to do what good doctors do: understand the root causes of the sickness. Only when we have a deeper understanding of what is driving these inequalities can we develop system-wide solutions to advance equity and inclusion.
Better data can help.
My company, ConcertAI, has started a program called Engaging Research to Achieve Cancer Care Equity (ERACE). It brings together the latest data and technology along with top U.S. oncologists and cancer research centers to create a race- and ethnicity-based cancer registry. The registry is intended to expand our understanding of what is driving these inequalities, make it easier to innovate to create better health care outcomes for populations among which disparities exist, and support the next generation of researchers in their search for new solutions.
This registry is collecting real-world data, a term that describes the vast and ever-expanding universe of medical data collected outside of clinical trials. It includes data from electronic health records, personal data from surveys and wearable devices, insurance claims, and more. These data will be used to track the causes of inequities in cancer care and accelerate reform and investment in areas such as clinical trial enrollment, cancer detection and treatment, and survivorship. A race- and ethnicity-based cancer registry with research-grade datasets will allow researchers to look both inside and outside the clinical setting to better understand the health and social factors that drive disparities in cancer, as well as in medicine in general.
While the National Institutes of Health has a leading role to play in the fight for equality, the private sector is not waiting for federal agencies to act. Leaders in the health care sector do not intend to be judged for how much attention we bring to this issue, but rather how long it takes us to close the disparity gap.
As I’ve learned from Otis Brawley, a distinguished professor of oncology and epidemiology at Johns Hopkins University and an ERACE adviser, disparities exist when individuals cannot access basic services like education, healthy food, or health care at the national standard. One step toward providing those basic services and human rights requires us to reframe the questions of equity and advance actionable insights that will accelerate the prevention, detection, and treatment of cancer in the United States.
Data — and data access — are equalizers in cancer
Here are a few ways researchers can use real-world data, deployed at enterprise scale across hospitals and research organizations, to transform approaches to these disparities:
- Measure differences in cancer care across regions and population groups, allowing researchers to see trends and forces that may be imperceptible within an individual institution or even a single state.
- Reframe research questions to address requirements for clinical trial participants across race, class, and socioeconomic status that advance parity in care.
- Harness data to redesign clinical studies to be more efficient, and employ novel study designs like adaptive trials and cluster randomization to make more rapid advancements.
- Change how and where clinical trials are conducted to identify sites where health disparities exist or to better include people of color.
- Foster new cancer-care models in which health care providers instill trust in patients most disadvantaged by existing systems and disparities.
Companies seeking to cooperate in the battle against cancer have a responsibility to eliminate racial disparities in clinical research and health care. It’s even more important today, as precision medicine becomes an increasingly integral part of cancer and other care. It will be handcuffed if we continue to ignore the full diversity and variability of the human condition.
We know what some of the solutions might look like, such as placing stricter rules around ensuring diversity in clinical trials, adhering to the same care guidelines and protocols regardless of race, breaking down barriers that prevent hospitals from accepting patients for trials due to insurance status, and reevaluating health care policies to allow patients to enroll in clinical trials regardless of insurance status.
Change does not happen overnight, so we must get going now and not rest until we have created a nation in which equity in health care, including cancer care, exists for every patient, everywhere, every day. This has become my singular focus, one I hope is shared by many, many others.
Warren A. Whyte is vice president of scientific partnerships at ConcertAI.