Cancer is the second leading cause of death in the United States, but there are significant disparities by race and ethnicity. While the rate of new cases is similar for white and black patients, the death rate for black cancer patients continues to be higher (173 per 100,000 people) than for white people (153 for white people ). Although the gap has narrowed over the past two decades, it remains significant. Disparities exist for several types of cancer, including prostate cancer, colorectal cancer, breast cancer and multiple myeloma. Yet, despite higher mortality rates, all minorities, especially black patients, have been and continue to be underrepresented in clinical research and registries.
The same urgency and cooperation sparked by racial disparities in the death rate from Covid-19 and the enrollment of people of color in Covid-19 vaccine trials is needed to reduce disparities in cancer deaths.
We offer a three-pronged strategy to recruit more patients into cancer research that can be implemented immediately. It’s based on interviews with dozens of cancer healthcare leaders and insights from industry leaders at a recent summit we hosted for the Kraft Precision Medicine Accelerator in Harvard Business School. Respondents and attendees at this summit included representatives from the National Institutes of Health (NIH), National Cancer Institute (NCI), American Association for Cancer Research (AACR), health systems and cancer centers against cancer, pharmaceutical and biotechnology companies, universities and non-profit organizations such as the Multiple Myeloma Research Foundation (MMRF) and the Ad Council.
After applying this approach to reduce the mortality rate disparity between black and white cancer patients, it can be used to treat other populations and diseases.
1. Centralize information on clinical trial sites and clinical registries to identify sites capable of enrolling more black patients.
Addressing disparities requires enrolling more black patients in research and registries. This is especially true for studies of cancers that disproportionately affect black populations and communities. Historically, ensuring adequate representation of black patients has not been a priority when selecting clinical trial sites, and there were concerns that recruiting more black patients would slow down the trial.
At our recent summit, a representative from a major pharmaceutical company explained that choosing sites for a clinical study often involves investing millions of dollars. A company wants sites that can enroll as many patients as possible, as quickly as possible. Finding enough black patients and convincing these often reluctant people to enroll in trials can take additional time and resources, increasing expense and slowing down a trial.
Going forward, the ability of sites to recruit black patients should be a key selection factor. Site selection criteria should include data on the number of black patients with each particular type of cancer in a site’s catchment area as well as a site’s commitment to recruiting minority patients and its infrastructure and capabilities to recruit patients and conduct clinical trials.
Part of the problem today is that the information on this site does not exist or resides in fragmented silos. There is no centralized, standardized data repository containing information on the number of black patients at a site with a particular type of cancer. Clinical research organizations (CROs), site management organizations (SMOs), academic medical centers, government entities, pharmaceutical companies, consulting firms and other parties each have a portion of the data of patients, but they are not shared.
Therefore, what is needed is a “market exchange” that centralizes information for all sites, showing the number of patients treated at a site and the race, ethnicity and disease of the patients, as well as data on infrastructure, capabilities, experience, commitment to diversity, and willingness to support research and registries.
It would also be useful to rank sites based on the demographics of their market and surrounding region, number of patients by disease, and their experience and abilities in recruiting black patients. As part of this categorization, it will be important to identify sites with a large number of black patients who lack trial experience but want to build capacity to participate in trials.
Creating this market exchange will require a public-private partnership where government entities (such as the NIH, NCI, National Community Oncology Research Program, and Food and Drug Administration) and private sector parties (including health systems and pharmaceutical companies) agree to provide information, which is then aggregated, categorized and made available to organizations selecting sites. The result will be the selection of sites that can enroll more black patients in trials, which will reduce disparities in research and ultimately reduce disparities in mortality rates.
2. Provide assistance to sites that have great potential to recruit Black patients for clinical trials and registries, but have little experience in this area.
Most cancer trials have been conducted largely in the same academic medical centers. Still, there are many other sites across the country — including health systems and community hospitals — with large numbers of black patients and significant interest in participating in trials.
Although these community health care organizations have access to large numbers of black patients and may have volunteer principal investigators, they lack the infrastructure to participate in trials. Funding for physicians and principal investigators at these sites is not sufficient; Pharmaceutical companies still view these immature, unproven sites as too risky to work with. This is especially true because the staff at these sites, dispersed and exhausted by the pandemic, often lack the capacity to undertake clinical research and recruit black patients.
What’s needed is more funding and coordination between health systems that don’t have a long history as a cancer trial site, but are looking to participate in trials. Cancer-focused governmental and nonprofit organizations (such as NCI, AACR, Stand Up To Cancer, and MMRF) can provide the infrastructure and resources these fledgling sites need to become active participants in cancer trials. .
Instead of each cancer organization providing or funding its own separate and fragmented resources, a better approach is to collectively support a set of community resources for all cancers. These resources should include, for example, care coordinators, patient navigators, community liaisons, clinical trial research associates, and other administrative resources.
3. Engage black cancer patients to increase their awareness and willingness to participate in trials and registries.
One of the reasons fewer black patients are participating in trials is in part because of limited access and fewer invitations to participate, as community health organizations are less likely to participate in trials. But the low turnout is also due to the reluctance of many black patients to volunteer because they mistrust the healthcare system.
Lessons learned from the pandemic can be applied to cancer. In the first few months after the rollout of Covid-19 vaccines, black Americans were less likely than white Americans to be vaccinated, in part due to mistrust of vaccines. But in September 2021, 70% of black Americans said they had been vaccinated, almost the same proportion as white Americans.
Multiple factors have contributed to closing this gap, including a nationwide campaign led by the Ad Council and Covid Collaborative, as well as focused, collaborative, grassroots efforts in many Black communities.
Similar collaborative actions can reduce cancer disparities. There is no need to reinvent the wheel; it is important to build on already successful programs, campaigns and tools that have already been developed by organizations such as Stand Up to Cancer, the Black Coalition Against Cancer, NCI and others. Local and national campaigns for all cancers could go a long way. The keys are collective strategies, leadership and funding.
Collaborative action is needed
Operation Warp Speed is an example of successful collective action. This public-private partnership, initiated by the US government, brought together players from across the healthcare ecosystem to accelerate the development, manufacturing and distribution of vaccines. Collective action similar to Operation Warp Speed – which has the same degree of urgency – is needed to eliminate disparities in cancer outcomes. We are optimistic that the cooperation that has occurred during the pandemic can be replicated across the cancer ecosystem.