Harvard Business Review
January 17, 2022
Kathy Giusti and Richard G. Hamermesh
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 individuals (153 for white individuals). While the gap has narrowed over the past two decades, it remains significant. Disparities exist for several types of cancer, including prostate, colorectal, breast cancer, and multiple myeloma. Yet despite higher death rates, all minorities, especially Black patients, have been and continue to be underrepresented in clinical research and registries.
The same urgency and cooperation triggered by the racial disparities in the Covid-19 death rate and the enrollment of people of color in Covid-19 vaccination trials are needed to reduce disparities in cancer deaths.
We offer a three-part strategy for enrolling more patients in cancer research that can be implemented immediately. It is based on interviews with dozens of health care leaders in the cancer space and insights from industry leaders at a recent summit we hosted for the Harvard Business School Kraft Precision Medicine Accelerator. Interviewees and attendees at this summit included representatives of the National Institutes of Health (NIH), the National Cancer Institute (NCI), the American Association for Cancer Research (AACR), health systems and cancer centers, pharmaceutical and biotech companies, universities, and nonprofit organizations such as the Multiple Myeloma Research Foundation (MMRF) and the Ad Council.
After applying this approach to reduce the disparity in the mortality rate for Black vs. white cancer patients, it can be used to address other populations and diseases.
1. Centralize information about clinical trial sites and clinical registries to identify sites able to enroll more Black patients.
Addressing disparities requires enrolling more Black patients in research and registries. This is especially true for studies in cancers that disproportionately impact 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 enrolling more Black patients could 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 with the ability to 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, adding expense and slowing a trial.
In the future, sites’ ability to enroll Black patients should be a key factor in selection. Site-selection criteria should include data about the number of Black patients with each particular type of cancer within a site’s catchment area as well as a site’s commitment to recruiting minority patients and its infrastructure and capabilities to enroll patients and conduct clinical trials.
Part of the problem today is this site information doesn’t exist or resides in fragmented silos. There is no centralized, standardized data repository with information about 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 some slice of patient data, but it isn’t shared.
Consequently, what is needed is a “market exchange” that centralizes information for all sites, indicating the number of patients cared for at a site and patients’ race, ethnicity, and disease, along with data about a site’s infrastructure, capabilities, experience, commitment to diversity, and willingness to support research and registries.
Also valuable would be a categorization of sites based on the demographics of their market and surrounding area, the number of patients per disease, and their experience and capabilities recruiting Black patients. As part of this categorization, it will be important to identify sites with large numbers of Black patients that lack trial experience but want to develop capabilities to participate in trials.
Creating this market exchange will require a public-private partnership where government entities (like the NIH, NCI, the National Community Oncology Research Program, and the Food and Drug Administration) and private-sector parties (including health systems and pharma companies) agree to contribute information, which is then aggregated, categorized, and made available to organizations selecting sites. The outcome will be the selection of sites that can enroll more Black patients in trials, which will decrease disparities in research and eventually decrease disparities in death rates.
2. Provide assistance to sites that have great potential to recruit Black patients for clinical trials and registries but little experience in doing so.
Most cancer trials have been conducted at largely the same academic medical centers. Yet 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.
While these community-based health care organizations have access to large numbers of Black patients and might have willing principal investigators, they don’t have the infrastructure to participate in trials. Funding for doctors and principal investigators at these sites is not enough; pharma companies still view these immature, unproven sites as too risky to work with. This is especially true because the staff at these sites, which is spread thin and burned out from the pandemic, often don’t have the capacity to undertake clinical research and recruit Black patients.
What is needed is more funding and coordination among health systems that lack a lengthy history as a cancer trial site but are seeking to participate in trials. Government and nonprofit cancer-focused organizations (such as NCI, AACR, Stand Up To Cancer, and MMRF) can provide the infrastructure and resources that these fledgling sites need to become active participants in cancer trials.
Instead of each cancer organization providing or funding its own separate, fragmented resources, a better approach is to collectively support a set of community-based 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 of and willingness to participate in trials and registries.
One reason that fewer Black patients participate in trials is in part because of limited access and fewer invitations to participate, as community-based health organizations are less likely to participate in trials. But lower participation is also due to the reluctance of many Black patients to volunteer because they distrust the health care system.
Lessons learned from the pandemic can be applied to cancer. In the first few months after Covid-19 vaccines were rolled out, Black Americans were less likely than white Americans to be vaccinated, due in part to distrust of vaccines. But as of September 2021, 70% of Black Americans reported being vaccinated, almost the same proportion as white Americans.
Multiple factors contributed to closing this gap, including a national campaign led by the Ad Council and Covid Collaborative, along with targeted, collaborative, grassroots efforts in many Black communities.
Similar collaborative actions can decrease disparities in cancer. It is not necessary to reinvent the wheel; it is important to build on existing 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. Both 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 U.S. government, brought together players from across the health care ecosystem to accelerate the development, manufacture, and distribution of vaccines. Collective action similar to Operation Warp Speed — that has the same degree of urgency — is needed to eliminate disparities in cancer outcomes. We are optimistic that the cooperation that occurred during the pandemic can be replicated across the cancer ecosystem.