Four leading national cancer organizations have united in their mission to reduce the number of health disparities in the United States and to ensure all patients, regardless of social demographics and socioeconomic status, benefit from cancer research, according to a joint position statement published in Journal of Clinical Oncology.
In a summit attended by experts in clinical cancer research, epidemiology, public health and health care policy, representatives from NCI, ASCO, American Cancer Society and American Association for Cancer Research (AACR) crafted recommendations to promote cooperation among investigators in all areas of the cancer health disparities research community.
Bruce E. Johnson
“Our hope is that these consensus recommendations will help guide stakeholders across cancer research, including public and private groups, toward actions that will meaningfully advance cancer health disparities research and ultimately ensure that all cancer patients are able to benefit from innovations that can improve cancer care,” Bruce E. Johnson, MD, FASCO, president of ASCO, said in a press release.
In its annual State of Cancer Care in America: 2017 report released in March, ASCO noted that significant health disparities continue to persist.
The reported showed American black men with prostate cancer are more likely to experience longer wait times between diagnosis and treatment, more side effects from treatment and higher costs of care than American white men. Further, rates of breast and cervical cancer screening vary among Asian and Hispanic women by insurance status and how long they have been citizens of the United States.
The report also stated the hematology/oncology workforce is dwindling, with one oncologist per 100,000 rural residents compared with five oncologists per 100,000 urban residents. One quarter of all hematologists and oncologists in the United States practice in three states: California, New York and Texas. Meanwhile, Nevada, Idaho and Hawaii have the lowest number of oncologists per capita.
“We hope that the recommendations put forward through this unprecedented collaboration will promote cooperation among all stakeholders in the cancer disparities research community to ensure that research-driven advances benefit all patients, regardless of their race, ethnicity, age, gender, socioeconomic status and community in which they live,” Margaret Foti, PhD, MD, chief executive officer of AACR, said in a press release.
In the statement, the four organizations addressed issues confronting five key components of health disparities research and offered recommendations for each.
measures and tools for the next generation of cancer health disparities research.
Industry leaders noted the manner in which data are collected and integrated in disparities research is suboptimal, resulting in missing, inaccurate or overly simplified patient-level data. For example, a patient might be identified as Hispanic without identification of his or her race. In addition, health literacy and numeracy are rarely assessed in practice and are not available in administrative and research databases, and the collection of information on sexual orientation and gender identity are in their infancy.
Recommendations: In the case of race and ethnicity, questions should address ancestry, immigration status and enclave effects. Race, ethnicity, sexual orientation and gender identity should also be self-reported. In addition, journal editors and peer reviewers should standardize measurement variables regarding participants’ socioeconomic status, literacy, race, ethnicity, sexual orientation and gender identity — similar to the CONSORT and PRISMA guidelines.
Biologic and environmental determinants of cancer incidence.
Disparities in breast, prostate and colorectal cancers suggest the need for studies focusing on identifying genetic contributors. A successful example is the African American Breast Cancer Epidemiology and Risk Consortium, which has collected data and biospecimens from 7,500 black women with breast cancer and 17,000 controls.
Recommendations: Ensure that major initiatives such as The Cancer Genome Atlas, the Precision Initiative and the Beau Biden Cancer Moonshot Initiative include sufficient representation from minority populations and address questions relevant to the reduction of cancer health disparities. Develop international studies that examine the roles played by environmental, lifestyle and cultural factors in cancer incidences.
Biologic, environmental and system-level determinants of post-diagnosis survival.
Rather than improving over time, survival disparities between whites and racial and ethnic minorities are worsening for cancers such as prostate cancer, in which black men are more than twice as likely to die of the disease than white men.
Recommendations: Design risk-adjustment methodologies for oncology practices in low-resource environments that hold them accountable for high-quality care but do not penalize them for treating high-risk patients. Assess the clinical and financial effectiveness of alternative oncology payment models that provide upfront infrastructure investment for practices in low-resource environments.
Develop or enhance existing national biorepositories that contain specimens of solid cancers from underserved populations that are at least representative of the population demographics of those groups. Fund additional studies to determine how inflammation and the microbiome affect cancer stage in underserved groups, and oversample individuals from these groups in biorepositories aimed to address disparities.
community engagement strategies throughout the cancer care continuum.
A lack of workforce diversity is a barrier to improving access to care for underserved minority groups, as well as to advancing research on health disparities. Organizations such as ASCO and ASH have sought to increase workforce diversity in oncology through awards and mentoring programs that expose underrepresented minorities to careers in oncology.
Recommendations: Requirements should include sustainability plans for maintaining community relationships beyond typical grant funding cycles. To ensure a diverse workforce with varied life experiences, research and mentoring efforts should be expanded.
clinical trials to acknowledge and address cancer health disparities.
Because the goal of clinical trials is to provide evidence that is both valid and generalizable, future trials must include research questions that consider the multifactorial and multilevel components that characterize populations with the greatest cancer burden. Black men and women have a higher rate of breast, prostate, colorectal and lung cancers, yet bear a disproportionate burden of the comorbidities that typically exclude participants in studies.
Recommendations: More members of minority health care teams need to be involved in study design, with specific emphasis on inclusion and exclusion criteria. Underrepresented populations need to be informed about and recruited for clinical trials. Sponsors of clinical trials must eliminate cost and coverage barriers to clinical trial participation. – by Chuck Gormley
Disclosure: Johnson reports research funding to his institution from Novartis, and he has provided expert testimony for Genentech. Foti reports no relevant financial disclosures. Please see the full report for a list of all other author’s relevant financial disclosures.