“Our hope is that these consensus recommendations 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 patients with cancer are able to benefit from innovations that can improve cancer care,” ASCO President Bruce E. Johnson, MD, FASCO, said.
Cancer health disparities are pronounced and well documented. Medically underserved populations, including racial and ethnic minorities and individuals of lower socioeconomic status, experience worse cancer outcomes than nonminority, high-income populations. As the organizations discuss, disparities are driven by a range of patient, community, and structural factors, including sociodemographics, health care access, lifestyle factors, and biological and genetic differences. Although an understanding of underlying causes of cancer disparities is growing, emerging and increasing cancer disparities among some populations continue to create new challenges—requiring a deeper understanding of the interrelated causes and how to effectively address them.
Research Needs and Priorities
The joint statement outlines the following top research needs and priorities:
- Defining and improving data measures and tools for cancer disparities research: Patient data are often incomplete, inaccurate, or oversimplified and usually do not consider many social and community factors. Cancer disparities research is limited by a lack of comprehensive, consistent data on factors that impact disparities in cancer care and patient outcomes, including a patient’s social status and demographics, community and lifestyle factors, and biology and genetics, as well as by widespread variation in data collection methodology.
- Addressing disparities in cancer incidence: Eliminating disparities in cancer incidence requires advancing knowledge of biological and environmental determinants of cancer incidence disparities, including a greater understanding of the role of genetics in contributing to higher cancer risk among certain populations.
- Addressing cancer survival disparities: Currently, the interplay between system-level, biological, social, and environmental factors is often inadequately accounted for in cancer research. Counteracting growing disparities in cancer survival requires a more complete picture of the range of factors involved and how to track, identify, and address them.
- Improving community engagement in cancer research: Poor translation of innovation in cancer care into health care systems in diverse communities has hampered the impact of innovative treatments and precision medicine advances on underserved patient populations. Ensuring that all patient populations benefit from advances in cancer care requires stronger community engagement in cancer research.
- Redesigning cancer clinical trials to acknowledge and address cancer disparities: Recruitment and retention rates in cancer clinical trials are lower for some patient populations. Changes to the clinical trials system are needed to improve the generalizability and applicability of clinical trial findings and better inform the care of underrepresented patient groups.
The statement provides a series of recommendations to address each of these outlined needs, with a particular focus on guiding investments in cancer health disparities research. The statement also includes broad action items that can be taken to further the field of cancer research disparities as a whole, based on the current landscape and existing priorities.
- Investigators, research sponsors, and research publications should insist on the use of the highest-quality data measurement tools and the most granular data for conducting cancer disparities research.
- Establishment of a health disparities research network and multiple consortia to gather relevant patient contextual data and biospecimens are needed to effectively inform cancer disparities research that examines the multilevel factors involved in causing cancer disparities.
- Best-practice strategies should be designed and used to engage underserved populations in research studies and ensure they are informed of clinical trial opportunities.
- Researchers should be adequately trained in community engagement research tactics, and academic promotions should appropriately account for time needed to conduct community engagement research.
- Cancer treatment systems should ensure real-time monitoring of patient experiences to understand how patients are being treated and intervene when care and outcomes disparities are identified.