Racial inequality persists across the entire healthcare spectrum—from patient disparities to the healthcare workforce’s current makeup and even to the education of the next generation of practitioners. But nurse scientists conducting clinical trials have the opportunity to change that.

In part one of a two-part article series for the November 2021 issue of the Oncology Nursing Forum, Jones et al. outlined ONS’s research priorities for today’s oncology nurse scientists in terms of systemic barriers in patient clinical trials and access to care. They challenged the profession to be “advocates for equity in nursing practice, education, and health policy and advocate for patients with cancer and oncology professionals so as to advance health equity and sustain healthier communities.”

A Common Lexicon

Words have layers of meaning and subtext, and some may unintendedly contribute to bias or disparities in clinical research, Jones et al. explained. They used specific population terminology to define ONS’s research priorities to promote accurate and considerate study approaches that welcome representation from all groups in society. See the sidebar for Jones et al.’s recommended terms and considerations.

Race and Ethnicity Terminology for Oncology Nursing Research

Ethnicity: use to refer to cultural commonalities, such as language, religion, and traditions. It is a social construct that can vary among individuals assigned to the same race.

People of color: use to refer to African Americans, Asian Americans, Native Americans, Pacific Islander Americans, multicultural Americans, Latino Americans, and any individuals who are not White.

Race: use to describe individual phenotypical traits, such as skin color or facial features. It is a social construct that elicits certain social attitudes and perceptions toward a group of people.

Underrepresented minority: use only to refer to a population that is a true minority in the study sample (i.e., less than 50% of participants) and is lower than the patient population it represents. Do not use minority to refer to patient groups.

Specific terms: use precise and accurate terms to describe patient populations. For example, Black is not interchangeable with African American.

Adaptability: meaning and perception change over time; watch the literature and adapt your terminology usage as appropriate.

Research Gaps and Priorities to Overcome Disparities and Promote Equality

Evidence has long demonstrated that people of color are at higher risk for diagnosis and mortality from certain types of cancer, Jones et al. reported. The authors described factors such as mistrust in health care, a healthcare system designed for White patients, and clinical research that doesn’t account for population-specific considerations (e.g., most Black and African American women with breast cancer have estrogen-negative diseases but most studies focus on estrogen-positive disease). They proposed that oncology nurse scientists incorporate the following recommendations in their research studies.

Use critical race theory (CRT): “CRT explains that racism is a deeply embedded and integral part of society; therefore, it is necessary for health disparities research to be grounded in the experiences of marginalized populations and to use community-engaged approaches and for researchers to employ critical self-reflection,” Jones et al. explained. They challenged scientists to recognize key differences in the experiences and health among the subgroups in their study.

Improve bidirectional communication and shared decision-making: Jones et al. recommended conducting studies that target providers’ attitudes, bias, communication style, and consideration of patient preferences, as well as patients’ values, beliefs, fears, and literacy.

Target social determinants of health: Relationships between mid- and downstream social determinants of health, such as education and neighborhood safety, and health outcomes are well established, Jones et al. said. They encouraged nurse researchers to study how upstream social determinants of health, such as policy, legislation, and governance, create structural challenges and barriers for patients with cancer to access care.

Approach modifiable cancer risk factors that address social determinants of health: Historically, people of color have faced barriers to their ability to modify cancer risk factors like diet, smoking, exercise, cancer-associated infections, and adherence to screening recommendations, Jones et al. explained. Nursing research should focus on environmental and structural factors, such as bias in provider interactions, financial and food insecurity, and access to transportation, safe spaces for physical activity, and cancer screening.

Accurately measure social determinants of health and their impact: The authors recommended adopting standard measurements to facilitate broader analysis and collaboration, larger sample sizes with greater statistical power, multilevel interventions, and a common language for interpretation. They also emphasized the importance of measuring race as a social determinant of health.

Collaborate with communities: Jones et al. encouraged nurse scientists to work with lay navigators, community health centers, and others who are familiar with a group’s particular barriers and facilitators of health.

Find interventions that address modifiable barriers and facilitators to evidence-based care: “Providing understandable and accessible knowledge of prevention strategies to all communities, particularly historically marginalized communities, should be a key strategy for community-based programs,” Jones et al. wrote. They recommended considering improving provider communication, building trust, and involving cultural beliefs to improve uptake of evidence-based intervention in those communities.

Make the population’s experience the center of your research: Jones et al. explained that building partnerships among underserved and historically marginalized communities is an essential component for many of the research theories that guide today’s studies. Nurse-led studies should incorporate the eight principles of community-based participatory research.

The gaps should be studied and ultimately narrowed through involvement across all aspects of society, Jones et al. concluded: education, funding, policy change, and even reporting and disseminating findings in nursing journals or conferences.

For more information about how oncology nurse scientists can develop the evidence foundation to address structural racism and health inequities, refer to the full article (part 1 and part 2) by Jones et al.

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