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January 18, 2023
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Black, Hispanic patients with cancer more likely to report negative care experiences, bias

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Key findings:

  • About two-thirds of Black and Hispanic patients with cancer reported at least one negative care experience compared with 43% of white patients.
  • More than half of oncologists believed patients are treated unfairly based on their race often or very often.

Black and Hispanic patients with cancer and caregivers appeared more likely than their white counterparts to report at least one negative care experience, according to study results.

The findings, published in Journal of the National Comprehensive Cancer Network, showed Black and Hispanic patients also had a higher likelihood of reporting that the health care system treats people unfairly based on their race/ethnicity.

Percentage of patients/caregivers who reported negative care experiences infographic
Data derived from Schatz AA, et al. J Natl Compr Canc Netw. 2022;doi:10.6004/jnccn.2022.7051.

Background and methods

“The idea for this study came about as a collaboration with my colleague, Keysha Brooks-Coley, former vice president of federal advocacy and strategic alliances at American Cancer Society Cancer Action Network [ACS CAN],” Alyssa A. Schatz, MSW, senior director of policy and advocacy at National Comprehensive Cancer Network, told Healio. “We both read research citing significant disparities in guideline-adherent cancer care between patients who were Black vs. white, with some finding this disparity even when accounting for insurance status. However, we found very little research querying patients on how they experienced those disparities in care.”

Alyssa A. Schatz, MSW
Alyssa A. Schatz

Investigators contacted colleagues at the National Minority Quality Forum [NMQF] and the national survey firm, Public Opinion Strategies, to better understand patient and caregiver experiences of care.

“NCCN, ACS CAN and NMQF shared a goal of launching a project that would create meaningful action to reduce these inequities. Keysha, in particular, was deeply committed to ensuring the patient voice was included in and driving the project,” Schatz said. “As we moved forward with the research, we realized we wouldn’t have the full picture of care experiences unless we also understood the physician experience. So, we wound up with two surveys, one for patients and caregivers, and one for oncologists. The goal of both surveys was to better understand what was happening at the cancer care delivery level that might be driving these inequities in care outcomes.”

A core national survey plus oversampling produced 909 interviews with patients and caregivers. The surveys included questions about patient (73% white; 55% women) and caregiver (71% white; 61% women) experiences with and oncologist perceptions of racial disparities in cancer care. Negative care experiences included patients and caregivers feeling uncomfortable asking the care team questions, feeling the care team made assumptions based on patients’ finances or race/ethnicity and feeling patients received worse quality care according to insurance status.

Results

According to the study, 43% of white respondents reported at least one negative experience compared with 63% of Black respondents and 67% of Hispanic respondents.

“That is a substantial difference in how patients experience cancer care across race and ethnicity,” Schatz said. “Additionally, communication barriers were a reported challenge across all races, although patients of color were more likely to report these challenges.”

Researchers also found that more than half of the 208 oncologists who responded believed that patients are treated unfairly based on their race often or very often. In addition, 62% believed nonwhite patients received poorer care and experienced worse care outcomes than white patients.

“This data seems to indicate oncologists are divided in how they are thinking about disparities in patient experiences across race and ethnicity,” Schatz said. “When you pair this data with the patient experience survey, it tells us that patients who are people of color are having more negative care experiences than their white counterparts, but not all oncologists are acknowledging those differences.”

Limitations of the study included the fact that researchers could not oversample for appropriate representation among oncologists due to a lack of diversity within the field and a limited timeline for data collection.

“An important lesson we learned along the way was that we were unable to capture an appropriate sample of Black and Hispanic oncologists because there is such significant underrepresentation in the profession,” Schatz said. “Appropriate racial representation in oncology is critically important, and I’ve been excited to learn about certain health care organizations working to foster an interest in careers in medicine early by hosting summer internships. I’m hopeful that oncologists can work to grow these kinds of programs and their efforts to mentor young people who may not otherwise get those opportunities for exposure.”

Implications

ACS CAN, NCCN and NMQF used this survey to inform a national working group that develop actionable policy and practice recommendations to make meaningful change and reduce inequities in care systems, according to Schatz.

“ACS CAN, NCCN and NMQF are now partnering on the convening of the Alliance for Cancer Care Equity, which seeks to advance those recommendations with three key focus areas: improving diversity in clinical trials, improving access to cancer screening and early detection, and improving access to patient navigation services,” Schatz said.

Many oncology providers may view racial disparities as a problem of the health care system and society in general and believe they are unable to influence or change them, John Sweetenham, MD, professor in the department of internal medicine at UT Southwestern Medical Center and chair of the board of directors of NCCN, wrote in an accompanying editorial.

“However, previous studies suggest otherwise,” Sweetenham wrote. “It has been well-documented that health care professionals as a whole exhibit bias at comparable frequency to the rest of the population.”

There are no quick fixes to the challenges racial disparities present, according to Sweetenham.

“Increased efforts to increase the diversity of the oncology workforce are key interventions, as are improved navigation and support services for underserved minority populations,” he wrote. “In the shorter term, however, these survey results demonstrate the need and potential benefit of enhanced educational opportunities for oncology providers. Recent studies involving other minority groups, including the LGBTQ+ community, have shown the willingness and openness of oncology professionals to understanding more about the needs of underserved populations.”

References :

For more information:

Alyssa A. Schatz, MSW, can be reached at schatz@nccn.org.