When it comes to cancer care, and life in general, it’s important to understand that equity is not the same as equality. Equality means everyone gets treated the same way; equity, on the other hand, is about fairness. It means everyone gets what they need based on their own unique situation.
The difference is important, according to members of a panel of navigators from the AONN+ Leadership Council, who spoke on health equity in navigation at the AONN+ 2023 Annual Conference in San Antonio, TX.
The difference between equality and equity is part of the reason the United States spends more on healthcare per person than any other advanced nation, but its citizens have poorer health. Navigators play a crucial role in ensuring health equity in cancer care, particularly in marginalized communities.
“We don’t ever give everyone the same thing. We don’t give everyone the same radiation treatment or the same chemotherapy treatment, and that means when we think about access to healthcare, it shouldn’t look the same for everyone,” said Jennifer Bires, LCSW, OSW-C, CST, executive director of Life with Cancer and Patient Experience at Inova Schar Cancer Institute.
A person’s health depends on many factors—eg, their environment, workplace, education, and access to clean drinking water and nutritious food—otherwise known as social determinants of health. Health inequities are unfair, unjust, avoidable, or unnecessary, and according to Ms Bires, it’s part of the job of navigators to help mitigate these avoidable injustices in healthcare.
The root causes of health disparities are complex and especially prevalent in marginalized communities and include implicit or unconscious bias, poor communication with patients, potential language barriers in care delivery, lack of representation in the oncology community, mistrust of the healthcare system, and lack of diversity in clinical trials.
According to Cheryl Bellomo, MSN, RN, OCN, HON-ONN-CG, oncology nurse navigator at Intermountain Cancer Center Cedar City Hospital, navigators play a key role in addressing the root causes of health disparities. She says that the best way to address implicit bias is to establish a culture of humility within organizations. When it comes to addressing poor communication, navigators serve as integral liaisons to the rest of the care team. When language barriers come into play, navigators serve as the patient’s voice.
“When I hear about mistrust of the healthcare system, it gives me the feeling that we are blaming the group or the population for this problem, when in fact we all should be looking at the trustworthiness of our organizations,” she said. “We need to be able to be transparent with patients and their families, and we need to build up that trust and rapport. We need to inquire, versus making assumptions.”
Lack of diversity in clinical trials not only creates a barrier to certain populations receiving cutting-edge therapies, but it also affects the efficiency of the research as a whole, as the findings may not be translatable to entire populations.
Ethnic or communities of color, which make up 40% of the US population, continue to experience cancer inequities. For instance, the cancer incidence in African American men is 6% higher and cancer mortality is 19% higher compared with Caucasian men; African American women, who have an 8% lower cancer incidence than Caucasian women, have a 12% higher cancer mortality.
Further, compared with individuals living in urban areas, rural communities show 17% higher death rates from all cancers combined.
These disparities in cancer care persist, with marginalized communities facing significant barriers to accessing and receiving quality oncology screening and treatments, leading to more advanced-stage presentation and worse oncologic outcomes.
“We need to get these barriers addressed and provide our patients with the care they need,” said Ms Bellomo. “This is where navigation is a critical component.”
Patient navigation is the only evidence-based intervention to eliminate health disparities and improve health equity across the cancer continuum. The Patient Navigation Research Program, a multisite, randomized controlled trial conducted in heterogeneous settings, compared patient navigation with usual care, with outcomes that included time to diagnosis and treatment, patient satisfaction, and cost-effectiveness. Within the study cohort of over 7500 patients, African American patients experienced the greatest reduction in time from abnormal cancer screening to resolution, suggesting that navigation has the most profound impact on historically marginalized communities.
According to Ms Bellomo, members of AONN+ play a significant role in advancing health and racial equity, making sure that all people have access to healthcare, have their needs met, and their barriers addressed, so they can lead the healthiest and fullest lives possible.
“We do this on a daily basis, and we need to continue doing this by supporting our patients so they feel they can communicate their health concerns—their family histories, their own health history, their genetic predisposition, all factors that will help us increase cancer prevention and early detection,” she said.
Zarek Mena, OPN-CG, a breast health program manager in Norwalk, CT, offered her own “boots on the ground” example of navigation addressing health equity.
She and her colleagues at Nuvance Health implemented an intervention to ensure that any patient who wanted to try cold capping had access to a scalp cooling system. They also wanted to make sure it was effective, no matter the patient’s ethnicity, age, physical ability, or financial means.
“Scalp cooling is effective, but not effective for everyone,” Ms Mena noted. “So this was a tall order, but we [as navigators] are uniquely positioned to address this.”
They began by looking at which patients were generally excluded from cold cap programs and found that males were often overlooked. By addressing this disparity, they now have the first male in the United States on Paxman Cold Cap enrolled in their program. In elderly populations, they found that Ativan helped address anxieties about using cold caps; they also made concerted efforts to ensure that patients of color received tailored support and advice for preventing alopecia with certain hair textures. For uninsured/limited income patients they offered grant funding, and in all populations, they increased staff education about scalp cooling.
This exercise in equity was accomplished through a team effort by nurse navigators, patient navigators, and social workers, and they’re now able to educate other centers on implementing cold cap programs.
“One of the most rewarding things is not just reaching our patients, but being able to educate other centers on how to implement scalp cooling programs,” she said. “Everyone should be able to do this at every institution, and we were able to figure that out. That’s how it was equitable, and that’s how we were able to make an impact.”
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