SHARE Cancer Support is a nearly 50-year-old organization focused on supporting women with cancer. Initially formed by 12 patients with breast cancer, SHARE now supports all cancers prevalent in women and focuses on two main areas: patient support and community outreach. At the “Getting Our Fair SHARE” Conference to End Health Disparities, SHARE challenged participants to identify one “big idea” to address inequities in healthcare, according to Carol Evans, CEO and Executive Director of SHARE. The response was unanimous and underscored the need for patient navigation to address health disparities.
“This is a very direct-facing conference about race, culture and identity, and how it all impacts health access and health outcomes,” said Ms Evans. “And their answer came back loud and clear.”
This topic became the focus of conference workstreams in 2022 and 2023, and at last year’s Academy of Oncology Nurse & Patient Navigators (AONN+) Annual Conference, panelists who participated in these workstreams—representing Black, Hispanic, and Asian communities—discussed key takeaways for addressing health disparities through patient navigation, advocating for a healthcare environment where cultural competence is a cornerstone of care delivery.
Zilipah Cruz, MSN, RN, Senior Director for Oncology Patient and Nurse Navigation, Survivorship and Community Outreach at Orlando Health Cancer Institute, opened with a reflection on the legacy of Henrietta Lacks, a Black woman whose cells were harvested without her consent in 1951 at Johns Hopkins Hospital. This case epitomizes the historical mistrust Black communities often feel towards the medical system.
“Although we’ve come so far in treatment and inclusivity, there’s still a narrative being told throughout generations from people that we trust within our families; we’re told that when we go to the hospital, we’re not going to be heard,” she said. “So representation is important; patients need to have a nurse navigator or social worker that looks like them.”
Ms Cruz says documentation of barriers to care within Black communities is absolutely necessary to understanding the population being served. “Before you can address the disparity, you have to understand what the disparity is,” she said.
She also pointed out the importance of follow-through after providing healthcare at external community events that serve these communities. Navigators play a crucial role in ensuring that individuals with abnormal findings are not lost in the system, yet again.
“I want to spread hope that we have come far, but we still have a way to go, and we're definitely not where we need to be,” she said.
Sandra Morales, a patient navigator with SHARE Cancer Support, emphasized the navigator’s impact in facilitating more culturally competent interactions between patients and healthcare providers.
In Hispanic communities, the importance of language-specific services can’t be understated, but it comes down to more than simply speaking Spanish. Navigators who are familiar with cultural nuances can significantly enhance a patient’s experience by ensuring clear communication between the patient and the care team.
“Just having staff that speaks Spanish doesn’t mean you’re being diverse,” she stated.
Language and socioeconomic status are two of the biggest barriers to care for Hispanic patients. “So being able to provide education in their own language will keep the patient from feeling isolated,” she added.
Ms Morales emphasized the crucial role of the navigator in supporting, motivating, and empowering patients to be active participants in their own care, practice informed decision-making, and adhere to treatment and follow-up care.
According to her, the majority of phone calls to the Latina SHARE hotline are related to financial burden.
“Providing them with contacts and other tangible resources is imperative, so they don’t have to choose between treatment and paying rent,” she stressed. “Being able to provide resources with the goal of creating informed, self-sufficient patients has not only an immediate impact, but will hopefully have a long-lasting and sustainable impact as well.”
Mark Liu, MHA, Senior Director of Oncology Strategy, Transformation, and Analytics in the Oncology Service Line at Mount Sinai Health System, addressed the harmful stereotypes perpetuated by the “Model minority myth.” This myth paints Asian Americans as successful, well-adjusted, and free from challenges, obscuring the real healthcare disparities faced by Asian populations.
He emphasized the vast differences between Asian communities, stressing the need for navigators and other providers to recognize and address the varied experiences and challenges of East Asians, Southeast Asians, South Asians, and Pacific Islanders.
“Just like cancer, Asian Americans aren’t one group or one thing, and appreciating the differences between Asian communities is a great place to start,” he said. “Just as there’s no average American, there’s no average minority.”
In addition to the more well-understood socioeconomic and financial barriers, Mr Liu noted that in Asian communities, patients themselves are often their own biggest barrier. “They're concerned about the burden of the disease and how it will impact their quality of life, but also how it will impact the quality of life of their family and loved ones,” he said.
Mr Liu also underscored the importance of increasing screening rates in these populations, as cancer is the leading cause of death among Asian Americans.
Mr Liu encourages the collection of data on preferred spoken languages within a community, and making sure patient documents are provided in these languages.
“In New York, we’re translating documents into Spanish, Russian, Chinese, Bengali, Korean—all these different languages that really make it easier for our clinicians and staff to be able to do the million things that they have to do in a given day,” he said.
“To address health equity, I think first you have to be aware of the disparities within your health system,” added Ms Cruz. “There are even differences from New York City to Orlando—we’re not translating in Russian, but we are translating in Portuguese.”
Ms Morales advocated for embedding cultural competency into the training of healthcare professionals, involving more than just understanding of linguistic and cultural differences, and focusing on systemic biases that influence patient care.
“My challenge to navigators is to ask questions of your colleagues that don’t look like you,” said Ms Cruz. “And my challenge to minorities is this: let’s make sure we’re creating space for people to ask those questions, so that we can have those hard conversations and address the disparities that exist in cancer care.”
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