To remedy the systemic, institutional-level racism inherent in healthcare systems, navigators and other providers must actually work with those affected communities to determine barriers, appropriate outcome measures, and real-time interventions, according to Sam Cykert, MD, professor of medicine at the University of North Carolina.
The real-time digital data provided by electronic health records (EHRs) can successfully be used as an infrastructure to mitigate cancer treatment disparities, according to Christina Younge, MPH, MCHES, but for these types of technology- based interventions to work, navigators, clinical teams, and health-system leaders must keep their communities engaged in working through barriers and ensuring accountability.
“We’ve used technology very successfully as an intervention,” said Dr Cykert. “But in the areas where we’ve applied this intervention, it’s been navigators and communities doing God’s work to really optimize care and end disparities in cancer treatment.”
At the AONN+ 12th Annual Navigation & Survivorship Conference in November 2021, Dr Cykert and Ms Younge, along with their colleagues, Matthew A. Manning, MD, and Dana Herndon, RN, BSN, ONN-CG, CPHQ, discussed the prevalence and impact of racial disparities in healthcare and provided attendees with insight into real interventions that have led to increased equity in cancer treatment in several healthcare systems.
Understanding Racial Disparities in Healthcare
According to Dr Manning, chief of oncology at Cone Health, “healthcare is an institution, and the outcomes of individuals in this institution vary by race. If we control for socioeconomic status, age, and comorbidities, we see that there’s racial disparity in care and in outcomes, and despite improved diagnostic testing and treatments leading to better results, the disparities don’t seem to be improving.”
Additionally, the COVID-19 pandemic has only exacerbated these disparities in care.
“It’s sometimes said that when white America catches a cold, black America catches pneumonia,” he said. “And the pandemic has shown this to be true.”
Focusing on disparities in cancer care in particular, racial disparities in lung cancer surgery are well-described in the research and have been persistent for more than 30 years.
“We’ve known about these disparities over the span of 30-plus years, and no improvements were made in cancer treatment and parity during that time,” Dr Cykert pointed out.
While socioeconomic factors like insurance status, educational level, and income do matter, other racial and ethnic disparities also contribute to the problem. Implicit bias on the part of providers, poor perceptions of communication on the part of patients, and unacknowledged nonmedical beliefs that tend to be higher among certain populations (ie, prayer alone can cure), all contribute to disparities in care.
Now, even with the hope that precision medicine is providing in the world of cancer, significantly fewer black patients are undergoing molecular testing compared with white patients.
“Right now, we’re in this explosion of precision medicine, we have these great biologic agents that control cancer, and we have this wonderful new horizon,” said Dr Cykert. “But we’re already finding that in lung cancer, black patients are being tested less and therefore are being offered treatment less with biologic agents.”
These disparities translate to an increase in mortality. In lung cancer, for example, white mortality is 54 per 100,000 patients, while black mortality is 63 per 100,000. “So we see a higher mortality in black patients, despite a similar incidence of disease,” Dr Manning noted.
Treatment rates correlate with death rates in cancer, and black patients receive treatment at lower rates than white patients. “There’s no magical aggressive disease in black patients with lung cancer,” said Dr Cykert. “Basically, if you don’t get treated, you die.”
Using Innovative Solutions
Addressing these longstanding racial disparities in cancer care requires innovative solutions, according to Ms Younge, assistant professor and director of undergraduate studies at the University of North Carolina at Greensboro. She cited a training called “Undoing Racism” utilized by the Greensboro Health Disparities Collaborative, in which participants are challenged to analyze the structures of power and privilege that hinder social equity.
“It’s a waste of our human resources when people are not valued equally,” she said. “Going through these trainings has allowed us to understand what racism is about, and that strengthens us and allows us to work together and talk about these heavy issues.”
Dr Cykert explained that interventions to address racial disparities must be system-level and should include transparency—in real time—that can affect treatment.
“These studies I’ve cited that take secondary data and say that black patients aren’t getting treated as well as white patients might be 3, 4, or 5 years old,” he explained. “So the disadvantaged patients they mentioned are already dead. That’s why you need this transparency in real time.”
With EHRs, digital data are now everywhere, but according to Dr Cykert, “we’ve hardly scratched the surface on how to harness those data for care.” However, real-time transparency using that digital data might be the key to addressing some of these disparities.
In addition to transparency, these interventions must have accountability and must use enhanced, understandable communication, he added.
“So many times, we use medical lingo, and we don’t talk to people in real terms; we don’t connect with them about their families and their lives,” he noted. “But the use of understandable language is extremely important to overcome systematic bias and barriers.”
He provided examples of real, multifaceted interventions he and his team have used. The first was a real-time warning system derived from EHRs to warn providers of things like missed appointments or anticipated milestones in care not being achieved.
“When a patient missed an appointment, that would cue the navigators to reengage that patient and help them overcome their barriers,” he said.
The second intervention related to accountability and provided feedback to clinical teams regarding patients’ completion of cancer treatment according to race. By presenting data according to race (or any other disadvantaged group), disparities in treatments or outcomes must be acknowledged and addressed, he noted.
The ACCURE Project
According to Dr Cykert, the most important intervention—the ACCURE Project—was centered around navigation and enhanced communication. This patient-centered intervention used navigators who were specially trained in particular barriers and beliefs that limit care for African Americans.
“The navigators would engage with patients before there was a problem, so there was already a bond and a connection when problems did arise,” he said.
This navigation intervention also relied heavily on community involvement, not only in terms of providing navigators with health equity training, but also in terms of educating navigators about appropriate protocols and barriers specific to their own disadvantaged patients. Through this intervention, navigators gained an understanding of structural racism and barriers that are more likely to affect people of color.
“Without the community, how is the navigator supposed to know what to do?” he asked. “A signal comes from the informatics system that alerts them to a problem, but they can’t solve that problem and get the patient over the hump to completing their care without knowing the community’s resources and perceptions.”
Ms Herndon, a thoracic oncology nurse navigator at Cone Health, participated in the ACCURE Project. She explained the intervention further, noting that the project’s 6 themes were centered around transparency (patient-centered advocacy, addressing system-level barriers to care, and connecting patients to resources), and accountability (reengaging patients after lapsed treatment, addressing symptoms and side effects, and emotional support).
Some of the navigator’s roles in relation to these themes included advocating for patients to receive mental health services during treatment, bridging the gap in communication between patient and oncologists, setting up transportation, and celebrating milestones.
Becoming an ACCURE-specialized nurse navigator involved training modules (ie, health equity training, the “teach-back” method, and proactive patient engagement), as well as data-informed follow-up through use of a real-time registry.
According to Ms Herndon, the ACCURE intervention led to the elimination of multiple barriers, resulting in better engagement between patients and their care team, better adherence to treatment, and better patient outcomes.
Higher rates of both black and white patients completed their cancer treatment in the ACCURE intervention group compared with the control group, Dr Cykert reported, debunking the misconception that concentrating on minority groups will create barriers to treatment for non-minorities.
“These interventions are not impossible to implement,” added Dr Cykert. “These are things that can be done in any community and any health system.
The navigation team at Cone Health is now implementing the ACCURE Project into practice.
“We learned a lot from the study, and we were able to close the gap in treatment completion, but unfortunately, that doesn’t guarantee a permanent change,” said Dr Manning. “We continue to work toward health equity by educating our staff and sending other disease-site navigators to a 2-day antiracism workshop. We’ve also built a real-time registry into our EHR, and our navigators are being trained to enter patients into it; so when patients miss milestones in care, such as a biopsy, surgery, or treatment, the navigators will be alerted.”
According to Ms Herndon, navigation was the key to the ACCURE Project, and the primary impactors on navigation were the health equity training and software technical support. “Navigation wasn’t the only key,” she added, “but it was definitely instrumental.”