Community navigators assist patients and their families throughout the entire cancer care continuum, from screening and diagnosis through treatment and survivorship, all the way to palliative care and the end of life.
Community navigators assist patients and their families throughout the entire cancer care continuum, from screening and diagnosis through treatment and survivorship, all the way to palliative care and the end of life. “What community navigators do is different from what most community health workers do,” said Linda Burhansstipanov, MSPH, DrPH, at the 2017 Academy of Oncology Nurse & Patient Navigators (AONN+) West Coast Regional Meeting. “They actually cross the threshold of the hospital, rather than performing a handoff at the clinical setting.”
According to Dr Burhansstipanov, member of the Cherokee Nation of Oklahoma, founder of the Native American Cancer Research Corporation, and President of the Native American Cancer Initiatives, community navigators juggle many responsibilities, but their main focus is on helping those with an unequal burden of cancer. This burden is often heaviest among racial/ethnic minorities, patients with lower socioeconomic status, and residents of rural areas who do not have equal access to healthcare systems and do not always receive timely, standard care when confronted with a cancer diagnosis. She drew upon her own experience with Native American communities and applied this to other underserved populations.
She clarified the distinction between community and nurse navigators but emphasized the importance of collaboration between the two roles. “We don’t give medical advice; we educate patients and help to explain the pros and cons of various situations like clinical trials,” she said. “Our navigators know in cancer, there’s no such thing as a placebo. In every cancer clinical trial you’re comparing a treatment with another treatment that might be better, and we explain that to our patients.”
The Challenges of Coordinating Care
Community navigators often focus on a particular underserved community, eg, a rural area. “When you’re working in a rural community, you’re in a different world,” she said. For example, in an area with no plumbing where community members must walk several miles to get access to fresh water, a patient would struggle to take oral medication. But a community navigator might be able to seek out a donation of bottled water for that patient. “We work very closely with social workers. They’re godsends to community navigators,” she said. “As innovative and creative as a lot of our native patient navigators are, they wouldn’t be able to survive without that partnership and collaboration.”
Treatment compliance can be difficult in underserved communities. “When you’re dealing with someone who is living in poverty, with little to no health insurance and little to no understanding of science, you explain cancer in a different and much more gentle way,” said Dr Burhansstipanov. Community navigators help to decipher the medical jargon often used by providers and use certain methods to check patient understanding. “Don’t say, ‘Did you understand?’” she explained. “Rather, say, ‘When you go home today, how will you explain to your sister what the doctor told you today?’”
The provider’s goals of treatment can differ greatly from the goals of the patient, and the patient’s goals might not have anything to do with treatment at all (eg, preparing food for a ceremony, finishing a quilt). When the navigator takes an interest in actually learning the patient’s goals, it can make a positive impact on that patient’s treatment experience.
“Patients refusing treatment is not unusual in our community,” she noted. “They often do not want to put their family at further risk for poverty.” But if the navigator understands the culture of the patient’s family and community, communication is more productive, and treatment conversations can take place without the patient fearing financial devastation. Although a number of barriers can get in the way of underserved patients keeping their appointments (eg, lack of transportation, weather/road conditions, family/community obligations, lack of childcare), the patient navigator helps the patient and family understand why treatment appointments are important and, if an appointment must be missed, can reschedule to help that patient avoid a “no show” or “noncompliant” label.
Cultural Awareness Is Key
Cultural awareness is vital for successful patient navigation. It takes a year to prepare for the Sun Dance ceremony practiced by some tribes, and treatment scheduling can easily interfere with preparation. “If the navigator doesn’t know the community, it’s easy to misunderstand what they’re going to be doing in that year, so you need someone who can make that translation,” Dr Burhansstipanov said. “Tell them, ‘Maybe this year, someone else in your family can do Sun Dance.’ There’s a little bit of negotiation you can do when you have a community navigator who understands these different processes.”
If a patient must travel for extended treatment during hunting season, the community navigator is charged with working with the patient’s community to determine who will hunt for his family while he’s away. These logistics can be challenging, underlining the need for competent community navigators capable of coordinating care for patients’ families.
Communication styles are different among tribal nations, and community navigators must deal with those communication barriers. Passive communication can be a barrier to care—members of some tribes are far too modest to discuss breast cancer—so they may mislead providers about where they are experiencing symptoms. “There are 217 languages spoken in Indian country, and none have a direct word for cancer,” she said. “Unless you have someone from the patient’s community, it’s hard to help them actually understand what the disease is.”
The Importance of Clinical Trials
Dr Burhansstipanov is an advocate of clinical trials education and referral. “People should be given the opportunity to make an informed choice,” she said. “They may choose to say ‘no,’ but I think that should count for something.”
The community patient navigator can explain the different facets of cancer clinical trials and eligibility criteria. Although clinical trials follow rigorous protocols, variations can sometimes be made to increase the likelihood of inclusion of underserved patients. She gave the example of the prevalence of high blood pressure in Indian country and the barriers that might pose to trial enrollment. “As navigators, we talk with patients, learn the eligibility criteria, and see if we can approach someone in the clinical setting,” she said. “They might let us take part, but code us in a different way. There are opportunities.”
In underserved communities, one of the biggest hurdles to clinical trial enrollment is that providers assume patients will be noncompliant, Dr Burhansstipanov said. But part of what makes patients underserved is that they are uninformed about the availability of trials for which they are eligible. “If we have the chance to have a longer life and a better quality of life, we want to have that option,” she said.