- Indigenous Peoples and Oncology Care
- Navigating Global Patients
- The Changing Landscape of Oncology Navigation
- Implementing a Transportation Hub
- Breakout Sessions
Indigenous Peoples and Oncology Care
“Native Americans live in every state in the US—and constitute a hidden population,” said Linda Burhansstipanov, MSPH, DrPH, Native American Cancer Initiatives. Today, there are several hundred recognized indigenous tribes, but many lack the public health infrastructure and the ability to provide oncology care. This is despite the high cancer rates in Alaska and in the Northern and Southern Plains. In fact, American Indians and Alaska Natives (AIANs) experience the poorest survival of any US racial/ethnic group. Cancer is the second leading cause of death in those over the age of 45 in all AIAN populations and the leading cause of death for AIAN women over age 45. While there has been progress in reducing cancer deaths among non-Hispanic whites, the same has not occurred in Native American and Alaskan populations. Dr Burhansstipanov also shared insights gleaned from public health and navigation programs that compared indigenous peoples in different parts of the world, for example, among the Australian aboriginal population. Researchers found similarities among indigenous peoples on other continents and found that similar barriers to care exist.
Dr Burhansstipanov noted that more than 61% of cancers are not easily screenable, which results in cancers being found in later stages. Late-stage diagnoses contribute to poorer survival rates with a higher probability of death within 5 years. Thus, a significant problem to be addressed is the provision of cancer-screening programs for AIAN peoples that go beyond breast, cervix, colon, and lung cancer. In addition to late-stage diagnoses, AIAN peoples often have comorbidities and face social challenges. She also said that little is known about certain cancers among AIAN peoples, including childhood and AYA, and AIAN children have much higher rates of cancer deaths.
Culturally aware navigators are a significant link to intervening and removing barriers to care, as navigators clarify, educate, and liaise with patients and other stakeholders. Indigenous communities have unique cultural and geographic challenges—and solutions—and navigators must work within those parameters. At the same time, indigenous peoples also share some cultural practices and beliefs. Exchanging stories, experiences, and solutions with other patient navigators, some of whom may work in another region, leads practitioners to try something new or modify their approach. Navigators often work in isolation, however. One way in which patient navigators can create community is through the AONN+ Indigenous Peoples Navigation Network (IPNN), a virtual “Local” Navigator Network (LNN) for navigators working among global indigenous peoples. This LNN provides a virtual support program to address culturally and geographically specific challenges and solutions. The focus of IPNN is on sharing stories of how navigation programs have overcome challenges in culturally respectful ways.
Navigating Global Patients
Elizabeth Paucar Harris, MBA, is the Founder and Chief Executive Officer of HOPE (Helping Our Patients Everywhere), a private and for-profit company based in Miami, Florida. HOPE offers concierge and navigation services to both local and international patients. In this session, Ms Harris described some of the issues involved when navigating global/international patients through the US healthcare system.
International patients include those who might have traveled to the United States specifically to access medical services and treatment(s). In some cases, patients arrive here quite ill, and their local medical team referred them to the United States after they had exhausted all that was available to them. Others are vacationing from abroad and find that they need medical care, or they might be here for work or school. According to the Medical Tourism Association, as of 2017, 400,000 patients traveled to the United States for medical care. Many of these patients are affluent or they arrive with financial support from their government, family, friends, fundraising, and other support organizations or NGOs. Some patients may be undocumented and need guidance in addition to medical care. Most of the patients who turn to HOPE are seeking oncology care and have arrived from South America, Central America, Caribbean, Mexico, and Canada.
According to Ms Harris, while the US healthcare industry offers excellent care that may not be available elsewhere, it also has a number of problems, including rising costs, insufficient insurance coverage for patients, disparity of service, slow response times to cases, and overworked staff. All of these present special challenges to patients from outside of the United States, and her organization exists to remove many of the barriers to care that patients experience.
The Changing Landscape of Oncology Navigation
The evolution of oncology navigation was the focus of this panel presented by Ms Gentry. She outlined the profession from its earliest days and ended with a list of issues to contemplate for the future. A historical timeline and a recap of some of the significant and foundational events in the shaping of the profession provided a comprehensive overview of where the professional has been and how it might continue to grow in response to changes in the delivery of healthcare.
As Ms Gentry explained, the first navigation practitioners were patient navigators, and their goal was to help mitigate the social disparities in oncology care by removing some barriers those patients faced. These early interventions led to increases in patient survival and the value of navigation became evident. Increasingly, healthcare providers began to use navigators. This increased demand spurred the development of the professional nurse navigator in addition to patient navigators.
Nurse navigators facilitated the movement to the outpatient setting and also led to the development of the widely employed multidisciplinary team approach that focuses on patient needs in the healthcare system. Pioneers such as Lillie Shockney were instrumental in the professionalization of the field and helped to change the disciplinary emphasis—especially among patients with breast cancer—from access to care to survivorship.
The next section looked at the shift to value-based care and the ways in which the profession responded to the changing healthcare provision landscape. Value-based care, driven by the “triple aim” of improving the patient experience of care, improving the health of populations, and reducing the per capita costs of medical care, focused on national standards of care. These now propel cancer programs to be accountable and to measure the quality-of-care delivery and its cost. Ms Gentry also discussed the more recent profession-defining measures such as the creation of the certification process, and the establishment of navigation and patient acuity metrics.
Finally, Ms Gentry raised a number of topics she believes that navigators and the profession will grapple with in the days to come. Among these are responding to the needs of at-risk communities, the qualifications required for navigation professionals, and evaluating the efficacy and cost-effectiveness of navigators and their role in improving cancer care.
Implementing a Transportation Hub
Rachel Marquez, MPH, Regional Operations Leader, Galileo Health, opened her session by asking the “20-trillion-dollar question.” That is—how is good health produced? As she explained, the World Health Organization defines social determinants of health as “the conditions in which people are born, grow, live, work, and age, including the health system.” A further analysis reveals that equity in health outcomes is partially dependent on the societal structural drivers, and that includes the access patients have to things such as transportation. In short, Ms Marquez argued that access to transportation is a significant determinant of health in the same way as age, work, educational attainment, and other social and economic conditions.
In surveys, 10% to 51% of patients said that transportation was a barrier to receiving healthcare, although access to transportation is often overlooked or underestimated as a factor in health outcomes. This affects people in all regions of the country. Rural areas often lack public transportation, and private services may be limited or cost-prohibitive. In areas where there is public transportation, patients may be too ill to use it, or it may be too expensive or inconvenient. Access to transportation is also a matter of health disparity or inequity. Studies have found that almost 3.6 million Americans lack access to non-emergency medical transportation. African Americans are 3 times less likely than whites to have a vehicle at home, and people of color generally are more likely to be without a car. This lack of access has serious repercussions for health outcomes.
Transportation barriers lead to missed appointments, delayed care, and missed or delayed medication use. Research indicates that there is a correlation between patients with the highest burden of disease and those with transportation barriers. On the other hand, when patients have access to transportation, better outcomes are the result. This is because they are more likely to receive timely care based on clinical guidelines with the appropriate medication and management of complications and comorbidities. Optimal care depends on patients being able to keep their appointments with clinicians and receiving appropriate treatments and medications; thus, transportation is crucial.
Ms Marquez presented a case study from her experience at her place of employment. She explained the ways in which she set out to determine the importance of transportation to community health, using such resources as the CDC Transportation Health Impact Assessment Toolkit. She also described the patient questionnaires she used for assessing the need for transportation within her healthcare community and outlined some of the barriers she encountered and explained how these were ultimately removed. Issues that she discussed included liability insurance, legal compliance, taxation, and other details that she needed to address before the successful program was fully operational. Sources and references were also provided, as well as suggestions for implementing a similar program utilizing available resources.
- New to Navigation
- The HopeMore Spa
One of the things our members value most about the conference is the chance to connect with other colleagues and to catch up with friends. During breakouts, chats, meals, and other venues, navigators had ample time to share and be social. And, as always, there were plenty of networking and educational activities—from the informational-sponsored lunch and dinner sessions to the exhibit hall packed with the products and services that navigators need—there was always something happening!