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Embedding Patient Navigation in the Community to Eliminate Barriers to Cancer Care
December 19, 2023
The CASE CCC PARTNERS' team shown above, including patient navigators and care coordinators at a recent event.
The Case Comprehensive Cancer Center (CCC) is one of eight sites funded by the Merck Foundation to develop a national model for improving equity in cancer care delivery. That initiative is the Alliance for Equity in Cancer Care, a five-year program for grantee sites working alongside community organizations to better reach populations disproportionately affected by cancer. The Case CCC team, led by Jennifer Cullen, Ph.D., MPH, is known as PARTNERS (Promoting Access, Resources and Treatment through Novel and Equitable Solutions) for Cancer Care. PARTNERS works with five community-based sites throughout the greater Cleveland area to help patients from marginalized communities.
Their focus population includes racial/ethnic minorities and individuals from a variety of socioeconomic and cultural backgrounds. Such populations often experience disproportionate access to care. In particular, the team is serving patients diagnosed with breast, lung, prostate and colorectal cancers – canceres where the burden of disease and disparities are highest in the community. Social drivers of health (SDOH) are also more prevalent among this population, with many individuals living in areas of high deprivation, experiencing linguistic or cultural barriers that can be burdensome to accessing or receiving care, as well as deep-rooted mistrust in medical providers that many marginalized populations face. PARTNERS’ patient navigators provide insight into their community-based efforts, sharing first hand experience as they ensure patients have a roadmap and the resources needed to stay on track throughout their cancer journey.
Leveraging community partnerships to overcome barriers and build trust
El Centro, a Latino community organization committed to ensuring bi-lingual and bi-cultural equity in Lorain County, is working with PARTNERS to ensure non-English speaking patients receive the same quality of care as others. El Centro navigator Ana Melendez guides Spanish speaking clients through a health care system that primarily provides services in English. Melendez often translates health information into Spanish, and assists patients who are undocumented or uninsured access the services available to them. Melendez even accompanies patients to their appointments since a lack of interpreters and transportation can cause further delays in care.
This concern is shared by the patient navigator supervisor at the University Hospital’s (UH) Accountable Care Organization, Tiffany Smith. Smith’s patients are frequently unaware that services like transportation can be reimbursed by their health insurance. PARTNERS navigator, La’Ressa Thompson, will connect the patient to their insurance carrier and advise them on how to make use of this support.
At Care Alliance, a local Federally Qualified Health Center, navigator Tamika Smith sees a number of patients looking for additional support services, but non-connectivity can hinder this process. Many patients seen at the FQHC are unhoused and can not be reached on the numbers they provide to the system.
Navigators are also working to overcome decades of medical mistrust informed by a history of structural racism that marginalized communities have faced in the past. The role of a navigator often includes helping patients combat those fears and the stigma associated with medical care. Stevenson Ross, an oncology access coordinator at UH Seidman Cancer Center, notes “a big part of my job is to talk patients through their clinical hesitancy by sharing my own clinical experiences with them.” Chesley Cheatham, Director of Community Outreach and Engagement at UH, finds that for Steve – an African American man himself – he has a level of trust that he has built up with the patients he works with, allowing him to break down the barriers related to the fear of the medical establishment. Lucas Velez, program manager for Taussig Community Outreach at the Cleveland Clinic, shares that he finds it more difficult to talk to men about their health because there is a lot more “machismo” related reluctance in men to pay attention to their prostate health – it’s a hard sell. This is especially true with African American/Black men, who are fearful of being used as guinea pigs – a fear well rooted in history.
Prioritizing psychosocial support services for patients and navigators alike
The Gathering Place, with locations in Beachwood and Westlake, offers support services and education to patients and families coping with cancer. Sydney Beeman, the community program manager and PARTNERS patient navigator at the organization handles a wide range of issues patient’s face across the care continuum: from transportation to stigma related to diagnosis, illness and mental health. “No cost support that The Gathering Place provides is instrumental in eliminating these barriers to care,” shared Karen Hatfield, the organization’s chief program officer.
While providing patient access to support services is critical, it's equally as important to recognize the needs of the patient navigators themselves. Patient navigation is a difficult job that attracts a certain kind of personality – a person who just wants to help people. But sometimes, this role can become onerous and affect the mental health of the navigator. The navigators all shared that they find fulfillment in the work they are doing – helping the patients one on one, knowing that if it wasn’t for them the patient would never get connected to the service they needed. What helps them the most is knowing that they aren’t alone; that there is a whole team behind them that supports their work. Thelma Cruz, the director of community health and support services at El Centro, adds “an important job of those overseeing navigators is understanding when they may be overburdened or need to take time off and prioritize caring for themselves.”
Promoting sustainable and scalable community partnerships
As the conversation moves into sustainability, Lucas Velez points out that a sustainable financial model for navigation is critical. He presses that it’s unethical to go into a community, help some people, and leave when the money runs out. Resources to support patient navigation tools are also scarce. Esther Thatcher, nurse scientist at the UH Accountable Care Organization, shares that many navigators use personal note taking mechanisms – but that a system-wide platform for tracking and monitoring navigator efforts isn’t currently in place. This can often lead to data discrepancies and non-uniform reporting of results across partners.
Cullen highlights the recent announcement from CMS that the Medicare Physician Fee Schedule Final Rule will also provide payment for navigation services. Unfortunately, organizations like El Centro are not considered health care facilities, and their patient navigators will still not be revenue-generating positions, leaving it to the organizations to find money themselves. Part of the struggle is to ensure health care system leadership understands and values the role of patient navigation in the community. Tamika Smith works to highlight all the great work navigators do to leadership in her day to day work.
Chesley Cheatham at UH believes that initiatives like the Alliance helps to further this goal – by being a part of a national evidence-based effort resulting in publications with navigators contributing to the literature is the currency that the field needs. CEO of The Gathering Place, Michele Seyranian, shares “being a part of this Alliance has allowed them to expand their commitment to meeting the needs of the underserved by deepening relationships within the health system across the greater Cleveland area.”
At the end of the day, patient navigators, whether they are embedded in the health care system, or a community setting, are an invaluable resource to marginalized people who are already disproportionately impacted by systemic issues in cancer care. Recognition of the value of their contribution is an important first step in the academic effort to eliminate barriers to cancer care for all.
Written by: Jennifer Cullen, PhD, MPH and Rini Ghosh, MPP in partnership with the NPO