In underserved communities, specific barriers to care contribute to patients receiving diagnoses of late-stage cancer. Through community engagement, team members who represent cancer community outreach have joined forces with community partners to help residents to access health care.
Kimberly Bell, RN, MBA, executive director of Cancer Services for Cleveland Clinic, discussed the Cleveland Clinic Cancer Community Outreach Operating Model, which is designed to educate communities and individuals on cancer prevention and ways to avoid late-stage cancer diagnosis. There is urgency around cancer prevention due to the high rates of late-stage diagnosis within our northeast Ohio communities. “Late-stage disease translates into [higher] cancer mortality rates,” she explained. According to Bell, northeast Ohio has high rates of late stage disease–diagnoses.1
Bell and her team help local residents overcome barriers to accessing health care, including transportation, fear, finances, social support, and lack of education around cancer prevention and treatment. That said, the most important and difficult barrier to manage is the lack of trust in the health care system. Bell noted that residents within the communities she served were less likely to engage if the barriers remained unresolved, which is why she turned to the Freeman model of patient navigation.
“It really resembled the cancer continuum of care,” Bell said. The model starts with engaging the community members and shepherding them through education, screening, and, if needed, follow-up care. It employs people from the community who understand the public needs and barriers as the lay navigators for the program.Navigators and program managers partner with community leaders and federally qualified health centers (FQHCs) to identify patients and specific communities in need of these cancer screenings and education. Bell’s team identifies their community needs through population health data: cancer incidence rates, mortality rates, late-state disease diagnosis, social determinates of health indicators, and Cleveland Clinic hospital community health assessments. These data are then narrowed by specific zip codes to define where to target programs and other resources.
Other important factors to sustain this program are data collection and the ability to house these data in a unique cancer navigation database. Information is collected throughout the process, like electronic medical records, pathology laboratory results, registrar data, and patient navigator notes, which are funneled into a database. “You have to have a database for multiple reasons,” Bell stated. “[You have] to show the impact on the community and of your work, to drive efficiencies within the programs [as well as] to demonstrate to your organization that this is an effective program.” The data are used to generate reports highlighting the program’s successes, such as the number of referrals received from partners, the quantity of screenings completed, and the ability to keep patient financial responsibility low.
To allow the team to track patient journeys, results are broken down into granular details, like the number of days between a screening and diagnostic examination, between a diagnostic examination and diagnosis, and between diagnosis and the start of treatment. According to Bell, the rate of screenings that are completed after being scheduled is approximately 95%. “That’s unheard of, even in our organization, for traditional patients,” she said. Increasing the number of patients who get colonoscopies also has been a triumph, Bell added.
Bell acknowledged that work remains, such as increasing the number of screenings completed after referrals. “When [we] look at those data, we’ve got to [ask], ‘What are the barriers that we might not be finding?’ It might be that those people…already had their screening. It might be lost to follow-up, but [those are] the data we need to look into to make sure that we’re not missing something as we’re navigating these patients,” she said.
Improving the rates and outcomes of health screenings and reducing disparities within the community are the direct results of synergy among the health care system, community partners, and patients themselves. Kimberly Sanders, MPA, director of Community Outreach and Patient Navigation for the Cleveland Clinic Taussig Cancer Institute, discussed the fundamentals of the health system’s strategic engagement with community partners. What engagement is not, she said, is going “out to tell [patients], ‘This is what we want to do.’” Instead, she continued, “We find out what they want to do, what we want to do, and what we can do together to solve the problem.”
Residents appreciate the shared decision-making and advocacy on their behalf, Sanders said, and they understand how deeply invested the health care team is. “It’s very important to us that we become a part of the community, not just stopping by to get some numbers and then walking away, but [fostering] a relationship,” she explained.
Those relationships are possible with the help of partners in the government, advocacy, and private sectors. A variety of resources such as FQHCs, faith-based groups, government and nonprofit organizations, large employers, small businesses, and homeless shelters provide patient referrals as well as crucial funding that goes toward screenings and transportation for people who are uninsured or underinsured. Joining in those efforts are philanthropic partners, pharmaceutical companies, managed care plans, and other health care payers.
Six years ago, a consortium was created. The consortium is a model of engagement, in which multiple entities participate, including churches, insurance plans, corporations, FQHCs, advocacy groups, and other health care systems. It is a conduit for educating and collaborating with each other to improve cancer outcomes within underserved communities. The members serve as advocates, thought partners, program developers, and advisors to achieve a common goal. It allows for greater engagement with community stakeholders and enables more people to be educated on cancer prevention. “It’s an excellent opportunity to get so many different people together from different organizations, [which then] brings together so many different ideas,” Sanders said.
An open flow of information also allows consortium partners to tailor their efforts to individual communities. Some people in underserved areas lack access to technology, which hinders their ability to stay informed. In these instances, according to Sanders, a community partnership might mean teaching people how to make the best use of their cell phones, video conferencing, or email accounts.For example, Hewlett-Packard’s HP Foundation sponsors training for residents to learn how to utilize their electronic devices, and it plans to provide computers for community use.
The generosity shown by community partners pays dividends, stressed Sanders. Cleveland Clinic’s alliance with Sherwin-Williams, a large employer in the region, enables employees to get cancer screenings in a timely manner, she said, resulting in a healthier, more productive workforce and a reduction of health care costs overall. “We are very fortunate that [with our collaborations] we have had a lot of successes, which [include increase in] screenings, decrease in cancer incidence, and decrease in late-stage cancer detection,” Sanders said.
Looking ahead, Sanders anticipates more partnerships with corporations to help identify community members who could benefit from earlier cancer screenings. She also discussed the rollout of a pilot research project to educate people on the importance of clinical trials and the benefits of participating. Focus groups have already been set up, and surveys have been sent out; the group’s goal is to increase engagement with its faith-based partners. “These conversations will include more robust dialogue around innovative strategies that encourage these marginalized groups to participate in research,” Sanders said.
Once a partnership is created, Sanders noted that it is important to keep it going past the initial bursts of activity. “It’s so important when we build those relationships [with community partners] that [we] maintain those relationships, working together to deploy multiple modalities to reach the community,” she recalled.
Cancer incidence data (1996-2019). Ohio Department of Health. Updated January 25, 2023. Accessed March 1, 2023. https://publicapps.odh.ohio.gov/EDW/DataBrowser/Browse/StateLayoutLockdownCancers
KIMBERLY BELL, RN, MBA
Executive Director of Cancer Services
Cleveland Clinic Health System
KIMBERLY SANDERS, MPA
Director of Community Outreach and Patient Navigation
Cleveland Clinic Taussig Cancer Institute