Rutgers Cancer Institute of New Jersey's Community Outreach and Engagement Approach to Cancer Prevention

Passed in 1971, the National Cancer Act established a mechanism for the NCI Cancer Centers Program to recognize centers around the United States that meet high standards for transdisciplinary, cutting-edge research focused on developing novel and more effective approaches to cancer prevention, diagnosis, and treatment (1). To achieve this goal, the NCI requires cancer centers to delineate their catchment area (CA), a geographic region where a cancer center focuses its efforts and customizes research, outreach, and community engagement, including cancer prevention efforts. Prevention is a priority within the Rutgers Cancer Institute of New Jersey's mission “to accelerate scientific discovery focused on understanding cancer, innovating cancer treatment, and improving cancer prevention; to provide outstanding, novel, and compassionate patient care; to provide evidence-based and culturally informed education to physicians, nurses, researchers, staff, and the community; and to achieve cancer health equity in our state through outreach to and engagement of our extraordinarily diverse communities.”

While Rutgers Cancer Institute has had some form of community outreach throughout its 30 years of existence, enhanced and harmonized efforts have been underway since 2019 with the establishment of the Cancer Health Equity Center of Excellence (CHECoE). The CHECoE is the mechanism by which we deliver our community outreach and engagement (COE) activities to address CA cancer burden and community needs. The specific aims for COE are to: (i) assess and monitor New Jersey's cancer burden, disparities, and risk factors to identify and prioritize CA needs; (ii) conduct education programs and promote the implementation of policies and evidence-based strategies to reduce CA cancer burden across its diverse populations; and (iii) catalyze impactful research that addresses CA priority cancers, risk factors, and disparities. In this commentary, we focus on our primary (risk reduction) and secondary (screening) cancer prevention efforts in its CA through COE activities. Our approach to cancer prevention leverages community partnerships, engages diverse communities to understand and address their needs, and considers individual, sociocultural, environmental, biologic, system, and policy-level factors and impact.

Rutgers Cancer Institute is committed to highlighting, strengthening, and embracing CHECoE as an integral and leading branch of the Institute's effort to reduce the burden of cancer in the CA. COE serves as a bridge to the community by bringing cancer prevention education and services to individuals and families statewide, with a focus on underserved populations and neighborhoods with worse cancer outcomes. To optimize impact, we leverage community partnerships, including our Community Cancer Action Board (CCAB) and Impact Councils, and bidirectional communication with community members. CHECoE strives to be a national leading center in improving education and training, producing better outcomes across the cancer continuum, improving health care quality and equitable access, and building trust in the community.

Rutgers Cancer Institute is the only NCI-designated Comprehensive Cancer Center in NJ. Ninety seven percent of our patients reside in NJ, and community engagement and outreach efforts span all 21 counties. NJ is the most densely populated state and is among the most urbanized states in the U.S. with nearly 95% of its more than 9.3 million residents living in urban areas (2). NJ is home to a large ethnically diverse population; 23% are foreign-born residents and a large percentage (29%) are racial and/or ethnic minorities or mixed race (15% Black, 11% Asian, 0.7% Native American/Alaskan Native, 2.4% multiracial, 22% Latinx; ref. 2). New Jersians are more educated and have a higher median household income than the national average, but approximately 10% of households are below the national poverty level (2). The Health Resources Services Administration identified medically underserved areas in sections of South Jersey, northwest counties, and major cities (Atlantic City, Camden, Newark, Patterson, and Trenton), which are high-risk areas for poverty, behavioral risk factors, and poor access to care.

NJ ranked 4th in 5-year (2016–2020) invasive cancer incidence nationwide, with prostate, breast, and colorectal cancer incidence rates in NJ being significantly higher than the U.S. average (3). Geographic disparities in cancer incidence and mortality in southern NJ counties are evident (Fig. 1). Higher cancer mortality in these southern areas is attributable to deaths from colorectal, lung, breast, cervical, and prostate cancer. Southern NJ counties, including Cumberland, Atlantic, Salem, and Camden, not only rank highest in the Area Deprivation Index, which accounts for area-based education, employment, occupation, income, housing characteristics, and poverty levels, but also have lower cancer screening and higher prevalence of obesity and smoking (4).

NJ also has appreciable racial and ethnic cancer disparities, with Black persons experiencing the largest burden in incidence and mortality. Compared with all other race and ethnic groups in NJ, Black men have the highest incidence rates of prostate and colorectal cancer and the highest prostate, lung, and colorectal cancer mortality. Black women have the highest incidence rates of cervical and colorectal cancer and the highest breast and colorectal cancer mortality (3).

Use of primary cancer prevention services for human papillomavirus (HPV)-related cancers remains a challenge in Metropolitan Statistical Areas (MSAs) with principal cities, including Newark, New Brunswick, Jersey City, Trenton/Princeton, Camden, Ocean City, and Atlantic City; HPV-vaccination rates in these areas fall well below the State's goal (53.5% vs. 80%; ref. 5). MSAs without principal cities are even lower, at just 45.7%. CINJ analysis of claims data has found that Medicaid recipients have lower screening rates compared with those who have other types of health insurance, with significant racial and ethnic disparities and geographic variation (6).

Understanding the CA was essential for establishing specific criteria to prioritize CINJ's cancer prevention and COE activities. Prioritization criteria are delineated in Table 1. Six CA priorities for focused research and outreach efforts were identified through strategic planning guided by national, state, and county level cancer statistical data, community needs assessments and surveys, with input from our CCAB and in collaboration with NJ Department of Health, Rutgers Cancer Institute leadership, and other partners. The six CA priorities – breast, colorectal, lung, prostate, melanoma, and HPV-related cancers – have a high burden in NJ, have notable disparities, or are related to key risk factors that are potential targets for cancer prevention such as social determinants of health (e.g., race, ethnicity, geographic “hotspots”, access, and health literacy), HPV infection, obesity/metabolic dysregulation, tobacco use, environmental exposures, and hereditary risk.

CINJ believes that reducing the cancer burden in NJ requires that data are made available to and can be easily accessed by community partners and researchers. CHECoE launched the Surveillance, Tracking, Reporting, through Informed Data collection and Engagement (STRIDE) Dashboard, a web-based, interactive data and visualization tool designed to provide critical, relevant, and timely information (7). It allows immediate access to current data including clinical trials enrollment, health system bio-specimen inventory and tumor registry analytic cases, and CA information related to cancer burden, behavioral and environmental risk factors, and social determinants of health. Web access includes a password-protected portal for researchers and Rutgers Cancer Institute staff, and a community facing page with publicly available data. For example, in response to community partner needs, CHECoE disseminated an interactive map of facilities designated by the American College of Radiology as providing low-dose CT (LDCT) services for lung cancer screening. This type of resource will be expanded to include other types of cancer screening facilities. STRIDE also has data that aid in dissemination of research findings likely to have an impact on cancer outcomes, including prevention. For example, population density maps in STRIDE are being used by researchers who disseminate key culturally relevant breast cancer screening findings to the Asian community in NJ. These maps show a high concentration of Asian populations in central and northern regions, and therefore dissemination efforts and community outreach are directed to those areas. Environmental factors are included on the dashboard. STRIDE enabled Rutgers Cancer Institute researchers to better understand and address the catchment burden for an ongoing study of the effects of small particulate matter (PM2.5) in NJ coastal and ground water samples on cancer incidence. Enhancing the data (e.g., claims, transportation data) and increasing utilization of STRIDE is one of our major strategic objectives.

The CHECoE outreach team leverages community partnerships and disseminates and implements evidence-based guidelines and interventions to ensure high-quality cancer prevention care and improve cancer outcomes across the cancer continuum. The CHECoE has rapidly expanded statewide partnerships from just 20 organizations in 2018 to 357 healthcare and community partners (with 522 partner sites) across NJ (Fig. 1).

CHECoE utilizes a knowledge sharing strategy that leverages Project ECHO (Extension for Community Healthcare Outcomes) (8), a model that has been a critical driver of population health throughout the world. CINJ is an ECHO Hub that interdigitates with CHECoE's Community Cancer Action Resource Education Series (CARES, a professional development and Train the Trainer program) and Community Grant programs. Participants of our ECHO series take cancer prevention information and implementation strategies to their communities and peers. We have implemented four ECHO projects: (i) NOYOLLO ECHO, the first Spanish language cancer prevention/screening ECHO; (ii) the North Health Collaborative ECHO that engages caregivers of people with intellectual/physical disabilities to promote cancer prevention; (iii) NJCEED (CDC-funded Cancer Education and Early-Detection Program) to improve knowledge and practice around cancer prevention and navigation; and (iv) ScreenNJ Partner ECHO that connects lay and credentialed program staff and clinicians from community partners statewide to improve knowledge and provide technical support to maximize resources and overcome barriers. Tele-mentoring ECHOs include didactic sessions and peer-to-peer dialogue about community needs and evidence-based cancer prevention strategies.

We utilize a logic model to provide conceptual guidance and a high-level strategic roadmap, to generate key inputs, activities, and impact with actual and desired short, intermediate, and long-term outcomes, and to share our ideas and process with others. The logic model is an effective tool for planning, implementation, management, evaluation, and reporting. We use detailed actionable work plans that actualize our strategies and activities with specific metrics, SMART goals, and key performance indicators (KPI). These data points are tracked by CHECoE's management and data teams by utilizing internal systems as well as strategic planning software (Envisio) to collect, track, and report. Periodically, we review our Logic Model with input from our CCAB, CHECoE team, COE Program Liaisons, and other Rutgers Cancer Institute Leadership and members.

CHECoE utilizes multi-level and multi-component outreach and prevention strategies focused on CA priority cancers and risk factors in collaboration with various community partners including food banks/pantries, libraries, faith-based organizations, health systems, and community health clinics (e.g., federally qualified health centers), family success centers, and myriad other partners. These partnerships are essential for building trust in the community, fostering strong relationships with community leaders and members, and reaching out to individuals who would not otherwise be aware of and access cancer prevention services. The CHECoE vigorously engages communities across NJ through strategic and tailored cancer prevention outreach activities in the populations and geographic areas in most need of services, addressing social determinants (e.g., transportation, costs, medical distrust, language barriers, and poor health literacy) and other barriers. ScreenNJ has a particular emphasis on federally qualified health centers and other resource-constrained settings and underserved populations, including minorities, the uninsured, and the poor. Initially focused on colorectal and lung cancer, Rutgers Cancer Institute health policy efforts led to the expansion of the ScreenNJ program, which now focuses on all CA priority cancers and risk factors. ScreenNJ is supported by a $4M annual state appropriation to Rutgers Cancer Institute and administered by CHECoE. It enhances access to cancer prevention information and services (e.g., tobacco treatment, HPV vaccination and screening) to help patients overcome barriers and obtain cancer prevention services. ScreenNJ partners with and supports healthcare provider agencies, public health agencies, and community organizations that provide education, refer patients, and provide cancer prevention services. Guided by the Exploration, Preparation, Implementation and Sustainment (EPIS) Framework (9), ScreenNJ exemplifies our commitment to CA needs by promoting and expanding evidence-based cancer prevention via directly addressing individual, interpersonal, and system-level barriers that prevent people from receiving recommended cancer prevention services.

ScreenNJ has statewide reach and forges and sustains partners, employing a mix of strategies for neighborhoods and larger geographic areas on the basis of their unique needs. CHECoE community patient navigators are embedded within designated partner sites (Fig. 1) through site-specific MOUs. Screening and prevention tactics are tailored for each partner and community, including healthcare delivery agencies and organizations to support outreach, referrals, and care delivery. For example, CHECoE in partnership with a large healthcare system in South Jersey showed a 315% increase in LDCTs from 2018 to 2022.

CHECoE also provides community-oriented nutrition and physical activity education in English and Spanish. For example, in partnership with LIVESTRONG, 1,038 cancer survivors were provided with education and skill-building cooking demonstrations. ScreenNJ trained 135 providers across NJ as certified tobacco treatment specialists in partnership with Rutgers Tobacco Dependence Program (TDP). ScreenNJ and TDP integrated referrals to NJ Quitline, 12 Quit Centers across NJ, 180+ LDCT screening sites, and numerous other tobacco treatment programs in NJ.

Rutgers Cancer Institute recently launched the “LifeSaver”, a state-of-the-art mobile health unit that brings education and prevention services to NJ communities with a particular focus on the uninsured and underserved. LifeSaver offers services aligned with our CA priorities focused on prostate, lung, colorectal, breast, HPV/cervical, skin, and genetic hereditary cancer counseling. LifeSaver has two patient rooms, and a clinician team takes health histories and provides physical examinations, laboratory testing (e.g., HPV, prostate specific antigen, colorectal FIT testing), referrals for mammograms and LDCTs, patient navigation for care coordination, and education and outreach including supportive services to address social determinants of health. LifeSaver is a mobile beacon of our steadfast commitment to breaking down barriers and improving cancer prevention and care delivery in the CA.

Our comprehensive approach is exemplified by robust bidirectional community engagement and CHECoE's diverse, committed, and talented team. The team works closely with our passionate and dedicated CCAB members who represent the diverse communities we serve. The CCAB provides guidance to help ensure that Rutgers Cancer Institute is responsive to the CA through outreach and engagement, research, and policy, and assesses and informs us of community needs and is instrumental in identifying and prioritizing CA needs. Often the CCAB acts as an additional arm of communication between the Institute and external partners as well as helping us build new relationships and trust. They have provided guidance on research and community grant applications, strategic plans, the logic model and evaluation of our impact, clinical trial recruitment strategies and outreach programming.

CCAB members also help lead Impact Councils to address the needs of specific communities. These impact councils include Black Health, Prevention and Screening, LGBTQ+, Latinx, Environmental Justice, Media and Arts, Community Scientist and Clinical Trials. The Impact Councils demonstrate targeted community partnership and engagement and explore specific aspects of society that may not get the dedicated attention needed during a larger high-level committee meeting. They help us hone our knowledge and approach on the community level to improve cancer prevention techniques and tactics.

CHECoE efforts have contributed to improvements in cancer risk reduction behaviors and cancer screening rates in our CA. For example, over the past five years we have: (i held 3,377 outreach events for patients and the public reaching +87,000 people; (ii) provided 817 outreach educational sessions for 19,397 clinical and public health practitioners; (iii) provided tobacco counseling sessions for 21,500 people; and (iv) provided or navigated people to over 60,000 cancer screenings, detecting over 2,000 cancers or premalignant lesions. Rutgers Cancer Institute has helped advance cancer prevention policy, including the passage of a law (A-3523/S-2305) that expands access to colorectal cancer screening by requiring health insurers to cover colorectal cancer screenings recommended by the United States Preventive Services Task Force and eliminate cost-sharing for required follow-up colonoscopies with the goal of improving screening rates across the state.

At the population level, lung cancer screening rate among eligible New Jerseyans was 4% in 2018 while the current rate is 15%. The prevalence of smoking decreased from 14% in 2018 to 10.8% in 2021 (3). HPV vaccinations among 13 to 17-year-old adolescents increased from 48.5% in 2018 to 54.8% in 2021 (3). HPV vaccination and screening outreach included educational events for community members and healthcare/public health practitioners. The statewide colorectal cancer screening rate rose from 67.6% in 2018 to 71.9% in 2020 (most up-to-date rate), with reductions in racial and ethnic disparities (10). Recent data also suggest decreases in the incidence of CA priority cancers including invasive cervical, colorectal, lung, and melanoma alongside reductions in late-stage diagnoses of breast cancer and melanoma. Efforts to reduce risk and improve prevention behaviors such as smoking show promising signs exceeding NJ benchmark [11% (2020) vs. 12% (Healthy NJ 2030 Target); ref. 10]. A challenge with evaluation of statewide impact is that available population-level data are usually 2 to 3 years behind.

The NCI's directive that cancer centers serve the needs of their CA and engage with their CA communities through outreach and research with a focus on health disparities has been revolutionary for Rutgers Cancer Institute. Enabled by CHECoE, this is now ingrained in our researchers’ and staff members’ daily activities. By adopting and leveraging a health equity approach, we have made substantial progress in pursuit of our goal of identifying and addressing the CA cancer burden, including dissemination of evidence-based cancer prevention actions. Improvements in cancer knowledge, cancer prevention behaviors, use of prevention services and available population data are promising signals of sustained impact. We will continue to leverage our communities and partnerships, improve trust, and build strong, lasting relationships to further strengthen our cancer prevention efforts in the quest to improve cancer prevention and reduce the burden of cancer in our catchment area. Over the next several years, we hope to see further improvements in cancer risk reduction behaviors, screening, incidence, mortality, downward shift in stage of disease at diagnosis, health equity, and advances in health policy.

A.Y. Kinney reports grants from Rutgers Cancer Institute of New Jersey, grants from National Cancer Institute, and other support from NJ Department of Health during the conduct of the study. S.K. Libutti reports grants from National Cancer Institute and other support from NJ Department of Health during the conduct of the study. No disclosures were reported by the other authors.

This work was supported by the Rutgers Cancer Institute of New Jersey Cancer Center Support Grant from the NCI [NIH/NCI, 3P30CA072720] and the New Jersey State Cancer Registry, Cancer Epidemiology Services, New Jersey Department of Health, the NCI's Surveillance, Epidemiology and End Results (SEER) Program (#75N91021D00009), Centers for Disease Control and Prevention's National Program of Cancer Registries (#5NU58DP006279) with additional support from the State of New Jersey and the Rutgers Cancer Institute of New Jersey and the New Jersey Department of Health. We would like to thank the following individuals for their contributions: Community Cancer Action Board members and chair Dorothy Reed, Daniel Pearson, Emily Carey Perez de Alejo, Michele Fisher, and Dr. Yantao Zuo.