Fresno Breast Cancer Navigator Pilot Program

Institution: San Joaquin Valley Health Consortium
Investigator(s): Mary Wallace,  - John Zweifler, M.D. - John Capitman, Ph.D. -
Award Cycle: 2006 (Cycle 12) Grant #: 12AB-1500 Award: $138,500
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 12AB-1501 -

Initial Award Abstract (2006)
Introduction to the research topics: National and California studies show continuing disparities in breast cancer care and outcomes by race/ethnicity and insurance status. We believe these patterns are also replicated in the Central Valley, particularly among women who receive care from safety-net providers. Breast cancer care is a complex, multi-stepped process with many opportunities to fail to provide care that meets national quality guidelines. Failure to provide complete care is known to be the primary cause of racial/ethnic and insurance disparities in survival. These failures may arise because of characteristics of the health care system, community resources, practitioners, or patients. Our project builds on the navigator model where paraprofessionals, such as community health workers, offer culturally-tailored assistance to women throughout the diagnosis and treatment process to reduce the unequal burden of breast cancer.

Central hypotheses of the research: We propose an 18-month research pilot project in Fresno County to identify barriers to complete breast cancer care and design a navigation service that responds to our diverse community and health system. The pilot will prepare for a larger project that tests health and cost impacts of the service. The project site is University Medical Center, one of four acute care hospitals of Community Medical Centers, the region’s largest provider of health services in Central California. The pilot study will identify the points in the process where disparities in care occur. Where does the process of completing a cancer care program break down for women of color and those without adequate insurance? How can navigators best assist women in completing their care? What new community resources are needed to improve the quality of care? Can the cost-effectiveness of this service be tested?

General methodology: First, medical records will be reviewed for a sample of patients who were determined to have abnormal screening findings. Individual cancer survivors, community organizations, and health practitioners will combine this information and personal experiences to identify barriers to complete care and ways to overcome them by adapting navigator programs from other settings to the Central Valley. Second, we will mount a pilot navigator program to explore its feasibility and acceptability to patients and providers. The pilot program will provide culturally-tailored help to patients in completing cancer care and help us identify other changes in the health system and new community resources that could improve the quality of breast cancer care.

Innovative elements of the project: The project will model a community-participatory approach to adapting breast cancer navigation to the uniquely multicultural and tightly constrained health systems that characterize California and other locales. A unique aspect of this navigator model program is the use of a controlled experimental approach to interpret the results. The project brings together an unprecedented partnership with nationally recognized expertise: Central Valley Health Policy Institute - under the leadership of breast cancer and medical care inequalities researchers, San Joaquin Valley Health Consortium – the region’s leading health program administrator and expert on innovative academic/ community partnerships, and University Medical Center – the primary breast cancer care provider for low-income women in the region.

Community involvement: The project was first envisioned by staff of the participating community-based organizations and the safety-net provider. This community group formed a sixteen-member Steering Committee to guide the project and to formalize further community outreach. The project Concept Paper became the topic of a community-wide discussion at the Central Valley Health Policy Conference in December, 2005. Additional community-based organizations have committed to serve as project partners, informing and participating in all program decisions, and ensuring advocacy awareness and involvement in the effort. These organizations have identified breast cancer survivors who belong to the target racial/ethnic and insurance status groups and who will become lay partners in all decision-making for the project. They will share their own experiences with other project partners through individual and group consultations throughout the project.

Final Report (2008)
Many women face challenges in completing breast cancer care. The complex health care system, involving seeing many doctors and multiple treatments, contributes to disparities in breast cancer care and survival. Although the use of Breast Cancer Navigators offers a practical solution to improving care for underserved women, the optimal design of this approach is not known. The purpose of the study was to 1) assess the need for a Breast Cancer Navigator (BCN) intervention model to address racial/ethnic and insurance-related disparities in breast cancer care at a Fresno safety-net hospital, 2) design and pilot test a Breast Cancer Navigator service responsive to the health system and community context, 3) evaluate the feasibility and acceptability of the evidence-based navigation service using a formative evaluation approach, and 4) build a collaboration network to support a full demonstration of the breast cancer navigation service.

The project was conducted in two phases. Phase one focused on 1) determining the length and rates of completion of all steps in the breast care process and 2) identifying points of service breakdown and determining if insurance or race were related to service breakdown. Phase one activities included a) developing materials and research instruments, b) conducting a retrospective chart review of clinical records, c) conducting survivor interviews, and d) doing community and provider consultations on the need and acceptability of the BCN program and reaching a consensus on the phase two design. Phase two focused on 1) understanding the resource needs for reducing any service disparities in breast care and 2) determining the best way the BCN could help. Activities for phase two included a) hiring of BCNs, b) training of BCNs, c) testing the BCN intervention model, and d) conducting patient exit satisfaction interviews. The Breast Cancer Navigator role included eligibility screening and the enrolling and tracking of patients. We were able to accomplish all aims and objectives. We encountered a number of challenges: finding BCNs with technical and community-relevant skills, getting four Institutional Review Board (IRB) approvals from four institutions, translating materials to Hmong and responding to the diversity of Fresno's population (especially within Southeast Asian groups), identifying the most efficient ways to track elements of care and external referrals, and achieving a consensus on the most effective mix of new interventions (BCN roles, system changes, new community supports). We responded to challenges in several ways. We simplified the IRB requirements from four to three, simplified chart review to focus on pinning down timing and completion of care, used bilingual interviewers to do Hmong interviews instead of translating instruments, and identified the need for the program to have additional patient-peer support to help navigators meet cultural diversity challenges. The major accomplishments include completing the tasks that we said we would do, developing approaches to include community input, and building a successful coalition to do the project. Our pilot was able to establish consensus from patients, providers and community partners of the need, feasibility and acceptability of a BCN program at University Medical Center. The proportion of missed appointments in surgery and oncology clinics and the difficulties with information flow suggested the need for navigator services in these sites. We have submitted a grant to do a three-year comparative study of the effectiveness of the Breast Cancer Navigator Model. If funded, the study will help us to better understand the differences in timing and completion of care between patients that receive care at the study site, Fresno's safety-net hospital, and those that receive care at a private hospital within the same Community Medical Center system.