Fresno Breast Cancer Navigator Pilot Program

Institution: California State University, Fresno Foundation
Investigator(s): John Capitman, Ph.D. - Mary Wallace,  - John Zweifler, M.D. -
Award Cycle: 2006 (Cycle 12) Grant #: 12AB-1501 Award: $50,400
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-1500 -

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)
Over the past four decades, the proportion of women who participate in mammography screening has increased, but women of color continue to have more advanced stages of breast cancer at diagnosis. Although screening is still important, it is not sufficient to close the racial gap in breast cancer deaths partly because disparities are influenced by differences in completing several steps involved in breast cancer care from abnormal screening through complete diagnosis, treatment and after care. Although use of a breast cancer navigator offers a practical solution, the optimal design of this approach is not known. The purpose of the study is to: 1) assess the need for a Breast Cancer Navigator 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.

We are currently in the program development phase of the project. We have made great progress towards achieving phase-one objectives. We had a successful project launch meeting to introduce the project to community partners. During this meeting, we conducted assessment/consultation with community members who are patient peers (i.e., survivors), CBOs and clinical/research team to identify factors responsible for service gaps. This group provided invaluable feedback regarding the need for the project, desirable characteristics of the navigator and stated a willingness to be a resource for the project. We held several research partner meetings to reach consensus on procedures/methods for phase-one, including IRB procedures for all protocols, chart audit and protocols for the retrospective study and instruments for qualitative interviews. We have developed process monitoring protocol and research instruments as well as translated questionnaires and related tools (e.g. patient brochures, recruitment fliers) into Spanish and Hmong and received IRB approval from all institutions involved. We have recruited navigators and completed phase-one training requirements for them.

We had an almost 6-month delay in getting the IRB approval through four institutions. We learned a lot about the process, especially the level of effort required to culturally adapt the instruments and materials to the target population. Finding a Hmong translator who could both speak and read the language proved to be a big challenge. Most could speak but could not write or read the language. Similarly, finding navigators who were both bilingual/bicultural and trained to take on the retrospective chart review component of the job was challenging. As this collaborative effort involves partners from different disciplines, we have learned to overcome these differences by focusing on what is best for moving the project forward.

The major accomplishment for phase one is that we have built a successful coalition to do the project. We have also completed the development of materials and instruments that will be used in both phases of the project and we have received institutional Human Subject Protection approval from the four institutions involved in this project.

We will continue with phase one activity. The next steps are to conduct the qualitative interviews and the retrospective chart review.

Symposium Abstract (2007)
Introduction: Breast cancer care involves several complicated steps, which contribute to disparities in care and outcome. A Breast Cancer Navigator (BCN) service offers a practical solution to overcome the barriers to receiving adequate and timely care. However, designs that provide maximum benefits are unknown. Evaluating complex systems requires multiple stakeholder inputs and involves several phases. This study assesses the feasibility of a BCN intervention and addresses phase I-II of a four-stage design.

Presentation goals are to share experience on:
Design: This is a process evaluation using a quasi-experiment design; targeting women receiving care at a safety-net hospital who have a suspicious breast lesion or are undergoing treatment. We utilized community participatory research approach and culturally adapted breast cancer navigator model. Phase-I established community and research partnerships, developed culturally relevant materials and recruited program staff and identified service components/barriers. Phase II determined and evaluated components of the BCN program that would provide maximum benefits. Data sources: chart review (n=150), survivor interviews (n=15), patient interview and care audit (n=72), community and provider consultations. Factors Examined: The chart review examined a) completion and b) timing of treatment/diagnosis and c) barriers to completing care. The process evaluation focused on Feasibility of best BCN design in terms of a) clinical, and b) community service needs, c) BCN capacity and d) program acceptability. Furthermore, we examined the role health insurance status and race/ethnicity.

Findings: We found great need for culturally adapted material and community involvement in the breast cancer health care process. Our experience has been overall positive and rewarding. However, we found that developing a culturally relevant material and recruiting culturally appropriate program staff requires tremendous efforts and resources. Furthermore, work involving multiple stake holders in developing and evaluating a complex program required on-going negotiation of roles and compromises. Based on the retrospective chart review and the survivors interviews we expect that women of color will have harder time navigating the health care system and face greater social economic barriers. Moreover, we also anticipate finding that women who are UN/underinsured face harder time navigating the health care system.

Conclusion: There are multiple barriers to receiving timely BC diagnosis/treatment; the best possible BCN service will require enhancement of both clinical and social services.

The need for additional and external resources necessitates evaluation of extent of need and optimal design to facilitate quality of care and return on investment.