Community Engagement in the Research Process: Fresno Breast Cancer Navigator Pilot Program
Natalie Collins, M.S.W.,
Community
Initiatives Program
Meaningful community involvement in
research is a challenging but essential
component of the CBCRP Community
Research Collaboration (CRC) awards.
The Fresno Breast Cancer Navigator
Pilot Program realizes the importance
of engaging community members at
various stages in the research process,
from the initial research idea to
disseminating preliminary results and
determining future research directions.
This team consisting of Central Valley Health Policy Institute, University of California, San Francisco, and the San Joaquin Valley Health Consortium received CBCRP CRC pilot funding in 2006 for an award totaling $150,000 spanning an 18-month time period. This was the first CRC project funded in the greater Fresno area and addressed the need and feasibility of a breast cancer navigator program at a large safety-net hospital. The project set out to determine the length and completion rates of various steps in the breast care process; identify points of service breakdown; understand resource needs to reduce service disparities in breast care; and determine the role for breast cancer navigators.
The project involved the community from the beginning, first by fostering relationships with community based organizations. The team announced their intent to apply for a CRC award to various organizations via email and mailings. They also developed a steering committee to engage the community in the proposed navigator program, which included having the community weigh in on barriers to treatment, the role of navigators, and community resources. After receiving funding, the program had a formal launch event that included nearly 50 participants from diverse groups offering individual and organizational support for the project.
On October 2007 the team held a community forum to report initial results and solicit ideas and feedback from various stakeholders. The forum was preceded by a press conference highlighting the navigator program. The conference panel included diverse voices integral to the research process, including community and research investigators, a breast cancer survivor, and CBCRP staff members.
The community forum attracted nearly 200 various community members who engaged in a solution focused discussion about what the initial results might mean and where future research goals should be directed. Participants were asked four questions to be discussed at their tables:
- Given the preliminary findings, does the use of navigators in improving cancer care make sense?
- What do you see as barriers? What gets in the way of women completing breast cancer care? What services and resources are helping women complete breast cancer care?
- Given the barriers identified in the preliminary findings: (a) What are the potential sources for community support? (b) What organizations might play a role? (c) What resources can your organization offer?
- Given the preliminary findings, what should a breast cancer navigator be able to do?
Small groups including medical providers, breast cancer survivors, family members and public health-leaders shared concrete recommendations with all forum participants and the research team. The CRC team is using this community input to inform their full award research proposal ($600,000 over three years) where they intend to determine if the navigators can improve time to diagnosis and treatment, completion of recommended care, and patient’s satisfaction with care.
In addition to publicizing initial study results and reaffirming the value of community input, the enthusiasm generated by the event will be of value in maintaining community involvement throughout the remainder of the study and future research projects. A recent evaluation of the CRC awards showed that high levels of community involvement were associated with greater research outcomes (i.e. improved recruitment and retention, data analysis, and dissemination of results).
