API-Friendly Resources for BC Clinical Trials

Institution: Operation Samahan Inc.
Investigator(s): Fe Seligman,  - Vanessa Malcarne, Ph.D. - Georgia Sadler, Ph.D. M.B.A. -
Award Cycle: 2014 (Cycle 20) Grant #: 20AB-1301 Award: $100,000
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Health Policy and Health Services: better serving women's needs

This is a collaboration with: 20AB-1302 - 20AB-1300 -

Initial Award Abstract (2014)

Introduction: Operation Samahan, Inc. (OS) formed a community-campus partnership (CCP) with the UCSD Moores Cancer Center (UCSD) and San Diego State University (SDSU) with the goal of increasing Asian Pacific Islander (API) women’s participation in breast cancer (BC) clinical trials (CT). Why is this important? BC CT are studies that lead to improvements in prevention, early detection, and treatment of BC. However, it has been difficult to attract API women to take part in these studies, and this means that the results of the studies may not apply equally to API women. Without proven treatment options, breast cancer will become an even worse problem for API women. Unfortunately, there has been little attention to finding ways to increase API women’s participation in BC CT. Using a community-wide focus to inform API women about BC CT before they have BC is very important. Receiving a BC diagnosis is overwhelming, making it a poor time for a woman to learn about the complexities of treatment options, let alone BC CT. Further, starting standard BC treatment can disqualify women from BC CT for which they might have been eligible. This makes it important for women to be aware of BC CT as a treatment option before the start of their BC treatment. It is equally important to find ways to help API women in the community who do not have BC, to learn about BC CT that are recruiting healthy women. For example, there are studies for BC prevention and detection. Overall, helping all API women to be more aware of BC CT and their importance to API women should help them to feel more positively about BC CT, and should increase their interest in learning about the BC CT in which they could participate, and their likelihood of participation.

This pilot project’s goal is to develop an API-friendly resource package of BC CT educational materials and dissemination strategies for use in a subsequent community-wide BC CT awareness campaign. The campaign would promote API women’s participation in BC CT. The resource package would contain ideas for using the educational materials to communicate the message about why it is important for API women to participate in BC CT. The CCP will work with its BC Advisory, Advocacy, and Action Council, and API community members, to create the resource package for the campaign.

Question(s) or hypotheses: Can the CCP, working with its community advisors and members of the API community, create a culturally appropriate resource package that can be used to promote API women’s participation in BC CT?

General methodology: This project uses community-based participatory research. The community identified the problem addressed in this proposal and will work with the CCP to develop the resource package and design the campaign. Before proposing this project, CCP interviewed 45 API women to obtain their ideas on how to promote BC CT participation by API women. From these interviews, the CCP decided the best approach would be to create a “resource package” containing many ideas and materials that could be used. Because the API community is so diverse, it is important to have many ways to reach API women from different community subgroups. So, for this project, the CCP, the Council, and API community members will collaborate to develop a wide variety of materials and strategies that will communicate a positive message about BC CT participation. API women from the community will be interviewed and their ideas and feedback used to develop and improve the resource package of materials and strategies, until it is ready for use in a BC CT awareness campaign for API. The materials and strategies will be varied and offered with suggestions for adapting and translating them for different API subgroups. They will be designed for use in traditional API cultural settings: cultural celebrations, social and family gatherings and API media.

Innovative elements: A new set of BC CT educational materials and strategies for using them will be developed for use in an API community-wide BC CT awareness campaign.

Community involvement: This project arose from Operation Samahan, a community organization that had received a grant to build a multi-organization, community-based infrastructure to find ways to improve the API community’s health. The project’s two campus partners were invited to join this collaboration to help generate community-based research studies that addressed community needs. The Council consists of API BC advocates, survivors, and family members, and will advise on all aspects of the project. API community members will guide the development of the resource package and planned campaign.

Future Plans: The partnership will test the effectiveness of a community awareness campaign using the newly developed resource package to positively impact the API community’s BC CT-related knowledge, attitudes, and behavior.

Final Report (2016)

Brief Overview: The degree to which research findings can be generalized is determined by the degree of diversity of the sample’s study participants. A community-campus partnership (CCP) undertook the project of identifying the factors that contribute to encouraging and discouraging API women’s participation in breast cancer (BC) clinical trials (CT). The CCP included Operation Samahan, Inc. (OS) as the community partner and UC San Diego and San Diego State University as the campus partners. The CCP’s ultimate goal was to find culturally aligned ways to increase API women’s participation in therapeutic and non-therapeutic BC CT that would produce the next generation of evidence-based medical care.

Completion of Project Aims: The goal of this CBCRP pilot study was to establish a productive community campus working partnership to enhance all partners’ capacity to address this underrepresentation in a way that is effective and culturally competent for the API community. The project completed interviews with 60 women from diverse API communities to help identify potentially effective strategies to raise awareness of the benefits of participation in breast cancer clinical trials. From those interviews, a community-based campaign was recommended as the approach most likely to be effective. The campaign was further developed by the research team and discussed with the Advisory Council who further honed the design. That campaign strategy along with sample supporting materials was then presented to an additional 28 women via in-depth interviews for further honing. Next we finalized the design for the campaign and developed a package of sample resource materials that could be used to implement the campaign. Working with the Advisory Council, the CCP finalized the campaign plans. The CCP also worked closely with the Advisory Council to consider various methodologies for evaluating the impact of the campaign and ultimately chose a methodology that was community-based and scientifically rigorous. Hence, all aims were achieved on schedule.

Barriers Encountered: The main barrier encountered was that the community campus partnership had to resolve the complexity of securing an independent Institutional Review Board (IRB) for the community partner. This was a significant accomplishment of this research project. While that issue was being re solved, the community campus partners were able to undertake all of the tasks for the early months of this project, since none were IRB-related. Once the community partner secured its own IRB, the remainder of the project and its tasks have all flowed quite smoothly. A minor barrier that was anticipated was the difficulty of securing representation from all of the diverse sub-communities within the larger API community. The CCP identified 16 API sub-communities within San Diego County. All communities were included, but accrual to four of the community sub-samples was only partially completed. p> Major Accomplishments: The aims of the grant were achieved and there has been significant cross-learning between the community and campus partners. The campus partners have gained greater insights and access to difficult to reach API women, while the community partner has gained skills and experiences that are beneficial to their becoming a valuable scientific partner. The partners have a long history of respect and collaboration which has contributed to the partnerships exceedingly smooth operation. This has been further strengthened by team members who are equally committed to reducing the barriers that API women face to engaging in breast cancer clinical trials. Hence, at this point, the partners have concluded that they can answer their key pilot study question affirmatively: The community and campus partners can indeed work together to create a breast cancer clinical trials educational program that the consensus of opinion suggests will have universal appeal to women across all API subgroups.

Plans for Continuation: With the information gathered, a full application was prepared and submitted to the CBCRP to make it possible to scientifically test the strategy. The findings from the study will continue to be summarized for dissemination via presentation at national meetings and papers submitted to peer-reviewed journals.