Capacity Building and Community Involvement: Orange County Asian Pacific Islander Community Alliance (OCAPICA):

Natalie Collins, M.S.W. Outreach and Technical Assistance Coordinator

Our Community Research Collaboration awards encourage growth in organizational capacity and community participation among community agencies involved in research. An excellent example is OCAPICA, which started in 1997 when community leaders mobilized to address health care, policy, and employment issues for Asian Pacific Islanders (APIs) living in Southern California. The organization grew to eight volunteers and sixteen board members
and successfully leveraged a $76,000 coalition-building grant from the California Endowment.

OCAPICA then teamed up with Marjorie Kagawa Singer, a researcher at UCLA. We funded Mary Anne Foo, executive director of OCAPICA, and Dr. Kagawa Singer with a $100,000 pilot award followed by a $500,000 full award for a project entitled, “Improving Breast Health Access for Hmong Women and Men.” The project focused on screening rates among Hmong women in Southern California and the lack of culturally appropriate materials for this community to inform women about screening and breast health.

Capacity Building and Growth
OCAPICA continued their communitybased participatory research projects focusing on cancer prevention and leveraged funding from other agencies like the National Cancer Institute, the California Wellness Foundation, the CDC, and the Office of Minority Health. Additional funding has led to a budget of over $1.5 million for
programs related to cancer prevention, education policy, youth leadership, and community and economic development.

OCAPICA built capacity by investing in the administrative arm of their organization and supporting and training other organizations working on API health issues. OCAPICA also invested in a financial administrator with grant funds management experience, who created investment policies and utilized indirect costs provided by their CBCRP grant to build administrative capacity for the organization. Research findings were shared with other organizations so that existing knowledge and lessons
learned were built upon to create culturally tailored projects for specific API communities. The organization continues to mentor those interested in health professions about appropriate ways to do research in the community; students get mentored in communitybased participatory research by both academicians and community leaders.

Educating Providers and Legislators
OCAPICA shares research results with health care providers, highlighting issues related to linguistic and cultural barriers to health care. The organization (along with community members) has visited legislators in Sacramento to discuss language and access issues. Their findings with specific Asian communities have helped disaggregate data that are often lumped together. In fact, the Hmong project enabled the team to publish the first U.S. data related to screening rates for Hmong women. They have also talked with state data gathering entities like the California Health Information Service about including other Asian groups and oversampling
underrepresented groups like Cambodians.

Community Involvement
In addition to capacity building, OCAPICA has successfully involved community members directly in research projects. While conducting the Hmong study, the partners engaged the entire community by inviting men and spiritual leaders to encourage study participation among Hmong women. This strategy enabled a safe and
encouraging space for breast cancer survivors to share their personal experiences and social support for others who might have suffered their breast cancer experience alone. The study facilitated a significant change in the community, where breast health issues could be discussed openly with collective support. The community advocated for a cancer support group and addressed other sensitive issues like pain management and sexual health.

The community also takes a direct role in research projects by their participation in a Community IRB (Institutional Review Board). A Community IRB puts the control back into the community as they decide what types of research projects would be most beneficial, ensure cultural sensitivity and relevance, and safeguard confidentiality. This IRB is composed of pastors, community leaders, therapists, and researchers working in the community. Over the past two years, this community
IRB has approved over 12 projects. OCAPICA offers several tips for growing organizational capacity: (1) organizations should request the full amount of money required to conduct a study (many tend to underestimate and depend on volunteer time); (2) invest time into strategic planning and fundraising; (3) keep up with the latest technology and take advantage of resources that offer free- to low-cost technology; (4) identify mentors who will provide information on HIPAA regulations,
proposal writing, data ownership, and grant management; and (5) collaborate with other agencies to share lessons learned from the research process. We encourage other organizations to adopt similar capacity and leveraging strategies and join OCAPICA as one of the leaders in building organizational capacity and involving community through the research process.