Building Native Hawaiian capacity in cancer research and programming
A legacy of 'Imi Hale
Article first published online: 14 SEP 2006
Copyright © 2006 American Cancer Society
Supplement: The Special Populations Networks: Achievements and Lessons Learned 2000–2005
Volume 107, Issue Supplement 8, pages 2082–2090, 15 October 2006
How to Cite
Braun, K. L., Tsark, J. U., Santos, L., Aitaoto, N. and Chong, C. (2006), Building Native Hawaiian capacity in cancer research and programming. Cancer, 107: 2082–2090. doi: 10.1002/cncr.22157
- Issue published online: 3 OCT 2006
- Article first published online: 14 SEP 2006
- Manuscript Accepted: 24 MAY 2006
- Manuscript Revised: 6 APR 2006
- Manuscript Received: 17 JAN 2006
- NCI Cooperative Agreement. Grant Number: U01-CA86105-05
- community health networks;
- action research;
- community participation;
- organizational case studies;
- Pacific Islander Americans;
- social change;
- social values;
- technical assistance for health planning
In 2000, cancer health indicators for Native Hawaiians were worse than those of other ethnic groups in Hawai'i, and Native Hawaiians were under-represented in research endeavors. To build capacity to reduce cancer health disparities, 'Imi Hale applied principles of community-based participatory research (CBPR) and empowerment theory. Strategies included: 1) engaging Native Hawaiians in defining cancer priorities; 2) developing culturally appropriate processes and products; 3) supplementing primary and secondary cancer prevention activities; 4) offering skills training and technical assistance; and 5) providing an infrastructure to support culturally appropriate research. Between 2000 and 2005, 'Imi Hale involved more than 8000 Native Hawaiians in education, training, and primary and secondary prevention activities; developed 24 culturally tailored educational products (brochures, curricula, and self-help kits); secured $1.1 million in additional program and research funds; trained 98 indigenous researchers, 79 of whom worked on research projects; and engaged more than 3000 other Native Hawaiians as research participants and advisors. Evidence of empowerment was seen in increased individual competence, enhanced community capacity and participation, reduced barriers, and improved supports to address cancer in Hawaiian communities. Operationalizing CBPR and empowerment requires a commitment to involving as many people as possible, addressing community priorities, following cultural protocol, developing and transferring skills, and supporting an infrastructure to reduce barriers and build supports to sustain change. This approach is time consuming, but necessary for building competence and capacity, especially in indigenous and minority communities. Cancer 2006. © 2006 American Cancer Society.
Native Hawaiians are individuals who trace their ancestry directly to the Polynesians who peopled and governed the Hawaiian archipelago prior to the arrival of Westerners in 1778.1 Post-contact, many Hawaiians died of introduced diseases. The United States overthrew the legitimate government of Hawai'i in 1898, and Hawai'i became a state in 1959. Today, Native Hawaiians comprise about 20% of Hawai'i's population, along with Caucasians (24%), Japanese (22%), Filipinos (15%), and others.2 Seven islands in the archipelago—O'ahu, Hawai'i, Maui, Kaua'i, Ni'ihau, Moloka'i, and Lāna'i—are inhabited. The capital, Honolulu, is on O'ahu. Native Hawaiians are overrepresented in rural communities of O'ahu and on the neighbor islands.
Similarly to indigenous groups in other locales, Native Hawaiians have lower life expectancy and poorer health indicators than the culturally dominant ethnic groups in the state.1–4 Focusing on cancer, for 1995 through 2000, male cancer mortality rates were 220 per 100,000 for Native Hawaiians, compared to 199 per 100,000 for Caucasians, and female cancer mortality rates were 193 per 100,000 for Native Hawaiians compared to 135 per 100,000 for Caucasians.3 Screening participation was lower. In 2000, only 50% of Hawaiian women 40 and older ever had a mammogram, compared to 66% of Caucasian women. In 2001, only 36% of Hawaiians 50 and older ever had a fecal occult blood test (FOBT) (vs. 55% of Caucasians), and only 34% ever had a sigmoidoscopy or colonoscopy (vs. 53% of Caucasians). In 2000, 31% of Hawaiians smoked, compared to 21% of Caucasians.5
Barriers to expanding research on Hawaiian health included under-representation of Native Hawaiians in research careers and a historical distrust of research among many Native Hawaiians.1, 4, 6, 7 In 2000, fewer than five Native Hawaiians were in leadership positions in cancer-related research and programming.4 Of research underway, little of it was perceived to address Native Hawaiian priorities or to have been conducted in culturally appropriate ways. Some research findings were considered harmful, both by generating feelings of exploitation and portraying Native Hawaiians as sick and uncaring about their health.4, 6–9
The goal of 'Imi Hale—Native Hawaiian Cancer Awareness, Research, and Training Network ('Imi Hale) was to address cancer health disparities by engaging more Native Hawaiians in research, programming, and health seeking. 'Imi Hale was one of 18 special populations networks (SPN) funded by the National Cancer Institute's (NCI) center to reduce cancer health disparities in 2000, with the distinction of being the only SPN, based in a community nonprofit agency rather than a university, research center, or medical institution.
'Imi Hale's work was guided by principles of community-based participatory research (CBPR) and empowerment theory, both aimed at strengthening individual competence and community capacity to identify and resolve their own problems.10–14 CBPR is based on community-set priorities and builds on community strengths and resources; provides tangible benefits (e.g., through the transfer of skills and knowledge to individuals and communities); and does good rather than harm.6, 7, 10–12 In adhering to these principles, 'Imi Hale strove to demonstrate that a community-based agency could provide the infrastructure for scientifically sound, community-responsible research that was developed and conducted by Native Hawaiian researchers.4, 8 Empowerment theory also promotes transfer of knowledge and skills and increased control of one's life. Four measures of empowerment are increased competence of individuals, enhanced capacity of communities, and reduced barriers and improved supports to address the issues at hand.13, 14 Five strategies serve both CBPR and empowerment theory: 1) listening to the community,15 2) developing culturally appropriate processes and products for cancer education and research,16 3) working with partners to enhance cancer programming,17, 18 4) offering training and technical assistance,19 and 5) providing an infrastructure to support CBPR (Fig. 1).10
This paper describes the organizational structure and empowerment strategies of 'Imi Hale; outlines major capacity-building accomplishments; and provides examples of how 'Imi Hale fostered participation and leadership of Native Hawaiians in its first 5 years. “Lessons learned” and the application of this model in other Pacific Islander communities are discussed.
MATERIALS AND METHODS
'Imi Hale's infrastructure reflects adherence to CBPR principles and empowerment in its broad participation and leadership by Native Hawaiians (Fig. 2). Of 'Imi Hale's staff, 75% (9 out of 12) were Native Hawaiian, including the principal investigator (PI), project director, 2 program managers, 2 administrative staff, and 3 research interns. Part-time research director and coinvestigators were not Hawaiian.
Three groups guided 'Imi Hale: Community Council, Scientific Council, and the Steering Committee. Collectively, these groups represented a diversity of disciplines, sectors, and Native Hawaiian communities. The 10-member Community Council advised on the cultural appropriateness of the research, researchers, and program activities. Membership included community representatives from 7 islands, including a kumu hula (hula expert) and retired teacher from rural O'ahu, a kalo (taro) farmer from Maui, a librarian from Kaua'i, and community advocates from Hawai'i and O'ahu. Many of these individuals were involved in the initial conceptualization of 'Imi Hale prior to funding, and many had personal experience with cancer. The 10-member Scientific Council advised on the scientific merit of research projects; members were selected for their expertise in research, particularly CBPR. One-half of the membership was Native Hawaiian, including 4 physicians, a professor of social work, and representatives from Hawai'i's Health Department. Non-Hawaiian members were affiliated with research centers in Honolulu. The 11-member Steering Committee (73% Native Hawaiian) established policy and approved research projects submitted for federal funding. Members included community health providers representing 7 islands and business and media leaders. Members were reimbursed for travel to the meeting or connected by speaker phone. The name 'Imi Hale reflects our commitment to inclusion. The literal translation is House of Searching, but the kaona (hidden or double meaning) is: to establish, as a dynasty; to acquire authority; to establish an inheritance for one's children; and to form a friendship so close that one feels welcome in the house of the other.4
Native hawaiian health care systems
'Imi Hale collaborated with five community-based Native Hawaiian Health Care Systems (NHHCS) established by the Native Hawaiian Health Care Improvement Act.9 NHHCS provide outreach, primary and secondary prevention, and access services to more than 25,000 Native Hawaiians annually from Hawai'i's seven inhabited islands. The majority of NHHCS staff is Native Hawaiian, and 'Imi Hale subcontracted with each NHHCS to support a designated community outreach staff (COS) for cancer. 'Imi Hale provided training to COS (and other NHHCS employees and board members) in outreach skills, health education, grant writing, and evaluation to foster their capacity for cancer programming. In exchange, NHHCS helped convene community constituents to: participate in focus groups to set community cancer priorities; develop and test culturally tailored cancer education materials and programs; and participate in research.
Native hawaiian health care systems-institutional review board (NHHCS-IRB)
The 20-member NHHCS Institutional Review Board (IRB) was established in 2000 to provide a community-based, community-sensitive body to review research emanating from 'Imi Hale and the NHHCS. IRB membership was 78% Native Hawaiian and included researchers, the five NHHCS Executive Directors, health care providers, and community representatives from across the state. IRB requirements and recommendations helped assure that research was respectfully conducted, skills were transferred, data ownership was articulated, and potential harms to individuals and groups were minimized.8
Nā Liko Noelo program
'Imi Hale established the Nā Liko Noelo (“budding” researchers) program in 2000 to build a network of competent indigenous researchers. By 2005, this program had identified, trained, and assisted 98 Native Hawaiians interested in cancer research. Because the pool of Native Hawaiian doctorate holders was small, 'Imi Hale welcomed all Native Hawaiians seeking to enhance research skills. Membership ranged from high school students in school-based research program to health professionals who wanted to develop and lead a research project, students who wanted to intern on a project, and community members.
Local and national partners
Partnerships with 53 entities were formalized through memoranda of agreement, letters of commitment, and subcontracts. Partners included grass-roots community groups, agencies serving the uninsured and medically underserved, academic institutions, civic organizations, advocacy groups, minority-led programs, foundations, and government. Collaborations and contributions primarily fell into 4 categories: 1) cancer education and awareness; 2) research training and mentoring, 3) clinical services; and 4) funding.
Commitment to CBPR and empowerment was operationalized through 5 strategies: 1) listening to the community,15 2) developing culturally appropriate processes and products for cancer education and research,16 3) working with partners to enhance cancer programming,17, 18 4) offering training and technical assistance,19 and 5) providing an infrastructure for CBPR.10
Listening to the community
In the first year (2000), we engaged a broad range of Native Hawaiians in setting cancer research and program priorities for 'Imi Hale. Four approaches were used: a priority-identification survey completed by 'Imi Hale Council and Committee members and representatives from organizations serving Native Hawaiians,4 focus groups with Native Hawaiian cancer survivors (also examining barriers and supports to survival),20 a survey of cancer specialists and primary care physicians (also examining barriers and supports to Native Hawaiian participation in clinical trials and cancer screening),21, 22 and a statewide survey of Native Hawaiian smokers (also identifying barriers to smoking cessation).23 Based on responses (n = 980), 5 priorities for cancer research and programming emerged: 1) lifestyle (e.g., smoking cessation, diet, and exercise); 2) timely cancer screening; 3) access (e.g., culturally appropriate treatment, transportation, insurance); 4) culturally appropriate cancer education materials; and 5) biological and genetic research. Ideas for specific programs also emerged, including establishment of cancer support groups and promotion of Native Hawaiian cancer survivors as educators.
The discussion process confirmed the importance of recognizing and incorporating Hawaiian cultural values and practices in research, researcher conduct, cancer education, and community events. For example, informants stressed the importance of 'ohana (family), and subsequent programs were developed to attract and serve entire families, rather than individuals.
Informants iterated the importance of beginning activities with a pule (prayer), sharing food, and allowing time to kukakuka (discuss and consult); thus, subsequent research protocol allocated time and budget for these. Community ideas for “tangible benefits” included opportunity to work on the study, to serve as an advisor, and to determine how funds were spent. Regarding research incentives, for example, we learned that some communities were agreeable to modest cash incentives, others felt gas or food certificates were appropriate, and others felt that financial incentives were insulting. Listening to the community provided researchers with information on the social and cultural norms for the respective community, being mindful that each Hawaiian community is different.
Developing culturally appropriate processes and products
'Imi Hale's research-review process required researchers to present their concepts to Community and Scientific Council members and seek approval to develop a full proposal. In line with CBPR principles, council members held researchers accountable for involving community representatives and incorporating community (as well as scientific) feedback as proposals were developed. Approval from both Councils and the Steering Committee was required prior to proposal submission. This process took about 4 months, which allowed researchers to develop relationships with council members and community partners and to adequately resolve potential risks.8 Another process that reflected Hawaiian culture was 'Imi Hale's annual “Report to the Community,” at which COS and researchers shared their accomplishments and lessons learned with constituents and partners. This event also allowed 'Imi Hale to recognize members and partners and to solicit research and programming priorities for the upcoming year.
A lack of cancer education materials featuring Native Hawaiians led to the development of the Native Hawaiian Cancer Brochure Series. The young Native Hawaiian PI worked with healthcare providers on 5 islands to develop culturally relevant brochures, which then were pretested with more than 300 staff and clients in clinic and neighborhood settings across the state.16 Technical review and endorsement were secured from the 'Ahahui o Na Kauka (Association of Native Hawaiian Physicians), and 25,000 sets have been distributed. Additionally, the PI's 4-step-development protocol (outlining community involvement from design and technical review to testing and endorsement) became a model for culturally appropriate materials development.
Working with partners to enhance cancer programming
'Imi Hale focused on supplementing and strengthening primary and secondary cancer prevention services in partners providing direct services to Native Hawaiians, including: the NHHCS; the statewide network of federally funded Community Health Centers; the Department of Health's Breast and Cervical Cancer Control Program providers; and Native Hawaiian organizations such as the Association of Hawaiian Civic Clubs. An outstanding example was a collaboration with the NHHCS on the rural island of Moloka'i to conduct a festival-like cancer screening event titled 'Ohana (family) Day. Moloka'i's NHHCS had previous success with recruiting for prostate and breast cancer screenings, but hoped 'Ohana Day would attract unscreened and uninsured Hawaiians. Of the 73 participants, 10 had abnormal findings, and all received follow-up screening and treatment within 3 months. Significant increases were seen in participants affiliated with Moloka'i's NHHCS and linked to insurance. At 6 months post-event, significant improvements were seen in the number of men current with prostate cancer and colorectal cancer screening and the number of women current with clinical breast exam and colorectal cancer screening. The NHHCS subsequently integrated this event into their regular programming and expanded 'Ohana Day to the island of Lāna'i.24
Offering training and technical assistance
'Imi Hale provided regular workshops on cultural competency, research, grant writing, manuscript development, community mobilization and aspects of patient care to address identified training needs of researchers, outreach staff, and IRB members. The program supported and linked individuals to trainings sponsored by partners, such as a Native researcher training program in Oregon, a community health worker training in Mississippi, and local workshops on human subjects protection. Intensive hands-on technical assistance was provided to researchers by staff, local, and national partners. Technical assistance included helping with research design, locating or constructing survey instruments, preparing presentations, interacting with the proposed research community, applying for IRB approval, collecting and analyzing data, and writing manuscripts. Training and technical assistance were provided to NHHCS outreach staff as they engaged in focus group facilitation and wrote proposals to fund island-specific cancer prevention and control programs.
Providing a CBPR infrastructure
Infrastructure to support community-based research was provided by 'Imi Hale's operational structure (including the NHHCS-IRB) and allegiance to principles of CBPR and empowerment. 'Imi Hale also served as a “research home” for researchers not affiliated with a university or agency. This infrastructure allowed us to support PIs with baccalaureate and masters degrees, whereas university-based research homes often require researchers to be university employees and to have doctoral degrees. Our infrastructure also expanded opportunities for NHHCS outreach staff, high school students, and community members to engage in research. For example, outreach workers were trained in data collection protocols and their respective NHHCS compensated for completed surveys and focus group coordination. Students could apply for $2000 research stipends to support themselves as interns or as participants in conferences outside Hawai'i. Community members were compensated as coinvestigators and reimbursed for training-related travel.
Empowerment theory posits that program participants should increase individual competence, that community capacity should be enhanced, that barriers to participation in cancer research and programming be reduced, and that supports be improved. This section illustrates accomplishments in each area.
Increased Individual Competence
Individual members of the Nā Liko Noelo program gained knowledge and skills in research through their engagement in 26 research projects. Of the 98 program members, 24 served as investigators, 55 as research assistants, and 10 as mentors to other researchers. Individual competence was further enhanced for 73 nā liko noelo who attended training and received technical assistance sponsored by 'Imi Hale, 23 supported to attend training on the U.S. continent, and 9 supported in internships at laboratories or research facilities. 'Imi Hale helped 29 students meet requirements to participate in research by linking them with projects, and 6 students were motivated to pursue advanced degrees with a focus on research. Dissemination skills were gained by 45 that made conference presentations on their work and 26 that published (including 8 first-time submitters). Individuals expanded personal networks after being appointed to national (n = 7) or local (n = 8) cancer-related boards and committees and winning fellowships (n = 3).
Forty-one Native Hawaiians served on 'Imi Hale's staff, the Community Council, Scientific Council, Steering Committee, or IRB, gaining cancer knowledge and skills through participation and training provided by 'Imi Hale and other entities. Many reported improved personal abilities as research advisors, outreach workers, and service providers. NHHCS Executive Directors reported increased skills in conducting focus groups, evaluating programs, and reviewing research. Among NHHCS outreach staff, an individual became a first-time cancer grant recipient, 8 were sponsored to attend conferences or visit innovative programs, 1 was awarded a fellowship focused on tobacco, 1 became an advisory committee member for a sister SPN outreach program, 1 was appointed to a national board, and 4 received job promotions. Members of the IRB and Community Council reported applying new knowledge and skills to other IRBs and community organizations.
Enhanced Community Capacity
Supplemental funding and training of outreach staff members led to enhanced capacity of the 5 NHHCS in providing cancer-related services to Native Hawaiians. Each NHHCS developed and annually updated a strategic plan for cancer education, which guided and stimulated expansion of activities. NHHCS staff gained and enhanced skills in networking, community mobilization, and cancer education. Over 5 years, more than 8000 Native Hawaiians participated in education and training sessions and primary and secondary prevention events sponsored by NHHCS and 'Imi Hale.
We also enhanced the grant-getting capacity of healthcare entities. For example, in 2000 and 2004, 'Imi Hale partnered with the NHHCS to survey Native Hawaiian smokers on tobacco use, the desire to quit, and preferences for tobacco cessation programs.23 These data were provided to NHHCS and community providers and coalitions in user-friendly formats conducive to “cutting and pasting” into grant proposals.
'Imi Hale enhanced the cancer education capacity of Native Hawaiian groups. For example, the Association of Hawaiian Civic Clubs ratified cancer-related resolutions submitted by 'Imi Hale at their annual conventions. Resolutions called for increased programming in education about cancer and genetic research, in breast and colorectal cancer screening, and in tobacco cessation. To support the resolutions, 'Imi Hale arranged for Hawaiian professionals to provide cancer education and screening, and utilized the convention venue to evaluate cancer education materials and research protocols. The 'Ahahui o nā Kauka (Kauka Hui), a professional association of Native Hawaiian physicians, both provided services and benefited by its partnership with 'Imi Hale. For example, we collaborated on continuing medical education events (e.g., on increasing participation in cancer screening and clinical trials).21, 22Kauka Hui members also reviewed and formally endorsed cancer education materials developed through 'Imi Hale, provided free cancer screening, and participated in other community cancer education events and research projects, resulting in more than 500 volunteer hours provided by Kauka Hui members.
Removal of Barriers
A major barrier identified in first-year key informant surveys and focus groups was the lack of cancer education materials tailored for Native Hawaiians. In response, 'Imi Hale developed cancer education materials and incorporated elements to make them more attractive, readable, acceptable, and useful to Native Hawaiians and providers. Products included a series of 4 “talk story” booklets about breast cancer,4 a colorectal screening presentation kit,24 the Native Hawaiian Cancer Awareness Brochure Series, breast health shower cards and bead necklace kits, stop-smoking kits, and a support resource kit for newly diagnosed breast cancer patients. The tailored materials featured Native Hawaiian faces and words, for example, from cancer survivors, physicians, former smokers, and families. All were pretested among NHHCS clients and providers on 5 islands and with other Native Hawaiian organizations, such as the Association of Hawaiian Civic Clubs and the Kauka Hui.
Another barrier was limited success of existing minority-funded research programs in recruiting and attracting Native Hawaiians. Hawai'i offered little or no research training in cancer control, and there was no central clearinghouse for linking research trainees to research projects or funding. Additionally, there were barriers to getting involved with university-based projects if one was not an employee or student. By leveraging partnerships with training and internship entities and by providing unaffiliated researchers a home, we expanded research opportunities to individuals who would have otherwise been excluded (see Table 1).
|Type of individual||Case example|
|Medical student||A young man wanted to apply to medical school, but his job left him no time to study for the MCAT. He became a research intern and was assisted in writing a successful research proposal. His schedule was flexible, allowing time to study and gain research skills to enhance his medical school application.|
|Physician||A physician was repaying her minority scholarship by serving as medical director of a rural clinic. She was PI on 2 research projects, but to accommodate her busy schedule, 'Imi Hale managed her projects and supervised Native Hawaiian research associates to collect and analyze data. She participated in data interpretation and manuscript preparation, and coauthored 4 publications.|
|Program administrator||A program administrator, initially serving on the IRB, became interested in research. In her MSW program, researchers associated with 'Imi Hale created research opportunities for her, earning her graduate credits and skills. After graduation, she became co-investigator on research projects in her organization.|
Another barrier was a generalized distrust of research by Native Hawaiians.8 By increasing and supporting the conduct of scientifically sound research by Hawaiians for Hawaiians, with sensitivity to community and cultural concerns, 'Imi Hale has begun to reduce this distrust. Evidence included the willingness of 16 Hawaiian civic clubs to participate in a randomized control trial of a colorectal screening intervention25 and of 28 breast cancer survivors and family members to participate in a randomized control trial of a family-counseling intervention. Over 5 years, more than 3000 Native Hawaiians were involved in research.
Another barrier was limited support to write scientific papers and few avenues for publishing. To provide nā liko noelo with skills and opportunities to publish and serve as peer-reviewers, 'Imi Hale sponsored multiple trainings on writing scientific papers and provided intensive technical support to new authors. 'Imi Hale guest edited 2 issues of the Pacific Health Dialog, a peer-reviewed journal of community health and clinical medicine. Each issue featured a dozen nā liko noelo as lead or coauthors.26, 27 Hawai'i researchers published in other journals as well, with a total of 35 publications in the program's first 5 years.
Approximately $1.1 million in supplemental funds were leveraged by 'Imi Hale to support cancer-related research and programming for Native Hawaiians. This included $875,180 for 26 pilot research projects—12 funded through the NCI supplemental award mechanism and 14 through other sources. Another $157,000 was secured for tailored cancer education programs and materials. These funds expanded research and programming in the 5 priority areas identified in 'Imi Hale's first year (Table 2). For example, in the area of lifestyle, funds supported focus groups to inform the development of smoking-cessation interventions, as well as the testing of an after-school exercise program. To increase timely screening, funds were secured to test culturally relevant interventions like 'Ohana (family) day and the civic club colorectal cancer screening intervention.24, 25 Regarding access, funds were used to establish cancer support groups on Moloka'i and Lana'i and to test an intervention to improve family support of women with breast cancer. As noted earlier, funds were used to develop and test tailored cancer education materials, subsequently used by providers across the state. Examples in the area of biological and genetic research included secondary data analysis of breast cancer survival, a high school-based science education program that examined anti-cancer properties of Hawaiian plants, and a genetic research education program. Additionally, 'Imi Hale helped NHHCS outreach staff apply their new skills to secure $150,000 for cancer education programs and activities on their respective islands.
|Community-set priorities||Research and programming|
|Lifestyle||Survey of Hawaiian smokers|
|Focus groups on smoking cessation|
|Study of after-school physical activity programs|
|Timely cancer screening||Focus groups in churches and civic clubs|
|'Ohana Day “festival” intervention to improve screening|
|Controlled test of colorectal cancer interventions|
|Cancer survivor speakers bureau|
|Access||Focus groups with cancer survivors|
|Study of an intervention to improve family support for women with cancer|
|Resource kit for newly diagnosed breast cancer patients|
|Cancer support groups|
|Culturally appropriate education materials||Breast cancer “talk story” booklets|
|Breast health shower cards|
|Bead necklace kits|
|Native Hawaiian cancer awareness series|
|Colorectal cancer presentation kit|
|Biological/genetic research||Ethnic comparison of breast cancer survival|
|Training to identify anticancer compounds in Hawaiian plants|
|Survey on perceptions of genetic research|
|Genetic research education|
The establishment and nurturing of a community IRB improved support for cancer education and research in Native Hawaiian communities. This body, with representatives from a variety of Hawaiian communities, was critical to ensuring that: research conducted by 'Imi Hale considered community concerns and cultural perspectives; consent forms were understandable to participants; benefits to Native Hawaiians were stated and realized; and harm was minimized.8
'Imi Hale's experience between 2000 and 2005 demonstrates that community-based organizations can lead efforts to increase cancer research and programming through capacity building. Applying CBPR principles and empowerment theory, we helped increase individual competence, enhance community capacity, reduce barriers, and improve supports in cancer research and programming. Lessons learned over 5 years may be useful to other communities.
As noted by others, CBPR takes time to implement.10–12 Building an infrastructure that includes meaningful roles for indigenous leaders may require significant time and budget for nurturing these leaders.17, 19 Having multiple advisory and review groups allows for broad participation, but requires time and budget to get people to meetings and/or linked in by speaker phone. Time to discuss issues is especially important for groups like Native Hawaiians that have experienced disempowerment through colonization.1 In the case of Hawai'i, 200 years of health disparities has stimulated research on Hawaiians, but much of this research was perceived by Hawaiian communities as poorly conducted, without benefit, and in some cases harmful.8 Thus, meeting time was devoted to processing issues and perceptions around research, heal old wounds, and seek better ways of doing things. Although challenging, our goal was to nurture long-term involvement of communities in research and demonstrate the partnership and leadership roles that communities and community members can play.17, 18
Commitment to participation also requires accommodation of diverse training needs and schedules.19 Many Native Hawaiians interested in research also have full-time jobs and families and could not devote full-time to research. Many whose education was supported by scholarship had to “pay back” by taking clinical jobs, which left little time for research. Although we acknowledge that only a fraction of nā liko noelo will become career researchers, all have gained experience and competence applicable to health care careers. This infuses more research-savvy Native Hawaiians into the health care field, and these individuals will play critical roles in translating and applying research to practice.
Universities have the staff and infrastructure to compete successfully for federal grants. As a result, many CBPR projects are university-based. We found several advantages to being community-based. For example, the mission of our parent organization, Papa Ola Lōkahi (POL) is to improve the health and wellness of Native Hawaiians, and this is directly supportive of 'Imi Hale's goals. POL also had longstanding relationships with Native Hawaiian individuals, communities, organizations, and the NHHCS. Within this established network, 'Imi Hale benefited from the trust and connections already established by POL. Also, individuals and agencies were willing to discuss research and consider participating because 'Imi Hale did not carry the potential stigma of a university or research center. Because we were not housed in a university, we were not pressured to protect our jobs by bringing in funding, publishing, or supporting larger institutional goals. The responsibility to leverage funding and publish findings was still present, but this was done to meet community needs and develop indigenous Hawaiian researchers.
As others have found, partnerships were essential to our success.17, 18 We especially benefited from partnerships with other minority initiatives, which provided processes and models that 'Imi Hale adapted and tailored (with permission) and successfully implemented in Hawaiian communities. We also learned that our experiences and skills could benefit other Pacific Islander groups. Not previously mentioned in this article is the role 'Imi Hale played in assisting the United States-associated Pacific Island jurisdictions (including Guam, American Samoa, the Republic of Palau, the Republic of the Marshall Islands, and the Federated States of Micronesia) with their cancer prevention and control efforts. In partnership with the University of Hawai'i Department of Family Medicine and Community Health, 'Imi Hale assisted in securing extramural funds; conducting and publishing needs assessments; staffing a council of Pacific Island representatives; and providing technical assistance to support jurisdiction-identified priorities.28 This Pacific cancer initiative raised awareness about cancer in the Pacific and leveraged more than $3.5 million in federal funding for prevention and control, professional education, and training and research development in the region.
Although the ultimate goal of capacity-building programs like 'Imi Hale is to reduce cancer health disparities, as measured by increased screening and reduced mortality, 5 years is not enough time to affect these changes. Monitoring systems are in place, however, through which changes in behavioral risk factors, screening, stage of diagnosis, and mortality can be tracked. We believe that our commitment to developing indigenous leadership in cancer is a critical first step to reducing cancer health disparities in this population.
The authors salute the National Cancer Institute's commitment to community leadership in cancer prevention and control. Under the leadership of Dr. Harold Freeman and the staff at the Center to Reduce Cancer Health Disparities, 'Imi Hale has moved forward with optimism that other agencies will recognize the power of communities and the valuable contributions they can make. The authors extend their heart-felt appreciation to those community-based participatory research initiatives that pioneered the way for 'Imi Hale, namely Na Pu'uwai, the Moloka'i Heart Study; Ho'oke 'Ai, the Moloka'i Diet Study; and Malama Kekahi i Kekahi, the Wai'anae Cancer Research Project, and to all our community partners and members who helped demonstrate what a community-based model could accomplish. The authors also thank Hardy Spoehr and Papa Ola Lōkahi for providing 'Imi Hale a nurturing home.
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