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1.  Cancer Patient Navigator Tasks across the Cancer Care Continuum 
Cancer patient navigation (PN) programs have been shown to increase access to and utilization of cancer care for poor and underserved individuals. Despite mounting evidence of its value, cancer patient navigation is not universally understood or provided. We describe five PN programs and the range of tasks their navigators provide across the cancer care continuum (education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life). Tasks are organized by their potential to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Although navigators perform similar tasks across the five programs, their specific approaches reflect differences in community culture, context, program setting, and funding. Task lists can inform the development of programs, job descriptions, training, and evaluation. They also may be useful in the move to certify navigators and establish mechanisms for reimbursement for navigation services.
PMCID: PMC3302357  PMID: 22423178
Access to health care; case management; certification; health care disparities; indigenous populations; minority health
2.  Reducing Cancer Health Disparities in the US-associated Pacific 
To assess cancer prevention and control capacity in the US-associated Pacific Islands (USAPI, including American Samoa, Northern Mariana Islands, Micronesia, Guam, Marshall Islands, and Palau) and to support indigenous leadership in reducing cancer health disparities.
Jurisdiction-specific needs assessments were conducted to assess cancer prevention and control capacity and challenges, The Cancer Council of the Pacific islands (CCPI), an indigenous health leadership team from public health and medicine, was supported to review assessment findings, develop priorities, and build capacity to address recommendations.
Capacity varied across jurisdictions, but generally there is limited ability to measure cancer burden and a lack of programs, equipment, and trained personnel to detect and treat cancer. Most cancers are diagnosed in late stages when survival is compromised and care is most costly. Jurisdictions also are challenged by geographic, social, and political constraints and multiple in-country demands for funding. Based on findings, strategies were developed by the CCPI to guide efforts, including fund seeking, to expand cancer prevention and control capacity in regionally appropriate ways.
Concerted planning, training, and funding efforts are needed to overcome challenges and upgrade capacity in cancer education, prevention, detection, and treatment in the USAPI. Indigenous leadership and local capacity building are essential to this process.
PMCID: PMC2917320  PMID: 17149100
community health services; developing countries; health services needs; Healthy People 2010; needs assessment; Pacific Islander Americans; trust territory
3.  ‘Imi Hale – The Native Hawaiian Cancer Awareness, Research, and Training Network: Second-Year Status Report 
The purpose of this paper is to describe ‘Imi Hale, a program developed and managed by Native Hawaiians to increase cancer awareness and research capacity among Native Hawaiians. This US subgroup of indigenous people of the Hawaiian islands has disproportionately high rates of cancer mortality and low rates of participation in health and research careers.
As a community-based research project, ‘Imi Hale spent its first year gathering data from Native Hawaiians about their cancer awareness and research priorities. These findings guide ‘Imi Hale’s community and scientific advisors, a community-based Institutional Review Board, Na Liko Noelo (budding researchers), and staff in developing and carrying out projects that address these priority areas. Emphasis is placed on transferring skills and resources to Native Hawaiians through training, technical assistance, and mentorship. A biennial survey assesses the extent to which community-based participatory research principles are being followed.
Principal Findings
By the end of the second year, statewide and island-specific awareness plans were produced, and 9 funded awareness projects are supporting the development and dissemination of Hawaiian health education materials. Research accomplishments include the enrollment of 42 Native Hawaiian Na Liko Noelo (budding researchers), 22 of which are involved in 14 funded research projects. The biennial evaluation survey found that 92% of our advisors felt that ‘Imi Hale was promoting scientifically rigorous research that was culturally appropriate and respectful of Native Hawaiian beliefs, and 96% felt that ‘Imi Hale was following its own principles of community-based participatory research.
‘Imi Hale’s community-based approach to promoting cancer awareness will result in a sustainable infrastructure for reducing the cancer burden on Native Hawaiians.
PMCID: PMC2914229  PMID: 15352771
4.  Increasing Primary Care Physician Support for and Promotion of Cancer Clinical Trials 
Only 2.5%–3% of adult cancer patients participate in cancer clinical trials, yet about 20% of cancer patients are medically eligible to participate. Research suggests that the primary care provider (PCP) can influence a patient's awareness of, and potentially, his or her decision to consider a clinical trial. To address low cancer clinical trial accrual rates, ‘Imi Hale Native Hawaiian Cancer Network partnered with The Queen's Cancer Center to provide and evaluate education on clinical trials to Hawai‘i PCPs. The educational materials were developed from a national curriculum and tailored to local audiences. Objectives of the curriculum were to educate PCPs about common myths (attitudinal barriers) around clinical trials and suggest ways that PCPs can introduce the concept of clinical trials to their patients with cancer or suspicion of cancer. The curriculum was tested on 128 PCPs in 2012. Knowledge of the PCP's role and their willingness to mention clinical trials were measured through a post-test immediately following the presentation, which 74 (58%) PCPs completed. The post-test results suggested an increase in awareness among PCPs of their potential role in cancer clinical trial accrual, and an increase in PCP willingness to mention clinical trials to their patients with suspicion of cancer or diagnosed with cancer. Although findings suggest that this intervention is useful in increasing PCP receptivity to promoting cancer clinical trials, more research is needed to test if increased willingness results in increased accrual of cancer patients into clinical trials in Hawai‘i.
PMCID: PMC3962034  PMID: 24660125
5.  Helping Cancer Patients Across the Care Continuum: The Navigation Program at The Queen's Medical Center 
Research suggests that cancer patient navigation improves care, but few reports describe the variety of patients managed by a hospital-based navigation program. Differences in navigated patients by the intensity (low, medium, or high) of navigation services they received were examined. The 835 clients seen by the navigators in a hospital-based cancer center were first stratified by quarter and by four ethnic groups. Randomized selection from each group assured there would be equal representation for analysis of Hawaiians, Filipinos, Japanese, and Whites and even numbers over all time intervals. Five professionals extracted data from these case records on demographics, type/stage of cancer, diagnosis and treatment dates, barriers, and navigator actions. Clients had breast (30.0%), lung (15.8%), esophageal (6.7%), colon (5.8%), ovarian (4.2%), prostate (3.3%), and other cancers (34.2%). The median number of actions taken on behalf of a client was 4 (range 1–83), and the median number of days a case was open was 14 (range 1–216). High intensity cases (those receiving more assistance over longer periods of time) were more likely than low-intensity cases to need help with education and reassurance, transportation, care coordination, and covering costs. Although there were no demographic differences across intensity groups, Neighbor Island patients from Hawai‘i, Maui, Moloka‘i, Lana‘i and Kaua‘i were more likely to need help with arranging travel, care coordination, and costs associated with getting treatment (all at P=.05), and patients on public insurance were more likely to have stage 4 cancer (P=.001) and to need help with costs (P=.006). Findings suggest that this hospital-based navigation program is filling a real need of patients across the cancer care continuum. A triage protocol and an integrated data capture system could help improve the targeting and documentation of cancer patient navigation services.
PMCID: PMC3689506  PMID: 23795311
6.  Operationalization of community-based participatory research principles across the National Cancer Institute’s Community Network Programs 
American Journal of Public Health  2011;102(6):1195-1203.
To examine how the National Cancer Institute-funded Community Network Program (CNP) operationalized principles of community-based participatory research (CBPR).
Based on our review of the literature and extant CBPR measurement tools, scientists from nine of 25 CNPs developed a 27-item questionnaire to self-assess CNP operationalization of nine CBPR principles.
Of 25 CNPs, 22 (88%) completed the questionnaire. Most scored well on CBPR principles to recognize community as a unit of identity, build on community strengths, facilitate co-learning, embrace iterative processes in developing community capacity, and achieve a balance between data generation and intervention. CNPs varied in extent to which they employed CBPR principles of addressing determinants of health, sharing power among partners, engaging community in research dissemination, and striving for sustainability.
Although tool development in this field is in its infancy, findings suggest that fidelity to CBPR processes can be assessed in a variety of settings.
PMCID: PMC3292685  PMID: 22095340
Cancer disparities; community health; empowerment; health status disparities; indigenous populations; minority health; partnerships; training
7.  Design and Results of a Culturally Tailored Cancer Outreach Project by and for Micronesian Women 
In 2005, approximately 26% of Micronesian women aged 40 or older in Hawai‘i used mammography for breast cancer screening. We describe an 18-month project to increase screening participation in this population by tailoring educational materials and using a lay educator approach.
Community Context
New immigrants to Hawai‘i are Marshallese from the Republic of the Marshall Islands and Chuukese, Pohnpeians, and Kosraeans from the Federated States of Micronesia. In Hawai‘i, these 4 groups refer to themselves collectively as Micronesians, although each group has its own distinct culture and language.
From 2006 through 2007, we applied principles of community-based participatory research —trust building, joint assessment, cultural tailoring of materials, and skills transfer —to develop and track the reach of Micronesian women lay educators in implementing a cancer awareness program among Micronesian women living in Hawai‘i.
Using our tailored in-language materials,  11 lay educators (5 Chuukese, 3 Marshallese, 2 Pohnpeians, and 1 Kosraean) provided one-on-one and small group in-language cancer information sessions to 567 Micronesian women (aged 18-75 years). Among the 202 women aged 40 or older eligible for mammography screening, 166 (82%) had never had a mammogram and were assisted to screening appointments. After 6 months, 146 (88%) of the 166 had received a mammogram, increasing compliance from 18% to 90%. Lay educators reported increases in their skills and their self-esteem and want to extend their skills to other health issues, including diabetes management and immunization.
Tailoring materials and using the lay educator model successfully increased participation in breast cancer screening. This model may work in other communities that aim to reduce disparities in access to cancer screening.
PMCID: PMC3396555  PMID: 22480611
8.  All-Cause and CVD Mortality in Native Hawaiians 
Cardiovascular disease (CVD) is the leading cause of death among Native Hawaiians. In this article, all-cause and cardiovascular mortality rates among Native Hawaiians are examined, along with associated CVD risk factors.
A total of 855 Native Hawaiians (343 men and 512 women, ages 19–88) were examined as participants of the Cardiovascular Risk Clinics program (1992–1998) and underwent surveillance through September 2007. Cause of each death was determined by review of medical records, death certificates, newspapers, and through queries to community members.
CVD accounted for 55% of deaths. Coronary heart disease (CHD) accounted for the majority of CVD deaths. CVD increased with age and was higher in those with diabetes, hypertension, or high low-density lipoprotein cholesterol (LDL-C). CVD rates were higher in men than in women and 4-fold higher in those with diabetes. In addition to age, diabetes, hypertension, and elevated LDL-C were major risk factors.
Diabetes is a major determinant of CVD in this population and most of the CVD is occurring in those with diabetes. Strategies to prevent diabetes and manage blood pressure and lipids should reduce CVD rates in Native Hawaiians.
PMCID: PMC2893261  PMID: 20392507
Native Hawaiians; cardiovascular diseases; diabetes-related complications
9.  Using a Participatory Four-Step Protocol to Develop Culturally Targeted Cancer Education Brochures 
Health promotion practice  2008;9(4):344-355.
Native Hawaiians have a high cancer burden, but few culturally targeted cancer education brochures exist. The authors followed a participatory four-step protocol, involving more than 200 health providers and clients, to develop and test culturally targeted brochures on skin, oral, cervical, prostate, and testicular cancers. The final products featured Hawaiian faces, scenes, words, and activities. They proved more attractive than existing materials, in particular to younger Hawaiians, and posttests suggested good comprehension of intended messages. This protocol may have application in other communities that want to develop brochures that are attractive, acceptable, readable, and useful to minority clients and their providers.
PMCID: PMC2914226  PMID: 18353907
action research; consumer participation; culture; focus groups; Hawai'i; health promotion; indigenous population; information dissemination; neoplasm; Pacific Islander Americans
11.  Nā Liko Noelo: a program to develop Native Hawaiian researchers 
Pacific health dialog  2004;11(2):225-232.
Native Hawaiians are underrepresented in health research. They also have expressed dissatisfaction with the way in which many non-native researchers have formulated research questions, conducted research, and disseminated findings about Native Hawaiians. ‘Imi Hale - Native Hawaiian Cancer Network was funded by the National Cancer Institute to increase research training and mentorship opportunities for Native Hawaiians. To this end, ‘Imi Hale has followed principles of community-based participatory research to engage community members in identifying research priorities and assuring that research is beneficial, and not harmful, to Native Hawaiians. Developing indigenous researchers is a cornerstone of the program and, in its first 4 years ‘Imi Hale enrolled 78 Native Hawaiian “budding researchers (called Nā Liko Noelo in Hawaiian), of which 40 (68%) have participated in at least one training and 28 (36%) have served as investigators, 40 (51%) as research assistants, and 10 (13%) as mentors on cancer prevention and control studies. The major challenge for Nā Liko Noelo is finding the time needed to devote to research and writing scientific papers, as most have competing professional and personal obligations. Program evaluation efforts suggest, however, that ‘Imi Hale and its Nā Liko Noelo program are well accepted and are helping develop a cadré of community-sensitive indigenous Hawaiian researchers.
PMCID: PMC2914232  PMID: 16281705
action research; Native Hawaiians; Pacific Islanders; research training; mentorship; community-based participatory research
13.  Using Community-Based Research Methods to Design Cancer Patient Navigation Training 
Cancer mortality continues to be higher in Native Hawaiians than Whites, and research has identified numerous barriers to good cancer care. Cancer navigator programs provide individualized assistance to patients and family members to overcome barriers, promoting early diagnosis and timely and complete treatment.
Our purpose was to design a training curriculum to provide community-based outreach workers serving Native Hawaiians with cancer patient navigator skills.
The Ho`okele i ke Ola (Navigating to Health) curriculum was informed by data gathered from Native Hawaiian cancer patients and their family members, outreach workers in Native Hawaiian communities, and cancer care providers. Based on findings, the 48-hour curriculum focused on cancer knowledge, cancer resources, and cancer communications. Three versions were developed: 1) 6 days of training and on-site tours in urban Honolulu; 2) 4 days of training on a neighbor island, with 2 days of on-site tours in Honolulu; and 3) a 3-credit community college independent study course. Graduates were interviewed after each session and 3 months after graduation about application of navigation skills.
In 18 months, 62 health workers from community-based, clinical and community college settings were trained—31 in Honolulu-based trainings, 29 in neighbor island trainings where earlier graduates served as co-faculty, and 2 through Maui Community College. Follow-up data suggest increased knowledge, skills, capacity, and feelings of competence among trainees.
All three versions of the Ho`okele i ke Ola curriculum, developed with community input, have proven successful in increasing cancer patient navigation skills of trainees.
PMCID: PMC2862697  PMID: 20208313
access to health care; cancer patient navigation; case management; community health aides; oncology; Pacific Islander Americans; utilization
14.  Sustainability of the Pacific Diabetes Today Coalitions 
Preventing Chronic Disease  2009;6(4):A130.
The prevalence of diabetes is unusually high among the indigenous peoples of Hawaii and the US-associated Pacific Islands. Although diabetes programs developed elsewhere have been tried in these Pacific Islander communities, they have not been sustained. Research suggests that program sustainability is enhanced by the presence of a champion, the fit of the program in an organization, and assistance from stakeholders.
In 1998, the Pacific Diabetes Today Resource Center, funded by the Centers for Disease Control and Prevention, applied a community-empowerment approach to diabetes programming, providing training and technical assistance to coalitions in 11 US-associated Pacific Islands communities. When funding ended in 2004, many of the diabetes programs continued. In 2008, we revisited the 11 communities to examine the vitality of their diabetes coalitions and factors that were known to sustain the programs.
We interviewed coalition representatives in each of the 11 communities about diabetes-related programming developed from 1999 through 2003 and factors influencing sustainability of diabetes-related activities.
Coalitions that continued the diabetes programming they developed for or adapted to their communities had community leaders (or champions), found supportive organizational homes for the programs, and had assistance. Four case studies show how these factors affected successful coalitions.
Freedom to adapt programs to new cultural contexts was a key factor in sustaining diabetes programs in the region.
PMCID: PMC2774644  PMID: 19755006

Results 1-14 (14)