Applying CBPR and Partnership Principles to Reduce Cancer Disparities in the Pacific: Lessons Learned from the Pacific Regional Cancer Cancer Coalition Partnership Assessment American Public Health Association November 8, 2010 Pacific Center of Excellence in the Elimination of Disparities (Pacific CEED) Department of Family Medicine and Community Health John A. Burns School of Medicine, University of Hawaii

Funding Funding for this project was made possible by a cooperative agreement from the US Centers for Disease Control and Prevention, REACH US through Pacific CEED, award number 5U58DP000976

Acknowledgements Cancer Council of the Pacific Islands (CCPI) - Directors Comprehensive Cancer Control (CCC) Coalitions – Chairs and CCC Program Coordinators X-ner LutherCCC- Pohnpei Martina ReichhardtCCC-Yap Kino S. RubenCCC- Chuuk Nena TolenoaCCC- Kosrae Cerina MarianoCCC- Guam Joanne OgoCCC- CNMI Darnelle WorswickCCC- Palau Va’a Tofaeono CCC- American Samoa Robert JacksonFSM- National Jennifer PalemarYap CCC Prog Kennedy RemitCCPI-Chuuk Roselie V. ZabalaCCPI- Guam Jocelyn SongsongCCPI-CNMI Sylvia Osarch CCPI-Palau Johnny HedsonCCPI- Pohnpei John GilmatamCCPI- Yap Frita IronsCCPI- Chuuk Livinson Taulung CCPI-Kosrae Yorah DemeiCCPI- Palau John TaitanoCCPI - Guam

Acknowledgements Other: Johnny Hedson, MBBS, MMed(Surg), President, Cancer Coalition of the Pacific Islands Nancy Van Devanter, DrPH, B-Free CEED Coalition, NYU

Authors and Affiliations Angela Sy, DrPH, Office of Public Health Sciences and Pacific CEED, John A. Burns School of Medicine, University of Hawaii at Manoa, Honolulu, HI Karen A. Heckert, PhD, MPH, MSW, Pacific CEED and Department of Family Medicine and Community Health, University of Hawaii, John A. Burns School of Medicine, Honolulu, HI Lee Buenconsejo-Lum, MD, Department Family Medicine and Community Health, John A. Burns School of Medicine, University of Hawaii, Mililani, HI Suresh Tamang, MBA, Pacific CEED and Myron B. Thompson School of Social Work, University of Hawaii at Manoa, Honolulu, HI Neal Palafox, MD, MPH, Department of Family Medicine and Community Health, University of Hawaii, John A. Burns School of Medicine, Mililani, HI

Background US Affiliated Pacific Islands (USAPI): 3 US Flag: Territory of Guam, Territory of American Samoa, Commonwealth of the Northern Mariana Islands 3 Freely Associated States (independent countries): Federated States of Micronesia, Republic of Marshall Islands, Republic of Palau Cancer 2 nd most common cause of death Lack of culturally appropriate preventive services and severe challenges in the health infrastructure

Geographic Area 869,540 sq. miles, 5 time zones, and international date line

Background – Community Partnerships and Coalitions A strongly held tenet in public health programs is that community participation and involvement is critical to ensure successful health interventions and research aimed to address communities. The vehicle most widely used in public health to promote community participation is the community coalition. Community coalitions are defined as “groups of individuals, factions, and constituencies who agree to work together to achieve a common goal” (Feighery & Rogers, 1989).

Background – Community Partnerships and Coalitions Coalitions strive to improve, change, and introduce innovative solutions to health problems by using existing and potential resources in effective ways. Internal participation of coalition members and external partnerships is critical accomplishing the specified goals for any community coalition and partnership.

Background – Pacific CEED In 2002, under the leadership of Neal Palafox, MD, MPH, University of Hawaii Department of Family Medicine and Community Health (DFMCH), an indigenous advisory coalition - The Cancer Council of the Pacific Islands (CCPI) was convened. Two years later, an expanded regional coalition, the Pacific Cancer Coalition that includes the CCPI, Cancer Program Coordinators and representatives from each jurisdiction, and the DFMCH was formed.

Background – Pacific CEED Using participatory approaches to focus on breast and cervical cancer and related risk factors, the Pacific Center of Excellence in the Elimination of Disparities (CEED) provides the infrastructure to implement, coordinate, refine and disseminate community and culturally relevant, effective programs. It expands partnerships at the local, regional and U.S. national levels while serving as a national expert resource center. Pacific CEED is governed by the CCPI, and funded by the CDC REACH US to support the regional coalition and evaluate cancer prevention and control activities and outcomes in the Pacific and the USAPI.

Cancer Council of the Pacific Islands (Advisory Board) Cancer Council of the Pacific Islands (Advisory Board) Pacific Cancer Coalition (U.S. Affiliated Pacific Island (USAPI) jurisdictions) University of Hawaii Cancer Center (technical assistance) U54 MI/CCP Partnership with University of Guam Hawaii Tumor Registry Pacific Cancer Research Group International Partners with PIHOA (SPC, WHO) U.S. National Partnership for Comprehensive Cancer Control University of Hawaii Dept. of Family Medicine (administrative, technical assistance) Regional Comp Cancer Regional Cancer Registry Pacific Center of Excellent in the Elimination of Disparities (Pacific CEED) RMI Guam CNMI American Samoa Palau Kosra e Chuuk Pohnpe i Yap University of Hawaii Office of Public Health Sciences Pacific Islands Health Officers Association (PIHOA) Overarching advisory Micronesian Community Network & Micronesian Health Advisory Council (Hawaii) Micronesian Community Network & Micronesian Health Advisory Council (Hawaii)

Aims To assess progress and potential for regional coalition and partnership building according to: CDC Comprehensive Cancer Coalition (CCC) and REACH US Coalition and Partnership Principles, Regional CCC 5-year Plan Regional objectives for the Pacific Cancer Programs

Aims To evaluate the sustainability of a regional initiative for underserved populations in resource limited environments, and the capacity of a representative coalition in fostering cohesive regionalism in a geographically expansive region

PRCC Self Assessment and Regional and National Partner Assessment a) Internal coalition assessment: Pacific CEED assisted the Cancer Coalition of the Pacific to carry out a self-assessment of the Pacific Regional Cancer Coalition (PRCC) based on: 1) CCC guidance on coalition building, 2) REACH US guidance on coalition building, Partnership Principles, sustainability and regionalism and 3) coalition outcomes that other CEEDs have identified. b) External coalition partner assessment: An assessment of PRCC regional and national partners was also conducted for an external partnership assessment.

Methods The CCPI President and Regional CCC Co-PI provided guidance and feedback through the phases of this project. a) Development and planning of the internal and external assessment approaches and methods b) Identification and selection of samples for the internal and external assessment c) Initial introduction and recruitment of participants d) Review and interpretation of results e) Presentation of findings

Recruitment and Sampling 1. PRCC Self Assessment: Participants for the internal assessment were the PRCC members comprised of: - CCPI members - CCC chairs - CCC coordinators

2. PRCC Regional and National Partner Assessment: Participants of the external assessment were representatives from: 1. American Cancer Society (ACS) 2. Asian Pacific Islander American Health Forum (APIAHF) 3. C-Change National 4. CDC- REACH US, B&CC 5. Intercultural Cancer Council (ICC) 6. Pacific CEED 7. Pacific Regional Central Cancer Registry (PRCCR) 8. PIHOA 9. U54 Guam Recruitment and Sampling

Data Collection PRCC Self Assessment: Self administered questionnaire: - June 2010 at CCPI meeting in Hawaii - Response rate: 74% (N=20) Key informant interviews: - Aug – Sept 2010, phone and face to face - Response rate: 27% (N=3)

Data Collection Partner Assessment: - Regional and national partner organizational representatives completed an online survey via Survey Monkey in September Response rate was 55% (N=20)

PRCC Questionnaire (Refer to instrument provided as handout) 47 questions: 10 measures of coalition and partnership characteristics Scaled items 1-5, strongly disagree – strongly agree Presentation of preliminary results and feedback provided during the CCPI Meeting in June 2010

PRCC Interview Guide (Refer to instrument provided as handout) Developed following the PRCC survey with consultation and feedback from the CCPI President 18 open-ended questions: PRCC member’s role, perceptions on the PRCC, communication with partners, goals achievement, partnership with PRCC member’s own jurisdiction, and participation in CCC evaluations Pilot tested with CCPI President

PRCC Interview Guide: Example Questions What do you see as the PRCC’s major accomplishments? In what way are you and your jurisdiction involved in evaluating the progress and achievements of the Regional Comprehensive Cancer Control Program (RCCC)? What are the benefits to your jurisdiction as a result of your involvement in the PRCC and its regional partnerships?

PRCC Partner Questionnaire (Refer to instrument provided as handout) Developed based on the PRCC questionnaire and modified to the PRCC partner organizations Feedback and approval obtained by the CCPI President and RCCC Co-PI

PRCC Partner Questionnaire (Refer to instrument provided as handout) 38 questions: 8 partnership measures Scaled items 1-5, strongly disagree – strongly agree Included 6 open-ended questions

Partnership Measures Van Devanter, N. B-Free CEED, NYU coalition evaluation: Satisfaction Organization Communication Decision making Use of findings

Partnership Measures Butterfoss, Coalitions Work, Coalition Effectiveness Inventory Self Assessment Tool Sustainability Bright, University of Wisconsin, Community Organizational Assessment Tool Regionalism Frey et al., 2006 Levels of Collaboration Scale

Data Analytical Methods Quantitative data entered or exported into SPSS. Questions combined for each scaled measure to create single measures of coalition and partnership characteristics. Chronbach’s alpha computed. Means of the scaled measures were computed.

Table 1: PRCC Self Assessment Results Characteristics# ResponsesAverageStd. Deviation # of itemsalpha Communication Respect Partnership Organization Satisfaction Regionalism Sustainability Decision-Making Resource Sharing , strongly disagree – strongly agree Mean Scores for Coalition Characteristics

Table 2: PRCC Partner Assessment Results Characteristic# ResponsesAverageStd. Deviation # of items alpha Satisfaction Resource Sharing Partnership Sustainability Use of Findings Regionalism , strongly disagree – strongly agree Mean Scores for Partner Characteristics

Table 3: Comparison of Coalition Measures Between PRCC Members and PRCC Partners PRCC MembersPRCC Partners Factors# Responses AveSD# items # Responses AveSD# items Satisfaction Regionalism Sustainability Resources Mean Scores on Common Measures 1-5, strongly disagree – strongly agree

Sustainability Measures PRCC Self Assessment 7 item Likert scaled measure: 1-5, strongly disagree – strongly agree Chronbach’s alpha = PRCC Partner Assessment 5 item Likert scaled measure: 1-5, strongly disagree – strongly agree Chronbach’s alpha = 0.758

Sustainability Measures PRCC Self Assessment Pacific Cancer Coalition is included in other collaborative efforts. Pacific Cancer Coalition’s sphere of influence includes public & private agencies & governing bodies. Pacific Cancer Coalition has access to power within legislative and executive branches of agencies and government. Pacific Cancer Coalition activities are incorporated within other agencies or institutions. Long-term funding is obtained. The Pacific Region Cancer Coalition mission is adjusted to encompass other populations and issues as appropriate. The Pacific Cancer Coalition has an up to date plan to ensure sustainability of its initiatives.

Sustainability Measures PRCC Partner Assessment My organization is included in other collaborative efforts related to the US Affiliated Pacific Island. My organization's activities are incorporated within USAPIJ regional and national agencies or institutions other than the PRCC. My organization’s sphere of influence includes public and private agencies and governing bodies. My organization has access to power within legislative and executive branches of agencies and government. My organization has obtained long-term funding. My organizations’ mission is refined or changed to encompass other populations and issues as appropriate.

Figure 2: PRCC Self Assessment Results N=15 For each Partner listed below, please circle one of the numbers which best describes the level of collaboration between that partner and the Pacific Regional Cancer Coalition. Organization Percent

Figure 2: PRCC Member Assessment Results N=10 Please indicate below the extent of collaboration between your organization and PRCC on a scale from "0 - 5": "no interaction" "collaboration."

Question ThemesCodesFrequency Goals been accomplished as a result of your organization’s partnership with the Pacific Regional Cancer Coalition? 1) Strengthen and expand regional collaboration, planning, and advocacy affecting all aspects of cancer control 2) Diagnose cancer as early as technically possible within the region 3) Improve the capacity to treat cancer effectively in the USAPI region 4) Collect, analyze, and report accurate cancer related data across the region #1 accomplished7 #2-somewhat-progress4 #3-accomplished1 #3-somewhat 3 #3 none3 #4 accomplished2 #4 progress2 Partner Assessment: Open Ended Question Selected Results

Summary - Results PRCC partners provided higher ratings on coalition and partnership measures than PRCC members o PRCC members “sustainability:” score 3.6 (SD=0.46) o PRCC partners “sustainability:” score 4.0 (SD=0.56)

Summary - Results Measures to quantify partnership principles had high internal consistency o PRCC Self Assessment: Chonbach’s alpha on most measures ranged – o PRCC Partners Assessment: Chronbach’s alpha range – 0.849

Summary - Results PRCC Self Assessment o Characteristics that scored in the higher half were internal – communication, respect, organization, satisfaction o Characteristics that scored on lower end were related to external partnerships – regionalism, sustainability, resource sharing

Summary-Results PRCC Internal and External Collaboration Collaboration is defined as “Members belong to one system, frequent communication is characterized by mutual trust, consensus is reached on all decisions” (Frey et al., 2006). Collaboration rated highest with PRCC (46.7%), Pacific CEED (40.0%), and Registry (33.3%) PIHOA was the only partner where there was “no interaction” (6.7%, N=1).

Summary-Results PRCC Partners’ Collaboration with PRCC: As an aggregate, PRCC partners indicated that its level of partnership with the PRCC was at the coalition stage, defined by “Share ideas, share resources, frequent and prioritized communication, all members have a vote in decision making” (Frey et al., 2006)

Discussion PRCC Self Assessment and Partner Assessment inform results to evaluate a regional initiative and partnership outcomes Measures related to the strength of practicing partnership principles show overall agreement and strong internal consistency

Discussion Sustainability rated lower among PRCC members (mean=3.6, SD=0.46) “[The PRCC] needs to look at capacity within the region, how to advance the capacity of local jurisdictions - training to collect, analyze data at the regional and jurisdiction level to document our activities.” “I think the immediate [step] is our structure, to make sure that exiting by-laws and any policy is being formulated in a way that addresses any challenges. It’s mainly how to keep everybody together not letting them to break down -- re-assessing the structure, looking at the [PRCC] membership and their qualities.”

Discussion Sustainability was high rated among PRCC partners (mean=4.0, SD=0.56) PRCC partners were highly satisfied with their partnership with the PRCC PRCC partners indicated accomplishment of their projects as a result of their partnerships

Discussion PRCC partners attribute their accomplishments to creating and maintaining sustainable partnerships “I've learned that it's important to establish and sustain partnerships, and that working together toward a common goal is paramount in accomplishing what we set out to do...move towards a cancer free Pacific community.” “Engagement of and ongoing support of CDC, NCI, C- Change, ACS and other national partners is critical to our sustainability and achievement as regional program/network/body.”

Recommendations – Research Conduct follow up assessment to track progress in partnership outcomes from this regional initiative Expand qualitative component, especially with PRCC membership Continue collaboration with REACH US B-Free CEED to compare and contextualize results from other coalition evaluations

Recommendations - Partnerships PRCC-- Continue to focus on internal coalition building, especially decision making Foster and sustain external partnerships PRCC partners-- Further fostering partnership with the PRCC to foster a truly regional initiative Overall, strengthen partnerships to move toward functioning as a regional initiative toward cancer prevention and control

Conclusions PRCC Self Assessment and Partner Assessment provides a valid and reliable approach to evaluate community and partnership principles in a unique geographic, cultural, and organizational environment addressing a regional cancer prevention and control initiative CBPR and partnership outcomes related to a regional initiative addressing cancer prevention and control are able to be documented as a result of this assessment

Conclusions Documenting partnership progress of a regional initiative based on partnership principles can help identify opportunities to further strengthen a regional coalition’s capacity to address cancer prevention and control in the Pacific Assessing partnership principles further informs on how to maintain and sustain coalitions as an approach address cancer prevention and control goals in a resource limited, geographically expansive environment