Community-Driven Efforts to Mobilize a Response to Cancer Cancer Council of the Pacific Islands 51 st PIHOA Meeting * November 14, 2011 * Honolulu, HI Johnny Hedson, President, CCPI Pohnpei State DHS

Objectives Describe the principles underlying the Pacific Cancer Control efforts from 2000 to present Describe the organizational structure used to respond to community needs and readiness Describe the comprehensive cancer planning and control process Describe the impact of regional and jurisdiction comprehensive cancer control (CCC) efforts

CCPI Mission Statement Improve the health and welfare of the people of the Pacific through the development of cancer programs, best practices, activities, outreach, education, planning and programs

Principles of Development and Operation High level of community (stakeholders): Participation Engagement A Cancer Control Plan: – Comprehensive – Developed by all stakeholders – Informed by assessments and dynamic

Organizational Structure An organization which can – develop the cancer control plan – operationalize the plan – evaluate the plan and action – fund the plan and organization – respond quickly and appropriately (dynamic) to adjustments at the jurisdiction, regional, national, international levels

Definitions Comprehensive Cancer Control Plan is analogous to the NCD Roadmap Mobilization Framework == (Comprehensive Cancer Control Organization Network)

Definitions- Comprehensive Plan Comprehensive across the spectrum of disease – Primary Prevention – Early Detection & Screening – Treatment – Quality of Life / Survivorship – Cross-cutting principles: data & evaluation, policy – (Social Determinants) – (Disparity) Comprehensive with multisectoral and transdisciplinary participation

Who Does the Planning Jurisdiction – Cancer Coalition Cancer Coordinator – Stakeholders Physician, nurses. policy makers, health administrators, cancer survivors, educators, faith based leaders, traditional leaders, business sector Regional – 2 CCPI Directors from each jurisdiction appointed by Chief Health Officer – CCC coordinators from each jurisdiction

Community Broadly defined to include all stakeholders impacting control of cancer Coalitions: Community members, cancer survivors and their family/caregivers, community leaders, faith-based leaders, youth / youth programs, traditional leaders, representatives from the education, business, finance sectors, public health and clinical providers, legislators and policy makers (from municipal, state and national government), NGO/non-profit entities, others

Collaboration Goal Results of the whole should be greater than the sum of its parts – Utilize organizational and partnership strengths – Coordinate sharing of expertise – Leverage resources for collaborative efforts – Minimize duplicative efforts – Economies of Scale – More efficient utilization of existing resources

Planning Example Choose Cancer Type – Breast – Cervical – Lung – Colon – Stomach – Oral

Example - Cervical Cancer Prevention (set objective and activities) – Behavior – Vaccine (policy / resource/ considerations) Early Detection / Screening – Pap?, VIA? (policy /resource considerations) – Laboratory, training Treatment – Surgical, medical, radiological

Example - Cervical Cancer Quality of Life Data Needed for Cervical Cancer Research Needed for Cervical Cancer Social Determinants – Poverty – Lifestyle

Prioritize Importance - which cancers are the most important Which items for control of that cancer can we realistically handle and have the highest impact – Prevention ? – Treatment?

Organizational Structure Jurisdiction – 11 Coalitions (Am Samoa, RMI (Ebeye and Majuro/National), ROP, FSM (National, Chuuk, Kosrae, Pohnpei, Yap), CNMI, Guam – Each coalition has a paid coordinator Regional – Cancer Council of the Pacific Islands (CCPI) Funding and TA Support – UH – National and International Partners

Cancer Council of the Pacific Islands (Advisory Board) Cancer Council of the Pacific Islands (Advisory Board) Pacific Cancer Coalition 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 JABSOM Department 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 Kosrae Chuuk Pohnpei 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) U.S. Affiliated Pacific Island (USAPI) jurisdictions

Operations CCPI is community advisory body to all Pacific Cancer Programs Regional programs and operations designed to augment jurisdiction efforts Jurisdiction implementation: coalitions, CCC Program CCPI + CCC Coordinators  regional body – Addresses regional cross-cutting efforts in prevention  survivorship and data Regional Secretariat (UH) and TA Regional meetings twice yearly Communications: website, calls,  local networks Starting Nov 2011: Active working groups inclusive of regional partners

1997PIHOA (Guam) and PBMA (YAP) 1999Evaluation of CA in the USAPI, Nauru and Kiribati 2000ICC amends mission statement 2001NCI - Center to Reduce Cancer Health Disparities USAPI Assessments PBMA meeting - Regionalization Cancer Council of the Pacific Islands (CCPI) formed 2004PACT HRH/Continuing Ed/ICT assessments 2004CDC Comprehensive Cancer Planning Development of Community-Coalitions, Plans 2005Regional Registry Assessment 2007PIJ Liaison Representative to National Partnership 2007 June CCC Implementation awards / Pacific Registry 2007 Sept Pacific CEED HISTORY OF REGIONALISM FOR CANCER CONTROL

What is comprehensive cancer control? CCC is a collaborative process through which a community pools resources to reduce the burden of cancer that results in: – Reduced cancer risk – Earlier detection of cancer – Better treatment of cancer – Increased quality of life – Economy of scale – Cost effective delivery of health care – Mobilization of all stakeholders

Initial regional mobilization: Pacific Cancer Initiative Representatives from each jurisdiction appointed by Chief Health Officer – One clinical sector ; one public health sector 2 per FSM State and 1 FSM National Observer Ebeye and Majuro LBJ and AS DOH – Position of influence and passionate – Willing and able to be a change agent locally Assessment of each jurisdiction’s capacity to address cancer – Medical model Formally became the known as the Cancer Council of the Pacific Islands (CCPI) in 2003

Reasons to mobilize regionally 2002 Cancer Assessments Lack of systems to prevent and control cancer and NCD Inadequately trained health (and related) workforce Uncoordinated or lacking data Leading cause of death = NCD (Diabetes, CAD, Tobacco-related) Cancer 2 nd leading cause of death in most areas

Initial regional mobilization: Pacific Cancer Initiative Cr0ss-cutting themes across jurisdictions – Health workforce training needs across the health system – Inconsistent and lacking data – Need for consistency and standards Regional structure needed to augment jurisdiction efforts – Economies of scale – Cost effective use of limited resources Funding sought and obtained from CDC to develop CCC Coalitions and Programs in the jurisdictions and region

Impacts of Regional CCC Mobilization 11 funded jurisdiction CCC coalitions and programs Cancer registry in each jurisdiction and the region Uniformly reported cancer data from 2007 diagnosis year Building local evaluation capacity Curriculum: Program Planning & Evaluation, Project Evaluation FSM and RMI National Guidelines FSM Tobacco Summit and followup Expanded community engagement in prevention & screening Improved screening for cervical cancer Curriculum: Palliative Care, Breast & Cervical Cancer screening, FSM Curriculum to implement B&CC guidelines

Intercultural Cancer Council (since 2000) NCI/NIH Pacific Cancer Initiative ( ) Asian Pacific Islander American Health Forum / API National Cancer Survivors Network (since 1997) HRSA BHPr Pacific Association for Clinical Training ( ) National Partnership for CCC (since 2003) CDC DCPC Comprehensive Cancer Control Planning ( ) CDC DCPC Discretionary funding Registry assessment / feasibility study (2005) CDC DCPC Comprehensive Cancer Control Implementation CDC DCPC Pacific Regional Registry CDC REACH US Center for Excellence in the Elimination of Disparities (CEED) CDC DCPC Discretionary funding HPV/Cervical Cancer prevention & screening project Partnerships in USAPI Cancer Control

Total CDC funding for REGIONAL PROGRAMS 5 years ( ): $8,089,029 $20M

Regional CCC Plan Implementation Principles Collaboration with other USAPI Regional organizations is critical as PIHOA, the region and each USAPI jurisdiction systematically works to improve health systems Comprehensive across the spectrum of disease, with multisectoral and transdisciplinary participation Capacity Building to strengthen local implementation efforts and move towards more sustainable models of cancer and NCD control efforts Community remains in control of the Plans – Active involvement of jurisdiction representatives to Regional Pacific Cancer Coalition (CCPI, CCC Program Coordinators) – Integrally involved in the cycle of Planning  Implementation  Evaluation

Collaborative Development of Regional CCC Plan May 2011: PPTFI, PCDC Presidents invited to CCPI mtg – CCPI membership already includes reps of PIPCA (Pres), PCDC, PPTFI, PBMA PIHOA HIS, PIHOA PHII Technical Working Group Breast and Cervical cancer program managers – Working groups to develop priority objectives and strategies for each goal area

Collaborative Development of Regional CCC Plan Nov 9-12, 2011 in Guam: – PPTFI, PCDC, PBMA Presidents – reps/input from CNMI and Guam breast & cervical cancer screening, CNMI MCH, Guam Tobacco and BRFSS mental health, Palau and Guam cancer registries, Regional cancer registry Workgroups refine and prioritize objectives and strategies, develop 1-2 year workplan for at least 1 collaborative strategy Reaffirmed guiding principles of collaboration and regional CCC mobilization framework

What is Possible with the regional model Policy can be addressed – FSM National Breast and Cervical Cancer Standards Entire spectrum: prevention  palliative care – Cancer Screening Standards in RMI – Work with Tobacco and Cancer Coalitions to develop tobacco policies in FSM – Reporting legislation & policies for Cancer data Information and Management System – Medical records and HIS interface

What is possible? Strengthen Health Care Services – VIA training – HRH training in the spectrum of cancer care Screening, some treatment, palliative care Effective Community Engagement including NCD Policy Regional Sharing and collaboration – We need all professional organizations and NCD organization to help us

What is possible organizationally Each collaborating organization maintains its identity Each collaborating organization becomes stronger Community is engaged