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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. - PowerPoint PPT Presentation
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Community-Driven Efforts to Mobilize a Response to
CancerCancer Council of the Pacific
Islands51st 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
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)
Pacific Cancer
CoalitionUniversity of
HawaiiCancer 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
Pacific Cancer Control Programs & Partners
University of Hawaii JABSOM
Department of Family Medicine(administrative, technical
assistance)
Regional Comp Cancer
Regional CancerRegistry
Pacific Center of Excellent in the Elimination of Disparities
(Pacific CEED)
RMI
Guam
CNMI
American Samoa
Palau
Kosrae
Chuuk
Pohnpei
Yap
FSM
University of Hawaii Office of Public Health
Sciences
Pacific Islands Health Officers Association
(PIHOA)Overarching advisory
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, email local
networks• Starting Nov 2011: Active working groups
inclusive of regional partners
1997 PIHOA (Guam) and PBMA (YAP) 1999 Evaluation of CA in the USAPI, Nauru and
Kiribati 2000 ICC amends mission statement2001 NCI - Center to Reduce Cancer Health
DisparitiesUSAPI Assessments 2002
2002-03 PBMA meeting - Regionalization Cancer Council of the Pacific Islands (CCPI)
formed2004 PACT HRH/Continuing Ed/ICT assessments2004 CDC Comprehensive Cancer Planning Development of Community-Coalitions, Plans2005 Regional Registry Assessment2007 PIJ Liaison Representative to National
Partnership2007 June CCC Implementation awards / Pacific
Registry2007 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 2002-2004
• 2 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 regionally2002 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 2nd leading cause of death in
most areas
Initial regional mobilization: Pacific Cancer Initiative 2002-2004
• 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 (2002-2008)
• Asian Pacific Islander American Health Forum / API National Cancer Survivors Network (since 1997)
• HRSA BHPr Pacific Association for Clinical Training (2003-08)
• National Partnership for CCC (since 2003)
• CDC DCPC Comprehensive Cancer Control Planning (2004-07)
• 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
U.S. Federal Funding for Pacific Cancer Control Efforts
$0
$500
$1,000
$1,500
$2,000
$2,500
$3,000
$3,500
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Fiscal Year Ending
Th
ou
sa
nd
s
CDC Pacific Center ofExcellence
CDC CCC RegionalImplementation
CDC CCC JuridictionImplementation
CDC NPCR RegionalRegistry
HRSA Pacific Assn forClinical Training
CDC CCC JurisdictionImplementation
NCI/NIH PacificCancer Initiative
Total CDC funding for REGIONAL PROGRAMS 5 years (2007-2012): $8,089,029
$20M 2002-2012
Regional CCC Plan Implementation2012-2017 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 2012-2017 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 2012-2017 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