Download Community-Driven Efforts to Mobilize a Response to Cancer

Community-Driven Efforts to
Mobilize a Response to Cancer
Cancer Council of the Pacific Islands
51st 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)
U.S. National
Partnership for
Comprehensive
Cancer Control
Palau
Kosrae
Chuuk
Pohnpei
Yap
F
S
M
Pacific
Cancer
Coalition
U.S. Affiliated
Pacific Island
(USAPI)
jurisdictions
Pacific Islands Health
Officers Association
(PIHOA)
Overarching advisory
University of Hawaii
JABSOM
Department of Family
Medicine
RMI
International
Partners with
PIHOA
(SPC, WHO)
(administrative, technical assistance)
Guam
CNMI
American
Samoa
Micronesian
Community Network &
Micronesian Health
Advisory Council
(Hawaii)
Regional Comp
Cancer
Regional Cancer
Registry
Pacific Center of
Excellent in the
Elimination of
Disparities
(Pacific CEED)
University of
Hawaii
Cancer Center
(technical assistance)
•U54 MI/CCP
Partnership with
University of Guam
•Hawaii Tumor
Registry
•Pacific Cancer
Research Group
University of
Hawaii Office of
Public Health
Sciences
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
HISTORY OF REGIONALISM FOR CANCER CONTROL
1997
1999
2000
2001
PIHOA (Guam) and PBMA (YAP)
Evaluation of CA in the USAPI, Nauru and Kiribati
ICC amends mission statement
NCI - Center to Reduce Cancer Health Disparities
USAPI Assessments 2002
2002-03
PBMA meeting - Regionalization
Cancer Council of the Pacific Islands (CCPI) formed
2004 PACT HRH/Continuing Ed/ICT assessments
2004 CDC Comprehensive Cancer Planning
Development of Community-Coalitions, Plans
2005 Regional Registry Assessment
2007 PIJ Liaison Representative to National Partnership
2007 June
CCC Implementation awards / Pacific Registry
2007 Sept
Pacific CEED
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 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 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
Partnerships in USAPI Cancer Control
• 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
U.S. Federal Funding for Pacific Cancer Control
Efforts
$3,500
Total CDC funding for REGIONAL PROGRAMS
5 years (2007-2012): $8,089,029
CDC Pacific Center of
Excellence
$3,000
CDC CCC Regional
Implementation
Thousands
$2,500
CDC CCC Juridiction
Implementation
$2,000
CDC NPCR Regional
Registry
$1,500
HRSA Pacific Assn for
Clinical Training
$1,000
CDC CCC Jurisdiction
Implementation
$500
$0
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Fiscal Year Ending
NCI/NIH Pacific
Cancer Initiative
$20M 2002-2012
Regional CCC Plan Implementation
2012-2017 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
What is possible organizationally
• Each collaborating organization maintains
its identity
• Each collaborating organization becomes
stronger
• Community is engaged