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

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)

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

What is possible organizationally

• Each collaborating organization maintains its identity

• Each collaborating organization becomes stronger

• Community is engaged