Community-Driven Efforts to Mobilize a Response to Cancer

1. 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

2. 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

3. 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

4. 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

5. 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

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

7. 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

8. 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

9. 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

10. 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

11. Planning Example • Choose Cancer Type • Breast • Cervical • Lung • Colon • Stomach • Oral

12. 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

13. Example - Cervical Cancer • Quality of Life • Data Needed for Cervical Cancer • Research Needed for Cervical Cancer • Social Determinants • Poverty • Lifestyle

14. 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?

15. 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

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

17. 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

18. History of REGIONALISM for cancer control • 1997 PIHOA (Guam) and PBMA (YAP) • 1999 Evaluation of CA in the USAPI, Nauru and Kiribati • 2000 ICC amends mission statement • 2001 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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

25. Total CDC funding for REGIONAL PROGRAMS 5 years (2007-2012): $8,089,029 $20M 2002-2012

26. 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

27. 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

28. 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

29. 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

30. 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

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