Evaluation and Implementation of State Comprehensive Cancer Control Plans: Evolving Lessons APHA 2005 Annual Meeting Epidemiology Section Session :30–2:00 PM Monday, December 12, 2005

2 Welcome Moderators: Linda Fleisher, MPH Director, Cancer Information, Education, and Research Program, Division of Population Science, Fox Chase Cancer Center Stanley H. Weiss, MD, FACP Professor, Department of Preventive Medicine and Community Health, UMDNJ- New Jersey Medical School

3 Session Overview There will be 5 presentations and a Question & Answer period

4 Session Overview 1)Enhancing infrastructure and evaluation: Collaboration with and training of local health planners to build cancer control infrastructure, and development of baseline structures to support evaluation 2)Utilizing research and data: Use of epidemiologic data in community assessments

5 Session Overview 3)Building partnerships: Local implementation, coalition building, and partnerships with other local public health agencies/organizations 4)Assessing cancer burden: Estimating and utilizing prevalence 5)Addressing cancer disparities in minority (Hispanic/Latino) communities 6)Question and Answer Period

Enhancing Infrastructure and Evaluation: Collaboration with and training of local health planners to build cancer control infrastructure, and development of baseline structures to support evaluation Stanley H. Weiss, MD Professor, UMDNJ-New Jersey Medical School and UMDNJ-School of Public Health

7 I wish to acknowledge my colleagues who have contributed to this project: Margaret L. Knight, RN, MEd Loretta L. Morales, MPH Daniel M. Rosenblum, PhD Sharon L. Smith, MPH Jung Y. Kim, MPH Susan L. Collini, MPH Judith B. Klotz, DrPH Marcia M. Sass, ScD David L. Hom, MS Arnold M. Baskies, MD

8 Background Executive Order 114: OCCP and the Governor ’ s Task Force established 1 st New Jersey Comprehensive Cancer Control Plan released 1 st Status Report to the Governor submitted (required biennially) First 5-year plan: 2003 – 2007 MayJanuaryDecember   

9 NJ-CCCP Organizational Structure

10 Background Began with 350 volunteers from various disciplines Currently over 550 volunteers These volunteers are stakeholders representing clinicians, public health officials, survivors and their families, community-based organizations, advocates, administrators, insurers, researchers

11 Cancer ranks as one of the top health concerns of NJ residents in opinion surveys Yet no comprehensive capacity and needs assessment had ever been conducted in NJ No inventory of cancer-related resources available on a statewide basis Difficulty tracking progress of implementation of the NJ-CCCP Background

12 Identification of Needs 1) Data and Data Systems: Baseline capacity and needs assessment  To understand cancer burden and disparities in each county and statewide  To compare data from one county to each other and to the state as a whole  To understand current cancer-related services, resources, and gaps in New Jersey Mechanisms to systematically collect data to monitor the extent of progress

13 2) Partners who have relevant expertise Data and scientific expertise:  State Cancer Registry  State BRFSS Epidemiologist-Coordinator  NCI’s Regional Cancer Information Service  Public health, epidemiology, and statistical experts  Industry and academia  Workgroups and their Chairs Health services and planning:  NJCEED Program  Cultural competency experts  Local health planners Identification of Needs

14 Identification of Needs Identifying what data are needed helps define  Most appropriate personnel to recruit  Type of data systems  When to develop data systems  How to build in mechanisms for evaluation

15 Implementation of NJ-CCCP Ten Workgroups Local NJCEED programs and county cancer coalitions Each group identifies areas of focus and strategies to address Synergy among Workgroups and local cancer coalitions and other organizations encouraged

16 Implementation of NJ-CCCP Strategy Tracking Database Supports implementation of NJ-CCCP strategies and related tasks by monitoring of those strategies ’ progress Electronic version of the NJ-CCCP developed  Index of goals, objectives, and strategies  Electronic linking between key elements (strategies, timelines, and key parties responsible for implementation) Activity reports generated every 6 months, with Workgroups updating progress on specific strategies

17 Implementation of NJ-CCCP Sample strategy progress report

18 Implementation of NJ-CCCP Sample strategy progress report, continued

19 Capacity & Needs Assessment Baseline Capacity and Needs Assessment (C/NA) in each county was one of the first implementation steps of the NJ-CCCP Major components required for all reports: 1.Demographics and local infrastructure (e.g., transportation) 2.Resources (e.g., health care facilities, schools, CBOs, etc.) 3.Cancer statistics 4.Recommendations that integrate the first three components

20 Capacity & Needs Assessment Local health planners - County Evaluators (CEs)  Already involved in local community  Experience with health services and planning  Responsible for conducting the C/NA and formulating recommendations for action for implementation at the county and state level

21 Capacity & Needs Assessment Due to varying levels of knowledge in epidemiology and statistics, we provided training for all CEs to gain a basic understanding of key concepts Training  5 training sessions in 2003 (FY)  11 monthly follow-up meetings in 2004 (FY) Monitoring  Extensive report guidelines, including guidelines for data use and analysis, developed and updated for full report and report summary  Peer-review processes established  Process evaluation for each training session

22 Capacity & Needs Assessment Accountability Public availability of final reports, including posting on the internet Attribution of authorship, to ensure professionalism and accountability of the highest level Encouragement (and sometimes requirement) of collaboration among CEs Goal: All counties to reach for excellence

23 Capacity & Needs Assessment To address the need for information on resources in each county, the Cancer Resource Database of New Jersey (CRDNJ) was developed Comprehensive delineation of cancer- related resources available in each county  hospitals, federally qualified health centers, hospices, CEED agencies, mammography facilities, gastroenterologists, support services, etc.

24 Capacity & Needs Assessment Sample analysis of CRDNJ data

25 Capacity & Needs Assessment Development of the CRDNJ  Standard data collection forms were based on forms shared by the American Cancer Society, which we extensively modified  Centralized data processing, analysis, and cross- checking  Identifying all resources is extremely difficult due to funding and time limitations Collected at local level on statewide basis Informs the public, local health planners, service providers, outreach workers, and researchers Data have been geo-coded for GIS applications

26 Capacity & Needs Assessment Sample map of CRDNJ data using GIS technology: Data for Camden County Hospitals Prepared by CPAC 2004 # of persons ≥ 60 yrs 1. Cooper Hospital 2. Our Lady of Lourdes Medical Center 3. Kennedy Memorial Hospital, Cherry Hill 4. Virtua West Jersey, Voorhees 5. Kennedy Memorial Hospital, Stratford 6. Virtua West Jersey, Berlin

27 Capacity & Needs Assessment Strengths of community-based personnel  Fits New Jersey culture, “ home rule ”  Often native to local area, understands nuances of community  Strengthens and invests in the local community infrastructure  Ideal for assessments at the local level  Improved buy-in from local community Strengths of using consultants for epidemiology and statistical analyses  Specialized training, knowledge, experience  Objectivity  Scientific review

28 Local Infrastructure Expansion of coalition building into countywide entities through NJDHSS funding Many County Evaluators evolved into role of the County Cancer Coalition Coordinator

29 Local Infrastructure “Local experts” who are well-versed in both community outreach and epidemiology/statistics  Training can provide basic knowledge/skills  But, based on our experience, developing all skills within one position may not be realistic  In order to complete the C/NA, individual CEs evolved into teams

30 Summary Critical factors for successful implementation  Leadership, coordination and integration of all activities by State Health Agency (OCCP)  Scientific experts to give direction on epidemiological and methodological aspects and database development (UMDNJ)  Qualified, motivated, local health planners  Cooperation among all partners

31 Summary Development of new data systems to fill data gaps should be built into planning and implementation timelines. Systematic analyses can lead to the development of more specific and detailed recommendations to improve execution of current and planning for future comprehensive cancer control plans. Details will be exemplified in the presentations that follow.