A. Comprehensive Cancer Control: Prevention, Planning and Epidemiology

Two activities are described (pages 1-7 and on pages 8-10, respectively)

Graphics - to be developed

1.   Activity: Comprehensive Cancer Control

2.   Project Leader: Stanley H. Weiss, MD, FACP; weiss@umdnj.edu
Web sites:    www.umdnj.edu/evalcweb/ http://health.groups.yahoo.com/group/ce_nj/

Other faculty:

NJMS, Department of Preventive Medicine: William Halperin, MD; Judith S. Cohn

NJMS, Department of Medicine: David Hom; Diana DeCosimo, MD; Charles Cathcart, MD

NJMS, Department of Family Medicine: Jeanne Ferrante, MD

NJDS: Arnold Rosenheck, DDS;

School of Public Health: Judith B. Klotz, MS, DrPH ; Marcia M. Sass, ScD

School of Nursing: Jeffrey Backstrand, PhD

3.   Brief statement of mission and/or vision:

To reduce the burden of cancer for all New Jersey residents through an �integrated and coordinated approach to reduce the incidence, morbidity, and mortality of cancer through prevention, early detection, treatment, rehabilitation, and palliation.� (CDC definition of comprehensive cancer control)

4.   Collaborators and Staff:

Collaborators

• Task Force on Cancer Prevention, Early Detection and Treatment in New Jersey (�the Governor's Task Force on Cancer�) � http://www.state.nj.us/health/ccp/tf.htm

• Office of Cancer Control and Prevention, New Jersey Department of Health and Senior Services (NJDHSS) � http://www.state.nj.us/health/ccp/

• UMDNJ-NJMS Clinical Research Group � http://clinicalresearch.umdnj.edu/crg/

• UMDNJ School of Public Health � http://sph.umdnj.edu/

• Battelle Centers for Public Health Research and Evaluation � http://www.battelle.org/hhs/cphre/

• New Jersey State Cancer Registry � http://www.state.nj.us/health/cancer/njscr1b.htm

• Center for Health Statistics, NJDHSS � http://www.state.nj.us/health/chs/

• New Jersey Cancer Education and Early Detection (NJCEED)

• National Cancer Institute's Atlantic Region Cancer Information Service � http://www.fccc.edu/patient/cis.html and http://cis.fccc.edu/

• American Cancer Society � http://www.cancer.org/

• UMDNJ Institute for Elimination of Health Disparities � http://www2.umdnj.edu/iehdweb/

• ProstateNet � Virgil Simons � http://www.prostate-online.org/

• UMDNJ-University Hospital � http://www.umdnj.edu/uhnetweb/ (internal) or http://www.theuniversityhospital.com/ (external)

• St. Michael's Medical Center � http://www.cathedralhealthcare.org/stmichaels/

• Community Planning and Advocacy Council (CPAC) � Jean Mouch, MD, MPH and Robert Allen, MPA � http://www.cpachvi.org/

Current Full-time Staff, NJMS Department of Preventive Medicine and Community Health

• Daniel M. Rosenblum, PhD, rosenbdm@umdnj.edu

• Azadeh Tasslimi, BA, tassliaz@umdnj.edu

• Jung Y. Kim, MPH, kimjy@umdnj.edu

•  Punam Parikh, MPH, parikhp1@umdnj.edu

Other UMDNJ Staff (including part-time and past employees)

•  Susan Collini, MPH (through June 2004)

•  Alan C. Diamond, BS (through June 2004)

•  Shelly Gelbman

• Eduardo Iturrate, BS

•  Loretta L. Morales, MPH

•  Marielos Vega, RN

5.   Specifics about activity:

a.   Statewide Cancer Capacity and Needs Assessment Initiative

The purpose of this initiative was to document each county's demographics, resources, and cancer epidemiology and to make recommendations based on these data, as part of a statewide assessment. County-level cancer epidemiologic data included the incidence, mortality, and estimated prevalence, as well as proportions diagnosed at each stage, for all cancers and for each of the seven priority cancers of the New Jersey Comprehensive Cancer Control Plan (breast, cervical, colorectal, lung, oral, and prostate cancer, and melanoma). The identification of major gaps in cancer resources and of disparities in cancer rates in each county led to the identification of populations of focus and recommendations for improvement, to be implemented by each county's newly formed cancer coalition.

The Cancer Capacity and Needs Assessments provide detailed baseline assessments for each county. The data, interpretations, and recommendations in these reports were developed to provide a wide array of public health and medical personnel with standardized information and detailed analyses that can help guide and focus their efforts at the county level, including such local health initiatives as the forthcoming Community Health Improvement Plans. The reports from all of the counties will collectively inform the continuing comprehensive cancer control efforts and policies of the Office of Cancer Control and Prevention of the New Jersey Department of Health and Senior Services (cf.: http://www.state.nj.us/health/ccp/ ) and the Governor's Task Force on Cancer Prevention, Early Detection and Treatment in New Jersey (cf.: http://www.state.nj.us/health/ccp/tf.htm ).

Dr. Weiss, his staff, and collaborators/consultants provided guidance and training throughout the development and implementation of this initiative, including (but not limited to) the following:

• Guidelines for developing the Capacity and Needs Assessment, consisting of detailed guidance for each section, including presentation of data, appropriate data sources, interpretation of data, and formatting issues;

• Training on the use of Epi Info for analyzing cancer resource data and statistical analysis of cancer epidemiological data in MS Excel;

• Development of a glossary of cancer-related terms;

• Technical review and editing of all Report Summaries; and

• Development of guidance documents for County Cancer Coalition Building Activities Report.

b.   Cancer Resource Database of New Jersey

After reviewing existing sources of information concerning cancer resources and capacity, it was determined that a comprehensive new assessment and data collection system were needed.

To address the need to systematically collect, organize, update, and analyze resources available in each county, the Cancer Resource Database of New Jersey (CRDNJ) was developed by Dr. Weiss (and his staff at UMDNJ) and Ms. Peg Knight (and her staff at NJDHSS). The database design and process were guided by past best practices, in particular building on those established by the American Cancer Society (ACS). Standardized forms were developed for systematic collection of resource data; these were submitted to UMDNJ-NJMS's Clinical Research Group [DMR1] , where they were proofread and compiled using TELEform ® V5.0 Elite from Cardiff� software, to create MS Excel and MS Access databases that formed the foundation of the CRDNJ. Later efforts transformed the database using CDC's EpiInfo� software.

Each county's resources for cancer prevention, screening, and treatment were included in the CRDNJ. The goal of this baseline resource assessment was to ascertain 100% of hospitals, federally qualified healthcare centers (FQHC's), hospices, CEED agencies, and mammography centers in each county. It was delegated to each county to determine which other healthcare facilities, physician practices (in particular, gastroenterologists and others involved in colorectal cancer screening, as well as freestanding oncology clinical practices), faith-based organizations, schools, and workplaces were important to capture in the CRDNJ. Through this effort, data on 2,744 facilities and 443 activities conducted by various organizations were collected.

The American Cancer Society (ACS) maintains a national call center through which patients and healthcare providers can obtain referrals to local cancer resources. Because the database supporting their call center currently has only about 300 entries for New Jersey resources, the CRDNJ represents a quantum leap in available cancer resource data for New Jersey. A new collaboration with the ACS is now being developed, in which CRDNJ data will be the pilot for ACS's new web-based national call center resource database, serving as the source of information used by the ACS's national call center to refer callers to local resources. The ACS determined through the development of this new initiative that New Jersey is the only state with data this comprehensive and up-to-date.

c. Geographic Information System incorporating the CRDNJ

Development of a Geographic Information System (GIS) incorporating the CRDNJ is expected, among other things, to improve identification and analysis of medically underserved areas. Thus, it will facilitate subsequent cancer control planning at the local, county, and state levels by linking the resource data with various other geographic data files ( e.g. , socioeconomic, cancer epidemiology statistics, transportation).

Components of the CRDNJ will be linked with other geocoded data on sociodemographics, Behavioral Risk Factor Survey results, etc., with the possibility of mapping at the census tract, municipality, zip code, county, and state levels, for the benefit of researchers and health planners on the one hand and the general public, including patients and their families, on the other. The research-oriented and public health application can assist in such cancer control planning tasks as: identification of areas where there are gaps in cancer services; understanding barriers to access among specific populations, ( e.g. transportation, lack of translation services, lack of insurance, insufficient capacity at facilities�especially screening facilities, lack of oncology services, etc.); determining where to allocate funding and new cancer-related healthcare facilities and/or providers, and where to direct various cancer resources ( e.g. screening programs, support groups, culturally-sensitive messages and tailored education, etc.) based on the demand, need, and sociodemographic factors.

d.   County Cancer Coalitions in General and Essex County in Particular

Concomitant with the development of the Capacity and Needs Assessments (C/NAs) was the formation of county cancer coalitions, bringing together as broad an array as possible of the various stakeholders in cancer prevention, early detection and treatment in the respective counties. These were often built on the existing CEED coalitions mandated by the CDC. Guided by the findings of their C/NAs, the county cancer coalitions function as the local implementers of the NJ-CCCP. Dr. Weiss and members of his group coordinated the initial development of these coalitions and of their reporting and evaluation, helping to provide the basis for the OCCP to obtain grant funding which has now enabled it to fully assume the responsibility for this supervision.

In addition, Dr. Weiss's team hosts the leadership of the Essex County Cancer Coalition, along with Dr. Diana R. DeCosimo, Principle Investigator for the University Hospital SAVE program (one of the two CEED programs in Essex County). Dr. Weiss has received a 2 ½ year grant from the NJDHSS (January 2005 � June 2007) for continuing support of the Essex County Cancer Coalition. Ms. Azadeh Tasslimi and Ms. Punam Parikh, from Dr. Weiss's staff, are the co-coordinators of the coalition. A list-serve and web-site exist to support the missions of the coalition and its committees.

[DMR2]

e.   Evaluation of the New Jersey Comprehensive Cancer Control Plan

The New Jersey Comprehensive Cancer Control Plan (NJ-CCCP) [DMR3] was developed during 2001-2002, under the aegis of the Governor's Task Force on Cancer Prevention, Early Detection and Treatment in New Jersey [DMR4] , its associated ten workgroups and three committees, and the NJDHSS's Office of Cancer Control and Prevention (OCCP) [DMR5] , as a five-year plan for the period 2003-2007. The published plan includes a hierarchy of 56 goals, divided into 104 objectives, further subdivided into 319 measurable strategies for change, with target years for completion. (An additional 4 goals, 10 objectives, and 30 strategies were added subsequent to publication.)

Dr. Weiss instigated and oversaw the development of a database (by Battelle CPHRE with the collaboration of members of Dr. Weiss's group) that serves the purposes of providing an index into the goals, objectives and strategies of the plan and of tracking progress toward the timely accomplishment of the Plan's 349 strategies. This database, centrally managed at the OCCP with the collaboration of Dr. Weiss and his group, allows each workgroup and committee of the Task Force to track its own strategies, while global modifications and reporting are reserved to the OCCP. The database, implemented in MS Access, has a rich structure including extensive data entry and reporting capabilities. Utilization of its major capabilities began early in 2004, with Dr. Rosenblum leading the development of additional capabilities by both Battelle CPHRE and Dr. Weiss's group.

f..   Library Initiatives

The OCCP (Ms. Knight) and UMDNJ (Dr. Weiss) have been collaborating with the State Librarians and Ms. Cohn, Associate Vice President for Scholarly Information/University Librarian. and other librarians at UMDNJ on a series of endeavors to expand access to reliable health information, particularly for the elderly and medically underserved populations. The web site www.healthynj.org , developed and maintained by the librarians, focuses on all health issues. It currently has limited information specific to cancer, but the existence of its administrative infrastructure provides a foundation to develop widespread dissemination of cancer-related information in the future. All parties recognize the crucial nature of education and of information dissemination as part of comprehensive cancer control efforts. Expansion of the www.healthynj.org site may be an efficient mechanism and nexus for promulgating cancer-related information to the public. Other relevant web sites newly developed for this project are based at the OCCP and UMDNJ web sites, and integral linkages between these two sites have already been developed.

g.   Evaluation of the Prostate Net's pilot �Wireless� Barbershop Initiative

The Barbershop Initiative focuses on the development of established community laypersons (barbers) as an extension of or bridge to the medical community, in order to develop an information/resource network to provide culturally credible, disease-specific information within minority communities particularly affected by prostate cancer. Dr. Weiss and his staff are assisting the Prostate Net in its evaluation of pilot programs introducing the use of kiosks with display brochures plus interactive computers in 30 barbershops nationwide. An initial focus is planned to include Essex County, and especially Newark. Evaluation will focus on the effectiveness of training and factors that increase the effectiveness of the barber as a change agent within the community. The data generated from the pilot program will be used to support full-scale rollout of this program nationally.

6.   Publications from project:

•  Task Force on Cancer Prevention, Early Detection and Treatment in New Jersey, State of New Jersey Department of Health and Senior Services, Office of Cancer Control and Prevention. "New Jersey Comprehensive Cancer Control Plan. Report to the Governor" 2002, which is available at: http://www.state.nj.us/health/ccp/ccc_plan.htm . Dr. Weiss had the following roles in the development, writing and editing of this Plan (which underwent external peer review):

•  Author: The Burden of Cancer in New Jersey (pp. xi-xviii)

• Co-chair of Section I, Overarching Issues (Access and Resources; Advocacy; Palliation; Nutrition and Physical Activity; Childhood Cancer) (pp. xix-xx; 1-80)

• Co-author: Section I, Overarching Issues. Chapter 1: Access and Resources (pp. 2-16)

•  Co-author: Section II, Site-Specific Cancers. Chapter 6, Breast Cancer (pp. 81-110)

• Co-author: Section III, Chapter 13. Emerging Trends (pp. 229-258)

•  Author, Section III, Chapter 13. Emerging Trends, "Infection and Cancer"

•  Epstein-Barr virus (pp. 237-238)

•  Cancers associated with the human immunodeficiency virus (HIV) epidemic (pp. 238-240)

• Helicobacter pylori (pp. 240-243)

•  Human papillomavirus (pp. 243-244)

• Liver cancer (pp. 245-246)

• [References for these sections above appear on pp. 249-258]

• Co-author: Section III, Chapter 15, Evaluation (pp. 267-272)

•  New Jersey Statewide County-based Cancer Capacity and Needs Assessment Initiative, 2003-2004. Editors: Stanley H. Weiss (UMDNJ) and Margaret L. Knight (NJDHSS). June 2004. There are 21 volumes (one for each NJ county), about 400 pages each, total ~ 9,000 pages.

• New Jersey Statewide County-based Cancer Capacity and Needs Assessment Initiative, 2003-2004 Executive Summaries. Editors: Stanley H. Weiss (UMDNJ) and Margaret L. Knight (NJDHSS). June 2004. Approximately 800 pages. Includes one report for each New Jersey County plus related information.

•  County Cancer Coalition Status Reports - New Jersey Statewide Initiative, 2004. Editors: Margaret L. Knight (NJDHSS) and Stanley H. Weiss (NJMS-UMDNJ). June 2004. Approximately 200 pages. Includes one report for each New Jersey County plus related information.

7.   Other related websites:

www.umdnj.edu/evalcweb/

www.state.nj.us/health/ccp/

www.cdc.gov/cancer/ncccp/

8.   Opportunities for students:

Opportunities are available for students to work on these and other projects. Financial support is limited to federal work-study positions and summer research positions. Contact Dr. Rosenblum at rosenbdm@umdnj.edu

9.   Opportunities for volunteers:

Opportunities are available for volunteers to work with Dr. Weiss and staff. Volunteers should contact Dr. Rosenblum at rosenbdm@umdnj.edu

Opportunities are available for volunteers to be trained as patient navigators in the Newark Barbershop Initiative, to help patients navigate the health care system; volunteers with current involvement in the community, particularly a local barbershop, are preferred. Volunteers should contact Dr. Weiss at weiss@umdnj.edu

10.   Hidden text and keywords

cancer; cancer screening; cancer prevention; early detection; cancer resources; comprehensive cancer control; prostate cancer; cancer screening; PSA; DRE

Date Revised: 3/30/05

B.   1.   Activity: Essex County Cancer Coalition

2.   Project Leader: Stanley H. Weiss, MD, FACP, weiss@umdnj.edu

Web sites:    http://health.groups.yahoo.com/group/essexceed/

http://www.umdnj.edu/ceedweb/

3.   Brief statement of mission and/or vision:

The overall mission of the Essex County Cancer Coalition is:

•  To increase cancer awareness and reduce the impact of cancer on all Essex County residents through improved education, screening, access to treatment and follow-up.

•  To increase communication and collaboration among all stakeholders, through partnerships with health insurance companies, public health organizations, the business community, community-based organizations, healthcare providers, volunteers, cancer survivors, membership organizations (i.e. unions), the academic community, the media, and local and state government, specifically the LINCs program, to achieve an integrated program that maximizes the utilization of resources and coordinates priorities in seeking additional resources. To assist in the implementation of the evidence-based strategies and recommendations of the NJ-Comprehensive Cancer Control Plan and of the Essex County Cancer Capacity and Needs Assessment.

•  To effectively promote the goals of the NJ-CCCP throughout the county, examine and prioritize an expansion of cancer control efforts in the county (including education, screening, access to treatment and follow-up) with the inclusion of all seven priority cancers in the NJ-CCCP plus those identified to be of particular importance in the county; these currently include: breast, cervical, colorectal, oral/oropharyngeal, liver, lung, prostate, melanoma, bladder, and musculoskeletal cancers.

4.   Collaborators and Staff:

Collaborators

•  SAVE Women and Men CEED Program, UMDNJ-University Hospital � Diane DeCosimo, MD and Catherine Marcial, MA

• In the Pink CEED Program, St. Michael's Medical Center � Lois Greene, RN, BSN, MBA

•  Essex County Cancer Coalition

•  Essex CEED Coalition: cf. http://www.umdnj.edu/ceedweb/

•  William Bullock, BSEE

Staff

•  Azadeh Tasslimi, BA, tassliaz@umdnj.edu

•  Punam Parikh, MPH, parikhp1@umdnj.edu

•  Daniel M. Rosenblum, PhD, rosenbdm@umdnj.edu

5.   Specifics about activity:

a.   Cancer Capacity and Needs Assessment

The Essex County Cancer Coalition operates as a joint venture with the CEED community coalition. The County Coalition has a NJDHSS-mandate for expanded activities in order to increase awareness of cancer information and resources and to improve access to health care resources and services for Essex County residents. These expanded activities include

•  extending focus to all cancer priorities in the NJ-CCCP (breast, cervical, colorectal, lung, melanoma, oral/oropharyngeal, & prostate), not just the four cancers (breast, cervical, colorectal, and prostate) funded by NJCEED for outreach,

•  a clear county-wide mandate (the effective focus of the Essex CEED Coalition to date has primarily been Newark and the surrounding cities), and

• utilizing the NJ-CCCP and findings from the Essex County Cancer Capacity/Needs Assessment as the blueprint for developing activities and assessing priorities.

Coalition Committees: The following Committees have been created with active members from the Coalition to accomplish specific goal-oriented tasks and to allow each stakeholder to invest his/her efforts and expertise where they can be best utilized:

•  Development

• Advocacy

•  Education/Outreach

A Leadership Council serves an instrumental role in providing guidance to the other Committees and the Coalition overall.

Current Membership: Current members actively involved in the Essex County Cancer Coalition include representatives from local health departments, community-based organizations, community clinics, churches, academia, medicine, as well as, the ACS and the ACS-sponsored Newark Cancer Initiative, the County Health Officer, Prudential Inc., New Community Corporation.

b.   The Prostate Net Barbershop Initiative in Essex County

The specific role of the county cancer coalition and extent of involvement in assisting this initiative remains undetermined. However, it is clear that some involvement will benefit both the Prostate Net, the coalition and ultimately, the community.

c. Newark Health Surveys

The leaders of the coalition are providing support towards the efforts for developing health surveys concerning the Newark community. Analysis of BRFSS data in conjunction with

6.   Publications from project:

Unpublished:

(Draft) Essex County Cancer Capacity and Needs Assessment Report Summary, December 2004. In: New Jersey Statewide County-based Cancer Capacity and Needs Assessment Initiative, 2003�2004 Report Summaries , Editors: Stanley H. Weiss (UMDNJ) and Margaret L. Knight (NJDHSS).

Draft Essex County Report, June 2004. In: New Jersey Statewide County-based Cancer Capacity and Needs Assessment Initiative, 2003�2004 , Editors: Stanley H. Weiss (UMDNJ) and Margaret L. Knight (NJDHSS). 2004.

7.   Other related websites:

www.umdnj.edu/evalcweb/county/ess.html

www.state.nj.us/health/ccp/essex.htm

8.   Opportunities for students:

Opportunities may be available for students to work on these and other projects. Financial support is limited to federal work-study positions and summer research positions. Contact Dr. Rosenblum at rosenbdm@umdnj.edu

9.   Opportunities for volunteers:

The Essex County Cancer Coalition is actively seeking volunteers, especially community members, to participate and contribute to Coalition activities by becoming a member of any one of the 3 Committees (Advocacy, Education/Outreach, Development). Those interested should contact Ms. Tasslimi at tassliaz@umdnj.edu

10.   Hidden text and keywords:

cancer, CEED, cancer screening, Newark cancer resource, Essex County, coalition, outreach

Date Revised: 3/30/05