PAC³ Surveillance Report for General Assembly (Final)

A Surveillance Study of Available Cancer Resources in Pennsylvania and Analysis of the Pennsylvania Comprehensive Cancer Control Plan’s Implementation Background In 2001, the Pennsylvani

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A Surveillance Study of Available Cancer Resources in Pennsylvania and

Analysis of the Pennsylvania Comprehensive Cancer Control Plan’s Implementation

Background

In 2001, the Pennsylvania Department of Health was commissioned by the Centers for Disease Control and Prevention to develop the Commonwealth’s first-ever cancer control plan, a plan designed to identify ways to significantly reduce cancer in Pennsylvania In order to develop such a comprehensive plan, individuals and organizations representing the health care community, cancer research centers,

academia, community organizations, advocacy groups, business and industry, and cancer survivors joined with the Pennsylvania Department of Health and the Pennsylvania Division of the American Cancer Society to form the Pennsylvania Cancer Control Consortium (PAC³)

PAC³ worked through a very deliberate process in an open dialogue among these partners to assess the burden of cancer in Pennsylvania, identify issues that cut across all stages of the disease, from

prevention to end-of-life, examine available resources and opportunities, and design a plan that

represents a starting point for the work that needs to be done The work of PAC³ members led to the creation of the Pennsylvania Comprehensive Cancer Control Plan (PA CCC Plan)

The PA CCC Plan is a statewide blueprint for all sectors of Pennsylvania – public, academic, private, and volunteer – to work together to meet the growing challenge of cancer control The plan provides a clear, unifying vision of cancer-related priorities and the steps that must be taken to reduce the impact of cancer

on the people of Pennsylvania

Pennsylvania is a state fortunate to have a wealth of cancer-related professionals to meet the challenge, and PAC³ has galvanized those professionals, combining the existing strengths of over 400 organizations and 1100 individuals to develop initiatives to implement the PA CCC Plan PAC³ and the PA CCC Plan have identified priorities across the cancer continuum, which include:

• Prevention and Healthy Lifestyles

• Screening and Diagnostic Follow-Up

• Treatment and Care Delivery

• Quality of Life: Survivorship Through End-of-Life

Additionally, other crosscutting areas where priorities have been placed include Access to Care,

Research, Cancer-Related Information Management and Dissemination, and Patient Well-Being

Comprehensive cancer control is best achieved through a broad, collaborative partnership with a common mission to reduce the burden of cancer PAC³ serves as a model for this successful approach Through collaboration, PAC³ organizations and community partners have built a cohesive system to establish priorities and to identify, implement, and evaluate the most effective and long-lasting approaches to reduce death and suffering from cancer The focus and leadership that has been developed by PAC³ is a powerful stimulus that is poised to have a significant impact across the state, as well as to serve as a national role model

www.pac3.org

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The Pennsylvania Cancer Resource Database

In 2006, PAC³ unveiled an online database of cancer-related programs, resources, and services, known

at the time as the PAC³ Cancer Assets Inventory This online resource is designed to be a

comprehensive and searchable inventory – a centralized access point for professionals and the public – that promotes communication regarding existing programs around the state

This inventory has since evolved into the Pennsylvania Cancer Resource Database Many types of programs, from one or more areas of the cancer continuum, are listed in this online database, including, among many other programs and services:

• Cancer education programs

• Cancer prevention and screening programs

• Cancer support groups

• Community-based programs

• Drug assistance outlets

• Home health and hospice care providers

• Links to clinical trials

• Tobacco cessation programs

• Transportation services for cancer patients

This database of information also facilitates networking and collaboration to reduce the unnecessary duplication of efforts in planning and/or implementing programs The Pennsylvania Cancer Resource Database links all programs and resources directly to stated goals and objectives outlined in the PA CCC Plan

The database illustrates how Pennsylvania organizations are implementing the PA CCC Plan and reveals gaps in programs and services that will allow professionals and policymakers to strategically plan future cancer-related initiatives and allocate adequate funding to enable those programs to be effective Ultimately, the Pennsylvania Cancer Resource Database can facilitate strategic decision-making for cancer control that will result in reducing the cancer burden for the people of the Commonwealth

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Analyzing the Impact of the PA CCC Plan – A Surveillance Study

In December 2008, PAC³ expanded the Pennsylvania Cancer Resource Database’s web platform to allow

for increased search capacity and geo-spatial mapping capabilities According to a 2007 article in Health Communication, “As a visual form of communicating health information, disease maps may bridge the

gap between complex epidemiological presentations of statistics and the varied educational backgrounds represented by policymakers and other decision makers and users.” Mapping is a means by which the Pennsylvania Cancer Resource Database can be particularly useful as an analytical tool for professionals and policymakers

As of March 5, 2009, there were 575 cancer-related resources in Pennsylvania posted in the

Pennsylvania Cancer Resource Database This represents programs from over 100 organizations in Pennsylvania, but is by no means a comprehensive representation of ongoing programs available for patients and professionals This presents a problem for patients to access existing health care resources; cancer professionals who are developing new programs for the patients they serve; and, for legislators serving their constituents by appropriately designating taxpayer funding to appropriate healthcare-related programs

In order to address this, PAC³ proposes to develop the first of its kind report for health care professionals and policymakers in Pennsylvania to reflect progress being made in implementing Pennsylvania's

Comprehensive Cancer Control Plan and determine where attention is needed Such a report may be considered a “surveillance study” in that it surveys the current programs, services, and resources that are available and supporting implementation of the PA CCC Plan, while also showing where gaps in services may exist

Many cancers, when detected early, are treatable, and in many cases, curable It is with this in mind that PAC³ proposes this first report focus on Early Detection and Screening resources that are available in Pennsylvania with the long-term plan of this proposal to offer comprehensive annual analyses of

programs across the state from various areas of the cancer continuum

The proposed surveillance study will include the following components:

• Brief overview of PAC³ and the PA CCC Plan

• Stated goals and objectives established in the PA CCC Plan for Early Detection and Screening

• An overview of Early Detection and Screening activities specifically implemented by PAC³ Committees and where those activities align with PA CCC Plan goals

• Organizations that have entered assets, across all continuum areas

• Programs, resources, and services contained in the database for Early Detection and Screening and the organizations that are implementing them

• Maps of resources aligned with stated goals and objectives of the PA CCC Plan that will illustrate where programs and resources exist

• Recommendation statements from the PAC³ Board of Directors indicating priorities for action in response to the report and possible solutions to any identified gaps in care and service

* A sample of the maps and listings of resources can be referenced at the end of this summary proposal

www.pac3.org

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Benefits of a Surveillance Study

The surveillance report of Early Detection and Screening resources will serve legislators as a tool to primarily:

• Assess PA CCC Plan implementation efforts around the state

• Identify where programs and resources do and do not exist across Pennsylvania by:

o Cancer Type

o County

o Legislative Districts

o Program Types (e.g education materials, prevention programs, screening programs, support groups, etc.)

• More efficiently assist in allocating funding to address cancer-related health disparities

This report measures the scope and impact of implementation efforts across the state and the

relationships those efforts have to the goals and objectives of the PA CCC Plan

Generating this surveillance report from the Pennsylvania Cancer Resource Database provides several opportunities for, not only PAC³, but also for cancer care professionals and policymakers Cancer care professionals can more readily link their patients to available resources, thus increasing access to care

By knowing what is currently being done and assessing what needs to be done in the future, the report can also serve as a useful tool in planning and seeking support for comprehensive cancer control efforts The Pennsylvania Cancer Resource Database and the reports from which, will serve as an ongoing way for legislators and PAC³ members to monitor implementation of the Pennsylvania Comprehensive Cancer Control Plan and prioritize areas of cancer need that can most readily help Pennsylvanians

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Requirements to Develop the Surveillance Study

While the PAC³ Board of Directors, including representatives from all five of Pennsylvania’s

NCI-designated cancer centers, will continue to work with the PAC³ Coordinating Office to aggressively increase participation in populating the database, the General Assembly’s interest in this report will serve

as a statewide incentive for organizations to enter their resources thus enabling the General Assembly to

be better informed of both the efforts and needs of their constituents

By prioritizing organizations’ participation in data entry, PAC³, and thus the General Assembly, can monitor the Commonwealth’s progress in cancer control while also accomplishing one of the main goals in developing the Pennsylvania Cancer Resource Database, which is establishing the most comprehensive resource of cancer-related programs and services for Pennsylvanians

The benefits to organizations are clear First, organizations gain free advertising for their programs by entering them in the database Second, new PAC3 organizational members who wish to have access to the mapping functions will gain insight as to what is going on in Pennsylvania and be able to analyze how best to allocate their resources to meet the needs of their patients Third, PAC³ and the Pennsylvania General Assembly will gain knowledge about program availabilities and PA CCC Plan implementation efforts across the state which will help to better assess the impact of the PA CCC Plan on the cancer burden for the Commonwealth

The information and reports generated will enable PAC³ and the General Assembly to clearly see how its investment in cancer control is being utilized in the Commonwealth, where duplication of efforts exist, and where gaps in service can be identified and addressed

www.pac3.org

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Sample of Proposed Surveillance Study of Early Detection & Screening Resources in PA

PRIORITY GOALS AND OBJECTIVES

Awareness and Knowledge

GOAL A: All Pennsylvanians should be provided information about cancer screening guidelines, what

screening services are recommended in established guidelines, where screening services are available, and how to access screening services Health care systems, health care organizations, and health care providers should routinely deliver information about available screening services to patients eligible for screening and facilitate informed and value-based decision making by patients about screening service utilization Disparities in awareness of and knowledge about cancer screening services should be

systematically identified and addressed

Objective A1 - Increase public knowledge about cancer screening services.

Objective A2 - Increase provider knowledge of cancer screening guidelines and standards of care related

to follow-up

Objective A3 - Increase provider-patient dialogue about cancer screening services.

Objective A4 - Increase legislators' knowledge of cancer screening guidelines and standards of care Objective A5 - Increase requests for cancer screening services information by the general public and

populations at increased risk for cancer

Objective A6 - Decrease disparities in awareness and knowledge about cancer screening services.

A Sample of Organizations Implementing the PA CCC Plan

Abramson Cancer Center of the University of Pennsylvania

Erie County Department of Health

Kimmel Cancer Center - Thomas Jefferson University

Northeast Regional Cancer Institute

Pennsylvania Department of Health

UPMC - McKeesport

YWCA Carlisle

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Resources in Pennsylvania

67 Women-67 Counties: Facing Breast Cancer in Pennsylvania

625 Forster Street, Room 1011

Harrisburg, PA 17120

* PA Dept of Health

Alliance for Prostate Cancer Prevention

1089 Country Club Rd

Camp Hill, PA 17011

* PA Prostate Cancer Coalition

Annual Cancer Screenings

St Clair Hospital

1000 Bower Hill Road

Pittsburgh, PA 15243

* St Clair Hospital Cancer Center

www.pac3.org

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Resources in Allegheny County

Breast Cancer Education Series

Magee-Womens Hospital

300 Hallket St Pittsburgh, PA 15213

* UPMC Magee

Early Detection and Prevention Services

Hillman Cancer Center

5115 Centre Avenue Pittsburgh, PA 15232

* UPMC Cancer Centers

Family and Friends Support Group

2816 Smallman Street Pittsburgh, PA 15222

* Gilda’s Club of Western PA

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